Advance care planning is important for everyone, especially for those living with dementia.  Advance care planning is more than end-of-life care decisions. As people travel on their dementia journey, there are multiple crossroads that involve decisions. Should a person with moderate to severe dementia continue to have colonoscopies and mammograms? The answer depends on what you are going to do with the information. If the mammogram shows a mass, or the colonoscopy shows a tumor, are you going to seek aggressive care like chemo and radiation? Are you and your loved one ready to face faster memory losses from chemo and radiation? Same with colonoscopies. The sedation and the reversal agents can make thinking and memories permanently worse.

When I see people in the clinic, I usually have some type of advance care planning conversation at each visit. The conversation may start with the care partner asking me if mom should have a knee replacement or if dad should have back surgery to address pain issues. As we discuss options, I ask the family members to imagine the post-surgery physical therapy or restrictions. The options are different for a person living with dementia who will participate in physical therapy than for someone who cannot. The conversation also includes the affect of operative sedation and post-operative pain medications on memory and cognition.

As the dementia journey progresses, advance care planning does start to address end-of-life care. Some care partners have had this conversation with their loved one in the past, and they are clear about their decisions. “Antibiotics are OK, IV fluid is OK, but no breathing machines or CPR.”

Other care partners are troubled. Especially if the relationship between the care partner and the person living with dementia was difficult. One of my neighbors came to me, and he was clearly distressed. His wife of 10 years (they had remarried in their 60s) developed dementia and was convinced he was not her husband. She called him all sorts of names and fought his attempts to help her. He could not afford 24-hour care or nursing home care. He was exhausted and overwhelmed. When she became seriously ill and was hospitalized, he was paralyzed by his feelings. Yes, she was his wife and he loved her. On the other hand, if she were gone, his responsibilities for her would also be finished. He repeatedly said to me, “I don’t want the guilt. I don’t want to be the one who killed her.” He could not bring himself to agree to any “do not resuscitate” orders.

In my clinic, I reframe advance care planning as allowing natural death when there are no more options. Dementia does more than take away memories. Dementia kills people by killing the neurons that control breathing, swallowing, and wakefulness. Once a person with dementia is bedbound, has problems swallowing, and is asleep more than awake, the dying process has started. The body is shutting down. Putting a tube in the person’s stomach is not helpful. These tubes do not prolong life and do not prevent pneumonia. Deciding against putting in a feeding tube is NOT euthanasia, as some groups would have you believe. You are allowing natural death at this point.

I think end-of-life conversations are difficult because we live in a “fear of death” culture. Few of us have ever cared for someone who was dying or who died while we sat at the bedside. I think of the stories my grandmothers told me, of caring for relatives who died at home and then having the funeral in the living room. Now, death usually occurs in a hospital and funerals are held in commercial funeral homes. This fear of death can affect decision making, can stop conversations about end-of-life care and preferences.

For clinicians reading this blog, please start having advance care planning conversations before, or at the beginning, of the dementia journey. Have them at intervals. Advance care planning is not a “one and done” conversation. Preferences change as the dementia progresses. For family care partners, do not be shy about discussing advance care planning. Talk with your loved one to gain a sense of his or her preferences. Keep the conversation going for as long as you can.

Categories: Alzheimer's Disease Care Partners Caregiving communication Palliative Care

Dr. Rita Jablonski

Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.