StilMee Caregiver Connections

Delirium

2011-11-11T08:09:00.000-08:00

The prevalance of delirium in dementia is well known in the hospital setting as well as in the home setting. Delirium is a sudden change in cognition and alertness and has many causes. A change of environment that is confusing, such as being in an emergency room or inpatient setting, an infection that perhaps the person cannot describe its impact on him are two major causes of delirium. Sundowning, a common increase in confusion in the late afternoon is a form of delirium. Caregivers do well to plan a way to structure that time of confusion to meet the needs of the person with dementia. A quieter environment, few if any demands on the person cognitively, perhaps company that is calming (sitting with the person, walking with the person) may help. I have a theory that sundowning is like a toddler's meltdown in the late afternoon; being over-stimulated or having lack of stimulation impacts the ability of the person to cope with demands on him. In the hospital this might be a time for a snack, calming music or a staff member sitting quietly with the elder or walking the hall with him. Group activities should be soothing and fun rather than taxing cognitively. A sensory room might fill the bill for a patient that cannot tolerate a group.

Last Days

2011-08-27T11:28:00.000-07:00

Recently a former caregiver client I coached years ago, presented me with a book she and her dad wrote about the last year with her mom who had Alzheimer's and the first year of his being without her. I am anxious to find the time to read this story. It is called Her Final Year; a Care-Giving Memoir and His First Year; A Journey of Recovery. The authors are James Downey and John Bourke with Martha John and Kathi Bourke. Kathi was my coaching client. In the section How to Use This Book, the authors write,"...some of it is more than a little embarrassing. We have decided to share it, and show it as it was, because we deeply believe that it is extremely important that anyone entering into a care-giving relationship understand the reality of what they will likely experience. You will make mistakes. You will think you are going to go crazy. You will sometimes feel crushed by the isolation and stress. You will sometimes resent, or even hate, the person for whom you are caring. You will get into arguments with family and friends and say and do things you might later regret. These things are all completely normal human reactions to the situation you will be is."
This gives me courage again to write my second book; my journey with me mother in law Bette over 14 years until her death at 99 1/2 years of age in 2009. Thanks Kathi for reminding me to expose true feelings both good, bad and ugly at times, to help others who are going through the caregiving experience. It also is 2 books; the first exploring changes in attitudes and treatment of dementia and the second, a personal story. Perhaps because it has been almost 3 years I'm ready to finish it.

New Blog on Mental Health

2011-08-13T14:03:00.001-07:00

Please note my new blog focusing on understanding mental health and illness. It is a slight but important deviation from my educating about dementia. The new blog is www.coach-nurse.blogspot.com Visit it and post a comment. I'm going to try to post something each week. Now with my inpatient experience renewed, I have plenty to say.

Hospitalized Elders with Dementia

2011-08-13T13:31:00.000-07:00

I have recently taken a position as one of the nurse educators in psychiatry at a Boston hospital. I'm glad to be back in the thick of it and notice once again what a therapeutic milieu is for people with dementia. Research shows that it isn't really the ratio of staff to patients but the number of contacts the patient has with staff on any given day. This cements the practice of frequent connection with a confused and frightened elder reduces the likelihood of agitation and/or aggression. We've seen that aggression is most often the result of not understanding what is going on around them or misperceiving the intent of the caregiver. Smiling, connecting by calling him or her by their name, asking, "how are you today?'(the only open ended questions that is OK),making a positive comment about the person all go towards creating a therapeutic milieu (environment). Therapeutic communication is the practice of being clear, keeping eye contact, speaking slowly, simply and concretely. One patient who recently returned to the hospital after an outburst at the assisted living residence he had been discharged to,recognized staff's faces and voices but thought he had been on a cruise last time he was hospitalized. Sometimes delusions can be helpful I guess. Happily with the right dose of medication he was able to be returned to his new home at the residence.

FTD

2011-06-24T10:31:00.000-07:00

FTD or Fronto-temporal lobe dementia is different from Alzheimer's disease in that memory is intact for a while but other frontal and temporal lobe functions are impaired. The temporal lobe is responsible for understanding and using language so that is impaired. Visual hallucinations are not uncommon in the early stages of FTD as are tremors that mimic Parkinson's. These are called Parkinsonian symptoms, often mistaken for Parkinsons. Some have received a diagnosis of Parkinson's disease until things change. The frontal lobe, responsible for giving us social awareness, regulating impulsivity and mood, is also involved in FTD. The person may have mood fluctuations, impulsivity, and personality shifts. This is a hard disease on both the person affected and the caregivers. Caregivers, often overwhelmed with the changes that have occurred in their family member, need stability and this disease manifests itself in unstable ways. If you are dealing with FTD get as much information as you can. Join a FTD specific support group. Use the Alzheimer's Association 24/7 caregiver line. Google your state's Alzheimer's Association and get the number. The people who man the lines are well trained and available when you need them.

Care for the Caregiver...YOU

2011-06-24T10:15:00.000-07:00

Summer is here even though it doesn't look like it in New England; mid-60s and raining. I'm home with a nasty cold, laryngitis, ear infectiions, so my orienting at my new position in psychiatric nursing is on hold until I can hear adequately to do my job. I wonder how our body knows we are stretched to our limit? It does, though, and gets sick, laying us up to rest. I think that is what this sickness is all about. Caregivers, whether informal family caregivers, or professional caregivers (social workers, nurses, homecare aides, doctors), need to tend to their need for rest. If we don't pay attention, the body makes us take a rest. What happens to you when you are forced to rest? Can you give in and let nature heal you, or do you, like so many of the caregivers we coach here at StilMee, keep plowing along, not asking for help, and not able to give the attention to caregiving that they want.
This summer take stock of yourself. Do you take time for yourself to refresh and revive your energy? I used to say to myself, "I think I need an Abby fix." referring to delicious time with my granddaughter. An hour or so with an innocent child who expected nothing but smiles and hugs, made me feel whole again.
Whether it be visiting with family members or friends who are light-hearted and can laugh, reading a good book, listening to music, sitting outdoors doing nothing but gazing at the sky, or exercising at a local gym, you MUST take time away from your caregiver duties and refresh yourself. I've learned that when I'm sick, I stay out of work, trusting the place won't fold if I'm not there. As I give over the reins of StilMee to the coaches, I find the company runs well, I can see what strength and knowledge the coaches have without me, and my body heals. I hope you've learned this lesson too. It has taken me a long time but I learned. Practice taking care of yourself. It will pay off generously.
BEv

Missing too long

2011-05-30T14:37:00.000-07:00

I can't believe it's been two months since I blogged. At StilMee we've been busy with presentations, trainings (there is one in Tiverton Rhode Island on June 11), and welcoming a new coach for Plymouth and Cape Cod. I'm also re-entering the psychiatric nursing field in an effort to regain patient contact. My first love is psychiatry; I learned so much about behavior management psychiatric nursing. I plan to work with elders with mental health issues and dementia. I can practice and perfect my skills in working with this population. My goal; to empower each to be in control of his or her own life to the greatest safest extent possible.
We coaches are working on a 'memory' handout which I'll add to the blog. It discusses the types of memory (working, episodic, semantic and procedural), their normal function, the impaired function and the appropriate approaches/interventions that will help the person function better. To whet your appetite for new knowledge, the working memory and episodic memory are impaired in memory loss, the procedural and semantic can be tapped with cues both visual and auditory. I'll share more as I get the handout edited and checked for accuracy and readability. I promise I will blog before another 2 weeks has gone by. I'll share my new journey into psyciatric nursing; what I am learning and what the patients are teaching me about what they need.
Good to be back.. I just returned from eight days bare boating (the boat is bare, not the sailor and first mate!) It was a restful and exciting time to relax before the next leg of my journey into caregiving...Bev

Mental Illness and dementia

2011-03-24T13:12:00.000-07:00

I have been asked more than a few times to speak to the prevalance of dementia in the aging person with mental illness. Looking online, I see little to help me. I've connected with a few mental health doctors to help me. Remembering my years of nursing in mental health units I'm not sure how much dementia I saw co-existing with mental illness. I remember at Deaconess Hospital there were people admitted to figure out whether the behaviors were from depression or dementia. Often once the depression cleared with treatment, there was little sign of dementia. I know people with late life depression are more prone to dementia, but I wonder about other disorders people suffer with for years, like bipolar disorder, schizophrenia and personality disorders. If anyone has experience in this field more recently than 10-15 years ago (like mine), let me know. Comment on this posting. I will continue to research this subject

Time Slips

2011-03-17T09:12:00.000-07:00

I read in the Dementia Weekly last week about an activity for persons with dementia called Time Slips. The idea is to free the person from having to recall anything but what he or she wishes. This activity captures imagination. The example given was that the leader took a picture of something, in this case the Marlboro Man, and asked the participants to make up a story about him. "Do we call him Smokey?" What does he do for work? and so on. The activity lasted one hour with rapt attention. Nothing said would be wrong. It was a fun activity and called on creativity and what they wanted to remember. Great idea!

Siblings and Caregiving

2011-03-08T11:50:00.000-08:00

Home Instead Senior Care's March newsletter addresses the challenges for siblings to share the care of a parent. It starts off "Sharing isn't always easy for sibs who grow up under the same roof. Divvying up the toys, bedrooms or vehicles may have been a challenge at your house, and sharing the daily chores could have led to familly conflict as well. Some things never change." The article goes on to say that 43% of families 'elect' one primary caregiver. In only 2% did sibs share the care.
There is a website for such families that offers good advice. www.solvingfamilyconflict.com
It is funny that this comes out this month as my team and I are taking a full day to study how families operate differently and how this impacts the crisis of an Alzheimer diagnosis. With many years of experience working with families in crisis, this was a welcome request from the team. I've been very impressed that none of the coaches has gotten entangled in a family's dysfunctional responses to crises. They are able to stand back, listen, and observe how individual members view their part in the caregiving and gently offer suggestions based on the members' willingness and abilities. One of the coach's families has routine conference calls with her to address present challenges. The family of brothers comes with an agenda. This makes it easier for the coach to be helpful NOW.
I think of caregiving involvement like a marriage. Each has to give 100% of what they are able to give. Regular conversation about changes, flexibility, planning together for 'what if' situations (like illness of the primary caregiver), and honesty about what each will offer are all great steps towards successfully working together.
If you have tips on how your family has worked together well or not, let us know. I know for my caregiving experience with my mom, each of my 2 sisters had a role that she could and was willing to provide. It was all clearly spelled out, making expectations clear. It helped a great deal and minimized bad feelings.

Communication

2011-02-28T09:22:00.000-08:00

What is communicating anyway? It is everything we do or say that conveys a message to another. It may be a word, a look, a position of the body or an action. Think of all the ways we convey our wants, needs and feelings to others.
Like a child is, a person with a cognitive disorder is a very keen observer of behavior. As a caregiver we need to remember that affect is contagious. Smile and the world smiles with you the song goes. A smile goes a long way toward working well with a person who has a hard time making his needs known. Taking time conveying something to that person is essential. Speak slower, simpler. Maintain eye contact. Relax your body. Watch what you do with your arms and hands. Are they conveying the message you want? Crossed arms denote impatience. Arms relaxed by your side with your hands outstretched palms up denotes invitation. You can change a potentially volatile situation around by adjusting your body stance.
What about your words. Are they spoken sharply or softly. You've got to eat now is less inviting than Come with me; I've made something good to eat.
Don't beat up on yourself but observe how you relate to your family member with Alzheimer's. This is called cognitive awareness; studying yourself and your behavior. If you find your approach evokes a negative response (fear or irritation), try a different softer approach and see what the difference is. In working with mentally ill persons I learned I could work more easily with them when, aware of their being distracted by voices in their head or having negative thinking, I could minimize their angst by my approach. Relax; go slow. Slow down to the speed of LIFE; theirs.

Caregiver Education a Must

2011-02-14T08:45:00.000-08:00

I can't believe it has been almost a month since my last entry. Between tending to my family's needs and preparing for trainings and presentations, I've just let the time get away from me. The response we are getting for the need for education in working respectfully with those people with memory loss is both gratifying and a bit overwhelming. I've studied Alzheimer caregiving for so long I go to give a talk and think, 'surely everyone already knows this'. And then I find out that is not true. As a nurse I wondered how people managed their illness once home. Do their caregivers know what to do? Do they know how to care well? For example, having a baby in a hospital and having a nurse fetch bring him to you every 4 hours is a lot different from having that baby 24/7 and fitting the rest of your life in. I saw families take home someone with mental illness from the units I worked on and decided they needed education about the illness. I started a Family Educational Service. It was so well received, I did the same for families caring for someone with Alzheimer's. The difference of course is that the person with a cognitive disorder often cannot be fully participating in decisions about care. They often don't believe there is anything wrong with them at all. This is where education about how a person with dementia thinks is so very important. When families learn this they are so enlightened as to the reasons behind the changes in behavior. It lightens the load of guilt, frustration and anxiety. If you haven't read my book Matters of the Mind...and the Heart, do so. You will learn how people with memory loss think differently but they are still there. The mind is not the same as the brain. The brain is an organ. The mind is everything the person is. We must learn how to tap the mind, the person's personhood.

A Born Caregiver?

2011-01-26T11:07:00.000-08:00

Are there born caregivers do you think? There are people who seem to just come forth to help, to care when they see the need. Most mothers are like this, never ceasing being a mother to her children even if they are 40 or 50 years old!
I won't be posting for a week, for example because I'll be in Michigan with my 44 year old son having surgery to repair damage to his neck during a rollover accident last June. Does he need me there? I'm not sure, but I know I need to be there to support, comfort and be a present familiar face.
I honor Alzheimer caregivers who did not volunteer for the job of caring, but found themselves elected either by the majority (usually siblings) or by default. Most seem to be willing to learn how to care well and listen to the instruction a coach gives them. That is why I wrote my book Matters of the Mind...and the Heart and why I continue to do this work. I've got 5 empathic knowledgable women who continue to help caregivers understand and manage this disease. I see that they are natural caregivers for their own family as well. I guess there are born caregivers. Thank God for them.
I'll be writing again after February 4th. Until then care well.

More about presenteeism

2011-01-14T12:02:00.000-08:00

I can't believe I haven't written in 14 days! Amazing what a few days of snow will do to slow a person...and a business down. We had to postpone a training, and it took an hour and a half to make a 45 minute trip to McLean Hospital to present the research on caregiver education and support to the team on the geriatric unit. It was worth the trip as the team was encouraged by coach Penny and my stories of successful teaching of Alzheimer caregivers. Both Mittelman and Tremont studies show that coaching the caregiver(s)in workable approaches to care delayed long term placement up to 1 1/2 years! That is a savings for the government and helps maintain the comfort of home and family for the person with dementia.
As a company we hope to show research (there is plenty) to large companies with Employee Assistance Programs that offering employees who are caregivers support can benefit the company financially. Research states that when supported and educated about resources, employees are able to improve work productivity by a large margin. When an employee is a caregiver his mind and heart are often not present at the job. We call this presenteeism; the body is there but the spirit is preoccupied with that someone at home who is not able to care for themselves adequately. Leaving early or coming in late as well as making numerous check in phone calls reduces the number of hours the employee is giving to the company. When caregivers who are employed utilize geriatric care managers, one study said, they were more relaxed at work, free from worry, and could give more to the job. Coaches can offer the education needed to 'get mom to the day program' or work with the in home help in a more effective way.
If people know of anyone in a large company like Raytheon, Staples, Fidelity, John Hancock Insurance or the like, let me know. They need to solve the presenteeism problem.

New Year 2011

2011-01-01T10:34:00.000-08:00

I am not a New Year resolution type at all. However, I'm recommending you all make this a year of educating yourselves about Alzheimer care. I am going to continue in my search for the best information to train caregivers with. New trends, new learnings are on the rise, making care for the person STILL HERE to thrive. Many persons with Alzheimer's rate their quality of life much higher than their caregivers give for a rating. That's because the caregiver is blindsided by the losses and personalizes it. 'What would I feel if I couldn't do that any longer?' they ask themselves. The person with Alzheimer's may not even be aware of much of his losses. I think the best thing they do is live in the present, so if the caregiver can learn how to make each 'present'meaningful and anxiety free, the person is happier. So will you be. So Happy New Year to learning! I'll share some of my learnings with you blogspot.com readers. Thanks for coming onboard!

Alzheimer's speaks out; Listen Please!

2010-12-29T13:03:00.000-08:00

A tremendous meeting of people with Alzheimer’s energizes efforts to better their world.

A remarkable conference of people experiencing Alzheimer’s energized efforts to improve their lives. Organized by Jay Smith and Richard Bozanich, two driven men in the early stages of Alzheimer’s, the October 27 event packed Los Angeles’ Skirball Cultural Center. Even the week-long drama of massive L.A. fires which caused the evacuation of over a million people did nothing to deter participants, and many were turned away because the seats sold out.

The Alzheimer’s Association was the conference’s backer, and Peter Braun, its Chapter President, opened by stating, “This is the largest gathering of people with dementia in our country.” He was followed by Smith and Bozanich, who drew a standing ovation as they called on Americans to hear the voice of early-stage Alzheimer’s.

They were followed by speakers calling for practical and immediate improvements to the current state of affairs: doctors to become better skilled at diagnosis, therapists to be better educated in ways to help them live well, and society at large to be better informed on how to relate to and be supportive of them. The conference received a lot of publicity. PBS and HBO crews were on-site, and the Alzheimer’s Association will be turning footage into a presentation they plan to take on the road nationwide.

All this publicity will get some very important messages out to the world. Here are a few.

The Message to Doctors: Get the Best Diagnostic Training

Clinical diagnosis in the early stages of Alzheimer’s requires experience and skill. No doctor wants to risk misdiagnosing ordinary aging, unrelated illnesses, or medicinal side-effects as Alzheimer’s. The result is intense caution by doctors about offering a diagnosis. When someone notices a symptom that might indicate Alzheimer’s, it could be a long road until the doctor makes a clear diagnosis.

Yet an early and accurate diagnosis means so much to people. People shared their journeys with this reality. (Paraphrased)

•“I was aware I was slipping at work. I could not contribute ideas at meetings anymore. I went into my office and just stood there, not knowing where to start, even though I knew there was a lot to do. I thought it was stress, so shifted to a simpler position but could not learn its tasks. I felt scared. One day I called in sick and never went back. From there it was a long and bumpy road to diagnosis.”
•“I had eight diagnoses in 18 months. Time after time, doctors said ‘It could be…,’ ‘It could develop into…,’ ‘You have a risk for…’ It was very difficult to live with this vague information.”
•“As long as I had a diagnosis of mild cognitive impairment, my doctor did not give me medications. I needed to be diagnosed with AD to get them.”
•“Compensating for my subtle impairments fatigued me so much, I ended up spending two days in bed after what used to be routine business trips. I had to retire and start a long search for diagnosis.”
These calls for doctors to be better educated in the latest diagnostic techniques and tools were significant moments. A formerly vague complaint has now crystallized into a firm voice.

The Message to Everyone with Alzheimer's: Choose to Live Life

Immense victories in the Alzheimer’s fight were brightly seen in stories people told about their lives after diagnosis.

•“I accepted it right away. I reassessed my life and priorities, began to plan and accommodate, and made some commitments about judgment.”
•“At first I was in a dark phase. Then advocacy became important. I met people in a similar situation who have become a family of sorts. I will not lead a stigmatized life.”
•“I joined a memory club, participate in research studies, took up ceramics, and put in a 600-gallon pond in our backyard. I take care of my mother, who has AD and lives with us. I try to focus on the positive and the beauty of each day.”
•“We moved into a smaller house. We simplified our life. I gave up handling our finances. I try to adopt routines of exercise and healthy living, and I found an unexpected spiritual gift in recognizing where I am in life and living fully what I have left.”
These are very different voices than those described from the past. In an interview, Bozanich noted, "My mom's uncle Irwin got this, and we never saw him again. I didn't want the same thing to happen to me, to be sequestered away like people are ashamed of me. I didn't want to go quietly." This conference was an affirmation that things are different today. The message: People with Alzheimer’s can do so much, both spiritually and physically. They are very alive and can make great choices about how to live. Says Smith, “There’s still a lot of good living to do.”

The Message to Family and Friends: Relating Right Requires a Little Learning

No less important were the simple tips of social queues to the broad circle of people close to those who have Alzheimer's.

•“People with early-stage dementia resent the term ‘caregiver’. We prefer ‘care partner’ because, for the most part, we can still take care of ourselves very well, thank you.”
•“Be patient. It makes a world of difference.”
•“Accept it. We go through a tunnel of denial at first. When we come out the other end and have found acceptance, accept along with us. Don’t make us insist and explain that we do have a problem.”
The reach of these messages promises to be truly great, what with so much media attending the conference, and the Alzheimer's Association videoing it for display across the country, .

Elyse Salend, a specialist on aging who works for the grant-giving Archstone Foundation, said, "I felt awed by them, by their courage. They're not hiding out. They're trying to make the world better for all of us."

Mr. Bozanich is leaving the success of this conference with a crystal clear mission. "As long as I'm able to talk about it," he said, "it's important to speak out about what it's like to live with this."

How to talk to your family member with Alzheimer's

2010-12-29T12:07:00.000-08:00

Reading this article from Dementia Weekly, I am reminded that communication is EVERYTHING in Alzheimer care. Relating well to the person in a calm reassuring way can allay fears. So much of everyday life becomes confusing for them; they need us to tell them simply what is happening, what is expected now (not later, always stay in the present) and that you will keep them safe. Invite them to come with you; don't order them to come. "We're having dinner now. I'd like you to join us. Please come with me." There will be less resistance to care as the article below suggests.

Chicago - Adults with Alzheimer's in nursing homes who are talked to like children are more resistant to care, according to new research reported today at the 2008 Alzheimer's Association International Conference on Alzheimer's Disease (ICAD 2008) in Chicago.

As effective pharmaceutical treatments and prevention for Alzheimer's remain elusive, some researchers are focusing their efforts on improving quality of life and care including communication. One study determined that there is a correlation between how nursing home staff communicates with residents who have dementia and the residents' subsequent resistance to care. Another investigated how families work to maintain normalcy and coherence during dinner time conversation when a family member with Alzheimer's is included.

"The style of communication that we use with people with Alzheimer's influences how they feel about themselves and how well they respond to those providing care," said Sam Fazio, PhD, Director, Medical and Scientific Relations at the Alzheimer's Association. "With the growing prevalence of Alzheimer's, it will be increasingly important for healthcare providers, caregivers and families to understand the effect Alzheimer's has on communication and, perhaps more importantly, the impact their communication may have on the individual's quality of life."

January's column

2010-12-27T10:25:00.000-08:00

It is still blowing snow here in Boston and I've got to get to work on my column for January 2011. I'm calling it New Beginnings. I'll expand on the idea of looking at Alzheimer's progression as new beginnings rather than losses. We all experience losing abilities or opportunities throughout life; why look at the ones of Alzheimer's as catastrophic? Life is a learning experience; so is Alzheimer's. Noting changes in a family member should trigger the need to learn something new to help that person remain in charge of their life. I've met families who meet each new 'beginning' with courage and determination to normalize their family life to the extent possible. Although this disease is wrought with emotion, caregivers can turn it into a life journey. Life is full of hope and humor, which Bob Stern MD at BUAD Research Center says caregivers need (both) to thrive through Alzheimer's. People have accused me of being too positive about this caregiving thing. One blog reader was angry with me for this. Well, so be it. I found in being a caregiver for both my inlaws that I developed a heart for caregiving them. Finding humor in the often ridiculous happenings in a day of caregiving is essential. Try it.

Rosemary for Alzheimer's

2010-12-27T10:21:00.000-08:00

This is an article from Dementia & Alzheimer Weekly, a great resource of information.
"Rosemary contains more than a dozen antioxidants and a half-dozen compounds reported to prevent the breakdown of acetylcholine. It's fabulous that the classical herb of remembrance has so many compounds that might help people suffering from Alzheimer’s."

These are the words of Dr. James Duke, former U.S. Department of Agriculture (USDA) Chief of Medicinal Plant Research. Dr. Duke is one of the world's leading authorities on medicinal plants. He helped build the USDA database that demonstrates how rosemary may slow the progress of Alzheimer's.

His strong advocacy of rosemary has to do with a chemical called acetylcholine. Anyone who has lived with Alzheimer’s in the past decade has heard of Aricept. Aricept is a medicine that does one thing: it inhibits acetylcholine.

So does rosemary.

Dr. Duke said that when he learned of the new medications that fought Alzheimer’s by inhibiting acetylcholine, “I probed my U.S. Department of Agriculture (USDA) database for herbs with phytochemical constituents that were also reported to prevent the breakdown of ACh (acetylcholine). Even though I myself had been the source of the overwhelming proportion of the data in the database for more than a decade, I was surprised at the output. The database yielded about a half dozen anti-AChE (acetylcholine) compounds, with Rosmarinus officinalis (rosemary) the proud winner in terms of their numbers and potencies.”

Richard Taylor PhD His thougts on being someone with Alzheimer's

2010-12-20T15:05:00.000-08:00

ITEM OF INTEREST: ARTICLE

It is always startling to me when someone I know, even if only through some make-believe roles in make-believe movies, dies and has been prior to her/his death living with a diagnosis of Dementia - probably of this or that type.

Someone found the press release Mr. Heston read announcing his diagnosis - and I just read it. Reading Charleton Heston's announcement that he had been diagnosed with Alzheimer's disease reconfirms for me that many, too many individuals, even those diagnosed with the disease see the diagnosis as the start of a long good bye.

We announce and prepare ourselves and others for the fact that we have already started to fade away. It started the moment someone in a white coat told us "You have Dementia, probably of this or that type, and certainly with these features." I'm on my way out! It's all downhill from here! Don't look for me anymore; I'm going to be busy fading away and not being me.

We are seldom seen by others post-diagnosis. We seldom speak up or speak out post-diagnosis. After all, we are fading away. What could we have worthwhile to say? Could we possible grow as a human being after we have been diagnosed? We become someone we would be embarrassed to be, were we capable of appreciating who we had become!

Are we? Will be embarrassed for ourselves? Who is embarrassed for whom? How do you know I'm not accepting, perhaps even content with who I am today? Even if I'm sometimes frustrated. Even if I'm sometimes agitated. I'm still me!

Isn't it time others who don't live with the diagnosis focus their energies on understanding, appreciating, supporting, enabling those of us who do live with diagnosis? Don't concentrate on who we were. Don't try to convince us we should hang on to yesterday, or last year, or fifty years ago – when we are struggling to understand today!

Wouldn't it be easier to love someone we believed was a whole person, instead of someone half empty? Instead of someone who is literally a shell of who they were?

Is it any wonder people find us hard to love when they find us so hard to understand? To appreciate us for who we are? To accept our changes, our symptoms, our forgetting and confusion? Of course it is. Some people with dementia and many caregivers keep saying good-bye. I, and I honestly believe every other person living with and in dementia need to hear, feel, and be supported by saying "Hello!"

This is not an issue just for those in the late stage of the disease, nor just for those in the middle stage of the disease. It starts the day the diagnosis is pronounced. Collectively, and individually we need to find the courage, the support, the understanding to say "hello" to ourselves and each other.

Every day! Every day! It's that simple! It's that easy! Reduce stress, increase love you give and receive, enjoy and live in today.

"Hello,"

Richard

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More on Guardian and Conservator Responsibilities

2010-12-18T13:34:00.000-08:00

After my last post I realized I had posted some information on this subject a few days or weeks ago. To add to your knowledge, here is what Attorney Leanna Hamill had to say in her newsletter.

On Guardian and Conservator Responsibilities
Attorney Leanna Hamill provides estate planning and related legal services to clients of all ages, with a focus on the needs of older individuals and their families.
160 Old Derby St., Suite 456
Hingham, Ma 02043
Phone: 781-749-2284 begin_of_the_skype_highlighting 781-749-2284 end_of_the_skype_highlighting Fax: 866-573-6429
Leanna@HamillLawOffice.com

Responsibilities of a Guardian & Conservator
Written on December 6, 2010 in Guardianship
Have you thought about pursuing guardianship or conservatorship over an adult family member who you believe can no longer handle their affairs? A guardianship is a legal relationship created by a court between a guardian and her ward, usually an incapacitated adult. The guardian has a legal right and duty to care for the ward. A conservatorship is a like a guardianship but refers only to property.

After you are appointed by the Court, you have a lot of responsibilities to properly carry out your duties. Here are some of the ongoing responsibilities of a guardian and conservator:

•Filing a report with the Court at 60 days and annually outlining your plans for the ward, their care, and their property,
•Filing a yearly report with the Court outlining the ward’s living situation, medical condition, how often you’ve visited them, what services they are receiving and related issues.
•Caring for the ward – making health care decisions, living decisions and decisions about how to manage their property for their benefit,
•Involving the ward as much as possible taking into account their condition and circumstances,
•Filing Roger’s Monitor reports annually, if you are also appointed in that capacity,
•In the case of a Conservatorship, fileing annual accountings showing what has occured over the last year with the property you are managing,
•Responding to any requests from the Court for more frequent recording.
A guardian or conservator is always subject to the oversight of the Court and can be penalized for failing to properly account for funds and monitor their ward.

(The term “ward” is used here for convenience. The legal term for someone under a guardianship is “incapacitated person” and for someone under a conservatorship is “protected person.”)

________
Estate Planning, Probate and Trusts involve complex areas of law. Individual circumstances must be considered before any advice can be given. The general information above is not to be construed as legal advice, which can only be given after consideration of the unique facts of each matter. Please seek the advice or counsel of your attorney, financial advisor or CPA as it may be appropriate.
Posted by Coach Licensor Beverly at 12:33 PM 0 comments
Labels: From Leanna Hamill's blog
Friday, December 3, 2010

Today's radio interview

2010-12-18T13:18:00.000-08:00

Greg Porell's show on WATD is worth an ear. If you're out of the area, log on to www.Southshoresenior.com and you can catch on. Judy Flynn Esq. was on talking about some of those legal jams people get themselves into due to lack of education. For example, if you are called on to be a guardian or conservator for someone, what is entailed? What are your responsibilities, your obligations legally? She mentioned a website that can help. It is www.massguardianship.org. There are explanations of guardianship and some downloads to take advantage of. She can be reached at www.thelegalcheckup.com for specific help. I mostly listened the first part of the show as I need to learn as well.
My part of the show is the segment once monthly called Matters of the Mind, the same title as my column, also available at www.southshoresenior.com. It is a fun show; Greg makes it so with his easy going nature. I spoke about New Beginnings; that in the course of Alzheimer's there are new beginnings as loss of function is recognized. It is a time for new learning to meet this new challenge. With every loss there is a new beginning; that is life. Probably in the Alzheimer caregiving journey it is more poignant as we are apt to think, I've never done it that way before. But do it a new way, you must, if you are to have an easier journey. The coach can help through all the new beginnings as can support groups. Our coaches run five support groups, so they are aware of the changes that take place in a person with Alzheimer's.

How is dementia and Alzheimer's alike or unalike?

2010-12-13T13:51:00.000-08:00

Every time I present a talk on Alzheimer's disease, someone asks the question "What is the difference between dementia and Alzheimer's? Or are they the same?"
This is an exerpt from this week's Alzheimer and Dementia Weekly.

Dementia is not a specific disease. It is a descriptive term for a collection of symptoms that can be caused by a number of disorders that affect the brain. People with dementia have significantly impaired intellectual functioning that interferes with normal activities and relationships. They also lose their ability to solve problems and maintain emotional control, and they may experience personality changes and behavioral problems such as agitation, delusions, and hallucinations. While memory loss is a common symptom of dementia, memory loss by itself does not mean that a person has dementia. Doctors diagnose dementia only if two or more brain functions - such as memory, language skills, perception, or cognitive skills including reasoning and judgment - are significantly impaired without loss of consciousness.

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www.healthcareinsights.com article on Omegas

2010-12-11T10:10:00.000-08:00

THIS ARTICLE IS PART 2 of "Oh My...Omega's! and focuses on Food Sources and Supplements

Omega-3 fatty acids make up a major part of brain and body cells but can only be ingested, not made by our bodies. Omega-3s are important for building brain cell membranes, dendrites and synapses. They are also anti-inflammatory, and thus helpful for preventing or managing a variety of diseases. Choose fish (3 or more x a week!), seafood, fish oils, green leafy vegetables, walnuts, flax seeds, and purslane.

What are the Types of Omega-3's?

There are two major types of Omega-3 fatty acids:

alpha-linolenic acid (ALA), which is the plant form,
eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) which is the marine or "sea" form. EPA and DHA are found in fish, algae and all seafoods and in grass fed and free range animals and poultry.
It is the marine form, DHA and EPA, that help make up our own brains and bodies cell membranes and other components, not ALA, the plant form.

Food Sources of Omega-3's

ALA is found in vegetable oils such soybean, canola (rapeseed), and flaxseed, pumpkin seed, hemp seed, and perilla seed oils. Other sources of ALA include flaxseeds, pumpkin seeds, chia seeds, wheat (especially wheat germ), hemp, soybeans, tofu, walnuts, kidney beans, purslane, and green vegetables such as kale, spinach, Swiss Chard, collard greens, Brussels sprouts, Chinese cabbage, bok choy, mustard greens (and all of the other types of Chinese green vegetables), grape leaves, cauliflower, and salad greens.

Most foods rich in ALA also contain vitamin E which is one of nature's primary ways of preventing oxidation of the delicate Omega 3's. It is vitamin E in its multiple forms that also helps protect from oxidation the Omega 3's in our brain cell membranes and dendrites! (see our website and previous article about Vitamin E).

Purslane, though considered an exotic weed in the US, is frequently eaten as a leaf vegetable in Europe, Asia, and Mexico. Not only is purslane a rich source of ALA (1 cup of fresh leaves contains about 300 to 400 mg), but it is also a source of Vitamin A, Vitamin C, some B vitamins, magnesium, calcium, potassium, and iron. Some types of purslane are now sold as flowering plants; these are also edible.

What are the fish and animal sources of Omega-3's?

EPA and DHA are found mostly in marine sources, especially in higher-fat, cold-water varieties of fish such as salmon, mackerel, albacore tuna, sardines, Atlantic herring, swordfish, and lake trout, as well as in algae and krill...so today they are referred to as "marine" Omega 3's.

Surprising to many, PASTURE-RAISED (Free Range or Grass-fed) beef, lamb, and other animals, poultry and free-range chicken's eggs are also rich sources of "marine" Omega 3's including DHA and EPA.

Sixty percent of the fat content of grass is ALA Omega-3 fatty acid. When animals consume grass and green leafy "weeds," their flesh contains both ALA and the "marine" forms of Omega 3's. Just like humans, cattle convert the ALA they consume into EPA and DHA forms of Omega-3's; an analysis of grass-fed beef shows that EPA is the most prevalent Omega 3. ALA is the second most prevalent Omega-3 in grass fed beef with DHA the least abundant. But when transferred to the feed lot to be fattened on grains, the Omega-3 content rapidly diminishes until after just a few months in the feed lots, it is mostly gone. Animals fed only grain have high levels of Omega 6's and very low levels of Omega 3's in their flesh... or milk or products made from animal milk.

Some varieties of eggs are Omega-3 enriched, with either ALA or DHA/EPA depending on what the chickens are fed, and whether they are free-range. Feeding chickens flaxseed and canola (rape) seed and greens increases mostly ALA content while feeding them algae and seaweed increases EPA and DHA content of the eggs.

Thus if you do eat animal foods, and you can afford it, go for the grass fed and free range beef and lamb, and free range chickens, and/or Omega-3 eggs, and milk and cheese from grass fed cows. This is especially important for meat lovers who are not eating enough vegetables!

How often should I eat fish and seafood?

The Memory Preservation Nutrition (MPN)® program recommends eating fish at least three times a week and ideally some fish, seafood and/or marine oil (from fish, cod liver, or calamari) every day of the week.

The MPN™ does not emphasize just oily or fatty fish, even though they are higher in Omega 3 fatty acids, for several reasons. The most important reason is that many non-oily fish also are relatively high in Omega-3's and other important nutrients, and it is key that people try to eat fish that they enjoy eating.

What about contaminants in fish?

Though some fish contain mercury and other toxins the USDA and nutritionists say it is still safe to eat as much as 12 oz/week of those with problems (i.e. some domestic salmon, and those with higher mercury levels such as tuna, swordfish, and shark). However, pregnant women and small children are, as of late 2008, still cautioned by the USDA to avoid these particular fish.

Even more important though, pregnant women and small children need to consume fish, seafood, and fish oil to foster adequate brain and nervous system development for the fetus and child. There is indication that inadequate Omega-3's in mother (during mother's pregnancy and lactation) and child can result in poorer cognitive performance in school would otherwise be the case. See http://www.hsph.harvard.edu/nutritionsource/what-should-you-eat/fish/index.html for a discussion of how to achieve the benefits of fish while reducing any risks.

Benefits of Supplements

Omega-3 supplements are an important way to ensure that you are getting enough Omega-3 fatty acids for optimal brain and body health. The preferred form of supplementation is DHA and EPA from fish oils, cod liver oil, or calamari (squid) oil. Calamari oil is excellent form rich in DHA and EPA, especially for those with fish allergy concerns (or worried about sustainability of our fish supplies).

Typically the amount recommended depends on the primary reason you are taking the supplement. A general recommendation is to take enough of a supplement to ingest between 600 mg to 3g of combined DHA and EPA daily. Be sure to read the label as supplements have variable amounts of the "active ingredients" of DHA and EPA depending on the brand and type of oil or capsule. Thus to achieve these amounts you might need to take two to four or many more of 1000 mg (large!) soft gels, or 1-3 teaspoons of an oil a day. Be sure to let you doctor know if you are taking more than 3g of the active ingredients (DHA and EPA) because Omega-3's thin the blood (thinning the blood is generally a good thing but may interact with other medical regimens you are pursuing, e.g. coumadin). Also be sure to purchase brands known to provide contaminant-free oils; the better companies have lab analyses proving "no detectible levels" of mercury, pcbs and dozens of other possible contaminants; these companies also properly process and package oils and capsules to prevent oxidation and spoilage.

Vegetarian alternatives include algae derived DHA/EPA or 2 Flaxseed Oil 1000 mg softgels (which typically each contain 450 mg ALA Omega-3). However, this is less optimal than supplementing with oils of a marine source because flaxseed oil contains the shorter chain ALA Omega-3 that needs to be converted by the body to DHA or EPA, and this is done much less efficiently as we age.

How do I find out what is best for me?

Dr. Nancy Emerson Lombardo can be reached by e-mail or phone for inquiries about what supplements would be best for you personally, and which brands are best. She also offers preferred nutritional supplements including some Omega-3 products through her website or by phone or email.
www.healthcareinsights.com

Resources

2010-12-10T11:58:00.000-08:00

Perhaps because I'm in the field, but I get several good resources about different kinds of dementia, their treatment and the research being done. One is John Hopkins newsletter; another is Alzheimer and Dementia Weekly. If anyone wants contact information, write me @ beverly.moore@stilmee.com.

An article on Lewy Body Dementia in Dementia Weekly

2010-12-10T11:57:00.001-08:00

What is Dementia With Lewy Bodies?
Dementia with Lewy bodies (DLB) is one of the most common types of progressive dementia. The central feature of DLB is progressive cognitive decline, combined with three additional defining features:

1.Pronounced “fluctuations” in alertness and attention, such as frequent drowsiness, lethargy, lengthy periods of time spent staring into space, or disorganized speech;
2.Recurrent visual hallucinations, and
3.Parkinsonian motor symptoms, such as rigidity and the loss of spontaneous movement.
People may also suffer from depression.

The symptoms of DLB are caused by the build-up of Lewy bodies – accumulated bits of alpha-synuclein protein -- inside the nuclei of neurons in areas of the brain that control particular aspects of memory and motor control. Researchers don’t know exactly why alpha-synuclein accumulates into Lewy bodies or how Lewy bodies cause the symptoms of DLB, but they do know that alpha-synuclein accumulation is also linked to Parkinson's disease, multiple system atrophy, and several other disorders, which are referred to as the "synucleinopathies." The similarity of symptoms between DLB and Parkinson’s disease, and between DLB and Alzheimer’s disease, can often make it difficult for a doctor to make a definitive diagnosis. In addition, Lewy bodies are often also found in the brains of people with Parkinson's and Alzheimer’s diseases. These findings suggest that either DLB is related to these other causes of dementia or that an individual can have both diseases at the same time. DLB usually occurs sporadically, in people with no known family history of the disease. However, rare familial cases have occasionally been reported.

Is there any treatment?
There is no cure for DLB. Treatments are aimed at controlling the cognitive, psychiatric, and motor symptoms of the disorder. Acetylcholinesterase inhibitors, such as donepezil (Aricept) and rivastigmine (Exelon), are primarily used to treat the cognitive symptoms of DLB, but they may also be of some benefit in reducing the psychiatric and motor symptoms. Doctors tend to avoid prescribing antipsychotics for hallucinatory symptoms of DLB because of the risk that neuroleptic sensitivity could worsen the motor symptoms. Some individuals with DLB may benefit from the use of levodopa for their rigidity and loss of spontaneous movement.

What is the prognosis?
Like Alzheimer’s disease and Parkinson’s disease, DLB is a neurodegenerative disorder that results in progressive intellectual and functional deterioration. There are no known therapies to stop or slow the progression of DLB. Average survival after the time of diagnosis is similar to that in Alzheimer’s disease, about 8 years, with progressively increasing disability.

What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to DLB in laboratories at the NIH and also supports additional research through grants to major medical institutions across the country. Much of this research focuses on searching for the genetic roots of DLB, exploring the molecular mechanisms of alpha-synuclein accumulation, and discovering how Lewy bodies cause the particular symptoms of DLB and the other synucleinopathies. The goal of NINDS research is to find better ways to prevent, treat, and ultimately cure disorders such as DLB.

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My blog

2010-12-06T14:36:00.000-08:00

I will be posting articles of interest to caregivers in addition to my own. I would appreciate your feedback on this decision. I'll also post some excerpts from my second book, untitled as yet. Comments on any or all entries is appreciated.

FTL Dementia update from Dementia Weekly

2010-12-06T14:35:00.000-08:00

Frontotemporal dementias are a set of devastating, progressive diseases. They attack the parts of the brain responsible for judgment, empathy, and social behavior. People with FTD often develop personality changes, make ruinous financial decisions, become sexually inappropriate, or engage in compulsive behavior. Some patients with AD exhibit some of those behaviors, too; however, with FTDs they are front and center. Some forms of FTD rob people of normal speech, while others impair movement, similar to Parkinson’s disease and amyotrophic lateral sclerosis. FTD typically strikes at younger ages than does AD, often in a person’s late forties or fifties. It involves less memory loss than AD, but much worse behavior problems. Patients, in early stages of FTD, often seem indifferent to what would be a mortifying situation for a healthy person.

The disease is particularly devastating to families, said Susan Dickinson, who heads the Association for Frontotemporal Dementias, because it often goes unrecognized or misdiagnosed. Families, therefore, have no recourse if a spouse with FTD blows all his or her money on a sports car, or makes advances to a neighbor, since the spouse is not recognized as ill. Friends may withdraw because of the rude or disturbing behavior of the person with FTD. “Living with these diseases is incredibly isolating,” Dickinson said. “These families are losing their loved ones, and nobody will listen. We have a lot of people who get divorced.” Earlier diagnosis of the disease would help families to understand and cope with what is happening, Dickinson said. “As soon as there is a medical diagnosis, a lot of people get right back together to care for their spouse.”

FTDs are fairly rare. Scientists estimate as many as 20,000 Americans suffer from them, said David Knopman of the Mayo Clinic in Rochester, Minnesota, reviewing the findings of several recent papers. This is similar to the number of Americans with amyotrophic lateral sclerosis, but about 200-fold less than people with Alzheimer’s disease. FTD most often hits between 45 and 64 years old, and people typically survive six to nine years after diagnosis, Knopman said, similar to Alzheimer’s.

Frontotemporal dementia is an umbrella term that encompasses a large number of clinical syndromes and distinct pathologies. This includes a confusing lexicon of terms such as progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), primary progressive aphasia (PPA), behavioral variant FTD (bvFTD), and Pick’s disease. The distinctions among these syndromes are often hazy, and diagnosis can only be reliably made after death by examining brain tissue changes. Until quite recently, the fundamental biology at the root of many of these syndromes was a mystery.

On Guardian and Conservator Responsibilities

2010-12-06T12:37:00.000-08:00

Attorney Leanna Hamill provides estate planning and related legal services to clients of all ages, with a focus on the needs of older individuals and their families.
160 Old Derby St., Suite 456
Hingham, Ma 02043
Phone: 781-749-2284 Fax: 866-573-6429
Leanna@HamillLawOffice.com

Responsibilities of a Guardian & Conservator
Written on December 6, 2010 in Guardianship
Have you thought about pursuing guardianship or conservatorship over an adult family member who you believe can no longer handle their affairs? A guardianship is a legal relationship created by a court between a guardian and her ward, usually an incapacitated adult. The guardian has a legal right and duty to care for the ward. A conservatorship is a like a guardianship but refers only to property.

After you are appointed by the Court, you have a lot of responsibilities to properly carry out your duties. Here are some of the ongoing responsibilities of a guardian and conservator:

•Filing a report with the Court at 60 days and annually outlining your plans for the ward, their care, and their property,
•Filing a yearly report with the Court outlining the ward’s living situation, medical condition, how often you’ve visited them, what services they are receiving and related issues.
•Caring for the ward – making health care decisions, living decisions and decisions about how to manage their property for their benefit,
•Involving the ward as much as possible taking into account their condition and circumstances,
•Filing Roger’s Monitor reports annually, if you are also appointed in that capacity,
•In the case of a Conservatorship, fileing annual accountings showing what has occured over the last year with the property you are managing,
•Responding to any requests from the Court for more frequent recording.
A guardian or conservator is always subject to the oversight of the Court and can be penalized for failing to properly account for funds and monitor their ward.

(The term “ward” is used here for convenience. The legal term for someone under a guardianship is “incapacitated person” and for someone under a conservatorship is “protected person.”)

________
Estate Planning, Probate and Trusts involve complex areas of law. Individual circumstances must be considered before any advice can be given. The general information above is not to be construed as legal advice, which can only be given after consideration of the unique facts of each matter. Please seek the advice or counsel of your attorney, financial advisor or CPA as it may be appropriate.

From Geriatrics@brookdaleseniorliving.com

2010-12-03T13:59:00.000-08:00

MEMANTINE DISCONTINUATION AND THE HEALTH STATUS OF NURSING HOME RESIDENTS WITH ALZHEIMER'S DISEASE. Fillit HM, Hofbauer RK, et al: Journal of the American Medical Directors Association, 2010; 11 (November) 636-644
OBJECTIVE: To estimate the effect of memantine (Namenda®) discontinuation for a nonmedical reason (e.g., formulary restriction or family decision) on the health status of nursing home (NH) residents with Alzheimer's disease (AD).
DESIGN: Retrospective chart review.
RESULTS: Compared with continuous treatment, memantine discontinuation was associated with a significant increase in the Total AD Symptom Change Score (i.e., worsening) in all comparison pairs. The symptoms showing greatest worsening aggregated into two factors: cognition and mood.
CONCLUSIONS: Memantine discontinuation in NH residents with AD may be associated with declining health status, and should be considered with care. A randomized, placebo-controlled trial of treatment discontinuation is merited.

KEVIN’S COMMENTS: Memantine is indicated for the treatment of moderate to severe Alzheimer’s disease. Several clinical studies have demonstrated in such persons a favorable effect on cognition, behaviors such as agitation and aggression, and activities of daily living. However, we can expect that nonmedical reasons for discontinuing medications in nursing home residents will escalate as budgetary concerns and perceived lack of benefit surface. This study showed that sudden withdrawal of memantine in persons with moderate to advanced Alzheimer’s disease resulted in a decline in overall health status within 2-3 months, compared with continued memantine treatment.

Prayer heals from Brookdale newsletter

2010-12-03T13:52:00.000-08:00

SISTERS IN MOTION: A RANDOMIZED CONTROLLED TRIAL OF A FAITH-BASED PHYSICAL ACTIVITY INTERVENTION. Duru OK, Sarkisian CA, et al: Journal of the American Geriatrics Society, 2010:58 (October) 1863-1869.
BACKGROUND: We know that exercise benefits our health, but an effective exercise and health improvement program can be difficult to find. Elderly African-American women were the focus of this study because only a few of these programs have been utilized for this population.
OBJECTIVE: To show that a faith-based exercise intervention program has both utility and success in improving outcomes for elderly African-American women.
DESIGN: Randomized controlled trial.
METHODS: All of the participants were African-American women, who, at the beginning of the study, could not walk without a walker and walked less than 30minutes 3 times a week. After enrolling, baseline blood pressures, pain scores, and weights were recorded. Participants were given a pedometer to record the number of steps walked. Two groups were created, the intervention group and the control group. Both groups received 45 minutes of exercise as well as weekly lectures, but only the intervention group participated in the faith-based curriculum, which included 8 weeks of scripture reading, group prayer, weekly goal setting, teaching on overcoming barriers, and a prize for the most steps walked for each week. The women were followed monthly after the first 8 weeks.
PARTICIPANTS: 62 participants, 60 years of age and from3 different Los Angeles churches, were included.
RESULTS: At the 6-month follow-up point, the intervention group had increased their walking activity by 3 miles per week compared to the control group. They also had a significant decrease in their systolic blood pressure.
CONCLUSIONS: A faith-based exercise program that utilizes goal setting and teaches strategies to overcome barriers to physical activity improved physical activity and blood pressure control in elderly African-American women.
KEVIN’S COMMENTS: Wellness is not just the health of our bodies, but the health of our minds, hearts, and souls as well. This study demonstrated that spiritual support and cognitive stimulation, as well as incentives to enhance motivation, helped overcome barriers to participation and resulted in increased physical activity levels. Another benefit was a reduction in blood pressure. This study reinforces the health benefits of programs that support multiple dimensions of wellness.

My column for November in SS Senior News

2010-12-03T10:10:00.000-08:00

Hello God, it’s Me; I need You

In a research poll asking caregivers where they get their support, sixty-six percent answered “God’. The remaining thirty-three percent said friends, books, groups and professionals. Being a caregiver is lonely and laden with emotion. A diagnosis of Alzheimer’s is a life-changing event for families, one that continues to change life. Emotions emerge that surprise, even shame the person feeling them. Grief and sorrow over the losses the person sees in their diagnosed family member may be more easily managed than the emotions of anger, resentment, persistent impatience, and thoughts of hatred. These emotions feel unnatural and are not usually revealed to friends or family members. The caregiver carries them alone, unless they feel the presence of God.
I often ask caregivers if their faith brings them comfort through the caregiving journey. If they answer ‘yes’ I know the emotional impact will be lessened. If their religious practices like prayer and worship are an integral part of life and bring comfort and meaning to life, the person feels less alone.
Old Testament verses in Proverbs 3: 3-6 reads, ‘Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.’ The person of faith looks to God to hear their concerns, to continue to love them and forgive their shameful responses to caregiving. Some pray for patience to endure the challenges caregiving brings. Others are comforted believing God will guide them and protect them. God is the best care partner a caregiver can want.

Thanksgiving

2010-11-24T10:28:00.000-08:00

Tomorrow is Thanksgiving, a wonderful time to count God's blessings on your life. If my first husband had lived (died March 1973)we would be married 50 years. I am thankful for the 13 years we had and the two great kids we had that have produced seven grandchildren (plus my present husband's 4). In looking at years married, I just got an email from Bessie in California, married 74 years (yes, 74!) who had read my book and wanted to tell me how much she had learned from it. She has had to let others care for her 95 year old husband with dementia. She is 93 and was tiring.
She has a sense of humor throughout all these years and sent me the funniest Thanksgiving e-card with turkeys in various stages of trying to escape their fate.
People like Bessie are what makes me feel blessed doing this coaching business. So, if you are a caregiver give yourself applause as I do today. Happy Thanksgiving!

E-newsletter from November tip for the month

2010-11-19T11:05:00.000-08:00

You as a caregiver hear this over and over; "Take care of yourself or you cannot take good care of your familly member.' What does 'taking care of yourself' mean, anyway? Suggestions are made to eat right, get adequate sleep, do enjoyable things, meet with people who are not needing your care as well.

Often caregivers are reluctant to discuss with others their feelings about caregiving. It is a very personal and private journey, unlike that anyone else has traveled. To whom do you go? Discuss with people who have been caregivers and often their story comes out making you feel worse. Sometimes they remember their struggles and cannot hear yours. I suggested to a caregiver today to limit the conversation with those kinds of people to "My mom is doing fairly well now." to avoid the next person's story which is often not helpful. You simply need someone to listen, not give advice.

Find one or two people who really care about you, who will listen to you share the often embarrassing or seemingly shameful thoughts and feelings that come with caregiving.

Sometimes a support group lends to this kind of intimacy. Everyone at a support group is caregiving now. They are not looking back recalling the worst. They are all looking for answers to the now of caring. Look on the Alzheimer website for groups in your town at the time you need. Their's is www.alz.org/manh.

and don't forget the Help Line @ 800-272-3900. The Alzheimer's Association is there for you.

Oh My Omegas by Nancy Lombardo

2010-11-16T12:39:00.000-08:00

Here is an update from Nancy Emerson Lombardo PHD from BU on Omega 3s. We met recently and she was so excited about new news about Omega 3s.
Oh, My...Omegas!

Omega-3 fatty acids make up a major part of brain and body cells but can only be ingested, not made by our bodies. Omega-3s are important for building brain cell membranes, dendrites and synapses. These healthy fats are also anti-inflammatory, and thus helpful for preventing or managing a variety of diseases. Choose fish (3 or more x a week!), seafood, fish oils, green leafy vegetables, walnuts, flax seeds, and purslane.

What are Omega-3's?

Omega-3 fatty acids are "essential fatty acids" -they are necessary for life but since the body cannot make them we must eat them as part of our diet. Omega-3's are a type of polyunsaturated fatty acids (PUFAs). They are named for fact that the first double bond in their fatty acid chain is three carbons atoms away from the methyl end of the molecule. This location of the double bond causes the molecule to "bend" and in turn this shape assures flexibility of our cell membranes of which Omega-3's are a key component.

What are the Types of Omega-3's?

There are two major types of Omega-3 fatty acids:

alpha-linolenic acid (ALA), which is the plant form,
eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) which is the marine or "sea" form. EPA and DHA are found in fish, algae and all seafoods and in grass fed and free range animals and poultry.
It is the marine form, DHA and EPA, that make up much of our own brains and bodies' cell membranes and other components, not ALA, the plant form.

The ALA form of omega-3s are formed in the green leaves, specifically the chloroplasts, of plants; hence both grass and green leafy vegetables are excellent sources of ALA.

Some of the ALA from our diets can be converted to EPA and DHA in the body, but this process becomes drastically less efficient with aging. Most ALA in humans is "burned" as energy. Therefore, it is recommended that people aged 65 and older rely mainly on the marine sources of Omega-3's, but this is true for older and younger people alike. (see next month for food sources).

Why Are Omega-3's Essential?

DHA + EPA Omega 3's are essential for healthy functioning of BOTH brain and body, including our thinking, emotions, nerve function, vision, immune system, cardio-vascular system, hormones, joint health, and much, much more.

Omega 3's and Body Health:

A Harvard SPH website reports: "DHA and EPA Omega 3's are an integral part of cell membranes throughout the body and affect the function of the cell receptors in these membranes. DHA and EPA are the starting point for making hormones that regulate blood clotting, contraction and relaxation of artery walls, and inflammation. They also bind to receptors in cells that regulate genetic function. Research suggests Omega-3 fats help prevent heart disease and stroke; may help control some auto-immune diseases such as lupus, eczema, and rheumatoid arthritis, and may play protective roles in cancer and other conditions." Source: http://www.hsph.harvard.edu/nutritionsource/what-should-you-eat/omega-3-fats/

Cardiovascular Health and Omega 3's

Medical research shows eating fish and fish oils and other Omega 3's reduce blood pressure, congestive heart failure, arrhythmias, stroke, and peripheral vascular disease as well as the inflammations known to increase risk of heart attacks.

Eating omega-3 fatty acids in place of saturated fats can help decrease overall triglyceride levels.

Omega-3's help thin the blood and prevent blood platelets from clotting and sticking to artery walls, which in turn may help decrease the risk for blocked blood vessels and heart attacks.

Omega 3's help maintain the elasticity of artery walls, and thus prevent the arteries from hardening (atherosclerosis), and ameliorate or even reverse this condition.

All of these factors lead to reduced risk of heart disease.

For all these reasons, the American Heart Association recommends eating fatty fish at least twice a week.

The retina of the eye is almost pure DHA; thus vision also benefits from sufficient Omega 3's in the diet.

Other Chronic Diseases: Research shows that Omega-3 fatty acids reduce inflammation and throughout the brain and body may decrease the risk of chronic diseases such as cancer, diabetes and arthritis, and also help regulate blood sugar. Many physicians recommend consuming more Omega 3's (and fewer Omega 6's) for those who have, or wish to prevent, metabolic syndrome (Carpentier 2006).

Omega 3's and Brain Health:

Omega-3 fatty acids are important for normal brain functioning, growth, and development, not just as indirect effects from improved cardio-vascular and anti-inflammatory function, but also due to their key role in building brain cell membranes, dendrites and synapses. The myelin sheath for nerves is also largely comprised of DHA.Omega 3's appear to be particularly critical to cognitive brain functions such as memory, attention, and executive function as well overall behavioral functioning. Omega-3's (DHA) in fish or fish oil (Hashimoto 2002 2004) and in marine algae (Calon, Cole 2004) protect dramatically against cognitive decline and synaptic deterioration due to Alzheimer's pathology in AD transgenic mice DHA mediates A-beta production, degradation, tau phosphorylation, glucose uptake, and neurological signal transduction (Lane 2005). Modest DHA/EPA intake significantly slows cognitive decline in elderly men (van Gelder 2007).

DHA is found in reduced amounts in people with Alzheimer's disease. One study found that Omega-3 fish oil (2.8 g of BOTH DHA and EPA) alone can slow cognitive decline in persons with very early stage Alzheimer's disease (Freund-Levi + Cederholm, 2008). A larger NIH study released in November 2010 (J. Quinn in JAMA) using just DHA (derived from algae) did not slow cognitive decline in people with mild or moderate Alzheimer's disease. However the study may be flawed in that it did not include EPA Omega-3 along with the DHA. EPA may have an essential companion role related to cognitive function as yet to be elucidated; EPA is thought by other medical researchers and physicians to be essential for treatment of depression, anxiety and attention deficit disorder, in both children and adults. Thus marine Omega-3's are also recommended by the American Psychiatric Association for mood disorders (Freeman 2006). Check out Eric Reardon's Article on Omega 3's.

It is also possible that even more potent results for cognitive health will be found to depend on combining DHA with not only EPA, its companion marine Omega-3, but also other nutrients such as key anti-oxidants such as the 8-parts of vitamin E, vitamin D, all or most B vitamins, other phytonutrients and/or other constituents of brain neurons. Dr. Richard Wurtman of MIT believes it is the combination of DHA with choline and uridine that may be therapeutic and his patented product, combined with EPA and several vitamins is currently being tested as a medical food drink, in persons with AD in the US and Europe, by Nutricia, a subdivision of Danone (the yogurt) company of the Netherlands. And BUSM is currently in a Phase 1 trial (led by Sanford Auerbach MD) of another combination of nutrients that puts two plant/spice extract blends together with fish oil (both DHA and EPA) and vitamin D.

Why are So Many Americans deficient in Omega 3's Today?

Food and animal scientists believe the major reason Americans are deficient in Omega 3's today is that our diets and food sources have drastically changed in the last 100-200 years. All our major sources of commercial foods - vegetables, meat, poultry and even fish - have fewer Omega 3's and more Omega 6's than humans consumed for millions of years. Omega 6's are another essential fatty acid, necessary for life, but which in excess promote inflammation and other problems.

For example, grass-fed beef used to be a source of Omega 3's (and vitamin E and several other phytonutrients). Today's grain fed beef no longer contain Omega 3's (nor much of the other vegetation derived nutrients) and instead add to the excess consumption of Omega 6's, especially the most damaging kinds for the brain (such as Arachidonic acid -see Sanchez - Mejia, 2008). The change is so dramatic that 100 years ago we would have called DHA and EPA the animal/marine form! To compound problems, Americans also eat fewer green leafy vegetables, fish and other high level sources of Omega 3's and more of foods rich in Omega 6's, such as corn and corn products (and animals fed mostly corn).

Our ancestors evolved on a diet with a ratio of Omega-6 to Omega-3 of about 1:1 or 4:1. But today Americans' diet contains a ratio of 20 to 30 to 1. This is a profound imbalance unprecedented in human history. Many scientists now believe this imbalance, which creates high level of inflammation throughout the body, together with many other detriments, is a major contribution to higher incidence of obesity, diabetes, heart disease, mood and brain disorders, and other health issues.

The goal of the Memory Preservation Nutrition® is to improve the ratio of Omega 3's to Omega 6's in the diet through multiple strategies including eating more foods rich in ALA, DHA and EPA, as well as fewer foods rich in Omega 6's.

Read next month's issue for "Oh, My Omega 3's" Part II - featuring FOOD SOURCES AND SUPPLEMENTS containing Omega 3's.

Go to www.healthcareinsights.net website for Omega 3 rich recipes and the references for this article

Read next month's issue for food sources and supplements containing Omega 3's. Go to our website for Omega 3 rich recipes and the references for this article.

The Circle of Caregiving

2010-11-16T05:43:00.000-08:00

Tonight (Tuesday November 16) I begin a 3 part series on caregiving. The talks are called Roles of Control Revisited (Take Charge), Letting go (Let go of taking charge), and The Good Visit (Reconnecting with your care recipient and the new caregivers). That is the complete circle; as a caregiver for someone with dementia, you must be willing to take charge. You notice I didn't say take control; that would be coercive. You must learn how to empower that person to care partner with you. This is done by learning what he can do with your help and what you need to take over.
Then there comes the time when home is no longer enough and you must have the courage to let go of complete charge of that person you care for. Giving over the 24/7 care to others is no easy transition. You must choose carefully and then trust they will care well for your family member.
The Good Visit is about joining with the new caregivers in a team effort to deliver the best care, and how to reconnect in a new role with the person you are visiting. I wrote The Good Visit when I experienced not visiting well with my own mother, who did not have dementia but transient delirium from illness. One day she turned to me and said, "Why don't you go now, you are no earthly good to me today. You're somewhere else, not really with me." Wow! I was shocked. She had noticed my presence bodily and absence emotionally. When the person needs the visit structured by you, the visitor, it is important to be present wholly.
If you want a copy of The Good Visit, write me at Stilmee@comcast.net and I'll send you a copy. Others have found it very helpful to having a good visit. If you have my book it is in the Cheat Sheets at the back of the book.

I'm not myself when you're away

2010-11-09T18:07:00.000-08:00

Says Kathy Mattea: "The song is a true story about Jon's grandparents. They had both gotten very sick and were in the same hospital, but didn't know it. His grandmother had been slowly losing it, and she didn't recognize anybody. She was in unfamiliar surroundings, so she finally quit talking altogether. Jon was there visiting, and he was up seeing his grandfather; he said to the nurse, 'Has anybody brought him down to see her?' She said, 'no,' and he asked if he could do that. They said yes, so he wheeled his grandfather into his grandmother's room. His grandfather kept stroking her hair, saying, 'Look at her hair, nobody has hair like grandma,' and she looked at him and said, 'Where have you been?' It was the first thing she had said in weeks.

"When Jon told me the story for the first time, it was before we had even gotten engaged, and he just cried and cried. When he played the song for me and the first chorus came around, I knew where he was going with the lyric, and I just couldn't believe he could be that vulnerable as a writer, to put that moment in a song."

The song was Matteas biggest hit, winning her a Grammy. It also won Song of the Year at the Grammys, CMAs and ACMs. While Mattea had wondered to herself, "Do people want to hear this on the way to work?," the song struck a deep chord, and it was the first time Alzheimer's had been captured in a mainstream hit song.

Where've You Been?

Claire had all but given up
when she and Edwin fell in love.
She touched his face and shook her head.
In disbelief, she sighed and said,
"In many dreams I've held you near.
Now at last you're really here!"

"Where have you been?
I've looked for you forever and a day.
Where have you been?
I'm just not myself when you're away."

He asked her for her hand for life,
and she became a salesman's wife.
He was home each night by eight,
but one stormy evening he was late.
Her frightened tears fell to the floor,
until his key turned in the door...

"Where have you been?
I've looked for you forever and a day.
Where have you been?
I'm just not myself when you're away."

They never spent a night apart.
For sixty years she heard him snore.
Now they're in a hospital,
in separate beds on different floors.

Claire soon lost her memory,
forgot the names of family.
She never spoke a word again.
Then one day they wheeled him in.
He held her hand and stroked her head,
and in a fragile voice she said...

"Where have you been?
I've looked for you forever and a day.
Where have you been?
I'm just not myself when you're away...
No, I'm just not myself when you're away."

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Alzheimer's what it is, what it isn't and...

2010-11-09T12:14:00.000-08:00

On Friday StilMee will present a 1 1/2 hour workshop at The Hopkinton Senior Center sponsored by Senior Living Residences. The subject is Alzheimer's; what it is, what it isn't, and what to do about it. It takes place from 10-11:30 a.m. Many vendors from the area will be available as resources, including StilMee, the leader in Alzheimer coaching.

Haldol's value

2010-11-05T10:29:00.000-07:00

Although I've had misgivings about the giving of Haldol to persons with dementia, in some cases of dementia it may have real benefits. The following is an article from the Dementia Weekly.

RESEARCH ARTICLE

Researchers say commonly used psychiatric drugs such as haloperidol (Haldol) could be effective in slowing the progression of certain types of dementia.

Dr. John Kwok and colleagues from Neuroscience Research Australia have discovered a mutant gene that causes abnormal proteins to build up in the brains of people with frontotemporal dementia, a disease that affects people in their 50s and 60s.

Common psychiatric drugs, such as haloperidol, used to treat schizophrenia, are known to act on this gene.

“Our hope is that these drugs will slow the progression of the disease,” says Dr. Kwok.

Frontotemporal dementia (FTD) is a type of dementia that affects personality, behavior and language.

There is currently no treatment to slow or stop this disease.

Like in Alzheimer’s disease, people with FTD develop unusual deposits of protein in their brains.

This protein ‘clumps’ are linked to disease symptoms and brain cell death. Until now, we have not understood how these clumps developed.

By scanning DNA samples from a large Australian family with hereditary FTD, Dr. Kwok identified the gene (called SIGMAR1) responsible for the formation of these clumps. A further 26 families in Australia and 158 families in Europe were also screened.

“Identifying this gene gives us greater insight into how brain degeneration occurs in dementia,” says Dr. Kwok.

Haloperidol is already known to act on the SIGMAR1 gene. Dr. Kwok is currently conducting tests in mice to see if this and other drugs can stop the abnormal build up of protein in the brain and prevent the death of brain cells in dementia.

Preliminary work with haloperidol suggests that a dose 10-100 times less than that used for treating psychosis may be effective, reducing the risk of side effects.

“The exciting part about our findings is that an effective treatment for this form of dementia might be almost within our grasp,” says Dr. Kwok.

“Because these drugs are already approved for use in humans, we could be looking at a treatment for frontotemporal dementia becoming available in just a few short years.”

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Tips for the Holidays from Alzheimer's Association

2010-11-03T05:51:00.000-07:00

Ready for the holidays?

Holidays are times for getting together, sharing laughter and making memories, but the juggling act to keep the traditions can be stressful. Care giving is a daily challenge--add holiday expectations and even the most competent care partners feel overwhelmed. Consider these holiday strategies, and involve all family members including the person with Alzheimer's disease. Remember, too, that you can always call our 24/7 Helpline at 800.272.3900 if you need answers.

· Give yourself permission to simplify.Turn off the "we've always done that" button.

· Divide tasks and share responsibilities.

· Include the person with Alzheimer's in safe, manageable activities.

· Be flexible. Schedule activities to accommodate the person with dementia.

· Prepare for a post-holiday letdown. Do something that brings you peace and enjoyment.

· Be kind to yourself.

Letting someone know that she or he is loved, safe and valued is the greatest gift of all.

Disability

2010-11-01T14:18:00.000-07:00

I've been recovering from left shoulder surgery which has hampered my ability to type, sign my name, and create new talks to give to educate Alzheimer caregivers. It has been painful in two ways; physically I hurt, but more so my emotional self. To not write is like not having nourishment. I think; I write about it. I want to make a meal but my pain delays my beginning. And watching someone else do it is at times agonizing. I watched my husband make us a meal. He is great at building gorgeous homes but making a meal is not his forte. I had to leave the room and let him do it his way so I wouldn't seem ungrateful for his offering.
I'm wondering how often people with the disability of dementia feel starved for things they love doing. Being able to make your wishes known, asking a question, doing a task which was once easy are all things we take for granted until we can't do them. When I ask people with dementia what helps, they tell me that people who give them time to express themselves, people who ask simple questions instead of complex questions, people who help set up a task so that the visual cues prompt easier completion of that task and a sense of accomplishment. I hope during this time of temporary disabiity I've learned a bit more how to help others who are disabled cognitively.

Smoking and Alzheimer Risk..The Dementia Weekly

2010-11-01T14:16:00.000-07:00

PREVENTION VIDEO & ARTICLE

OAKLAND, Calif. -- Heavy smoking in midlife is associated with a 157 percent increased risk of developing Alzheimer's disease and a 172 percent increased risk of developing vascular dementia, according to a Kaiser Permanente study published in the Archives of Internal Medicine.

Electronic health records were used to study 21,000 men and women for 20 years, making this a remarkably compelling piece of research.

This is the first study to look at the long-term consequences of heavy smoking on dementia.

Researchers followed an ethnically diverse population of 21,123 men and women from midlife onward for an average of 23 years. Compared with non-smokers, those who had smoked more than two packs of cigarettes a day had more than a 157 percent increased in risk of Alzheimer's disease and 172 percent increased risk of vascular dementia during the mean follow-up period of 23 years. Vascular dementia, the second most common form of dementia after Alzheimer's disease, is a group of dementia syndromes caused by conditions affecting the blood supply to the brain.

"This study shows that the brain is not immune to the long-term consequences of heavy smoking," said the study's principal investigator, Rachel A. Whitmer, Ph.D., a research scientist with the Kaiser Permanente Division of Research in Oakland, Calif."We know smoking compromises the vascular system by affecting blood pressure and elevates blood clotting factors, and we know vascular health plays a role in risk of Alzheimer's disease."

Researchers analyzed prospective data from of 21,123 Kaiser Permanente Northern California members who participated in a survey between 1978 and 1985. Diagnoses of dementia, Alzheimer's disease and vascular dementia made in internal medicine, neurology, and neuropsychology were collected from 1994 to 2008. The researchers adjusted for age, sex, education, race, marital status, hypertension, hyperlipidemia, body mass index, diabetes, heart disease, stroke, and alcohol use.

"While we don't know for sure, we think the mechanisms between smoking and Alzheimer's and vascular dementia are complex, including possible deleterious effects to brain blood vessels as well as brain cells," said study co-author Minna Rusanen, MD, of the University of Eastern Finland and Kuopio University Hospital in Finland.

This study is the latest in a series of published Kaiser Permanente research to better understand the modifiable risk factors for dementia. This ongoing body of research adds to evidence base that what is good for the heart is good for the brain, and that midlife is not too soon to begin preventing dementia with good health.

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Language and its impact

2010-10-17T13:11:00.000-07:00

I've been reading a book about a couple's journey through alzheimer's disease called 10 Thousand Joys, 10 Thousand Sorrows. It is an unusual book as the person, the husband, with Alzheimer's has always been a lover of language. Poetry and prose had been his life along with his wife's as well. They taught, wrote and enjoyed the nuiances of language. As his disease progresses in the story he is able to express his feelings about his confusion, his aphasia, his disorientation and his angst about losing language.
This is unusual because most who get Alzheimer's are not linguists or poets . They can't express these feelings easily if at all. Do they suffer alone? What can we as caregivers do to help? Reading the book gave me insight into what it might be like to know you are losing your cognitive abilities. It gave me more empathy towards those who cannot express their feelings. As caregivers we need to be sensitive to the struggles to understand that the person with the disease must have. One patient said, "I go to talk and words run away and hide." As I read this book I became anxious and sometimes felt jealous anger about his being able to express his confusion,fear and frustration. I remembered all the spouses who try to understand but can't what their partner is experiencing.Oh that all could do that; caregiving might take on a more shared experience. As it is, most caregivers complain of missing conversation, companionship of their loved one. Caregiving is a lonely existence. We need to slow our pace to match theirs, try to 'read' expressions on the face, and perhaps guess what the person is feeling. This is hard work. We need to reach out to the person, not get stuck in the label Alzheimer's. Maybe we'd have more of a chance to have that shared journey and not be so lonely.

White Matter Matters a Lot

2010-10-05T07:51:00.000-07:00

(800) 829-0422www.johnshopkinshealthalerts.com | Johns Hopkins Health Bookstore |
White Matter Matters A Lot

When it comes to your brain, you probably have read all about the brain's "gray matter." Gray matter, so called because of its distinctive color, is composed of cell bodies of nerve cells and is responsible for memory storage. "White matter" also is in the brain and consists of millions of long filaments (axons) coated with a fatty white substance called myelin that extend from the cell bodies. This white matter fills half of the brain and helps transmit electrical signals that carry the important messages between neurons from one brain region to the other.

White matter has long been a mystery to neuroscientists as well as to the surgeons who operated on the brain. The main thought was that myelin -- which looks like an outstretched, elongated finger when viewed under a microscope -- was simply insulation and that the filaments inside were passive passageways. Only in the past decade have researchers begun to better understand the critical role of white matter in helping a person master a variety of mental skills.

Johns Hopkins scientists have discovered to their surprise that nerves in the mammalian brain's white matter do more than just ferry information between different brain regions. In fact, they process information the way gray matter cells do, and assist brain regions to work well together. The discovery in mouse cells, reported in a cover story in the journal Nature Neuroscience, shows that brain cells "talk" with each other in more ways than previously thought.

Researchers in Europe have also noted that the maturing of the brain from childhood to adulthood, and experience at an early age (learning a foreign language, how to play a sport, ride a bike, play an instrument) influences the formation of myelin, strengthens neuronal connections, speeds the learning process, and improves cognition. Damage to the myelin, on the other hand, can impair mental abilities.

Damage to the brain's white matter has also been found to be an indicator of potential memory problems and dementia. Dutch researcher Niels Prins, M.D., has discovered that elderly people with damage to the small blood vessels in the brain have a greater chance of developing dementia or depression.

Elderly people with serious white matter abnormalities and infarcts taking part in Dr. Prins's study were found to deteriorate more quickly in their cognitive functioning than peers with fewer abnormalities. In particular, the processing of information was worse in the group with more white matter lesions and infarcts. This group also had an increased risk of developing dementia and depression.

Over a period of three years, one-third of the elderly people he investigated exhibited an increase in white matter lesions. These individuals had an increased likelihood of experiencing a stroke and a faster decline in their cognitive functioning. Furthermore, a significant increase in the number of abnormalities in the white matter increased the risk of dementia and depression.

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Educate yourself

2010-09-28T10:27:00.000-07:00

Early Detection and Management of Dementia Cuts Healthcare Costs

With the aging of America, the number of Alzheimer’s cases is growing rapidly.
Early detection, diagnosis and care management for people newly diagnosed with cognitive impairment and dementia reduces outpatient costs by almost 30 percent, according to new research reported at the recent Alzheimer's Association International Conference on Alzheimer's Disease 2010.

According to the Alzheimer's Association, dementia is a common, costly, and often unrecognized problem in older adults. In order to provide better medical care and outcomes for people with Alzheimer's and other dementias, the conditions must first be detected and diagnosed, and needed care management must be provided.

"Research suggests that when the family of someone who is officially diagnosed with Alzheimer's becomes educated about the disease, and they work together with medical professionals on a care plan, it can reduce the patient's difficult behavioral and psychiatric symptoms." said Maria Carrillo, PhD, Senior Director of Medical and Scientific Relations at the Alzheimer's Association. "It can also lower the family caregiver's anxiety, depression and stress."
Alzheimer's care management helps people with the disease and their families to find resources, make decisions, and manage stress. For example, a care manager can help families with decisions about in-home care services, or long-term care whether at home or in a nursing facility.

The study, titled the Dementia Demonstration Project (DDP), was an interdisciplinary effort led by the Geriatric Research, Education and Clinic Center at the Minneapolis Veterans Medical Center. Seven VA Medical Centers took part in the project, which was created to increase detection and diagnosis of dementia in primary care and provide information, support, and care coordination for veterans with newly diagnosed dementia.

In the DDP clinics, once a patient was diagnosed with cognitive impairment, the dementia care team met with the patient and family to review the results, discuss the diagnosis, and outline treatment recommendations.

Interventions were targeted to the severity of dementia and the specific needs of the patient and their caregivers. Informational material, assistance in identifying needed services, and direct support and training from team members was provided, as needed.

"The most important goals of the program were making sure that all family members understood the disease and were on the same page, that patients remained physically active and socially engaged, and that caregivers had the support they needed," said J. Riley McCarten, MD, the project's lead physician.Healthcare costs data showed that veterans diagnosed in the DDP clinics saw their average outpatient healthcare costs decline by about 29 percent (-$1,991) in the year after diagnosis of cognitive impairment compared with the year before diagnosis. "We see in this study's findings that early diagnosis and case management in dementia may also significantly lower healthcare costs. This could have a reverberating positive impact throughout the entire healthcare system," Carrillo said.

Source: The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Visit www.alz.org or call 800-272-3900

Right at Home is a national organization dedicated to improving the quality of life for those we serve. We fulfill that mission through a dedicated network of locally owned, franchised providers of in-home care and assistance services.

A Matter of her mind...and my Heart

2010-09-26T13:30:00.000-07:00

I have to get busy and write that second edition to my book Matters of the Mind...and the Heart. I was heartened to hear an attendee at one of my talks that my book was like her Bible; she continually referred to it. That sure makes writing it worth my effort.
This week I'm having repair shoulder surgery and won't be able to write for a while. I love writing; about Alzheimer's, about my journey through Alzheimer's, and commenting on other writers and presenters. Last Thursday I heard David Troxel who, along with Virginia Bell, wrote The Best Friends Approach to Alzheimer's. His talk was so encouraging; that caregivers are catching on to treating the person with dementia with dignity. All one has to do to figure out what that means is to examine what makes you feel valued as a person of worth. He talked about elements of KNACK, which is approaching care of the person with an attitude of good will. Some elements of Knack are: being well informed, having empathy, respecting the basic rights of the person, using common sense, communicating skillfully, being optimistic, using humor, developing flexibility, patience, connecting with the spiritual, and something good for everyone, valuing the moment. You've met people with Knack; maybe you are one. I taught homecare aides in the 1990s and there were about 5 of these women who had Knack; a natural love of their clients and a desire to make life better for them. I hope when I need a caregiver, I'll have one with Knack. Don't you?

An article on Frontotemporal Dementia

2010-09-20T14:16:00.000-07:00

This is an article from Alzheimer's Weekly. You can log on to www.alzheimersweekly.com/RESEARCH

Frontotemporal dementia (FTD), sometimes called frontal lobe dementia, describes a group of diseases characterized by degeneration of nerve cells - especially those in the frontal and temporal lobes of the brain. Unlike AD, FTD usually does not include formation of amyloid plaques. In many people with FTD, there is an abnormal form of tau protein in the brain, which accumulates into neurofibrillary tangles. This disrupts normal cell activities and may cause the cells to die.

Experts believe FTD accounts for 2 to 10 percent of all cases of dementia. Symptoms of FTD usually appear between the ages of 40 and 65. In many cases, people with FTD have a family history of dementia, suggesting that there is a strong genetic factor in the disease. The duration of FTD varies, with some patients declining rapidly over 2 to 3 years and others showing only minimal changes for many years. People with FTD live with the disease for an average of 5 to 10 years after diagnosis.

Because structures found in the frontal and temporal lobes of the brain control judgment and social behavior, people with FTD often have problems maintaining normal interactions and following social conventions. They may steal or exhibit impolite and socially inappropriate behavior, and they may neglect their normal responsibilities. Other common symptoms include loss of speech and language, compulsive or repetitive behavior, increased appetite, and motor problems such as stiffness and balance problems. Memory loss also may occur, although it typically appears late in the disease.

Vacation Lessons

2010-09-08T13:24:00.000-07:00

My husband and I took a week's vacation which turned out very different from what was planned. The plan was to sail for 6 days in our 30 foot Nonesuch named So Far So Good (appropriate name for 2 people who make one whole sailor). Then business had to be attended to. Then Hurrican Earl was predicted and then fizzled out, making us unhappy we hadn't sailed anyway. We have friends who need a time, a destination and their expectations met every step of the way. They are not sailors; sailors cannot control the wind direction, the current, wave height or the weather. Sailors get up, find out if the wind will take them to their planned destination, and if not, they change direction.
A colleague has a training business in Alzheimer care. Her motto is: You can't change the wind, but you can adjust your sails. So true. Often the change brings unexpected joys. It made me think how often plans get changed when you are a caregiver for someone with Alzheimer's. Often you can't plan easily, as so much can interrupt well laid plans when you're a caregiver. Many unexpected 'happenings' can alter plans. How do you handle the uncertainty? I think the successful caregiver is flexible and kind of loosey-goosey, not rattled by change, able to switch gears easily.
Our vacation took a new twist. We were not on the water. We took day trips;one to Norman Rockwell's Museum in Stockbridge (a delightful trip), one to Maine to LL Bean and favorite haunts for good seafood (clam cakes), and on the last day we toured our own city Quincy in a trolley to visit the Adams Mansion and John and John Quincy's birthplaces. It was reminiscent of our dating days, driving, easily chatting and having good meals together. It turned out to be a restful vacation after all; not what we'd planned, but delightful nontheless. Can you approach your caregiving experience like that? It would help to learn to.

New article from Right at Home Newsletter: Dressing

2010-08-25T13:59:00.000-07:00

Alzheimer's Caregiver Tips: Helping Your Loved One Dress

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Throughout our lives, most of us put a fair amount of care and attention into choosing and caring for the clothes we wear. But for people with Alzheimer's disease and other dementia, dressing can be a challenge. And for family, seeing the difference in their loved one, who once took great pride in how they looked, is a reminder of how their loved one has changed.
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Family caregivers may be confused about whether to step in when Dad selects a plaid shirt and clashing plaid trousers, or Mom puts her blouse on inside out. And their loved one may be resistant to assistance. The National Institute on Aging offers these suggestions on assisted independence, to make the process go more smoothly.

People with Alzheimer's disease often need more time to dress. It can be hard for them to choose their clothes. They might wear the wrong clothing for the season. They also might wear colors that don't go together or forget to put on a piece of clothing. Allow the person to dress on his or her own for as long as possible.

Here are some tips that can help:

Lay out clothes in the order the person should put them on, such as underwear first, then pants, then a shirt, and then a sweater.

Hand the person one thing at a time or give step-by-step dressing instructions.

Put away some clothes in another room to reduce the number of choices. Keep only one or two outfits in the closet or dresser.

Keep the closet locked if needed. This prevents some of the problems people may have while getting dressed.

Buy three or four sets of the same clothes, if the person wants to wear the same clothing every day.

Buy loose-fitting, comfortable clothing. Avoid girdles, control-top pantyhose, knee-high nylons, garters, high heels, tight socks, and bras for women. Sports bras are comfortable and provide good support. Short cotton socks and loose cotton underwear are best. Sweat pants and shorts with elastic waistbands are helpful.

Use Velcro or large zipper pulls for clothing, instead of shoelaces, buttons, or buckles. Try slip-on shoes that won't slide off or shoes with Velcro straps.
This information provided by the National Institute on Aging's Alzheimer’s Disease Education and Referral Center (ADEAR). Visit the ADEAR website for more information on effective dementia caregiving.

Namenda news from Alzheimersweekly.com

2010-08-23T06:14:00.000-07:00

Namenda & Side-Effects

A team of investigators unraveled exactly how Namenda helps Alzheimer's patients without causing serious side effects.

Alzheimer's disease destroys brain cells and their connections (called synapses), causing memory loss and other cognitive problems that disrupt work, hobbies and daily life. Symptoms can be alleviated, in part, by the drug Namenda (marketed in some countries as Ebixa, generically known as memantine).

New research shows a unique advantage of Namenda. Researchers revealed a signaling process that normally helps a healthy brain to communicate. This process can destroy brain cells when it sends the wrong signal. It seems that Namenda can tell the difference between the two, allowing the process to do its job when signals work properly, while blocking it whenever signals will be destructive.

Namenda is currently FDA-approved to treat moderate-to-severe Alzheimer's disease. It was, in part, developed by Stuart A. Lipton, M.D., Ph.D., Director of the Del E. Web Center for Neuroscience, Aging and Stem Cell Research at Sanford-Burnham Medical Research Institute (Sanford-Burnham).

Namenda improves symptoms by blocking abnormal activity of glutamate, a chemical that transmits messages between nerve cells.

In a study appearing August 18 in The Journal of Neuroscience, a team of investigators at Sanford-Burnham led by Dr. Lipton unravel exactly how Namenda helps Alzheimer's patients without causing serious side effects.

"While Namenda is partially effective in treating Alzheimer's disease, one of its major advantages is how safe and well-tolerated it is clinically," said Dr. Lipton

In treating any disease, one of the most difficult parts of designing a new drug is finding ways to maximize its beneficial effect while minimizing harmful side effects. Namenda is a particularly safe treatment for Alzheimer's disease because it dampens excessive glutamate signaling that occurs away from synapses without blocking glutamate activity at the synapses. This is important because interfering with synaptic glutamate signaling would disrupt normal brain activity.

"We showed definitively for the first time that Namenda, the drug our group developed for Alzheimer's disease, works in a unique way," Dr. Lipton said.

"It inhibits a protein that binds glutamate called the NMDA receptor, but predominantly blocks NMDA receptors that signal molecularly to cause neuronal injury and death. It spares the synaptic receptors that mediate normal communication between nerve cells in the brain."

This finding helps explain why the drug is so well tolerated by Alzheimer's patients and might provide hints for the development of future therapies targeting the NMDA receptor and similar cellular machinery in other diseases.

Namenda is now available in an XR and a generic to save money and take fewer doses a day. Go to www.alzheimersweekly.com/treatment/namenda-&-side-effects-a804.html

Make Happiness Happen

2010-08-20T14:23:00.001-07:00

I am on WATD tomorrow morning talking about how to bring happiness to someone with dementia. My column in the SS Senior News www.southshoresenior.com has the same ideas. I'm including it here for those of you who don't get the paper (you should; log on and read some good articles)

Make Happiness Happen

Believe it or not, August is Happiness Happens Month. Where do they come up with these titles for months anyway? How does one make happiness happen? One of my coaches, Susan, gave me a plaque that reads: ‘We don’t remember days; we only remember moments.’ That is true for all of us. We remember the joy in seeing our first born for the first time. We remember a moment on a vacation that brings a smile or a tear.
We hear a song and the feeling it evokes brings to remembrance who we were with and what we were doing. We are capable of pulling those special memories out of our head and enjoy them again.
Happiness for the person with Alzheimer’s however doesn’t just happen. Since often all the person with memory loss is aware of is this moment, caregivers need to find how to create as many happy moments throughout the day as possible. For each person this can be different. Does music bring a smile? One wife, unable to make her aphasic husband understand her invitation to come to the table to eat, recalled his happiness while ballroom dancing in years past. They had gone dancing weekly then. She decided to put on dance music each meal and invite him to dance which he willingly did. Then she danced him to the table with a smile. When he saw the visual cues of a meal on the table he was ready to sit and eat. She felt joy seeing the happiness on his face so she continued this dance routine three times a day.
A daughter taped the Judge Judy Show, seeing the enjoyment her mother got whenever she watched it. When her mother became restless or irritable, she popped in a Judge Judy tape. Voila; instant smiles and contentment!
So what makes your family member with Alzheimer’s smile? Is it old photos? Is it plants? Does he love the beach, sunsets, baseball games? Try offering those activities and see what feelings of happiness you can make happen for both of you.
Coach Beverly

Visit our website www.StilMee.com

2010-08-17T11:51:00.000-07:00

StilMee's website is updated with all the services we offer. I am excited about the family forum trainings we'll offer in the fall and the StilMee Certification Training for professionals. 5 CEUs for social workers makes it a great way to expand your knowledge of working with folks with dementia. If you are in the healthcare field you will have contact with both those with dementia from various causes and their families. I guess I've always gravitated toward educating the caregivers in whatever healthcare field I was in at the time. I had an educational support group for families of mentally ill people at Deaconess Hospital in the late 70s and early 80s. It amazed me to find the lack of knowledge of the diagnosis a family member had. This is true today of families who muddle through caring for someone with dementia. There is no reason a person must 'muddle' through! There is valuable education from a coach, from support groups, from the Help Line at the Alzheimer's Association 800-272-3900, and books. I'm including a bibliography here that can start you on your way to confidence.

Alzheimer’s A Caregiver’s Guide and Sourcebook by Howard Gruetzner; John Wiley and Sons, Inc. New York, 1992.

Alzheimer’s Early Stages; first steps in caring and treatment by Daniel Kuhn, MSW; Hunter House Publishers, Inc., California 1998.

Care That Works; A Relationship Approach to Persons with Dementia by Jitka M. Zgola, Johns Hopkins University Press, Baltimore and London, 1999.

Learning to Speak Alzheimers by Joanne Koenig Coste, Houghton Mifflin Company, Boston and New York, 2003.

Matters of the Mind…and the Heart Meeting the challenges of Alzheimer care by Beverly Moore, Strategic Book Publishing, New York, New York 2009.

Rethinking Alzheimer’s Care by Sam Fazio, Dorothy Seman, & Jane Stansell, Heatlh Professions Press, Baltimore, London, Winnepeg & Sidney.

I'm Still Here by John Zeisel PhD, Penguin a division of Avery Publishing, NY, NY.

Driving and the elderly

2010-07-28T13:56:00.000-07:00

Another good article in the most recent Right at Home Newsletter

While some people with dementia can still drive safely for a time, nearly all people with dementia will eventually have to give up driving," said lead guideline author Donald J. Iverson, MD, of the Humboldt Neurological Medical Group in Eurkeka, CA, who is a Fellow of the American Academy of Neurology.

Iverson adds, "It's important for doctors to discuss this with patients and caregivers soon after the diagnosis, since restricted driving will affect the patient's quality of life and may lead to other health concerns, such as depression."

The guideline recommends that doctors use the Clinical Dementia Rating (CDR) scale to identify people with dementia who are at an increased risk of unsafe driving. The CDR provides a tool for clinicians to integrate information from caregivers and from direct examination of the patient to develop a comprehensive view of the dementia severity.

Evidence shows that driving skills deteriorate with increasing dementia severity. "While patients with mild dementia, as a group, are higher-risk drivers, more recent studies report that as many as 76% are still able to pass an on-road driving test and can safely drive," said Iverson. "Faced with these facts, we needed to provide guidelines for doctors to identify those people at higher risk of unsafe driving, without unnecessarily restricting those who are safe drivers."

Family caregivers may be an accurate judge of loved one's driving abilities.

The guidelines also confirm that caregivers should trust their instincts. A study found that caregivers who rate a patient's driving as "marginal" or "unsafe" were often proven correct when the patient took an on-road driving test. On the other hand, patients who deemed their own driving as "safe" were not necessarily accurate in their own assessments.

Caregivers and family members play a role in identifying warning signs from unsafe drivers with dementia. These include:

Collisions;

Moving violations; and,

Aggressive or impulsive personality traits.
"It is important that the decision to stop driving be directed by a doctor who is trained and experienced in working with people with dementia and their families," Iverson said. "Doctors should be aware that assessing driving ability is a complex process. More than one source of information is needed to make a judgment. In some situations, a dementia specialist may be needed."

Doctors, patients and caregivers must also know their state laws, since some states require that doctors report any medical conditions that may impact a patient's ability to drive safely.

This guideline was published in a recent issue of Neurology, the medical journal of the American Academy of Neurology, which is dedicated to promoting the highest quality patient-centered neurologic care. Visit the AAN website for consumer information on dementia, Parkinson's disease, stroke, and other neurological disorders.

Marriage and Alzheimer's

2010-07-27T10:12:00.000-07:00

An Alzheimer diagnosis of a spouse is a life crisis. Life is irrevocably altered. When one is sick, two need care. The healthy spouse is grieving the loss of his or her other half. Roles change, identity as a husband or wife changes, and there is more often than not a social change. People shy away from inviting you as a couple, perhaps fearing looking at the change, or embarrassed around the ill friend.
Sexuality changes; sometimes spouses withdraw from the diagnosed spouse and feel that sexual expression now is inappropriate or distasteful. There are hygiene issues, fear that the partner will forget who their partner is.
If a couple can preserve aspects of their sexual relationship, there is still a sense of 'couple'. Other times passion is relabeled compassion. There may be lonliness within the relationship; the relationship now defined by loyalty, not necessarily love. If less attracted to the mate, there is guilt around rejecting advances. Males may wonder if sex is still consentual, and don't make advances. Couples need help accepting the many losses in their marriage when a diagnosis of Alzheimer's is given. They must learn other ways of communicating caring.
The couples I've coached over the years mostly talk about the loss of relationship; little conversation or one sided, the well spouse carrying the conversation.
I'd love to hear from spouses and what you've discovered in your experience and how you've found solutions.

The Seasons of Caregiving

2010-07-23T13:15:00.000-07:00

When I was very little my mother introduced me as her little nurse. Did that have anything to do with my choice of professions? I’ve focused my last 32 years in the mental health field. I thought about this question “Why that population; the mentally ill and now the cognitively impaired and their caregivers?”.

I grew up hearing about my uncle Harold who was hospitalized when he was 27 for acting in a bizarre harmful way towards his mother. He spent the next 50 years in mental institutions. I visited him once when I was a student nurse on rotation at Medfield State Hospital and talked with a mild mannered pleasant man who looked just like his sister,my mother. I started to think how terrible for him to have had a psychotic break before the advent of psychotropic drugs. He missed out on 50 years of family life and perhaps years of pursuing and enjoying his dream of teaching. Today he would be treated with medications and probably released within a week or two….if his insurance company allowed that long.

The helper’s journey goes through seasons as I see it. First comes the spring; an awakening of a need of a person or population. There is the gathering of tools; information, education, and skill building.

As the skills needed to help are developed and refined, the summer brings confidence in oneself as helper. There may be a broadening or narrowing of the area in which we see we can best be effective. This may be grant writing, lobbying, directing, speaking,or teaching for the professional or hands on care. We find out what brings us satisfaction.

When I asked an audience in an assisted living residence to look at the satisfaction factor, we found some realized it in bringing comfort to the elder, others in teaching them easier ways of caring for themselves, others in advocating for services. The helper sees “This is how I can make a difference and feel satisfied doing it”

As caregiving continues there is a fall season in which there is ‘more of the same’, or little improvement in spite of our best efforts. There is a danger here of despair or burnout. This is the time when affirmation of what has been accomplished by our efforts becomes important. New ideas get generated as one reaches out to others for help in continuing.

Winter is a season of endings; perhaps that of a career, a program or an area of compassionate work. I underestimated the grief I felt 3 years ago when a program I developed and worked at for seven years waned as budget crunches emerged and finally ended for me when I was laid off. This is a time of new beginnings as well as endings.

And so we continue our individual journeys, learning about ourselves along the way, learning more about how to work with others in a team, and perhaps learning to let go when a caregiving area ends.

During all these seasons, the gift of appreciation and validation of work a person does cannot be overstated. We can each care for our team members who are helpers in their own unique way. An attitude of gratitude and appreciation among workers spreads like wildfire the same as an attitude of complaining and blaming can. We can choose the attitude of gratitude and carry on with our journey and support others in theirs.

A Matter of her mind...and my Heart

2010-07-21T06:16:00.000-07:00

I'm beginning a new book about my Alzheimer caregiving journey, sometimes peaceful, sometimes not, with my mother in law, Bette. This is the opening paragraph. I'm hoping it helps others to read it as it did me to write it.

I should call this Confessions of an Alzheimer Coach. As I read back on the last 10 years of caring for Bette, I am aware of how much I’ve learned since the beginning, when I thought I knew a lot about Alzheimer care. It was after my father in law died of Alzheimer’s in 1996, that I realized Bette would require more attention. I didn’t know then just how much attention she would need and how little of what she needed she’d be wanting or accept. I confess I was a very reluctant caregiver, only agreeing to become primary caregiver to relieve my husband of a job he was ill-equipped to handle mainly because he loved her too much. His sister, although living nearby her mother, didn’t drive due to low vision and had limited knowledge of Alzheimer’s and the medical systems her mother would need. And so I accepted the position that would prove very challenging, frustrating, frightening in its impact on my marriage, my caring for my own mother and my feeling of emotional well being.
I’m writing this for one reason only; so caregivers can console themselves for the mistakes, the failures in care and the lack of heart for the job of caregiving. And, now one year after her death at 99 years of age, I can stand back and assess what kind of caregivers we were. As a professional, a nurse and owning a business coaching Alzheimer caregivers, I can adopt the professional stance when working with families. I often look very smart and an expert on Alzheimer’s. I have studied a great deal about the disease and caring with Habilitation Therapy approaches. I don’t really believe there are any experts on Alzheimer’s disease; just people who specialize in it. We learn very quickly there is no Alzheimer archetype to go by; no concrete model or typical patient. Each person is unique as he should be. A person expresses this crazy disease out of his experience coping with the world and its challenges. Whatever worked in the past to make a person feel as if they could relate in the world will be magnified in their response to the disease.
Probably the most difficult person to care for who has Alzheimer’s or any related dementia is the independent strong minded person who never felt they needed anybody. They handled life the way they saw it; they coped well, or perhaps sometimes not so well by others’ viewpoint, without adopting anyone else’s way but their own. I coached a man once whose wife had many difficult to manage behaviors. She resisted care, wandered, refused to wear protective underwear for her incontinence, and became belligerent when bathed or dressed. I asked him on our last coaching visit, “Is there anything in this that is positive for you?” “Oh, yes.” He exclaimed, “She needs me. She’s never needed me before, always so competent. It’s the first time in our 48 years of marriage that I feel essential. That feels good!”
My mother in law was such a woman.

A Patriotic Break

2010-07-09T15:17:00.000-07:00

Instead of working today I attended a birthday celebration of our city's John Quincy Adams at the Church of the Presidents where John Adams, Abigail Adams, John Quincy Adams and Catherine Adams are incrypted. There was a Navy honor guard with a laying of a commemorative wreath about 3 feet in diameter. The church was packed including our US Senator Scott Brown, our mayor Thomas Koch and past mayors and other dignitaries. The music was rousing and evoked tears as we sang America the Beautiful. America is beautiful and although many things she does are wrong (one big wrong is ridding everything American of God) she is still the best place to live. Let us be grateful.

Deliuium in hospitalization of dementia patients

2010-07-09T07:23:00.000-07:00

AN INTERVENTION INTEGRATED INTO DAILY CLINICAL PRACTICE REDUCES THE INCIDENCE OF DELIRIUM DURING HOSPITALIZATION IN ELDERLY PATIENTS, VIDAN M, SANCHEZ E, ET AL. JOURNAL OF THE AMERICAN GERIATRICS SOCIETY, 2009: 57 (NOVEMBER): 2029-2036

OBJECTIVES: To analyze the effectiveness of a multicomponent intervention integrated into daily practice for the prevention of in-hospital delirium in elderly patients.
DESIGN: Controlled study comparing an intervention in a geriatric unit (GI) with usual care in two internalmedicine services (UC).
SETTING: University Hospital in Madrid, Spain.
PARTICIPANTS: Five hundred forty-two consecutive patients (170 GI, 372 UC), aged 70 and older, with any of the risk criteria for delirium (cognitive impairment, visual impairment, acute disease severity, dehydration).
INTERVENTION: Educational measures and specific actions in seven risk areas (orientation, sensory impairment, sleep, mobilization, hydration, nutrition, drug use). Daily monitoring of adherence.
MEASUREMENTS: Baseline characteristics, risk factors for delirium, and quality care indicators were analyzed. The primary endpoint was incidence of delirium assessed daily. The secondary endpoint was functional decline, defined as loss of independence in any of the activities of daily living. The intervention effect was evaluated using logistic regression analysis.
RESULTS: Delirium affected 11.7% of the GI group and 18.5% of the UC group (P=.04). After adjustment for confounders, the intervention was associated with lower incidence of delirium (odds ratio=0.4, 95% confidence interval=0.24–0.77; P=.005). In the patients who experienced delirium, severity, length, and recurrence of episodes were similar in both groups. Adherence to the intervention protocols was 75.7%. The intervention reduced the rate of functional decline (45.5% in GI vs 56.3% in UC, P=.03) and improved other quality indicators (e.g., mobilization and physical restraints reduction).
CONCLUSION: A multicomponent, nonpharmacological intervention integrated into routine practice reduces delirium during hospitalization in older patients, improves quality of care, and can be implemented without additional resources in a public healthcare system.
KEVIN’S COMMENTS: Delirium is a common and serious geriatric problem that affects a high percentage of older adults admitted to hospitals. Delirium may persist for weeks and is very common in persons transferred from hospitals to nursing homes and assisted living communities. It is associated with considerable morbidity and mortality. Recognition is important in order to look for reversible causes such as drugs, electrolyte disturbances, infections, etc. This study demonstrates that delirium is a preventable problem and does not require additional resources. Several interventions aimed at reducing well-recognized risk factors for delirium (such as sensory deprivation, sleep disturbance, dehydration, and inappropriate drug use) markedly reduced the incidence of delirium in the study group. By Dr. Kevin O'Neil

Balancing Caregiving and Work

2010-07-07T13:06:00.000-07:00

Recently at a workshop for employers about caregiving and work productivity, a new word was introduced; ‘presenteeism’. This term describes an employee who is present bodily at work but not emotionally due to concerns about an elder at home. Work productivity starts to decline; the employee himself is often the first to notice. They come in late due to duties at home, perhaps getting mother to a day program, phone calls are made, to check in at home to be sure everything is ok or perhaps to follow up on a doctor’s suggestions for medication and treatments. Many caregivers do not recognize the stress they feel is due to caregiving responsibilities at all, and continue to handle everything themselves; home care, family obligations and work. Their attention to their personal needs takes a back seat, adding to the stress. Physical and emotional illness may exacerbate the strain of the balancing act, or be the result.
Caregivers generally experience an incremental increase in responsibility for an elder, not identifying themselves as caregivers at all. They may first help handling the bills, then help with the shopping, perhaps later accompany their family member on doctors’ appointments or pick up medications. They may start to notice the elder is not nourished adequately, preferring to eat simple sweets and tea rather than prepare a meal. So they stop in more frequently to deliver or prepare and share meals. The caregiver may finally realize that they need help. “Where do I go to find what help is available?” “Am I doing the right thing by mom?” “Is this the right decision?” Finally, “I can’t do this alone anymore.”
When the elder has Alzheimer’s which affects memory, reason and judgment, the responsibilities of the caregiver increase significantly. Safety and well being become a major concern. Alzheimer’s, a progressive cognitive illness, presents the caregiver with a long term commitment. This realization alone can be overwhelming. There is a comparison made that someone caring for a person with Alzheimer’s experiences the same stress as a soldier in combat; both are on duty 24/7, hyper-vigilant, waiting for the next emergency to appear, and not knowing when it will happen.
Many employees, I learned at the conference, do not access their Employee Assistance Program. Perhaps they fear being seen as weak and will eventually lose their job if they reveal the struggle balancing work and caregiving. Many are unaware of the wealth of information to be gained about resources for caregivers through their employer. Instead, they continue to muddle along alone.
It is the job of the Employee Assistance Program to research resources for their employees; it is unfortunate that caregivers don’t access help from their EAP sooner. Resources for caregivers can also be accessed at the local council on aging and, in Massachusetts, at one of the 27 Aging Service Access Point agencies that provide numerous services to elders and their caregivers. Each ASAP, funded and overseen by the Executive Office of Elder Affairs, has a care management program for income eligible seniors over 60. Elders served under the care management program receive services like nutritional meals, housekeeping, laundry and shopping services, companionship and personal care. Their caregiver programs offer help for those family members caring for elders. Caregiver programs offer a variety of services including respite funds for in home helpers or a few days at a local day program for seniors, as well as an array of other services to ensure safety. There are also grant funded programs and scholarships to further help caregivers.
Another helpful resource is a caregiver support group. These groups help minimize the feeling of being alone; caregivers find others who, like them, need information and support in the caregiving role. Support groups on site at work, perhaps during the lunch hour, ease the employee attending one after work hours. A list of groups specific for Alzheimer’s can be found on the Alzheimer’s Association website www.alz.org/manh serving Massachusetts and New Hampshire.
It is essential that the caregiver is educated about Alzheimer’s disease and behavior changes to expect. There are always significant behavior changes if it is a memory disorder. Learning how to relate to someone with Alzheimer’s is important to gain their cooperation. Education and support significantly reduce the perceived burden of care. Research shows that telephone support for the Alzheimer caregiver can reduce the perceived burden of care. Recognizing their limits, learning about resources and asking for help, the caregiver finds relief in the care partnering role. Coping skills are improved as the care is shared, and work productivity is enhanced.

Beverly Moore is owner of StilMee™ The leader in Alzheimer coaching, a company exclusively dedicated to educating, empowering and supporting care partners through Alzheimer caregiving. StilMee coaches are available for in home coaching in Massachusetts including Cape Cod, and northern Rhode Island. Telephonic coaching is available anywhere in the United States. Look for the website www.StilMee.com for information. Beverly is also author of the book Matters of the Mind…and the Heart, Meeting the challenges of Alzheimer care, published July 2009. Go to her blog www.StilMeeCoach.blogspot.com

Five Facts every caregiver must know

2010-07-05T13:41:00.001-07:00

FIVE FACTS EVERY ALZHEIMER CAREGIVER MUST KNOW

1. THE PERSON WITH ALZHEIMER'S IS STILL A FULL PERSON; RELATE TO HIS PERSON

2. THE PERSON WITH ALZHEIMER'S CAN LEARN; WHEN GIVEN TIME AND LOW FRUSTRATION LEVEL,
HE CAN LEARN NEW THINGS AND ENJOY IT. GO TO WWW.SERPERMETHOD.COM FOR MORE.

3. THE PERSON WITH ALZHEIMER'S HAS MORE BRAIN POWER LEFT THAN IS GONE; TAP INTO
WHAT IS REMAINING AND ENJOY HIM.

4. THE PERSON WITH ALZHEIMER'S HAS A FUTURE (MAYBE MORE THAN YOU OR I HAVE).
MAKE IT A MEANINGFUL FUTURE.

5. AN ALZHEIMER CAREGIVER CANNOT DO IT ALONE; ASK AND ACCEPT HELP.

Driving and the elderly

2010-07-02T07:06:00.001-07:00

I attended an Alzheimer partnership meeting last week. Dr. Bob Stern from BUAD Research Center gave an update on driving and elders. Privilege to drive means INDEPENDENCE. For this reason, it is hard to terminate one's own driving never mind have to terminate another's. Most elders today are more self monitoring and stop driving when they feel their vision, hearing, strength, flexibility and ability to be attentive to their surroundings is impaired.
Driving and dementia is another story. People are often unaware of their deficits and continue to drive. However, many impairments in dementia make this hazardous. Slow intake and processing of information in the environment, insigtht, judgment, ability to attend to a task, spatial skills, contrast sensitivity, problem solving etc are all challenged in Alzheimer's. Seventy percent of people with Alzheimer's live in the community and twenty percent live alone. The question is, Who is driving?
Dr. Stern reviewed the testing that is done both real and simulated. All had their flaws. His team is working on devising a simple short tool that could be used in an office that would help determine the safety of a person continuing to drive. The team is looking for 55-95 year olds with and without memory loss who would be subjects in this study. It requires testing at the Center and an on the road driving evaluation. We all need to promote research participation to develop this tool.
He added that the law just passed to address the driving and elder challenge is not much different from what is already practiced in Massachusetts. People 75 don't need to be retested as suggested, AARP was against any age descrimination at all, and eye exams were all that would be required every five years as is already the case.
The talk generated much discussion and questions.
I'm in a study at BUADRC; the HOPE program, trying to see what normal cognitive changes in aging are and which are signs of cognitive decline.

How a person with Memory Loss Thinks Differently

2010-06-28T13:09:00.000-07:00

How a person with memory loss thinks differently:

• Thinking is slower so understanding takes longer
• Remembering is hard at first, then perhaps impossible
• What is remembered may be different from what you remember
• Understanding explanations is hard.
• Time and sequence of events may be distorted
• Social appropriateness may be lacking
• Organizing and doing tasks in the right order is more difficult
• It is harder to pay attention and concentrate on something
• Memory for recent events is lost before memory for events of the distant past

How you can help by relating differently:

• Say the person’s name first, then start speaking to him.
• Turn off background noises when having a conversation.
• Maintain his attention; use eye contact.
• Speak slower and simpler; avoid complex concepts.
• Stay on one subject; avoid switching the subject mid-sentence.
• Avoid long explanations; e.g., why he must do something.
• Avoid questions asking What? Who? When? & especially Why? Use questions that can be answered ‘yes’ or ‘no’.
• Repeat information as necessary.
• Apologize if you’ve expected too much or been rushed.
• Encourage participation in family life; this gives life meaning.
• Go slowly when doing something & do it together if you can.
• Do not correct him if he is wrong; do not argue with what he thinks is true.
• Treat him with respect. He needs to know that he is important to you.
• Understand that his behavior is his way of staying in touch with what is going on to feel in control of his life.

www.StilMee.com StilMee@comcast.net

Eye health and dementia progression

2010-06-25T07:49:00.000-07:00

Untreated Poor Vision in Seniors Linked to Dementia

This is an article from Right At Home's June Newsletter worthy of passing on.
Beverly

Experts have long known that dementia affects vision. strong>Now, new research shows that failing to treat visual problems may speed the progression of Alzheimer's and other memory loss.

According to a new study from the University of Michigan Health System, elderly people with untreated visual disorders are significantly more likely to develop Alzheimer's disease, the most common form of dementia. The study used Medicare data, and shows that those with poor vision who visited an ophthalmologist at least once for an examination were 64% less likely to develop dementia.

The study, which appeared in the American Journal of Epidemiology, may draw a new picture of poor vision as a predictor of dementia rather than as a symptom after the diagnosis.

"Visual problems can have serious consequences and are very common among the elderly, but many are not seeking treatment," says lead author Mary A.M. Rogers, Ph.D, research assistant professor of internal medicine at the University of Michigan Medical School.

For the study, Rogers and her colleague Kenneth M. Langa, M.D., Ph.D., professor of internal medicine, analyzed data from the nationally representative Health and Retirement Study, and records from the Centers for Medicare and Medicaid Services. The study was based on the surveys and medical information from 625 people compiled from 1992-2005.

Of those who developed dementia during the course of the study, only 10% had excellent vision at the beginning of the study. Of those who maintained normal cognition, 30% had excellent vision. "Our results indicate that it is important for elderly individuals with visual problems to seek medical attention so that the causes of the problems can be identified and treated," Rogers says.

The types of vision treatment that were helpful in lowering the risk of dementia were treatments for glaucoma, retinal disorders, and other eye-related problems; and surgery to correct cataracts.

Proper vision is a requirement for many of the activities that have been found to lower the risk of Alzheimer's disease. These include reading, playing board games, other mentally stimulating activities, social networking, as well as physical activity such as walking and routine exercising. A visual disorder may interfere with normal mobility, and may also hinder a person's ability to participate in such activities.

Many Seniors Lack Vision Care Coverage, Eye Health Information

Vision problems and blindness are among the top 10 disabilities among adults, and can increase the risk of other health conditions and even premature death. So eye care is vital for healthy aging. However, according to Rogers, "Many elderly Americans lack adequate health coverage for vision exams, and Medicare does not cover preventative vision screenings for most beneficiaries. So it's not unusual that the elderly receive vision treatment only after a problem is severe enough to warrant a visit to the doctor when the problem is more advanced."

In addition, according to a survey conducted by the National Eye Health Education Program, fewer than 11% of respondents understood that there are no early warning signs for eye problems such as glaucoma and diabetic retinopathy.

"While heart disease and cancer death rates are continuing to decline, mortality rates for Alzheimer's disease are on the rise," says Rogers. "If we can delay the onset of dementia, we can save individuals and their families from the stress, cost and burden that are associated with Alzheimer's."

Source: University of Michigan. Funding for the study was provided by the National Institute on Aging.

Learn More

The National Eye Institute offers consumer information about vision care and vision disorders.

Sequencing; a habit

2010-06-22T12:12:00.000-07:00

I attended Dr. Lennox'talk this morning at the Atrium in Quincy entitled 'What is so funny about challenging behaviors?' After a few minutes I realized I'd heard this talk before, but as it is a salient topic, behavior, I stayed. It's always good too to get fresh material to add to my arsenal for giving presentations about the behaviors of Alzheimer's.
Well, something struck me as quite important in the care of the person with Alzheimer's; sequencing habits. We all have routines we do each morning. The question was asked What five things do you do upon arising? The only 2 activities that were common to all were toileting and brushing teeth. Then he asked, 'Which arm do you put into the coat or sweater first?' He noted when the sequence is reversed it causes some anxiety. I recently felt this when I decided to shop from the opposite end of the market than I usually do. I routinely go to the vegetables and automatically pick up onions, broccoli, mushrooms, lettuce, etc. Starting at the other end where the orange juice, ice cream, eggs, etc are made me feel quite awkward. Why? My sequence habit was disturbed. I am cognitively intact and it upset me; what does it do to the person who has a cognitive deficit, I wondered. Think about the ramifications of this knowledge in how we work with this population. I have to give this more thought. Today when I shop (again) I will save myself the trouble and start at the usual end of the store.

Adult day programs

2010-06-20T13:28:00.000-07:00

I was talking with Tammy, the owner of Pleasantries, an adult day program in Marlboro for early stage Alzheimer folks. She said that caregivers often wait too long to explore adult programs and the family member with Alzheimer's is denied productive enjoyable days in a program because they can't participate fully enough. It made me think that caregivers don't understand the value and purpose of a structured day or the differences in programs. Tammy's is structured for people who wish to engage with others and are able to be. There are social day programs that are for folks without medical conditions that would require attention from a medical staff. Then there are the adult day health programs that offer a variety of services for the person attending, both physical and social. This can vary from ability to remind to take medications to giving IV solutions, doing physical therapy and changing wound dressings in addition to being in activities with others.
We StilMee coaches most always recommend a day program for two reasons; one, it is good for the person with dementia who most often cannot initiate pleasureable activity throughout the day, and two, it is good for the caregiver to have time to pursue his or her own pleasant activities. I knew one caregiver who started out each morning with a walk around a pond near her home. She took care of her need for this first. She would then have energy to get her mother up, bathed, dressed and ready for an adult day program. She would get all her work done while mom was being cared for by a staff of people who are compassionate toward people like her mother, and she felt more carefree to do what she needed and wanted to do. There is a common adage for caregivers; take care of yourself first, then you can take care of someone else. Sound advice.

Second Edition

2010-06-19T14:45:00.000-07:00

I've been thinking about how much I've learned since I finished writing Matters of the Mind two years ago, and how many more wonderful stories of caregiving I've heard and been privy to. And some people have asked when the 2nd edition is coming. Since I'm a new author I have not a clue how a 2nd edition gets created and published. But, I will write it, as soon as I find out how. I imagine one expands on what is there already and adds new learnings, stories, research findings, etc. I'm already jotting notes about some funny and some less funny stories that have to be included. Add yours here and I'll put them in the book. I invite you to send them to me at StilMee@comcast.net

3 myths about Alzheimer's

2010-06-19T14:36:00.000-07:00

I was on Greg Porell's South Shore Senior News radio this morning on my monthly Alzheimer's spotlight. I always look forward to these; giving out 6 minutes of tidbits about Alzheimer's. John Zeisel PhD of Hearthstone brought up these myths. It is disturbing to think some still believe them to be true. # 1. People with AD cannot learn. Well, ask Lynn Serper of the SerperMethod if that is true. Try to sit in the usual place at the table of the person with AD and see if she doesn't remember it is HER seat and you don't belong there. # 2. People with AD are no longer a person. I met a salesman at a recent event who, when he learned what I did, said, "They aren't really a person anymore, are they?" I nearly lost my cool, but instead did some serious teaching. Engage the person with AD and talk about something that evokes positive memories for him and see his 'person' emerge. # 3. People with AD have no future. Well, I may have a day to live, or a year, or another 3 decades. The person with AD has between 2 and 20 years to live. Is that enough of a future to pay attention to its being a meaningful one. Each day is a treasure to us all. People with and without a progressive disease like Alzheimer's need a purpose to get up in the morning and a sense of well being and value during the day. Caregivers are being taught by StilMee coaches how to bring value and purpose and control back to the person with Alzheimer's. It is a wondrous sight to see.

Food for thought

2010-06-10T07:25:00.000-07:00

This good bit of information from Stafford Hill of Plymouth e-newsletter for June...

Low blood levels of vitamin D effect more than bone health. Studies find a greater risk of heart problems and depression in older adults. In one study, people taking a vitamin D supplement were 7% less likely to die than those who didn't take a daily supplement.

The darker a person's skin, the more difficult it is to get vitamin D from sunlight. Fair-skinned people might be willing to risk the 10 to 15 minutes they need to get enough. But there's still a problem. Unless you live south of a line from Los Angeles to Columbia, S.C., there isn't enough sunlight year round to produce all the vitamin D you need. Most people need other sources. Your diet may increase your risk if it's low in milk or the foods that naturally contain vitamin D, such as salmon and eggs. In the U.S. nearly all milk if fortified with vitamin D, and many brands of OJ are too. Even some cereals contain a healthy dose. So make every day a "D" day.

Choose activities wisely

2010-06-09T13:54:00.000-07:00

So often I visit a caregiver whose family member is sitting in front of the television kind of zoned out. TV is probably the poorest activity for someone with Alzheimer's. Why? TV is not interactive, is ever changing from programming to advertisements of several different products in the span of a few minutes, and the program is often a subject matter unsuitable for a person already having difficulty staying in touch with what is going on around him.
People with Alzheimer's have slowed processing of information meaning it takes longer for them to absorb information and decide what to do with it. Switching subjects is very hard and holding on to information is difficult at first, then very hard to not able to at all.
I remember a caregiver who was very tired as his wife with Alzheimer's was up much of every night insisting that bad people were trying to get into the house. She would be very frightened, asking her husband to 'check the doors and windows'. Upon questioning, I learned it was their lifelong habit of watching the 10 o'clock news before going to bed. I suggested that perhaps she couldn't let go of the news and translated it into happening right there in her house. He substituted a calming video of lovely dressed ice skaters at 10 o'clock instead and they watched the news at 6 instead. Her delusions disappeared and he got much needed sleep.
Sometimes a person with Alzheimer's cannot differentiate reality from what is on TV and will become frightened. As a caregiver it is important to take note of what upsets and causes fear and then get rid of the fear provoking activity.
Activity of well known tasks like helping dust, set a table, help do laundry, create a photo collage and other enjoyable activites, perhaps accompanied by soft music will induce good feelings instead of fearful ones.
Another time I coached a caregiver whose husband wasn't responding to her request to come to dinner. She would tell him dinner was ready and he would look at her perplexed, not knowing what to do. I discovered their passion in recent years was dancing. To get him to the table where the visual cue of food on a plate told him it was time to eat, she turned on dance music, asked him for this dance, and danced him to the table! Ingenious!

Tips from Nancy Lombardo Ph.D of BUADRC

2010-06-06T17:15:00.000-07:00

"Eat Your Veggies"
is at the Heart of Memory Preservation Nutrition®

Continuing our series on Consumer Guidelines for a Brain Healthy Nutrition, this month's feature is VEGETABLES. Study after study, using different populations around the world, has concluded that people who eat more vegetables than others in the study, have lower risk of cognitive decline and brain diseases such as Alzheimer's disease (lead scientists include Amy Graves, Martha Morris, and James Joseph).

A variety of green leafy and brightly colored vegetables, as well as dried beans and peas and low sodium vegetable juice, are essential to brain and body health. Vegetables, beans and peas are major elements of the Mediterranean Diet and the DASH diet. People scoring high on each of these diets have been shown to have lower risk of cognitive decline (see publications by Nikolaos Scarmeas, MD at Columbia School of Medicine, and Heidi J. Wengreen with the Cache County (Utah) Study on Memory, Health and Aging).

Among vegetables, the stars appear to be leafy green vegetables which contain high levels of antioxidants including vitamins A and E, as well as traces of omega 3's, and other brain healthy nutrients. Leafy green vegetables include spinach, broccoli, delicious Swiss chard, kale, collard greens, all the bok choys and their relatives, pea stems/leaves (all the rage in Chinese restaurants) and all the lettuces except iceberg, and many many more. Explore to give your taste buds a treat!

Romaine lettuce, among other leafy vegetables, also contains high levels of S-adenosylmethionine, more well known as SAM or SAMe, which Professor Thomas Shea of the University of Massachusetts in Lowell, discovered to be important to brain health and related metabolic processes in the brain. Our bodies like all living cells make some SAM but usually not enough to meet our needs, and so it is essential to ingest more of it in the food we eat. There are also supplements available, such as Dr. Shea's/U Mass Lowell's patented product licensed and marketed as "Great Mind®" by Nature Made. Which contains SAM, folic acid, B-12, N-Acetyl Cysteine (NAC), and Acetyl L Carnatine.

Aim high, as vegetables are key to brain and body health. 7-10 portions a day of a variety of vegetables is ideal. You can obtain at least one portion's worth by drinking a glass of low sodium vegetable juice a day. Best are the 100% vegetable juices such as low-sodium V-8. Those mixed with fruit juices may taste better to you but you are then drinking less vegetable juice and more fruit juice laden with fructose (a form of sugar).

Most Americans do not eat many or hardly any vegetables. And French fries and ketchup do not really count, though they are better for you than a donut or pastry.

Another solution for people who can't or don't eat enough vegetables and fruits is a supplement with impressive research credentials comprised of dehydrated vegetable/fruit juice in a capsule or delicious chewable form (the tastiest "gummy" you ever experienced) ...salt, sugar is removed so safe for diabetics, and essential nutrients of 17 different fruits and vegetables are included so it is classified as a whole food by the FDA (no sales tax in MA!). Special orders for just the vegetable form is possible. Contact me for more information or check out my website: Nancy's Juice Plus Website

Also check out delicious veggie recipes on my other website: www.healthcareinsights.net
Public invited to five presentations

Study of Spouses with dementia

2010-06-04T06:10:00.000-07:00

If Your Spouse Gets Alzheimer's, You Might, Too
Risk is 6 times higher than for other husbands, wives, study finds
Lifestyle

WEDNESDAY, May 5 (HealthDay News) -- Older adults whose spouse has Alzheimer's or another form dementia face an increased risk of dementia themselves, a new study finds.
It included 2,442 people (1,221 married couples), aged 65 and older, in Utah who were dementia-free at the start of the study. During 12 years of follow-up, 125 husbands and 70 wives developed dementia, and both the husband and wife developed dementia in 30 couples.
After adjusting for a number of factors, the researchers found that people with a spouse who developed dementia were six times more likely to develop dementia themselves than people whose spouses never had dementia. Men had a higher risk than women. Older age was also significantly associated with dementia risk.
"Future studies are needed to determine how much of this association is due to caregiver stress compared to a shared environment," study leader Dr. Maria Norton, of Utah State University, said in a news release. "On the positive side, the majority of individuals with spouses who develop dementia did not themselves develop dementia, therefore more research is needed to explore which factors distinguish those who are more vulnerable."
The study was published May 5 in the Journal of the American Geriatrics Society.
"Given the significant public health concern of Alzheimer's disease and other dementias, and the upcoming shift in population age composition, continued research into the causes of dementia is urgent," Norton said.

Television

2010-06-02T12:24:00.000-07:00

I want to be on national television to tell the story of Alzheimer caregivers we've coached for the last 10 years. If you know of a person I can contact to make that happen, great! Most of the news focuses on the negative aspects of Alzheimer's. I'd like to tell a more positive story of the heart of the Alzheimer caregiver.

Anti-Cancer Superfoods; Do they really work?

2010-06-02T12:20:00.000-07:00

Here is an article I found on WCVB.com. Ask Nancy Lombardo PhD from BU Research on Alzheimer nutrition. She says these also work to keep your brain healthy and help those with Alzheimer's. Remember what is good for the heart is good for the rest of the body. We are not disconnected at the neck; our brain needs our utmost attention. Eat up!!

By Melanie Haiken, Caring.com senior editor

The short answer to this question is -- drum roll, please -- yes. They really do. While studies are ongoing, and in many cases experts still don't know exactly how these superfoods work, there's strong evidence that certain fruits and vegetables rich in plant-based nutrients can both prevent tumors from starting and halt their growth. Here, the top foods to work into the family diet if you'd like to cut cancer risk or help those with cancer recover. And who wouldn't?
1. Blueberries, Acai Berries, Raspberries, and Cranberries.
The rich, dark colors of blueberries, Brazilian acai berries, raspberries and cranberries come from phytochemicals that protect against numerous types of cancer. Most recently, researchers at the University of Florida found that the active ingredient in acai berries destroyed cancer cells when tested in cell cultures. And blueberries and muscadine grapes contain compounds that recent research shows cause cancer cells in the liver to self-destruct. In studies particularly important to women, cranberries have recently been discovered to be an important weapon in the fight against deadly ovarian cancer. Studies reported at the annual meeting of the American Chemical Society found that ovarian cancer cells that were becoming resistant to platinum chemotherapy – the standard of care for ovarian cancer – became six times more sensitive when exposed to a compound in cranberries.
The anti-cancer properties of all these berries are so strong that researchers have developing concentrated supplements and other products such as purees and concentrates.

An article on wandering from Right at Home

2010-05-28T12:10:00.000-07:00

"Wandering" in Dementia Patients: the Home Care Perspective
Wandering is one of the greatest challenges faced by family caregivers whose loved one has Alzheimer's or other memory loss. Over 60% of Alzheimer's patients will become lost at some time. Most are gone only briefly, though long enough to frighten their loved ones. Others may be lost for an extended period of time, and unfortunately, there are news reports each year of missing Alzheimer's patients who are never located. It is a sobering fact that if a person with dementia is lost for over 24 hours, he or she is likely to suffer a fall or other serious injury, or even death from injury or exposure. Reports one family caregiver, "The thought that Dad would climb onto a bus at the corner and we would never find him again keeps me awake at night, even on nights when he is getting a good night's sleep."
Why do people with dementia wander?
For people with Alzheimer's or other memory loss, confusion and disorientation make it increasingly difficult to recognize familiar faces and places, even a spouse or child, or a lifetime home. Geriatricians point out that the term "wandering" is something of a misnomer, because many times, in the person's mind, his or her activity is not purposeless. She may be looking for the bathroom but be unable to find it. He may think it is time to leave for work, even if he retired years before. A great-grandmother might be searching for her children, in the belief that they are still small and in need of her care.
Other factors that contribute to wandering include restlessness, agitation and stress; boredom and lack of a sense of purpose; sleep disorders; physical pain; and the side effects of medications.
Keeping loved ones safe
When a loved one with dementia wanders, family often decide that a nursing home or memory care community is the best choice for the person. However, many patients fare much better at home, in familiar surroundings. How can families keep their loved one safe at home, for as long as possible? Home care professionals offer these suggestions:
Observe your loved one's patterns. The first step is to understand as best you can the reason for your loved one's wandering. What are his "triggers"? Where does he usually try to go? During what time of day is he most restless? Does he seem to be looking for something, someone, or someplace?
Adapt the home to keep your loved one safe. Beyond the usual "aging in place" home modifications, you can add special locks to doors, safety gates to prevent exit, and an alarm that will sound if the front door is open. See the resources at the end of this article for information about other home modifications.
Be sure your loved one always carries ID, and a medical alert to tell others he has memory loss. If he doesn't consistently carry a wallet, try a bracelet, pendant, or clothing labels. Contact your local Alzheimer's Association office to learn about their Safe Return program. In addition, more and more families are also using a GPS or other tracking device to help locate loved ones quickly.
Notify neighbors and local merchants about your loved one's condition. Ask them to contact you if they see your loved one alone when he shouldn't be. Having this conversation makes it more likely that others will feel comfortable getting involved.
Find out if your state has a "Silver Alert" program, similar to the "Amber Alert" for missing children. As law enforcement agencies recognize the needs of growing numbers of adults with dementia, more states are implementing this broadcast notification system.
Try "behavior modification" strategies. If your loved one expresses feelings of being lost or abandoned, reassure him he is safe. Redirect him to safe activities that fill his need for a sense of purpose. If "sundowning" (restlessness at night) is a problem, limit daytime naps. In-home care professionals have learned from experience that "correcting" a dementia patient frequently can increase agitation. "Don't correct—redirect" is their guideline.
Hire professional in-home care. With jobs and other obligations, families are often overwhelmed by providing the full-time supervision their loved one needs. For many, hiring in-home care is the answer. In-home caregivers are trained to provide a watchful but non-intrusive presence in the home. Says one home care aide, "We've learned that for many seniors, 'hovering' makes things worse and leads to increased wandering." Families report that they have a more peaceful relationship with their loved one when the home caregiver takes over some of the basic personal care tasks.
A professional caregiver can support the well-being of loved one and family in several important ways:
In-home care provides respite for loved ones. Family caregivers need a break to renew their energy and take care of other responsibilities. A home health aide can fill in occasionally, or several days a week, or full-time. Overnight care is also available if the person with dementia wanders at night.
In-home care helps decrease disorientation. Wandering increases when memory loss interferes with the activities of daily living. A home health aide will help your loved one maintain their comfortable routine, helping with toileting, grooming, and preparing healthy meals.
Home health aides can supervise "safe wandering." Physical activity promotes better sleep and lessens agitation. With a caregiver along, your loved one can take a walk in the park or go on an outing. One home health aide reports, "I am there if my client needs me, but she feels a sense of independence because as much as possible, I allow her to decide where we will walk, when we will sit down."
In-home care promotes appropriate stimulation and activities for your loved one. Boredom is stressful for dementia patients, and increases wandering. Consulting with family, the home health aide will find the right activities to improve their loved one's quality of life. Folding laundry, setting the table, helping in the kitchen, dementia-appropriate crafts, music, dancing, and conversation are a few of the purposeful tasks that can be calming for people in the early and middle stages of Alzheimer's.
Home health aides assist with medication management. A person with Alzheimer's may take medications for the disease itself, for mood or other behavior changes, and for other medical conditions they might have. It is important to take medicines correctly, and it is just as important to be alert for side effects that might increase wandering and other difficult behaviors. A home health aide can provide medication reminders, help organize medications, and be alert for side effects.
In-home care helps those with memory loss remain at home, as comfortably and safely as possible. Home health aides know that caring supervision can enhance your loved one's sense of independence, while providing greater peace of mind for family members.

New research on music and learning in Alzheimer's

2010-05-28T12:03:00.000-07:00

A Special Update for you From BU
Thank you for attending the screening of “I Remember Better When I Paint.” This beautiful documentary highlighted the impact of art therapy for patients with Alzheimer’s disease. At Boston University School of Medicine we continue to conduct research on the disease working toward early diagnosis, better treatment, and ultimately a cure for this devastating disease. We thought you might be interested in a few recent research highlights:
Music and MemoryRecently researchers have shown that patients with Alzheimer’s disease are better able to remember new verbal information when it is provided in the context of music even when compared to healthy older adults. Alzheimer’s disease patients and healthy controls were presented with either the words spoken or the lyrics sung with full musical accompaniment along with the printed lyrics on a computer screen. After each presentation, participants were asked to indicate whether or not they were previously familiar with the song they had just heard. The Boston University School of Medicine researchers found accuracy was greater in the sung condition than in the spoken condition for Alzheimer’s disease patients. However, for healthy older adults, there was no difference in accuracy whether the lyrics were sung or spoken. According to the researchers understanding the nature of musical processing and memory in patients with Alzheimer’s disease may allow the development of effective and comprehensive therapies for this increasingly prevalent disease.
The Eyes Have ItA team of researchers led by Dr. Lee Goldstein of Boston University School of Medicine has discovered that the protein that forms plaques in the brain in Alzheimer’s disease also accumulates in the eyes of people with Down syndrome. The new findings show that the toxic protein causes Alzheimer’s pathology in the brain also leads to distinctive cataracts in the eyes. This discovery is leading researchers to develop an innovative eye test for early detection of Alzheimer’s pathology in both disorders.
These are just two examples of the exciting research ongoing at Boston University School of Medicine Alzheimer’s Disease Center. We cannot do all that we do without the support we receive from our alumni and friends. We hope you might consider partnering with the BU Alzheimer’s Disease Center with a philanthropic gift. Your support will enable the researchers and clinicians to continue their pursuit in finding a cure.
Gifts can be made online at: http://alumni.bu.edu/links/link.cgi?
Harriet Kornfeld, BUSM Development, 72 E. Concord Street L219, Boston, MA 02118. If you have any questions, feel free to call Harriet Kornfeld directly at 617-638-5676.
Thank you,
The Faculty and Staff of the Boston University Alzheimer’s Disease Center

My radio Spotlight

2010-05-20T04:50:00.000-07:00

I'm going to do my 4th Alzheimer Spotlight on WATD with Greg Porell this weekend. After being tested at BU Alzheimer's Disease Research Center a few weeks ago as part of the HOPE study, I began to think of the complexity of memory. I will talk about that this week on radio and expand on it in my column for the South Shore Senior News. Memory is so complex; the more I think about its impact on everyday functioning, the more sensitive I am to what the person with memory loss must feel. One must remember how to do things, what they did yesterday, last week, an hour ago. Memory involves holding on to information and manipulating it to be useful to you. Very complicated indeed. I'm anxious to write about it this coming month. Go to Google and find South Shore Senior News and read some of my previous columns. I can't believe I've been writing it for 4+ years! Love to write!
Beverly

New Trends in Alzheimer Care...Finding the Spirit Within

2010-05-08T11:13:00.000-07:00

Finding the Spirit Within

When I visit my family member with Alzheimer’s, I see her sitting looking blankly ahead, or down, often falling off to sleep. I approach and as she sees my face, her eyes come alive and the wrinkles falling from gravity reverse direction in a gleeful smile, toothless though it may be. She has no idea who I am anymore; she just knows she feels happy with me and that somehow I belong to her. Her pleasures now are things she tastes, sights she sees, and feelings she feels. Hearing is all but gone, so getting a response from a question asked is difficult at best. How can I reach the spirit within her?
As cognition declines due to dementia, spirituality comes alive. Imagination is enhanced and emotional experience as well. Appealing to the senses remaining is the key. Emotional memory does not die in Alzheimer’s. Tap emotional memory.
What are emotional memories? Think about a memory you have that is very positive or perhaps negative .Is it the taste of your mother’s apple pie? Is it the smell of the pipe your favorite uncle smoked? Is it the view from a mountain you climbed? What feelings are evoked? Why do you think that is a memory you retain?
In dementia we have to look at behavior as a way of ‘speaking’ to us when language is difficult. As use of language decreases, doing something is the way a person with dementia expresses his wants, needs and feelings.
We need to appeal to emotion more than the ability to think, reason, use logic or remember. Increase positive experiences and decrease or eliminate negative experiences to avoid conflict and aggression.
Aggression is simply a way of saying behaviorally “I’m frightened.” “Slow down.” “I don’t understand what you want.” “Don’t take that from me.”
Some suggestions: look at photos of favorite people or places and YOU talk about them. Note the response. Is it one of interest? Joy? Is she frowning or is a smile beginning to form? You’ll soon discover what brings a positive response and have tools to spend quality time with your family member with memory loss.
Beverly Moore
StilMee™
The Leader in Alzheimer Coaching

The Nature of Caring; A talk I gave in 2008

2010-04-25T11:11:00.000-07:00

The Nature of Caring; the Helper’s Journey
Beverly L. Moore

What is caring? Why do people choose to care for others? How do we keep caring without burning out? People through the ages have taken care of others; their family members and sometimes strangers. The story, the Good Samaritan, in the Bible (Luke 10: 30-36) is a story of a wise compassionate helper. While two religious leaders passed by a wounded man in the road, a Samaritan stopped, washed and bound the man’s wounds, placed him on his donkey, brought him to an inn, and paid for his stay at an inn while he recuperated. He returned on his return trip to see if the innkeeper needed more money to care for the wounded man. Why did he stop when the others didn’t? He had compassion.

All of you are here because you are compassionate people. You’ve taken it upon yourselves to help another lead a healthier safer life in sickness of body, mind or soul. You are special people.

I’ve learned some things working with caregivers for some 30 years; first, most caregivers don’t see themselves as caregivers at all, and expect no recognition for what they do. They just do what they feel needs to be done. “I’m his wife, of course I am going to care for him.” “My mother cared for me all my life; now it is my turn to care for her.” Others with little motivation to care, simply say “someone has to do it; I guess it is me.”

Caring can take the form of being there emotionally, socially, spiritually, financially, physically to someone disabled. There are all kinds of disabilities; some may not be apparent to a casual observer. You can’t see depression, mental illness, or a cognitive impairment like Alzheimer’s disease. The cognitive disabilities call for a different kind of care. There is sometimes little cooperation from the person being cared for, making care more difficult and emotionally stressful, and lonely if done alone.

When a person needs help short term giving help is often doable. When that short term turns into a long term commitment one must give over and over, sometimes with little improvement, perhaps little thanks from the person cared for or from other family members.

There are stages in caregiving, and the needs are a bit different in each. In each season or stage there are pleasures and pitfalls.

When there is an awakening to a need which I call the spring season, education and resources are needed. Once these are in place the caregiver feels empowered to make a difference. I call this the summer season of caregiving. The caregiver feels satisfaction in being able to make a difference. A caregiver needs this feeling of satisfaction and control to persevere on the journey. Later on, however, there is a time when the caregiving continues and one sees little, slow, or no improvement, perhaps even decline in spite of one’s best efforts. I call this the fall season, when tiring of an often thankless job is common. In this stage the caregiver may need new information, new management tools and further resources as well as emotional support during the grieving process. The last season is winter, that period of saying goodbye, perhaps deciding that long term placement or hospice is needed. This is time for grieving the loss and thinking about moving on in life. ( I believe there is ongoing grief in a progressive illness as well as an anticipatory grief in looking to the future.)

What keeps us going through these stages? It is said that the caregiver needs 3 things; satisfaction, a sense of control, and validation. What gives you satisfaction to keep going? What does that look like? Wherein do you find a sense of control over the progression of the disability or disease? And where do you get validation for what you do?

The pleasures or benefits of the caregiving journey:
• Discovering who you are anew
• Discovering a sense of mastery
• Discovering new ideas, interests, skills
• New or renewed relationship with the person cared for.
• A new relationship with other family and friends
• Time to say ‘thank you’
• Time to say ‘I forgive you’

There are times, however, when none or few of the needs are met. We care as if involved on a continuum; sometimes we need to detach ourselves, other times we become over involved. A healthy place is to have a detached involvement, a place of keeping ourselves intact emotionally while deeply involved in caring. It is almost a professional stance that is self preserving. Because our caregiving is personal, not ‘professional’, we are apt to feel burnt out from time to time. Remember, only people ‘on fire’, burn out. Having compassion is the nature of, and a risk in caregiving. How can we avoid getting burnt out and falling into the ‘helper’s pit’?

The pitfalls of caregiving are:
• Trying to do it alone
• Refusing relief
• Doing it too long
• Jeopardizing one’s health and well being in service of another.

Can you add to this list? How about anger and resentment? How does that creep in and what do you do about it?

I’ve also learned that each caregiver has a ‘perceived burden’ in the experience. Each one’s tolerance is different; for one, a task is nothing, to another, a major problem. Each person needs different help, each sees respite or relief differently. It is a personal journey, so…………..

What is caregiving to you?
What are the rewards?
Do the rewards outweigh the problems?
What are the problems? What is the ‘perceived burden’ to you?
What would ease the burden of caring for you?
What season of caregiving are you in?
What do you need to keep going?
What does respite (time out) look like to you? Do you take it?
Do you accept help from others when offered?
What do you do when you need help and no one offers? Can you ask?
How do you handle others resistance/refusal to helping you?
Where or to whom do you go for relief or comfort?

Beverly L. Moore, RN, CS

StilMee™
The leader in Alzheimer coaching™

‘ Making for a more peaceful caregiving journey’

Serving Eastern Massachusetts and northeastern Rhode Island
Serving anywhere in the U.S.A by telephone.
www.StilMee.com

Sound Advice

2010-04-22T11:32:00.000-07:00

May is National Good Hearing Month. I had to get 2 hearing aids last year after I discovered a 50% hearing loss. I was feeling isolated in conversation, unable to hear the exercise instructor at the gym I go to daily, uncomfortable at family functions when everyone laughed at some silly joke a grandchild said, and not hearing invitations to other events at times. I was the one who noticed and I got help.
What happens to the person with a cognitive disorder who already feels left out, somewhat confused in conversation, and missing the point of an invitation or a story? We must do everything to enhance life for the person with memory loss. Adding a hearing deficit to an already compromised existence is preventable. Don't just ignore signs of hearing loss in yourself through pride, and don't ignore them in your family member with dementia. Signs can include isolation, suspiciousness, missing the understanding of conversation or answering inappropriately, as well as withdrawing, depression and seeming confusion. Hearing corrected can make the difference between feeling left out of family life and feeling like a worthy member who is valued.

Educate yourself

2010-04-16T12:18:00.000-07:00

I have a spotlight on WATD one Saturday a month with Greg Porell's South Shore Senior radio show. Tomorrow I'll talk about the value of activity to the person with Alzheimer's or related memory disorder AND their care partner. People with Alzheimer's have a hard time initiating meaningful and enjoyable activity and if someone doesn't do that for them, they pace or rummage or wander trying to find something or someone to bring them enjoyment. This is a tall order for caregivers especially if the person hasn't had a full social life. An adult day program is ideal for introducing socialization, fail-free (low frustration high satisfaction) activities and nutrition as well.
The TV is the worst form of structure as it is not interactive unless shared with another person who makes comments about the program. It is also usually confusing as the scenes change from programming to commercials which are not related to the program. Lack of attention, retention and concentration make TV a poor substitute for a person.
Beverly

FAQ

2010-04-01T13:36:00.000-07:00

There are questions that are asked AND questions that should be asked by the caregiver for someone with Alzheimer's or a related memory disorder. Here they are.

FAQ:

1. She accuses me of things I didn’t do; how should I respond?
2. Does every Alzheimer patient get violent?
3. How will I know when to look for a nursing home?
4. Can Alzheimer’s be prevented and how?
5. Can a person catch Alzheimer’s? I don’t remember things lately.
6. How long does this disease last?
7. Should I take fish oil? Does diet matter?
Questions that should be asked---
1. Is getting a diagnosis by a neurologist necessary?
2. What is he experiencing; can I understand it?
3. What do I need to know as a caregiver for someone with Alzheimers?
4. Is there any other treatment besides medicine?
5. What happens at a diagnostic workup?
6. What are the resources I should know about in my area?
7. Should I go to a support group? Why? Do they really help?

What are your questions?

Speaking Alzheimer's

2010-03-26T12:38:00.001-07:00

Just back from a week in Klamath Falls Oregon and eager to resume searching out talented professionals in New England (for now) who wish to add Alzheimer coaching to their practice. Serving caregivers is so rewarding.
I was on WATD in Marshfield (Massachusetts) this morning (to be aired tomorrow @
8am) speaking about learning to speak Alzheimer's. The best thing to learn to enhance life for your care recipient and ease caregiving for you is to learn a new way of relating. Much of the frustration, yelling out, and aggression is borne out of the lack of education of the caregiver. S/he has to learn a new way of talking; slower, face to face, simpler, with no distractions, etc. I've written a paper called 'How persons with memory loss think differently and How you can help by relating differently'. If you want a copy of it sent to you via email, email me beverly.moore@stilmee.com. I'd be happy to send you a copy. There are about 25-30 sound suggestions.

2010-03-15T13:51:00.000-07:00

The Heart of the Alzheimer Caregiver

Not all caregivers have a willingness to give care when their family member is diagnosed with Alzheimer’s or other memory disorder. They are scared and unsure what to do and say.
Can being invested in caring in a positive way be learned? I know it can; I’ve seen a very reluctant caregiver daughter develop a heart for caring for her mother who had not been there for her in the past. How is this accomplished?
Caregivers need three (3) things to care willingly. The first is having a sense of competence in managing the changes to their family member that Alzheimer’s brings, The second is validation; being appreciated for what they do. The third is finding satisfaction in the job. Often this is a challenge if going it alone.
It becomes doable with the help of a coach, especially if family support is lacking. A coach teaches you the ‘why’ of the changes in ability and behavior of your family member. She teaches you new ways to respond to those changes that preserve dignity for them and eases caring for you. She points out your successes and celebrates them with you. You find satisfaction in doing things that, although different, work.
The reluctant daughter mentioned above found healing when she gave the care and attention to her mother and realized her mother hadn’t had the capacity to give at the time of the daughter’s childhood. As a result the daughter mended her relationship and ridded herself of old resentments and hurts.

Changing Challenges of Alzheimer Care

2010-03-15T13:49:00.000-07:00

The Changing Challenges of Alzheimer Care

How did last year’s caregiving experience go? Caring for a family member with Alzheimer’s or related memory disorder is an ongoing learning process, so if last year was a hard challenge, this year can be better.
Alzheimer caregiving is like parenting children; the parent must keep up with the child’s growth to relate well. Similarly, relating with someone with Alzheimer’s, has to be flexible because the progressive nature of the disease. Alzheimer’s has been described as human development in reverse. Children expand their learning as they grow; persons with Alzheimer’s are losing abilities as the illness progresses. The caregiver must recognize when changes occur and respond accordingly. What worked last year may not this year; adapt your behavior to the decline in ability.

Some suggestions to get you on your way:
• Observe the level of frustration he expresses when trying to do something.
• Offer to help but ask permission. “Do you need some help?” “May I help you?”
• Give only as much help as he needs to proceed with the task. Often all that he needs is a ‘jump start’ and then can figure out the rest. Don’t take over!
• Visual reminders are great ways to give him the jump start. Simply putting something in eye’s view prompts him to begin a task.
• Structure his day; thinking up something to do and organizing is hard for him. It might be time to think of a day program to offer that structure.
• Keep the person socially engaged but not overwhelmed. Doing things with others has a double benefit. It adds purpose to the day and offers socialization.
• The person with Alzheimer’s needs to feel in charge of his life, feel valued and emotionally safe. It is up to the caregiver to provide these.

Beverly’s book Matters of the Mind…and the Heart is available on line @ www.StilMee.com for an autographed copy or go to
www.strategicbookpublishing.com/MattersOfTheMindAndTheHeart.html

SSS News Radio

2010-02-19T14:25:00.000-08:00

I've just recorded my first 5 minute spotlight on WATD 95.9 FM out of Marshfield on the Greg Porell show. On the 3rd Saturday morning show from 8-8:30 I'll talk about an aspect of Alzheimer's disease that will be informative for caregivers. Tomorrow will be the introduction. Later topics will include the challenges of Alzheimer care with a story to illustrate each challenge as outlined in my book Matters of the Mind...and the Heart. Listen to the show on Saturday morning as you lay in bed catching that extra snooze! Then I'll have to run off to my Zumba class!

Connected Living Now @ Home

2010-02-10T09:54:00.001-08:00

We at StilMee™ Coaching have joined with My Way Village to offer in the home coaching in using a computer-based program called Connected Living Now. It is a terrific fun way to spend time with your family member with Alzheimer's or other memory disorder. Prompts in the form of pictures, utube film clips, and words evoke memories and encourage the person's sharing them with their care partner, either a family member or hired caregiver. I witnessed residents at Rogerson House in Jamaica Plain, Massachusetts 'come alive' with memories of their lives and share those with a coach. The residents are more engaged, seeking out time at the computer to enjoy sharing with another. We are piloting a program for caregivers at home and hope to launch it March 1, 2010. Write me at StilMee@comcast.net and log on to www.mywayvillage.com and check it out. This program is available at home across the United States. It is very reasonably priced; affordable for everyone.
Beverly

Caregiving Tip

2010-02-10T09:44:00.000-08:00

How much Care?
We are looking at the care of a person with Alzheimer's quite differently from that of five or ten years ago. Today we seek to establish an ongoing and rich relationship with the person, giving him as much control over his life as is safe, and building 'care partnering' based on trust and respect. We no longer 'take over' his life, speaking for him, doing for him. Instead we learn to join him; giving him back control, providing emotional safety and adding meaning to his life. This requires learning 'how to speak Alzheimers'. My book Matters of the Mind...and the Heart teaches you the basic principles of relating in a new way. You can purchase this book on Amazon.com or, for a signed copy, on www.StilMee.com. I loved writing it; enjoy reading it.

A New Year of Caregiving

2009-12-30T12:57:00.000-08:00

In another day it will be a new decade, a new year and time to review how your caregiving is going. Are things the same as a year ago? I doubt it, if you are caring for a family member with memory loss. Diseases of memory loss like Alzheimer's are usually progressive and constantly giving the caregiver new challenges. It may be time to see whether you need to learn new skills to address the changing challenges.
In early memory loss, you learned to tolerate the repeating of information or questions. You were aware that some skills were being lost. You grieved the losses to your way of relating to your family member; perhaps learned how to assume responsibilities he or she once had.
What are your challenges now? Is it adapting to loss of speech? Is it looking at whether it is time for more help, perhaps in the area of a day program? I hope you've located, joined and consistently participate in a support group.
When caring for someone with a chronic progressive illness like Alzheimer's, you must forever be adapting your life to the disease. Keep reading caregiving books and articles. Attend seminars by the Alzheimer's Association to keep up with new trends in care. It isn't as hard with the right information. You can enjoy your family member again; only in a different way.
We've recently added a new service to our list; one of activity planning. Without planned activity to fill the day, caregiving can be very tedious. We will be sharing some of our ideas from time to time. If you have activities that have worked for you, share them with us.

StilMee's Caregiving Collaborations

2009-12-08T14:09:00.000-08:00

I guess I'm on a roll to write. I've been giving a lot of talks on Alzheimer management at home. I'm collaborating with 3 other companies to add value to our already good coaching service so that we can cover all the treatment possibilities. Lynn Lazarus Serper, a researcher in brain health, has a Serper Method of brain education to delay the progression of memory loss in persons diagnosed with dementia. I've seen people become engaged happily in their own treatment. It is social, fun, and educational. And it works.Go to www.serpermethod.com
Nancy Emerson Lombardo, another researcher in nutrition and brain health has a great service looking at eating brain healthy foods and adding supplements to augment the benefits. Her company is HealthCareInsights. I'm taking her supplements as is my husband and feeling rested, sleeping well, and having energy in good supply. She is at Look her up at www.healthcareinsights.net
There is another company we are working with;My Way Village of Quincy. We've been involved in a pilot program to learn how to adjust the content of their very successful Connected Living Now product to be Alzheimer friendly and easy for a family caregiver to use. Its goal is to engage the person with Alzheimer's in a fail-free, fun, interactive search into the past to evoke pleasant memories and keep the person connected to family, friends and community. We at StilMee are looking forward to offering this to our caregivers to spend quality time with their family member. I'll let you know when we launch this addition to our coaching services. To learn more about this treatment, go to www.mywayvillage.com
Coach Beverly

Value of being in research studies

2009-12-08T14:00:00.000-08:00

I met with a gentleman interested in making it easier to engage people with early stage Alzheimer's in research. It is imperative to the successful completion of a study that people are willing to be in the study. He told me something I'd never thought of before; the cost of research goes up double if the study is unable to retain subjects, and many treatments for Alzheimer's never make it to the table due to lack of study subjects. As I mentioned in another blogspot, my husband and I are in the HOPE study at BU in Boston. I will take part in other research as I am fit as a subject.
What keeps persons in early stage Alzheimer's from participating. It is probably a combination of fear, denial, and not finding the time. But it is imperative we find answers to the Alzheimer dilemma.
As one who has seen the results of not being willing to look at the fact that one has a diagnosis of Alzheimer's, I can say that the journey is much harder for all concerned. Medical and non-medical treatments are available but one won't benefit from them if no one pursues these options.

Too long a time

2009-11-07T17:12:00.000-08:00

Readers of Stilmee Blogspot,
It has been 3 months since I posted a blog entry. It has been a busy time planning on new services to offer caregivers. We have partnered with My Way Village to offer an inovative computer based program called Connected Living. It evokes long buried memories that bring joy back to the person with memory loss. I and other StilMee coaches have witnessed the effects of this program on residents of Rogerson House in Jamaica Plain, Boston. People come alive remembering events of their lives that brought them joy and contentment through the introduction of picture cues. One gentleman who looked very apathetic and sleepy came awake at the playing of a clip from Fiddler on the Roof. He sang heartilly the wedding song, then asked me if I'd dance. I did. He twirled me, smiling the whole time. He had been brought back to a joyous time from the past. How very lovely to see him come alive, feel the feeling of joy, and be a man again. I went home later that day elated that he had 'come alive' with music. StilMee is happy to partner with My Way Village to bring this to elders with memory loss and their caregivers. What a wonderful way to tap positive memories and write them down as cherished memoirs.

Coach Beverly

Care for the Caregiver

2009-08-03T12:51:00.000-07:00

How many times have I said, "Taking care of you is the best way to take care of your family member with dementia." I don't say that just to be helpful; it is true. When a person who is a caregiver, perhaps a mother or dad working, concerned about family obligations and work obligations, it is easy for that person to just keep going without regard for themselves. I think of a woman I coached who I urged to see a doctor as she was losing weight with no reason. She attributed it to stress of caring for her husband who wouldn't let her out of his sight as he lived with Alzheimer's. Her intentions were good, but it cost her her life. She died of cancer; it had been ravaging her body as she neglected herself in deference to her husband. After she died, he declined rapidly and he's gone now too. It was a sad lesson for those who knew her and were caregivers themselves. Maybe some of them will listen to me now.
Coach Beverly

Alzheimer challenges survey

2009-06-16T10:05:00.000-07:00

I am interested in gathering some information about what makes Alzheimer caregivers seek help in understanding the disease.
What are the behaviors that drive you to seek help?
What stage of the disease was your family member in when you sought help?
What stage of caregiving are/were you in?
What kind of information are/were you seeking?

Thanks for your participation in advance.

Gifts of Alzheimer's

2009-04-27T13:41:00.000-07:00

True, Alzheimer's disease is a hard disease to handle and sadness is all part of the journey. Having been caregiver myself to 2 family members, I've experienced the angst and the joy of being allowed to share in that journey. I also am writing a book (my second) about my caregiving experience with my mother in law. I am calling it Confessions of an Alzheimer Coach for lack of a better title. It has been a 14 year learning experience with all of the mistakes we made along the way. I too think the book will help others to see that, even when one is a professional in the Alzheimer field, we make mistakes when the patient is our family.
I hope your book is more hopeful than you describe. People caring for a family member with Alzheimer's need hope. Not everyone will experience the experience like you or me. I fear setting them up to expect it to be a harrowing experience would be unkind. The caregiver needs education about the disease, how it manifests itself, and how to relate to the person now with the disease. I'd encourage you to purchase my book at my website. I'd like your comments on that. I wish you a lighter heart and a hope...there are blessings in it all.

Articles about Alzheimer's

2009-04-18T07:45:00.000-07:00

If you'd like to read some of my columns in the South Shore Senior News, go to www.southshoresenior.com Click on my photo (Beverly Moore) and access the last 4 years of monthly column entries. The column is called Matters of the Mind. Also visit our websit www.StilMee.com.

The gifts of Alzheimer's

2009-04-18T07:33:00.000-07:00

The following is a story from a special caregiver:
My husband, Vid and I left the neurologist's office in disbelief. Probable Alzheimer's was the diagnosis. My response...DENIAL! "I'm not ready to hear that." It was so difficult for me to say, "My husband has Alzheimer's." A diagnosis of depression, stroke, vascular dementia; anything but Alzheimer's was more acceptable.
Anger took over. I was furious with Vid. How could he have this terrible disease? What am I to do? I am not ready to be his caregiver.
I would cry everyday on my way to work. Dropping Vid at daycare was especially painful. He did not want to go. It was an emotional struggle for both of us. I had to be the 'bad guy' who coaxed him out of the car and into the day program. Due to Alzheimer's, his safety and daily structure were important as well as my piece of mind.
After years of fighting against the disease that has taken over our lives, I have found peace and so many rewards in my caregiving journey. Have I been alone on my journey? Absolutely not. There are so many wonderful people who have supported Vid and me; family, friends, professionals, support group leaders among them.
My nine year journey living with the knowledge that Alzheimer's has taken away the future that Vid and I had hoped for has brought me to a new and unexpected place of living in the moment. The inner peace I feel today sharing our precious time together, and the unconditional love I feel for my husband of forty-seven years are my rewards. I have been able to identify my purpose and make some sense out of my today.

Research Opportunities

2009-04-09T09:18:00.001-07:00

Well, we had our evaluation as subjects of the BUAD Research called the HOPE study. The testers were very easy to work with and went slowly explaining what they were looking for. There was a variety of tests, examining spatial accuracy, memory and dexterity. I was a bit anxious going into the testing which is 2 1/2 hours long. We each had to rate several areas of cognition of the other in everyday life, like concentration, attention, use of language, way finding as well as mood regulation.
I would recommend getting into this study for anyone who would like to be a part of finding out what normal cognitive changes are and what are precursors of dementia. There is one appointment per year for 3-4 hours. We're glad we're part of it. And, if either of us shows decline in cognitive functioning, we will be ahead of the treatment game. Since both my in-laws have died with Alzheimer's disease, we are aware of the impact it has on family life.
Go to my website www.StilMee.com
Coach Beverly

Helping our elder parents

2009-04-07T14:42:00.000-07:00

Thank you for your questions; important ones! Helping parents takes a coordinated effort of the rest of the family. Couples deny changes in their partners. It is painful to see a spouse lose skills, forget things, respond differently. Couples resist outside helpers, feeling they'd rather do it themselves for as long as they can, even if it is hard. Adult children often have to tread lightly, making subtle changes in the way they relate to the affected parent. It is a trick to give help without making the parent feel helpless. Point out the positive relating that the unaffected spouse is using. Comment on the healthy things they are doing.
A professional can assist the adult children to keep their parents feeling competent and respected while giving the help they need. A dementia coach can be particularly helpful when one parent has memory loss. Our coaches work with the family to meet the tough challenges that come with dementia.
Coach Beverly

Research Opportunities

2009-03-29T13:00:00.000-07:00

My husband and I are joining the HOPE study at Boston University AD Research Center to be part of determining what cognitive changes are normal aging and which signal possible dementia. It is both exciting and a bit intimidating to join this study. It means we have a full neurological workup with memory tests, etc.
As a coach, I want to learn what this process is like so I can explain it better to my clients and feel the uncertainty as I engage in the testing. I will be writing more about this experience after 4/3 when we are initially tested. It calls for yearly visits in Boston to re-evaluate. I'll also be writing about it in my column in the South Shore Senior News and the Neponset Valley Senior News.

Caring Well

2009-03-05T13:01:00.000-08:00

I'm giving a talk soon for families on how to get through the dementia journey well. The first thing a family needs is information. Questions like What is dementia? How do I understand what is happening to my family member? What do I need to learn to relate to him now that he has dementia? are what families ask. These are important questions. The more a caregiver knows about what is happening to their family member, the better understanding he will have of the changes in behavior.
What do families need to know? They need to understand each other's way of expressing their love for the person. Each family member has a different relationship with the person and grieves the loss of that person as he was. It is hard to change a pattern of relating that has been in place for many years. But, if each person learned a new way that keeps them in relationship with their family member, each would find it joyful.
People with dementia are still here. We just need to find them and stay in their world. It is the only way to love them now.
Coach Beverly