Tag Archives: Alzheimer’s research

The Future of Dementia Care

Our tour of duty will come to an end one day. But new generations of caregivers will be asking the same questions: What’s the best medical treatment for dementia? How will we manage the financial cost of care? Is there help out there for caregivers and families? Some communities are developing service models that may help future caregivers find answers faster.

Between the Pond and the Woods

Minnesota is one state working to address its dementia care problems in a pro-active way. After the passage of the National Alzheimer’s Project Act in 2011, the state created a working group to recommend programs that could serve growing numbers of people with the disease. Like my home state of Pennsylvania, Minnesota is facing a demographic shift that will result in a much higher population of elderly residents. The number of Minnesotans over age 65 is expected to double by 2030 to comprise about 20% of the state population. As part of this trend, the number of Alzheimer’s and other dementia patients is expected to increase dramatically.

The Minnesota working group, which has evolved into a coalition called Act On Alzheimer’s, has been developing a toolkit to help communities become more “dementia capable.” According to this group, a “dementia capable community” is “informed, safe and respectful of individuals with the disease [and] their families and caregivers, and provides supportive options that foster quality of life.”

The main element of their strategy is the implementation of a program called the New York University Caregiver Intervention (NYUCI). This service model was developed to educate caregivers about dementia and involve other family members in supporting the main caregiver. It also provides caregivers with methods of dealing with the behavioral aspects of the disease. Services include two individual and four family counseling sessions, referrals to weekly support groups, and telephone counseling. Research on the effectiveness of the program showed improved levels of caregiver wellbeing and an estimated median delay of 557 days before permanent residential placement of the person with dementia.

According to research documented in an article by Steven S. Foldes and Kirsten Hall Long, the NYUCI model reduces medical costs (mainly by delaying residential care) and may save caregivers 1.3 hours of time spent on daily caregiving tasks. Since every state will take its own approach to dealing with dementia, you may want to do your own research on what’s happening where you live. But if you are interested in learning more about the NYUCI model, or how your community can become “dementia capable”, check out this YouTube video which explains more about this concept. 

Caregivers have a million jobs already. But if we recruit others to get involved in improving our community’s response to the disease, the caregiver role may be easier for those who come behind us. Minnesota’s slogan is “Everyone can act on Alzheimer’s, starting with you.” So go ahead and nudge somebody.

Dementia Detective: Dr. Virginia Lee

When considering the dangers of nuclear war, Albert Einstein said, “We can not solve our problems with the same level of thinking that created them.” Ending the Alzheimer’s epidemic  also requires thought that is far more advanced than our current understanding of the disease.

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Fortunately there are some great minds working to unlock the mysteries of dementia. Last week I interviewed Dr. Virginia M-Y Lee, director of the Center for Neurodegenerative Disease Research at the University of Pennsylvania. Dr. Lee is an extraordinary dementia detective who has spent years studying the nature of tau and other proteins that accumulate in brains plagued by Alzheimer’s. Her discoveries have helped identify new paths for research that may guide development of improved treatment.

Although Dr. Lee’s ranks among world experts in her field, I did not meet her to discuss scientific research. I talked with her to learn more about her practice of meditation as a form of self-care. Since studying mindfulness meditation in 2006, Dr. Lee has been using this technique to help reduce stress and its negative impact on her own health. Her preferred form of mindfulness meditation is taught at the University of Pennsylvania as a healing strategy for people struggling with stress and illness — including Alzheimer’s.

Professor Lee’s meditation practice — like other aspects of her life — conflicts with our stereotype of the “typical” scientist. Dr. Lee’s early years, as described in an article by Rajendrani Mukhopadhyay of the AMERICAN SOCIETY FOR BIOCHEMISTRY AND MOLECULAR BIOLOGY, were spent in southwest China. When she reached the age of five, Dr. Lee’s family moved her to Hong Kong where she remained until 1962. She left then to study piano at London’s Royal Academy of Music. When approaching college age, she decided to switch her studies to science, eventually earning an undergraduate degree in chemistry. At the master’s level, her interests shifted again — this time to biochemistry. Pursuit of further education moved her through academic programs in San Francisco, the Netherlands, and Harvard.

This incredible career path pushed Dr. Lee to become fluent in many languages including Chinese, English, music, and the advanced vocabulary of science. While her diverse education helped her become a formidable champion in the effort to end Alzheimer’s, it also fostered her ability to think across traditional boundaries that often separate art and science, East and West.

The breadth of her knowledge has indeed elevated Dr. Lee’s thinking to the level Einstein prescribed for solving global problems.  For those of us who are not world class scientists, Dr. Lee also recognizes our need to manage stress driven by our relationship with dementia. After years of extraordinary accomplishment, she uncovered a deep truth that applies equally to professors and caregivers, “You must come to terms with the level of responsibility you carry in life.” She observes that we often take on more and more tasks without ever noticing that we’re asking ourselves to do too much. We can’t forget, she warns, that we must care for ourselves if we really want to help others. Over the next few weeks, I’ll be talking with others like Dr. Lee who are using new techniques like mindfulness to manage the stress of lives touched by dementia. Stay tuned.