Most Alzheimer’s organizations have found that, in general, people are more afraid of a dementia diagnosis than finding out that they have cancer. One reason for this fear is the stigma that accompanies dementia. While sympathetic to those who have Alzheimer’s and other dementias, people who haven’t been close to anyone with the disease often think that any type of satisfying life is out of reach after such a diagnosis.
According to the Alzheimer’s Foundation of America (AFA) and the Alzheimer’s Association, people with Alzheimer’s and other dementias want others to know that they can still "function." They can still have a meaningful life. Some develop a renewed sense of purpose because they know that they have a disease that will cause cognitive degeneration, so that every moment they have is precious and should be lived to the fullest.
People living with dementia are anxious to teach the public that while a dementia diagnosis is not what anyone wants to receive, it’s not as if they are "healthy" the day before the diagnosis and in late stage dementia the day after. Many people live for years with manageable dementia, and any number of them would call their lives satisfying.
John Zeisel, Ph.D. wrote a book titled "I’m Still Here: A New Philosophy of Alzheimer’s Care," that promotes the idea that people can live full lives even while they are managing their dementia. Zeisel writes passionately about the insights that people with dementia can offer. He believes that people with dementia can live satisfying lives and continue to contribute to society long after their diagnosis. Zeisel feels strongly that the arts, whether hands-on arts therapy or attending plays and museums, can contribute to their quality of life. Many others agree.
Organizations specializing in all types of art for people with dementia are teaching practical ways to increase quality of life. Creativity Matters, the National Center for Creative Aging and Arts for the Aging are three such organizations.
People with early stage Alzheimer’s are living with Alzheimer’s, not dying from it. In the later stages of the disease, those with Alzheimer’s who are treated as whole human beings in positive environments can still give and receive great love, participate in activities and share moments of joy and laughter.
An example of courage and positive thinking
Leah, who writes powerful blog posts for HealthCentral, has vascular dementia. She has been teaching all of us who follow her articles what it’s like to live with dementia. Leah ended her latest post with this note:
"I am hoping that God is filling your life with blessings (because life can be good even with dementia. You just have to find that silver lining in all you do)."
God bless you, too, Leah, and the millions of others who have dementia, yet continue to contribute immeasurably to the world around us. Life does, indeed, go on, after a dementia diagnosis. No matter what we face, life is meant to be lived, not just endured.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.