Leader in Advancing Alzheimer’s Research Reviews Challenges Ahead

Dr. Neil Buckholtz, National Institute on Aging

Dr. Neil Buckholtz, director of the Division of Neuroscience at the National Institute on Aging (NIH), explains that a long, difficult journey lies ahead for researchers worldwide striving to understand Alzheimer’s disease, develop better treatments to slow its progress and ultimately find a cure. Eventually, he says, “we hope to be able to delay the onset or prevent Alzheimer’s disease entirely.”

In a recent fascinating interview, Dr. Buckholtz lays out with precision the achievements to date and the goals and challenges for research professionals in academia, government and industry. Go to http://1.usa.gov/17PLIJM to read or hear “A conversation with… Dr. Neil Buckholtz.”

Readers may be interested in learning that Dr. Buckholtz participated in the May 2013 “Remember This” Symposium sponsored by the Hurwitz Lecture Fund at the Charles E. Smith Life Communities. The topic: Alzheimer’s Disease: Current Understanding and New Directions.

“The new national push on Alzheimer’s has re-energized all of us, I think, and has elevated research on Alzheimer’s in the national conversation about aging and health.”

Caregiver Guilt: What to Do If You Feel It

If I had to name the one emotion I hear about most frequently from family caregivers who assist loved ones living with dementia, its guilt. In fact these caregivers are pained just to have to admit this and share their thoughts with me.

Here’s what’s overwhelming: the unremitting stress that comes with the reality of their situation, their heavy responsibilities and the difficulty they face in juggling care with everything else in their lives, e.g., children, husband, job, and their own personal and mental health needs. Where does guilt come in? When, no matter how exhausted you are, “there are most likely times when you tell yourself that you could do better,” says Dr. Alexis Abramson on her blog, The Dr. Alexis Blog.

I’ve recently come across one of her posts, “10 Tips to Help You Say Goodbye to Caregiver Guilt,” which constructively addresses the guilt dilemma. Here are the tips, but I suggest you go to the actual blog itself for full elaboration, insights and suggestions. By the way, you’ll find other excellent advice on the blog…as well as a link to obtaining Dr. Abramson’s book, The Caregiver’s Survival Handbook.

1. Acknowledge your feelings.
2. Think quality, not quantity
3. Establish priorities
4. Set limits
5. Redefine your concept of caring.
6. Act from love, not from a sense of debt.
7. Forgive and seek forgiveness.
8. Foster their independence.
9. Face the facts.
10. Don’t succumb to peer pressure.

Let’s Get Past the Stigma of Dementia

Photo of President Ronald Reagan and Margaret Thatcher by Gerald Penny/Associated Press

Paula Span, in a recent article for her insightful New York Times blog, The New Old Age, considers the terrible stigma attached to dementia: “Alzheimer’s and other forms of dementia, to this day, carry a stigma that most other diseases—heart failure, for example—do not.”

To pursue her point, Span compares how the families of President Ronald Reagan and Britain’s Margaret Thatcher revealed diagnosis of the condition in both world leaders to the public. In Reagan’s case, the disclosure was contained in an open handwritten letter; Thatcher’s family, on the other hand, chose to avoid using the term dementia.

In my work at Charles E. Smith Life Communities, I continually observe how families differ in how they share the reality of a loved one’s dementia with friends and relatives. They seem to feel uncomfortable, embarrassed or pressed to explain why this has happened to someone long recognized for being so smart, vital, and competent.  

But, Span hits the nail on the head when she writes this: “We know that dementia will become an increasingly common condition in coming years, that it’s a terminal disease which doesn’t respect the public stature or intellectual accomplishments of its victims (our emphasis), that it can cause families to grieve for the people they’ve lost long before they die.”

My advice is to be honest, willing to discuss the diagnosis with friends and relatives, and ready to shift the focus to the lasting abilities, not disabilities. As a society, this is what we must do.

Read “A Singular Life, an All Too Common End” by Paula Span at http://nyti.ms/1bCIDuM .

Spring Fever

Regardless of the time of year, it can be a challenge to come up with meaningful activities to do with a person living with dementia. Now that spring has arrived (and summer is around the corner), it’s a great time to explore the outdoors and take advantage of the warmer weather.

When choosing activities, try to identify things the person you are caring for has historically enjoyed, while focusing on his or her abilities and modifying the activity based on their stage of disease. Here are some random tips:

1. Work in the garden together. Sometimes just repotting plants is easy and fun to do.
2. Grab an ice cream cone as a cooling treat.
3. Toss a ball in the yard or park to get some outdoor exercise.
4. Play with pets or visit a zoo.
5. Take a trip to a botanical garden.
6. String Cheerios to hang outside for birds.
7. Have an afternoon tea party outside.
8. Feed the ducks. 

By the way, just because it’s spring doesn’t mean you have to go outside. Simple Indoor activities can be worthwhile too. Consider these ideas:

1. Do some spring cleaning together.
2. Dance!
3. Make homemade lemonade.
4. Look at family photographs.
5. Make a scrapbook.
6. Work on a puzzle together.

Finally, it may be helpful to have activities ready in different rooms of the home so you always have engaging ways to spend time together right at your fingertips.

If your loved one happens to live in a memory care residence, ask staff about their activity schedule so you can arrange your time to visit when something that interests you is happening.