Aware? Well, We Hope So!

Editor’s note: This is a guest post from Don Wendorf and Lynda Everman, dementia advocates and former care partners.

World Alzheimer’s Month is an international campaign to raise awareness around Alzheimer’s disease and all types of dementia that takes place each September.  This year’s campaign highlights the importance of community support for families facing the challenges of dementia. And that’s a lot of families. In the U.S. alone, there are 6.5 million Americans living with dementia and over 11 million family members and friends providing more than $271 billion in unpaid care.

These statistics could be just painful, sad and scary, as these are devastating and ultimately fatal diseases, except that there are now many things that are hopeful, helpful and happy to know about and be inspired by. Researchers more fully understand the underlying processes of dementias (there are dozens of types) and are working to develop drugs that will, for the first time, actually affect the disease process, not just help with symptoms. Crucial to this enterprise is the ability to diagnose the diseases in their earliest stages, since the process is happening many years before symptoms are seen, with the damage being cumulative. A great deal is now known about biomarkers and genetics that predict dementia and  simple blood and eye tests will soon be available for early diagnosis.

It is now well documented scientifically that there are a number of life style interventions people can adopt that will significantly lower their risk for dementia, as well as every other major disease. These include aerobic exercise, a plant-based or Mediterranean diet, sleep (7-8 hours/night), new learning (beyond puzzles), socialization (loneliness is a killer underlying most diseases), and managing stress. These “brain health” interventions also give a better quality of life to people already living with dementia, not to mention everyone else.

There is a growing awareness, much of it fueled by our finally listening to the voices of those living with dementia, that people retain their personhood to the end of their dementia journey and that they can live much more fulfilling, purposeful and active lives than previously thought and for years longer than imagined.  We know people living with dementia who travel, speak at conferences or on podcasts, write articles or books, serve on advisory boards, play in bands, kayak, create art, and on and on. By focusing on what people can still do rather than on their limitations or losses (although these are real and must be dealt with) we can support and nurture their personhood.  We are learning more and more about how to connect and communicate even in later stages of dementia and how to include persons living with dementia in meaningful, joyful activities. Person centered care and empathy are life-giving to all concerned.

The expressive arts, particularly music and visual arts, have been found to have a tremendous power with people living with dementia and are being tapped into by many creative programs. Some, like Music & Memory, provide people in care facilities with headphones, players and personalized recorded music. Others (e.g. Respite for All Foundation) do respite or day care programs that utilize art projects, exercise, singalongs and other activities that allow the expression of creativity, competency, emotions, friendships/love and the chance to do things that serve and give to others, too. “Side by side” choirs (e.g. Music Mends Minds) are springing up in many locales and one program, Bringing Art to Life, even pairs students with people living with dementia to do art, music and life bio programs together, thus educating the next generation of caring people.

Faith communities offer extraordinary opportunities for people living with dementia to meet their spiritual needs and continue to be a part of a loving, supportive, nurturing community. Many resources are available now to help faith communities become “dementia-friendly” by adapting their worship services, physical setting, and programs. Numerous books ( e.g. Dementia-Friendly Worship: A Multifaith Handbook for Chaplains, Clergy and Faith Communities), blogs and podcasts address these topics. Many faith communities also offer support groups for care partners as well as for people living with dementia. People of faith can advocate for research funding and policies that enhance quality of life.  There is no limit to what faith communities can accomplish with an attitude of doing “with” rather than “for” persons in their congregations. Many congregations find themselves receiving far more than they give and having their congregations filled with new life. It just takes a little awareness and love. World Alzheimer’s Awareness Month would be a perfect time to get started.

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