The National Institute on Aging’s (NIA) Alzheimer’s Disease research program is responsible for Alzheimer’s clinical, behavioral, prevention, treatment and social research. The NIA is part of the National Institutes of Health at the U.S. Department of Health and Human Services. Every year the NIA publishes a progress report on Alzheimer’s disease research that was either conducted or supported by the NIA. They recently published their 2008 findings (yes, 2008 findings published in 2010 – not atypical in research).

Contents of the 52-page document include:

• Genetics
• Epidemiology
• Neuroimaging
• Improving Our Basic Understanding of Alzheimer’s Disease (AD)
• Normal Cognitive Decline and AD: What’s the Difference?
• Accelerating the Search for Genetic Causes and Risk Factors
• Understanding Nongenetic Risk and Protective Factors
• Exploring All Possibilities to Improve AD Diagnosis
• Boosting the Search for Effective AD Therapies
• Helping People Cope with AD
• AD Research Advances: A Look to the Future

The document is free and available for download.

Download NIA’s 2008 Progress Report on Alzheimer’s Disease here.

I recently commented on a post at Alzheimer’s Reading Room about the use of dolls for people with Alzheimer’s Disease and related dementias. If you conduct an internet search on the subject you’ll find articles where nursing home staff and caregivers tout the benefits and pleasure of giving dolls to the individuals. The benefits they state can be summarized as improved communication, happier individuals and sense of purpose. I don’t see anyone discussing the negative aspects some people find with doll therapy. Instead I continue to read about more people using it.

Individuals have even begun marketing dolls to caregivers of people with Alzheimer’s Disease. The Alzheimer’s Store sells “Someone to Care For” dolls for $99.95. Their site states one family wrote:

My mother has had a baby doll for two years now. She loves that doll with a passion you would not believe. She kisses it, tells it how much she loves it, and keeps it with her all the time. At first she told me she knew it wasn’t real, but with it, she never feels alone. This was the best thing we ever did for her.

Dolls4alzheimers.com markets lifelike dolls to people with Alzheimer’s for $65.00 each. Two women even caught media attention as they began collecting used dolls for people with AD to “ease the suffering and bring joy.” The article states:

“It was like a miracle,” Dugan said of her mother’s initial reaction to the life-like baby she received for Christmas in 2007. “She looked at that baby, stared at it lovingly and kissed it.”

Instead of playing with the doll, the mother of seven and grandmother of 15 seemed to be caring for it as if it were a live baby of her own, according to family members.

“She held onto it all the time,” said Dugan, who took comfort in seeing her mother so apparently happy.

The BBC News even reported on a research study, albeit a small one (14 residents in one nursing home), that concluded dolls can help people with Alzheimer’s Disease interact and communicate with others.

I’m here to tell you that, though doll therapy may work for some, it is actually a bad idea for many, particularly in institutional settings. This is based on my experience as a Licensed Social Working in a nursing home and as Director of Adult Day Services at an assisted living facility. The problem starts with why the individual enjoys the doll so much. People with Alzheimer’s Disease tend to move back in time as their disease progresses, meaning they think they are younger and living a different life/reality than what they are. This is why they may not recognize themselves in the mirror or why they look for long lost loved ones. Those that become attached to the dolls often do so, because they think it’s their own – real – child.

The doll can become a source of great anxiety. For example:

• Imagine if you became attached to the doll (your child) and then you couldn’t find it. You would become worry filled, anxious and angry if people couldn’t find your child.
• Imagine if you set the doll down, forgot about it, then saw another resident walking around with your child. Then that resident thinks it’s his/her child! These turn of events do happen, and staff must run to break up the fight.
• While it may help some focus their attention on the doll (child), it may also focus their attention too greatly. Bringing the individual to a meal or the bathroom cannot be done without serious effort as the individual becomes fixated on the doll.
• In some cases, when the doll doesn’t respond as the individual expects a child should, they become worry filled that the child has died.

These experiences are real and widespread with dolls and people with Alzheimer’s Disease in institutional settings. Of course, the positive outcomes are also real. It gave me great joy to see the smile on someone’s face when I gave them a doll and talked with them about it, but that temporary joy can lead to anxiety and stress. The only true way to find out if a doll will benefit someone is to try giving them one, but what other articles aren’t telling you that I am, is to be aware that the experience may not turn out as you had hoped.

The Alzheimer’s Association estimates that more than 250,000 children in the United States are helping provide care for loved ones with Alzheimer’s Disease. Caregiving for someone with dementia is a stressful duty that will take its toll on anyone, but little research has been done on the effects it has on children that act as caregivers.

In 2007 YouTube held a Short Film competition and the winner was a short called My Name is Lisa. The 6 minute video depicts a child who is attempting to review books on her web cam, but keeps getting interrupted by her mother who has Alzheimer’s. The award brought unprecedented attention to Alzheimer’ Disease and child caregiving. The short film packs a powerful, meaningful punch in six short minutes. If you haven’t seen the video before, you should watch it now:

Nina Tumosa, Professor of Internal Medicine at Saint Louis University, gave me different versions of the Saint Louis University Mental Status exam (SLUMS), each in a different language. I converted the files into pdf documents available for download.

Unfamiliar with the SLUMS exam? Read about it here.

Download the SLUMS Exam in:

• Chinese
• Deutsch
• English
• French
• Hebrew
• Romanian
• Portuguese
• Spanish

Download the SLUMS Instructions in English.

Looking for an online support group?

If I’ve said it once, I’ve said it a thousand times, caregivers, family, friends and the individuals themselves fair far better through the dementia process if they’re connected to a support group. For some people, they just don’t have time, or they can’t find someone to act as caregiver while they attend a support group. Others may have a hard time opening up with strangers. While I don’t think an online support group could ever replace the person-to-person contact found in a traditional support group, they are a great first step for private people, or for people that need to take part in a support group at odd times, or lack transportation.

The Dementia Advocacy and Support Network International (DASNI) is one such online support group.

Here’s the interesting part: approximately one-third of DASNI’s members have dementia themselves. Where can you find an online support group like that? If you have dementia, you can speak with people that are experiencing the same thing. Knowing you have dementia, and experiencing it, can make for a very lonely situation. Your friends and family may try to understand, but they can’t.

DASNI states on their site:

The stigma of dementia is very real, very cruel and widespread.  There is also a lack of knowledge about dementias, the impact of new medications, and the support available.  By sharing their hopes and concerns, and participating in dementia-related activities, DASNI empowers people with dementia to actively participate in their own care and treatment. We support a more accepting, more hopeful view of living with dementia. We encourage people to improve the quality of their own life by advocating for others.

Connect with others, ask questions, learn, and make your process easier. Whether it’s with DASNI, another group, or both. Then, as you learn, give back, help others. It will help you find purpose on a difficult journey.

The National Institute on Aging produced an easy-to-use guide on caregiving for someone with Alzheimer’s Disease. The guide is equally suitable for providing care to people with related dementias. This 145-page document covers the important topics any caregiver or aging professional should become aware of. Sections include:

• Understanding Alzheimer’s Disease
• Caring for a Person with Alzheimer’s Disease
• Caring for Yourself
• When You Need Help
• The Medical Side of Alzheimer’s Disease
• Coping with the Last Stages of Alzheimer’s Disease

The guide is particularly useful for caregivers that are new to Alzheimer’s Disease. The reader will learn about the disease, how it changes a person, how to cope with the changes, future planning, managing everyday activities, taking care of yourself, and other resources available such as websites, support groups, adult day care programs, etc. There is no better introductory guide to caring for someone with Alzheimer’s Disease, and best of all – it’s FREE!

Download the “Caring for a Person with Alzheimer’s Disease Guide”

Send a link to this page to other caregivers and professionals you may know. It should be made available to support groups everywhere. Information is crucial to successful caregiving. Caring for someone with Alzheimer’s Disease is a very difficult job that is both rewarding and stressful. This guide will help the process.

The Virtual Dementia Tour (VDT) is designed to simulate what it’s like to suffer from Alzheimer’s Disease or related dementias. This proprietary “tour” is being delivered by a variety of people in long-term care settings, schools, aging conferences, etc. The idea is simple: wear goggles that disrupt your vision, pour popcorn kernels into your shoes to simulate leg and foot pain, wear gloves and tape fingers to make touching and grasping difficult, and listen to loud background noise through headphones. The person administering the event then tells the individual to perform a variety of tasks that are difficult to hear and understand.

You can see more about the test in this short video:

I have taken and administered this test. I think the experience is worthwhile and memorable, but if you’re looking for a true dementia simulation, the Virtual Dementia Tour will not provide it. The test’s strong suit is the physical experience, but lacking is the confusion. The attempt to simulate confusion through loud background noise and dim lights cannot possibly mirror true dementia confusion.

Throughout the event you try completing tasks knowing that you’re taking a test, that the instructions were unclear, that you’re wearing goggles, etc. Trying to fold socks while wearing gloves and goggles is vastly different from trying to anxiously fold socks, because you think the kids aren’t home yet and you’re not sure where they are; or you feel uncomfortable, because you really need use the bathroom, but you don’t know that you do, and something just doesn’t seem right, this isn’t your house – where are you!? Who are these people!?

That being said, I’m not sure there’s any way that one could effectively mirror a dementia state of mind. The Virtual Dementia Tour is about as good as you can get, and in many cases, it’s not the experience itself that’s valuable, but the discussion and education that follows it.

Following is a guest post I previously wrote for Alzheimer’s Reading Room.

Wham! You got the big news, a spouse, parent, loved one, friend, maybe even you – Alzheimer’s diagnosis. You were just going about your life, and now it’s taken a 180 degree turn. To describe it as overwhelming would be an understatement. It’s easy to enter denial or become frozen with shock. While there is little that can be done for that beyond a little time, there is some comfort knowing that you’re not alone, you’re not the first, and you won’t be the last.

Information! Where do you ask questions? What questions do you ask?

Where do you ask questions?

Where you turn for help largely depends on the help you need. The biggest initial problem may be you don’t know what help you’ll need, but we’ll get to that in a moment. For now, you’ll probably want to know more about the disease, caregiving, financial implications, long-term care, etc. Those subjects are all daunting to the novice.

I could recommend specific resources for each, but for the person first learning of the diagnosis, general information on all subjects is most helpful. For this, it’s hard to beat your local Area Agency on Aging (AAA). These agencies support elders within a set community. Their funds come largely from the federal government, authorized by the Older American’s Act (OAA). The OAA funds go to promote healthy aging, help people understand and apply for programs, family caregiver support, etc. What this means is within your local Area Agency on Aging there are trained people ready to help you with a myriad of questions, but more importantly, they can assess your exact situation and refer you to the right people in your community or state.

My next recommendation is the Alzheimer’s Association itself. Makes sense, doesn’t it? They have an office in every state and they want to help. They hold the professionals, they lobby, and they advocate. You can find both your Area Agency on Aging and your local chapter of the Alzheimer’s Association by visiting ElderGuru’s Resources by State page.

The financial implications may require the assistance of an attorney; however, this is impossible to advise without knowing an individual’s specific disease situation, care needs and financial situation. That being said, for people that can afford them, hiring a private care manager is an option, a Licensed Social Worker or Registered Nurse that helps individuals and families navigate the process.

What questions do you ask?

The only way to determine this is to talk with people, read, research and self-educate. You’ll need to hear what other people are doing or have done. You should consider connecting with a support group, the Alzheimer’s Association will have a list. There is a large selection of books available on the subject. You can also do what you’re doing now; visit web sites like Alzheimer’s Reading Room, ElderGuru and others. The best thing about this process is that you find the answer to the question before you knew you should ask it.

I highly recommend support groups, however. I’ve organized and led them. Many people are too private and uninterested in discussing their personal thoughts and emotions with strangers. These people miss out on a valuable exchange of thoughts and ideas. They miss the opportunity to make valuable and lasting friendships. Don’t try to do this alone.

Well this is interesting, another study now indicates that caffeine will help stave off memory loss. I wonder how that compares with a different study that suggests caffeine makes you hallucinate. Read about the latest report as quoted from WebMD:

In the study, mice bred to develop symptoms of Alzheimer’s disease were given 500 milligrams of caffeine (equivalent to five cups of regular coffee) in their daily drinking water once they started developing memory problems at age 18 to 19 months, about age 70 in human years.

After two months, the mice that drank the caffeinated water performed much better on tests of their memory and thinking skills — to the level of normal mice of the same age. Those given plain water continued to do poorly on these tests. The study also showed that the brains of the caffeinated mice experienced a nearly 50% reduction in the level of beta-amyloid.

I am hopeful, yet skeptical. It seems nearly every other day I’m reading about some new study that claims this, that and the other thing will help improve memory retention. Why, it wasn’t that long ago that we learned marijuana helps prevent Alzheimer’s Disease.

Call me crazy, but I wouldn’t start pounding numerous pots of coffee to help prevent memory loss. I think it’s still pretty hard to beat the big three: regular exercise, healthy eating and good genes.

I have always had a hard time with the “do crossword puzzles to stave off Alzheimer’s” mantra, and was thankful to overhear it being discussed recently on National Public Radio’s piece, Meditations, Digressions, From A Crossword Addict. Dean Olsher, author of the new book, From Square One: A Meditation, with Digressions, on Crosswords, found in the research for his book that one of the researchers who first established the correlation between crossword puzzles and mental acuity found the two were only “marginally related.”

“[The researcher] never said that there was a cause-and-effect relationship. He said there was a correlation. Maybe it just so happens that people who are mentally fit have a tendency to want to do crosswords in the first place,” explains Olsher.

Part of the appeal of the puzzles is the familiarity they breed. As Olsher points out, devoted crossword fans often find the same familiar language and references in their favorite puzzle. But, he says, “If you step out of your own dialect, and try a puzzle made by some other syndicator, edited by someone else, don’t you find that it’s alien territory?”

This is one of the reasons that Olsher dismisses the idea that crossword puzzles can stave off Alzheimer’s. “[Crosswords are] kind of the same activity over and over again. But the Alzheimer’s research shows that really what matters is novelty … Constantly exposing yourself to something new. That is much more likely, I think, to keep you sharp in the long run.”

Challenging your brain (and your body) is what keeps you mentally sharp. Olsher’s point is a good one, just doing daily crossword puzzles is not going give you the diversity of mental challenges that you need to reduce your risk. It eventually fails to become the mental diversity that you need. Pick up other things in addition. For a bigger challenge, learn another language, learn to play a saxophone, or go back to college.

Now, if we can just do something about the new mantra:

Bingo helps stave off disability in old age!