Wednesday, December 29, 2010

Alzheimer's speaks out; Listen Please!

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

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."

Monday, December 27, 2010

January's column

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


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.”

Monday, December 20, 2010

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

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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Saturday, December 18, 2010

More on Guardian and Conservator Responsibilities

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

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.

Monday, December 13, 2010

How is dementia and Alzheimer's alike or unalike?

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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Saturday, December 11, 2010

www.healthcareinsights.com article on Omegas

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

Friday, December 10, 2010

Resources

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

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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Monday, December 6, 2010

My blog

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

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

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.

Friday, December 3, 2010

From Geriatrics@brookdaleseniorliving.com

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

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

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.

Wednesday, November 24, 2010

Thanksgiving

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!

Friday, November 19, 2010

E-newsletter from November tip for the month

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.

Tuesday, November 16, 2010

Oh My Omegas by Nancy Lombardo

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

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.

Tuesday, November 9, 2010

I'm not myself when you're away

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...

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.

Friday, November 5, 2010

Haldol's value

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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Wednesday, November 3, 2010

Tips for the Holidays from Alzheimer's Association

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.

Monday, November 1, 2010

Disability

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

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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Sunday, October 17, 2010

Language and its impact

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.

Tuesday, October 5, 2010

White Matter Matters a Lot

(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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Tuesday, September 28, 2010

Educate yourself

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

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Sunday, September 26, 2010

A Matter of her mind...and my Heart

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?

Monday, September 20, 2010

An article on Frontotemporal Dementia

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.

Wednesday, September 8, 2010

Vacation Lessons

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.

Wednesday, August 25, 2010

New article from Right at Home Newsletter: Dressing

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.

Monday, August 23, 2010

Namenda news from Alzheimersweekly.com

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

Friday, August 20, 2010

Make Happiness Happen

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

Tuesday, August 17, 2010

Visit our website www.StilMee.com

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.

Wednesday, July 28, 2010

Driving and the elderly

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.

Tuesday, July 27, 2010

Marriage and Alzheimer's

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.

Friday, July 23, 2010

The Seasons of Caregiving

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.