Gray areas and the eventual cost of dementia care. It’s substantially more than for heart disease or cancer.

Gray areas…

In our “Having Your Voice” class, we talk about gray areas…the time when we begin to lose the ability to make effective decisions.

Anyone living long enough will experience this to some degree but, for some, it is the beginning of a more serious, substantial, and accelerated decline into dementia. It is important to appreciate that Alzheimer’s is not the only form of dementia… there are others that are equally devastating.

Gina Kolata’s article from the New York Times on October 26, 2015 states that the cost for treatment of heart disease and cancer for the last five years of life is roughly $175,000 while the cost for dementia care is $285,000.   The cost difference is due to the hands-on care required for caring for someone with dementia.

If you want to learn more about the impact on family, read “A Life Worth Ending”, a compelling article by Michael Wolff whose mother had dementia. He beautifully describes the woman she was, the last tragic years of her life, and the impact on the family.

What are the options for someone who develops dementia?
1. Having financial means helps because there are resources to support the person.
2. Having long term care insurance is valuable in gaining assistance.   However, it is expensive and usually has to be purchased when you are young and don’t need it. (Wolff comments darkly about the ongoing struggles to gain payment for services for which he asserts his mother is entitled).

While I am not advocating suicide, two well written articles address the decisions that were made by two women who were diagnosed with early onset Alzheimer’s disease. Both women recognized the loss of dignity and the many burdens they would place on others as their disease progressed. They made a different choice.

Gilean Bennet, a former professor and psychotherapist who lived in western Canada, wrote a farewell that described her reasoning and decision to take medicine to end her life. It includes comments about the needless expenditure of resources when there was little that would bring her a satisfying quality of life.

Robin Henig wrote about a professor of psychology who carefully researched how to take her life after she was diagnosed with early onset Alzheimer’s disease.  Although she didn’t want to take her life, she knew that she would get to the place where she couldn’t because of the impairment of her disease. Henig describes how her impairment almost defeated her intention.

In the realm of Hollywood films, “Still Alice” beautifully depicts the dilemma faced by a professor diagnosed with early onset dementia. It depicts Alice’s failing in an attempt to take her life because she was too impaired to complete the act of taking pills. Clearly, in patients with dementia, the window of opportunity to take their own life closes at some point.

QUESTIONS FOR YOU
As always, there are profound and difficult questions for you to ponder. Here is a brief sample:
1. What would you do if you were diagnosed with a progressive incurable form of dementia?
2. How much medical care would you want to sustain your life (such as for blood pressure, cholesterol, heart medication)?
3. Are there family members you could identify who would be willing to care for you?
4. Do you or they have the resources (financial, personal, spiritual, etc.) to care for you?
5. Would you consider taking your life if you were able to do it?

Share your responses to these questions with your family. It’s an important conversation to have.

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