Dementia Weekly | Alzheimer's Weekly: 2012 Drug Trials Edge Towards an Alzheimer's Cure

Dementia Weekly | Alzheimer's Weekly: 2012 Drug Trials Edge Towards an Alzheimer's Cure

Dementia Weekly | Alzheimer's Weekly: Holiday Hints

Dementia Weekly | Alzheimer's Weekly: Holiday Hints: Tips for helping people with dementia and caregivers when visiting family, friends & neighbors during the holiday season.

Trauma Informed Care

For the last year and some months I've been teaching hospital mental health carers in crisis prevention intervention. Noting that many people with mental health issues are also survivors of trauma throughout life, I studied trauma informed care. I recently in August trained to teach crisis prevention with a strong focus on trauma informed care. The results of a lifetime of trauma or a single trauma event, whether that be living in a scary neighborhood, fighting a long illness, disfigurement, abuse or neglect, rape, incest, or even a diagnosis of Alzheimer's dementia, will change brain chemistry and alter how we react to life. In other words, trauma colors the way a person sees the world. It is usually seen as unsafe, untrustworthy. As I study more (I'm reading a book entitled Scared Sick) I will share what I learn.

Changes coming soon...

Hi all followers. I am going to soon download all of my blog onto a blog on my webiste www.StilMee.com. I hope I see that you will follow me there. We're also updateing the website to include news from StilMee and news of breakthroughs in Alzheimer research and care. All my columns from Matters of the Mind featured in the South Shore Senior News will be available on the site as well. Gotta keep up with the times and become a website extroidinaire (doubt that will take place but then who knows what miracles happen to an elder's mind).

Dementia & Alzheimer's Weekly: Solanezumab, a Top Alzheimer's Experimental Drug, ...

Dementia & Alzheimer's Weekly: Solanezumab, a Top Alzheimer's Experimental Drug, ...: VIDEO & ARTICLE Solanezumab slowed Alzheimer's by 30% in a trial earlier this year. Find out what it's maker, Ely Lilly, plans for the nex...

My new e-book

Good news from this blogger! My e-book New Trends in Alzheimer Care; Finding the Spirit Within will be released within a few weeks by Strategic Publishing. It piggybacks on my book Matters of the Mind...and the Heart to discuss new trends in caring for the person with dementia and then tells my personal journey with my mother in law Bette. It was quite a rollercoaster ride for me and not always an easy one. I did learn a lot about dealing with very independent minded and self-focused people and a lot about myself in the meantime. I think we often learn more about ourselves than the people we care for in the caregiving journey. So, look for it. It will be available for Kindle and the like from Barnes and Noble, Target, and other outlet stores. Enjoy.

Dementia & Alzheimer's Weekly: How to See Pain when Dementia Blocks Communication...

Dementia & Alzheimer's Weekly: How to See Pain when Dementia Blocks Communication...: VIDEO Watch Teepa Snow demonstrate how to detect pain in a person with dementia and how you can adapt to communicate and help them.

Music rests the mind

Working in a mental health unit where elders are cared for gives me lots of opportunity to be with elders with dementia, often also with a primary mental illness. This combination is a challenge as people with dementia are often anxious and frustrated trying to figure out what is happening to them. People with mental illness challenges also have low frustration tolerance and are very anxious. Both are sensitive to loud noise and often the unit is quite noisy. Carts are being pushed down the corridor, nurses are explaining medications to their patients, the TV in the kitchen area is seeminly always blaring, and patients are requesting their needs of the staff. My job there is to model effective ways to speak to and work well with such hurting people. My way of doing this is to avoid looking at the diagnosis so I don't put whatever they do or say into the 'labeled' box. I think this fitting a person into a label is dangerous and unkind. Patients are people first, people with a history, with strengths, survival skills, vulnerabilities and challenges. People with mental illness challenges, like most people, respond to lightheartedness and sincere laughter. They respond positively to my acting a bit goofy at times, bantering with them, singing with them, playing with them. This, after all, is what I went into nursing for; to be with people and help them heal. I watched a video from The Alzheimer Weekly, an e-newsletter I get on line that has new treatments for dementia and promising research. One video today was on the value of music when language is no longer easy to use and/or to understand. One elder I worked with years ago in her home got a bath each day to my singing a song to her the whole time I bathed her. It was only with music she could handle her anxiety about the bath. It was a long song that took us through the alphabet describing her...A you're adorable, B you're so beautiful, C you're a cutie full of charm etc ending in W,X Y and Z...I love to wander through the alphabet with you, to tell you what you mean to me was how it ended. By then she was clean and we were friends. We recently had a patient on our unit who played a very good keyboard. While he was there he would play soft jazz and hymns too while he sat next to an anxious elder with dementia.It was amazing to see how the music 'got through' to the person. Often the elder would start singing along to the music. Music soothes the person and allows the mind to rest from its struggles.I think it helped him heal too, giving to others of his talent. I forwarded the video on Music Therapy to LinkedIn. It is visible to anyone.

Developing a Long Distance Relationship with your Parents' Physician(s)

It happened again last week. I received a call from a close friend concerned about an aging parent. In truth, I work with clients of all ages but since half of them fall into the 'older adult' category (80 years old and above, I tend to be the 'go to' person for questions regarding health care in this stage of life. My friend, Jen, had noticed a few unsettling things about her dad in recent weeks; problems with short term memory, an unreasonable and angry disposition, a growing inability to hold back from saying whatever came to mind, no matter how hurtful it may have been. She felt that a crisis was looming. To make matters worse, Jen lives here in the Northeast, while her dad resides in Florida. She felt helpless because her father was resisting any assistance or suggestions about his health (or anything else, for that matter). I was alarmed as well. I know her dad well and the major change in mental status she described suggested that an immediate trip to his primary care physician was necessary, to begin the process of identifying what might be going on. Maybe her dad had a masked urinary tract infection (in older adults, one of the first manifistations is a change in mental status). Maybe he was beginning to experience signs of dementia. Or maybe he was experiencing mini-strokes, low blood sugar, anemia, or any one of many many possible medical issues. No matter what, it was appropriate for his primary care physician to know, to evaluate him and to begin to rule out causes of this change. Develop the relationship before you need it In my last newsletter (this article is from Dianne Savastano's newsletter, Healthassist. You can reach her at dsavastano@healthassistcorp.com)I suggested that you develop a relationship with your parents' primary care physician.If you live close by, this is fairly straightforward. Plan to attend an upcoming physician appointment, then meet the doctor face-to-face and describe how interested and motivated you are to be a member of the support team. Let him/her know that you are only a phone call away and have your parent(s) sign a release form giving you permission to speak directly with the doctor(s). when your parents live at a distance, on the other hand, it is not quite so easy, , particularly when you are dealing with a resistant parent. Even so, it is manageable. Some thoughts about what you can do: Call the primary care physician practice and identify yourself as Mr. Smith's daughter. Explain you live far away but would like to open lines of communication with the physician to describe observations and share concerns. Try to set up a pre-arranged phone appointment with the physician and offer to pay for his/her time (physicians are not often compensated for time spent on the phone or answering emails, so they are sometimes reluctant to communicate in ways other than a face-to-face visit). Suggest that you could articulate your request and concerns in writing. Send it via fax so that you can have a productive discussion with the physician. If the physician is unwilling/unable to talk directly, ask if there is another key clinical person or care/carse manager in the practice who might be familiar with your parent and his/her health. It could be a nurse, nurse practitioner, physician's assistant or social worker. One of these might be a starting point. Once you have the meeting set up, prepare a concise document-an agenda for your meeting that you can share beforehand and that clearly describes observations and articulates your concerns and specific questions (if your parent has not granted permission for the physician to share information, he/she may not be able to tell you much about clinical issues. Still, the physician will appreciate the concern and the input and hopefully you can come up with a plan together). Above all, the thing to remember when noticing changes in an older adult is that it's not always simply the result of 'natural aging'. An explanation is needed and the primary care physician is the key player and the best starting point. The relationship that you develop today with that physician-whether face-to-face or through a combination of other, long distance means-will play a critical role in ensuring that all members of your parents' extended team are working together! P.S. We were able to isolate the medical cause of Jen's dad's change in mental status and he is doing great! This post is a copy of an article in Dianne Savastano's June 2012 newsletter Healthassist with Dianne's permission. It was too good with great advice to not publish it here. Beverly Moore

Last time I wrote it was almost summer and 77. Today it finally gave up the 90-100 range and settled in the 80 degree range. This is much better on the body and the spirit. I've been stretched to the limit with a deluge of referrals for in home coaching which is good of course because we are seeing families that otherwise wouldn't be served. That is because the Commonwealth of Massachusetts is on the right road combating Alzheimer's by paying for families to learn how best to care for their family member with a cognitive disorder. They've seen the impact Alzheimer's has on families, industry, and public services. We at StilMee are very pleased to reach these families. One recently called his case manager and raved about how valuable the information the coach gave him. We hear this all the time. Information is key. Like I said in a previous blog post, I am determined to show doctors (and sometimes social workers too) the absolute necessity of giving resources for information. We cannot operate in a silo with this disease. We need to collaborate to give families a chance to stay in relationship with the person with Alzheimer's. It can be done. All one needs is knowledge of what has happened in the brain, how it changes ability and thinking, and how we need to change the way we relate and care. The three big myths about Alzheimer's are: they cannot learn anymore (wrong), they are really no longer a person (shame on anyone who says that now), and they have no future. We provide a future of either daily frustration or moment by moment assistance to find joy.

Wih all this rain and temperatures under 70 it is hard to think it is summer,but it is. Are you taking care of yourself, caregiver? If you've heard it once you've heard a thousand times, taking care of yourself is the best way to take care of your family member with Alzheimer's. A person with Alzheimer's is acutely aware of non-verbal communication such as body language, facial expression, tone of voice. You may say, "Good morning, breakfast is ready." but does your body language and tone say it is a good morning? Do you sigh a lot, keep your eyes downcast? Do you give eye conctact or are you moving away as you speak to him/her? I always know something is going awry in my marital relationship when my husband and I speak as we pass each other, sit less with each other, don't take the time to give a hug, a kiss hello or goodbye. That is when I suggest we talk and we do. It is usually tiredness or worry that is the culprit, but if let go, it can tear us apart and we wouldn't know how it happened. We've made an effort, with both of us in business, to make time for us. We eat every breakfast together, sit down and share our day after work stops, and have made Friday our 'date' night. We may do nothing special but it is time set aside for us to keep in connection.
So, catch the signs of burnout early. Do something for yourself so you can care for the one you love. Take time for healthy family members who can give you a laugh, a time to share a meal or a walk. It will refresh you so you can come back and give of yourself to your family member with Alzheier's

Information PLEASE , doctor

I am on a mission to change the way the neurologists, geriatricians and primary care doctors treat people with cognitive disorders like Alzheimer's. When doctors give the diagnosis, they offer little to no information, education or support to the family. I find this to be true of any diagnosis to do with the mind or behavior changes. Disorders of the mind make caregiving a challenge. Life is never the same again. It is a family crisis. The person with dementia is seldom able to participate in a helpful way to his care. Signs of Alzheimer's are a subtle but permanent and progressive shift in initiative, ability to structure pleasureable activities,and ability to comprehend the world around him. These difficulties lead to apathy or anger. Without someone to help make sense of what is happening to him, a person with dementia is lost. Often expressing what he is thinking or feeling becomes so difficult to impossible, he expresses his feelings in behavior. Most family caregivers try ways that are familiar like explaining why, quizzing to 'strengthen memory', and planning the future (maybe a trip going to be taken next weekend). None of these familiar ways of relating work now. In fact, these three ways of relating only add frustration for the family member with dementia. Unable to say what they are frustrated about, they DO something. Behaviors become troublesome for the family to understand and respond to. The family reacts rather than responds in a way based on an understanding of what challenges their family member is experiencing. Cconflict begins. Research and my experience with families says that education about the disorder and the person's changes in ability and behavior ease caregiving substantially and the family can give care at home up to two years longer than those without education. How do we bring this finding to the diagnosticians? Educating doctors and other health care professionals is key.

Negligent to blog once again...sorry, here it is

Oh boy, how does so much time pass without an entry? I guess it is because I am busy doing many things. My granddaughter on the other hand blogs almost daily. Her blog is called The Blonde Redemption. She is 19. If I ever get Alzheimer's I'd want a lot of time with her. She is witty, loving, kind, and insightful. She is what caregivers of those with alzheimer's need to be. She would never infantilize me, belittle me, or think I could do something I couldn't anymore. Massachusetts has released funding to the Aging Service Access Points for Alzheimer coaching. ASAPs seek to keep elders at home safe longer by offering services to make that a reality. This coaching is a service for the family. It is now determined that one person every 7 seconds is diagnosed with Alzheimer's in the United States. That is incredible. We know families are out there needing education as since the funding became available in April we've had 120 referrals. I think about how they should have been able to access education long ago. I hear comments from families like, "Where were you two years ago! We could have done things differently." How can we reach these people who need information? If you have ideas send them along. Our 7 coaches cover all of Massachusetts. That is a lot of driving! Our coach in Dallas is already getting known for her knowledge and availability. Tonight I am going to a support group I've started at a local hospital for families to ask questions about any kind of mental or cognitive condition and gain support for their efforts. I'll let you know how successful we are. The two illnesses that seem never to get information to the caregivers (families) are mental conditions and cognitive conditions. And those two are the most challenging to be caregiver for as they often cannot communicate their needs adequately. I hope to change that.

Feelings of joy...

I just finished my usual newspaper column in the South Shore Senior News for April. The editor Greg always gives columnists ideas on what to write about. This month's idea struck me as a good subject to explore here too; that of laughter and positive emotions. Research shows that even if a person with memory loss doesn't hold on to the content of a pleasant movie, the positive feelings last for hours. The opposite is true of negative movies.
In the hospital I work in part time we are promoting sensory modalities; those evoking calm and pleasure through the senses. This treatment is especially helpful for persons who have experienced trauma through life (many if not most with mental illness have continuously experienced trauma) and persons with cognitive disorders. For the person with trauma, it taps the amygdala (a-mig-dil-a) to respond to positive experience instead of the negative ones remembered. For the person with dementia who now often cannot initiate, plan or execute a formerly pleasant activity,sensory experiences calm and bring joy. There we use music, rhythm like dance and exercise, smells like lemon or lavendar (even bakiing cookies),visual items like pictures and tactile sensory items like fur, suede or velvet (maybe a puppy or kitten). These therapies reduce psychiatric symptoms, confusion and restlessness by inserting positive emotive experience into the patient's life.
Have you used these activities, especially in the late afternoon when persons with dementia often are feeling lost, confused and sometimes slip into delirium.
When my father in law was restless and confused in the evening due to his Alzheimer's disease, we put a can of coins in front of him to sort. He was a 'candy man' so quite used to handling coins. Within minutes, he was 'remembering' the positive memory of his work and doing something very familiar, humming a tune as he did. This replaced the confusion and prepared him for sound sleep.

Caregiver Education a Must

We at StilMee are very pleased to announce a new coach, Janet Williams, who is based in Dallas/Fort Worth, Texas. We believe every caregiver of someone with a cognitive disorder needs education. How stressful it is when a caregiver sees things changing with their family member or friend and doesn't know how to help. Relating to a person with Alzheimer's disease is unique, counter-intuitive, and seemingly not common sense. I call the communication approach uncommon common sense. When one knows how the brain has changed and what is now difficult for the person, the caregiver learns that now what s/he knows is common sense; Alzheimer sense! The brain cannot hold onto information taken in, cannot attend to or concentrate easily on a task, is unable to adequately control impulses, and perhaps have trouble even understanding what is being said. This must be a scary place for that person. We as caregivers, sensitive to the new needs of the person, must change the way we relate or we in essense dishonor the person. If you live in Dallas/Fort Worth, call Janet (go to our website www.StilMee.com for information. If in the Massachusetts state, call the main office 617-328-3440 or go to the website and choose your coach. We want to make sure no caregiver has to go the journey alone.

Is anyone not touched by Alzheimer's?

I just read a news brief that spoke about the aging population in prisons and that dementia has become a huge concern and challenge. The inmates with dementia were often taken advantage of, made fun of,and generally unsafe.
An interesting solution has been tried with the training of other inmates in the care of the person with dementia. They are called Gold Coats as they wear a different color than the other inmates. They too are antagonized by the inmates who feel they are siding with the authorities in taking on this new role.
I wonder what changes this care giver role will make in these prisoners. I hope to follow this for some time and see the change. Everyone is changed in care giving. No one is so tough that they are not impressed with the challenges of being unable to think clearly and respond to the environment accurately. Stay tuned.