The importance of ACP for dementia patients

November 14, 2023
4 min
Dr. Michael Madison, CEO

In the New York Times opinion article titled, “My Father Didn’t Want to Live if He Had Dementia. But Then He Had It.”, Dr. Sandeep Jauhar, a cardiologist, discusses the challenges faced by his family as their father had dementia. Their father had practiced as a geneticist and had been very intellectually active until he was diagnosed with dementia. Approximately twenty years prior to his dementia diagnosis, the father had written a letter to his other physicians on stating very clearly, that he and his wife , “….want to live only if we have a meaningful life.”

Dr. Jauhar describes the conundrum faced by many families in their choices to honor advanced directives completed by family members prior to the end of their lives. Patients with dementia are particularly common and create difficult choices. Personality changes and personal care issues are common: often issues related to nutritional support arise . As issues of food and water intake arise, difficult choices about intravenous fluids and feeding tube placement are offered to family members.

Even if advanced directives have been completed utilizing a platform like Thanacare, families struggle fulfilling the wishes of their loved ones. Dr. S. Jauhar describes the anguish that he endured as he and his physician brother decided to withhold intravenous fluids for their father, who although not in pain, had cognitively deteriorated to a level which they knew their father would not have approved for himself. The dilemma faced by this family is common.

A video wish created by individuals before they are ill discussing the treatment and care scenarios they desire if diagnosed and struggling with dementia or other conditions, can be helpful for families trying to respect their loved one’s wishes. An advanced directive in video form elucidates one’s desires for care and can help to relieve family members of the responsibility and guilt associated with choosing comfort care measures for loved ones. The video can reassure the decision makers that their loved one “ would not want this done.”

After the initial article, the New York Times published “Comments” concerning this difficult situation and the article. In the November 11, 2023 article titled, “Tough Decisions About Dementia and End-of-Life Care,” a variety of writers address the dilemma facing the families of patients diagnosed with dementia. Craig James writes, “I’ve had seven decades of life; a few more months at the end are nothing compared to what I’ve achieved and how I want to be remembered. I want to die with my dignity intact. I want to be remembered as a whole human, not a hollowed shell. I don’t want the last memories of my loved ones to be of me in a diaper, unable to answer the simplest questions.”

The value of advance care planning, transparent discussions with key decision makers in your family, and proactively evaluating and considering various treatment options which may be available, but not desirable, with your primary care provider may prevent the dilemma discussed in this article. Thanacare provides patients with a straightforward solution to addressing many of these challenges.