I have a booklet, In It Together, written  by Danielle Ripich, Ph.D. It was published by a pharmaceutical company in 2005. Dr. Ripich is the dean of the College of Health Professions of The Medical University of South Carolina. Her FOCUSED program to train caregivers of people with Alzheimer’s disease received a major award from the American Society on Aging.

I don’t know where you can get a copy of this booklet, but it contained a list of caregiver resources that I wanted to share with you. Some you’re definitely aware of, but others may be new to you.

The Alzheimer’s Association
A national network of chapters dedicated to advancing research and providing education and support for patients and families.
1.800.272.3900
TDD: 1.312.335.8882
www.alz.org
e-mail: info@alz.org

Alzheimer’s Disease Education and Referral Center (ADEAR)
A service of the National Institute on Aging (NIA) that stives to be a current, comprehensive, unbiased source of information about Alzheimer’s disease.
1.800.438.4380
TDD: 1.301.495.3311
www.alzheimers.org
e-mail: adear@alzheimers.org

Alzheimer’s Foundation of America
A nonprofit organization dedicated to optimal care and support through local member organizations.
1.866.AFA.8484 (1.866.232.8484)
www.alzfdn.org
e-mail: info@alzfdn.org

The Alzheimer’s Store
A one-stop source for products for people with Alzheimer’s disease and those caring for them.
1.800.752.3238
www.alzstore.com
e-mail:cs@alzstore.com

Association for Driver Rehabilitation Specialists (ADED)
A nonprofit association that helps caregivers determine whether the person with Alzheimer’s disease should be allowed to drive.
1.800.290.2344
1.318.257.5055
www.aded.net

Caregivers World, Inc.
Products to help improve the quality of life for both the caregiver and the care recipient.
1.800.239.4116
www.caregiversworld.com
e-mail: sales@caregiversworld.com

Children of Aging Parents
A nonprofit, charitable organization that strives to assist caregivers of the elderly or chronically ill with information, referrals, and support.
1.800.227.7294
www.caps4caregivers.org
e-mail: info@caps4caregivers.org

Eldercare Locator
A national, toll-free, directory assistance public service of the U.S. Administration on Aging to help people locate services for the aging in every community throughout the United States.
1.800.677.1116
www.eldercare.gov

Family Caregiver Alliance
A community-based nonprofit organization that addresses the needs of caregivers through national, state, and local programs providing education, services, research, and advocacy.
1.415.434.3388
www.caregiver.org
e-mail: info@caregiver.org

National Academy of Elder Law Attorneys
A nonprofit association providing information and resources to attorneys specializing in legal services to the elderly and disabled. They also provide an elder attorney locator.
1.520.881.4005
www.naela.com

National Association of Professional Geriatric Care Managers
A nonprofit, professional organization working to ensure high-quality eldercare.
1.520.881.8008
www.caremanager.org

National Institute on Aging (National Institutes of Health)
Alzheimer’s Disease Information
1.800.438.4380
Age-Related Publications
1.800.222.2225
www.nia.nih.gov

Safe Return
A joint program of the Alzheimer’s Association and the National Center for Missing Persons; a person who has dementia is fitted with a bracelet showing his/her name, the registered caregiver’s name, and the toll-free number for Alzheimer’s Association Safe Return.
1.888.572.8566
www.alz.org/services/safereturn.asp

United States Social Security Administration
Government agency responsible for retirement payments, Medicare, and disability benefits, as well as other benefits. Information also available in Spanish.
1.800.772.1213
( 7 AM to 7 PM, Monday through Friday)
TTY number: 1.800.325.0778
(7 AM to 7 PM, Monday through Friday)
www.ssa.gov

There’s been a lot of news about Alzheimer’s disease recently because of the annual meeting of the Alzheimer’s Association International Conference on Alzheimer’s Disease (AAICAD) which met from July 10 to 15, 2010 in Honolulu, Hawaii. The AAICAD is the world’s largest conference of its kind. It brought together almost 4,000 researchers from around the world to report and discuss groundbreaking research and information on the cause, diagnosis, treatment and prevention of Alzheimer’s disease and related disorders.

Alzheimer’s disease research continues to be under-funded, but this appears to be the most significant disease that the baby boomer generation will face. There were many interesting and significant items to come out of the conference, but I want to mention two of them because they immediately impact us. I mentioned in a previous post that participating in a clinical trial could prove to be very time-consuming, but if this is of interest to you, here is good news for you.

The Alzheimer’s Association announced the launch of Alzheimer’s Association TrialMatchTM, a confidential, free, and interactive tool that provides comprehensive clinical trial information and an individualized trial matching service for people with Alzheimer’s disease and related dementias. The Internet (www.alz.org/trialmatch) and phone-based (800-272-3900) program provides a first-of-its-kind service in Alzheimer’s by delivering individualized matches to clinical trials for people with Alzheimer’s, their healthcare professionals, caregivers, and healthy volunteers.

Second, we know that diet and exercise can play a role in either slowing down or reducing the risk of dementia. For example, adding turmeric to the diet (click here) might be beneficial.

Evidence from three long-term, large-scale studies (Framingham Study, Cardiovascular Health Study, NHANES III) supports the association of physical activity and certain dietary elements (tea, vitamin D) with possibly maintaining cognitive ability and reducing dementia risk in older adults. Plus, a new study in an animal model of Alzheimer’s reported today at AAICAD 2010 suggests that an antioxidant-rich diet with walnuts may benefit brain function. Research has pointed towards a number of factors that may impact our risk of Alzheimer’s and cognitive decline, the strongest being reducing cardiovascular risk factors. The Alzheimer’s Association and others have repeatedly called for longer-term, larger-scale research studies to clarify the roles that these factors play in the health of the aging brain. These studies from AAICAD 2010 are some of the first reports of this type in Alzheimer’s, and that is encouraging, but it is not yet definitive evidence.

Next year the group will meet in Paris, France from July 16-21. We look forward to more exciting news to come out of the meetings. For more research findings, click here.

ICAD 2011

Here are two evils — Alzheimer’s disease and cancer. Which would you choose? Of course, neither. I recently read something that said if you have Alzheimer’s you’re not likely to get cancer and vice versa, if you get cancer, you’re not likely to get Alzheimer’s. So that got me researching — is Alzheimer’s disease protection for cancer?

In December 2009, Neurology published a report by Dr. Catherine M. Roe of Washington University School of Medicine in St. Louis which stated that understanding the link between Alzheimer’s disease and cancer may lead to possible treatments.

Roe and her team studied 3,020 people aged 65 and older. They were followed for an average of five years to see if they developed dementia and an average of eight years for cancer. Here is how the study started:

• 164 (5.4%) had Alzheimer’s disease
• 522 (17.3%) had cancer

Here is what they found:

For people who had Alzheimer’s disease at the outset, the risk of future cancer was reduced by 69 percent compared to those who did not have Alzheimer’s disease when the study started.

For white people who had cancer when the study started, their risk of developing Alzheimer’s disease was reduced by 43 percent compared to people who did not have cancer at the start of the study.

This effect, however, did not apply to minority populations. In fact, the opposite effect was observed in minority populations — those who started out with cancer at the beginning of the study were more likely to develop Alzheimer’s disease. However, the sample size of minorities starting off with cancer (29 individuals) was too small for the result to be considered significant.

Overall, the results of this study support previous findings that cancer and brain degenerative diseases such as Parkinson’s and Alzheimer’s disease may share common molecular underpinnings. However, Roe noted in an email to Reuters Health, “Since we found no associations between vascular dementia and cancer, we don’t think that cancer is linked to dementia generally.”

Vascular dementia, the second most common form of dementia after Alzheimer’s disease, is caused by clogged blood vessels and other conditions affecting the blood supply to the brain. Based on the current study, only the degenerative form of dementia, and not the form caused by lack of blood to the brain, appears to be somehow protective against cancer.

To read the full article, click here.

Retina

We already know that in Alzheimer’s disease (AD) there is amyloid plaque that builds up in the brain which causes the AD. Now, scientists at Cedars-Sinai Medical Center in Los Angeles, California report that the same nerve cell-damaging plaque also builds up in the retinas of the eyes. Moreover, it shows up in the retinas earlier than in the brain and this could lead to earlier diagnosis using non-invasive optical imaging.

Amyloid plaque was discovered in the retinas of deceased Alzheimer’s disease patients and further tested on live laboratory mice genetically modified to model the human disease. The research was conducted by a team of scientists at Cedars-Sinai Medical Center in collaboration with colleagues from the Weizmann Institute of Science in Israel and the University of Southern California. The results will be presented on July 13, 2010 at the Alzheimer’s Association International Conference on Alzheimer’s Disease in Honolulu, Hawaii.

In an earlier study published last year, University of California – Irvine neuroscientists found that retinas in genetically altered mice with Alzheimer’s undergo changes similar to those that occur in the brain — most notably the accumulation of amyloid plaque lesions. In addition, the scientists discovered that when Alzheimer’s disease therapies are tested in such mice, retinal changes that result might predict how the treatments will work in humans better than changes in mouse brain tissue.

Alzheimer’s disease is becoming more prevalent world-wide and is tragic for the whole family. The retina is readily accessible and since it is considered part of the central nervous system, it has many similarities with the brain. This discovery is non-invasive and if it proves to be conclusive as well, we can start to prepare for the difficult future much sooner than previously.

You can read about this most recent study at several Web sites. Click here.

The American Journal of Alzheimer’s Disease and Other Dementias recently reported in an open-label pilot study that apple juice improved behavioral, but not cognitive symptoms in moderate-to-late Alzheimer’s disease patients. Although this was a very small study of only 21 institutionalized patients who drank two 4-ounce glasses of apple juice twice a day for a month, the study suggests that apple juice may be a useful nutritional supplement since, as Alzheimer’s disease (AD)  progresses, the mood of AD patients may decline as well. It may help ease the burden for caregivers.

The study said, “Caregivers reported an approximate 27% (P < .01) improvement in behavioral and psychotic symptoms associated with dementia as quantified by the Neuropsychiatric Inventory, with the largest changes in anxiety, agitation, and delusion.”

Exactly how apple juice might help remains unclear. It’s possible that the antioxidant nutrients in the apple juice reduces the oxidative damage to the brain tissue.

Since this was a very small study funded by the apple industry with no placebo, the conclusions need to be viewed with caution. However, given that apple juice is a healthy and inexpensive beverage, it would seem a positive thing for caregivers to try.

Research is one of the areas of Alzheimer’s disease (AD) of great interest to me. One of the best Web sites for this information is http://www.nia.nih.gov/alzheimers. This Web site is part of the Alzheimer’s Disease Education and Referral Center (ADEAR). Although the National Institutes of Health (NIH) is located in Bethesda, Maryland in the Washington, DC Metropolitan Area, there are studies going on across the country. In addition, there are research studies at all stages of Alzheimer’s. The NIH, known as The Nation’s Medical Research Agency, includes 27 institutes and centers and is a component of the U. S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research.

Through research, diagnoses of AD is becoming increasingly accurate. However, absolute certainly still requires an autopsy to define the plaques in the brain. Participation in these studies may require an autopsy where there is no charge to the family. However, if an autopsy is not acceptable to you or your loved one, then participating in research may not be something you should consider.

Participating in a research study could be very time consuming as well. It could involve commuting to the study site as well as filling out mounds of paper work. The specific drug in the drug trial may or may not work or it may work for awhile and then stop working so it’s better to keep your expectations low. Just remember to consider all aspects of  your life as a caregiver before signing up your loved one.

Freddi Donner

Guest blogger and caregiver, Freddi Donner, shares a poignant remembrance about her mother.

My mom died around noon on December 31st, 1999. She hated New Year’s and I think she decided just to skip the hyped up transition to 2000. Her journey through Alzheimer’s was more difficult for me and my sisters than for her. Of course, she was VERY angry when we told her about her diagnosis and thought my sister and I were so cruel for telling her. As her journey progressed, I began to study the disease. Knowing the “7 stages”, or that there were stages at all, helped me understand what was happening.

We moved her to assisted living for her safety. It was not long after that date she had to be moved to the locked floor. This is when she became childlike. “I have just come back from New Orleans!”, she shares one day. “Mom, why didn’t you let me know? I would have gone with you!” She shared the events of her trip that had an uncanny agenda of a trip she took in her 20’s.

Mom taught me through her journey that imagination is more fun than reality, so let’s just play there. My roles changed as the visits continued (her mom, her sister, an aid, her daughter) but the stories got more entertaining. “I got married last week” was my favorite! She had actually “taken” to one of the male aids who worked the midnight shift. I guess they spent a LOT of time together, because that is who she “married”.  I honestly believe that my mom had more fun in the midst of the Alzheimer’s disease than she had in real life. She loved life and got to relive all her favorite memories and recreate the life she really wanted. God bless her.

Freddi Donner
Unlock your possibilities
for better health and more wealth
E-mail: freddi@forhealthandbalance.com
Co-Chair, Health and Wellness Committee
Dulles Regional Chamber
_______________________
www.nikken.com/freddi
www.forhealthandbalance.com
NEW: www.livewellvirginia.org

Continuing my highlights of Alzheimer’s Care with Dignity by Frank Fuerst, in today’s post I list 6 caregiver products that Fuerst considers specifically helpful for people with dementia. You may be able to get them free or at a reduced cost. Ask your contacts such as members of your support group or see if it’s a Medicare-qualified item.

Consult his guide for a complete list, but the following are those that solved major physical and psychological challenges for him. Having gotten them sooner he feels would’ve prevented a good deal of stress.

1. Bathroom transfer bench
2. Geriatric chair
3. Plastic runner
4. Hand-held shower
5. Stair lift
6. Wheelchair

A bathroom transfer bench is one where two legs remain inside of the tub with suction cups and two legs are outside of the tub.  It comes with a backrest. Since the person remains seated while bathing, a hand-held shower works well. (Hand-held showers work well for cleaning the tub as well).

A geriatric chair is like a wheelchair except that it is larger and more comfortable. Get one with a tray that can swing down and out of the way.

Plastic runners will help to keep your carpet in good condition in case of accidents. They have spikes on the bottom to hold it in place. Not all plastic runners are alike even though they may look alike. Since you need to walk on the runner, a softer plastic might be more  comfortable than a stiffer one. Use them in areas where there are likely to be accidents such as from the bed to the bathroom and in eating areas.

Stair lifts are expensive, but might still be a less costly alternative to other home alterations. Fuerst suggests that you check the Internet. One source is http://silvercross.com for more information. They also sell used equipment and will buy back equipment, but don’t expect to recover much of your purchase price.

Finally, wheelchairs are available everywhere, but if you’ve never ridden in one, they are not exactly comfortable. Be sure to add a cushion, preferably a high quality gel cushion as mentioned in this post.

In my last post, I reviewed Alzheimer’s Care with Dignity by Frank Fuerst. It’s a book that I believe should be at your fingertips. In this post and others to follow, I want to highlight some of the chapters that were especially interesting and helpful. One of the most important members of your team is your doctor and in this post, I highlight how to choose a doctor for Alzheimer’s disease patients. However, Fuerst quotes the Alzheimer’s Association in the June 2006 report to Congress:

When a person under age 65 goes to a doctor with symptoms of dementia, the doctor may not even think of dementia as a possibility or may not know how to diagnose it. As a result, getting an accurate diagnosis can be a long, difficult, and frustrating process.

For Fuerst, it took almost three years and he states:

If one suspects early onset dementia, one should choose a doctor who can distinguish between depression, menopause, and dementia. A neuro-psychiatrist may be more likely to recommend tests that will give a more accurate diagnosis. The best choice for most people is a doctor whom other doctors highly recommend.

What makes an ideal doctor? A Mayo Clinic study suggests the following:

1. Confident
2. Empathetic
3. Humane
4. Personal
5. Forthright
6. Respectful
7. Thorough

Are there any other traits you could recommend?