How Do I Talk With a Loved One With Early-Stage Dementia About End-of-Life Decisions?

Beginning a discussion about end of life with someone who is experiencing cognitive decline can be very challenging. If the person is in the early stages of Alzheimer’s disease or dementia, they may not be aware of the changes or think the discussion is premature. If they are in the middle stages of the disease, they may have limited ability to express their thoughts and ideas and may have lost the ability to make informed decisions. In any event, the longer you wait to address the issue, the more challenging it will become. 

Although there is no “right” or “wrong” way to talk with your loved one, The Conversation Project offers some simple, easy-to-follow guidelines that may help you proceed. You can read them in their entirety in the Conversation Starter Kit for Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of Dementia, but here are a few of the most salient points. 

• Be gentle. If your loved one has recently been told they have Alzheimer’s disease or dementia, they may be frightened of what the future holds. Due to the loss of insight and empathy that often accompanies dementia, they may resist any attempt to talk about what they want. One way to address this is to acknowledge that everyone is afraid to talk about death, including you. Then start the conversation by talking about what you want when you’re approaching the end of your life. “I don’t like to think about it, but when I do, I think I would like…” This may encourage your loved one to share their thoughts as well. 
• Focus on values. Rather than focusing on specific end-of-life measures, try to center your conversation around what is most important in your loved one’s life. What is most important to them? Do they love to eat? If so, you might ask what they would want to happen if they could no longer feed themselves or swallow solid food. Is family interaction paramount? If so, would they want to be kept alive with aggressive measures if they no longer recognized who their family was? These are hard questions, but framing them in the context of values can make them easier to ask.
• Keep it simple. People who are experiencing cognitive decline usually do best when information is presented or discussions occur in small bites. Bring up what’s most important first, which is who they would like to make decisions for them if they can’t speak for themselves. You may wish to make suggestions rather than ask them to come up with a name on their own. “Aunt Gin and you are very close. Do you think she would be a good person to tell the doctor what you want?”
• Break things up. You don’t have to address every aspect of end-of-life decision-making all at once. Let your loved one guide you — when they no longer seem engaged in the conversation, let it go for a while.
• Be prepared to go over things more than once. Even people who have no cognitive deficits tend to forget parts of important conversations. For people with dementia, this is especially true. Start each new conversation with a short review of what was discussed before. “Remember, yesterday we talked about…” You may need to refresh their memory more than once. 
• Use cues from the past. A person with dementia may retain some long-term memory, so it may help to bring up situations from the past. For example, if you are trying to have a discussion about aggressive end-of-life interventions, you might bring up someone in your family who had a prolonged or difficult death. “Remember when Dad was in the ICU and how hard it was on Mom and us?”
• Be persistent. Your loved one’s cognitive and emotional state will vary from day to day. If they are particularly resistant to having a conversation about their end-of-life wishes now, remind yourself that tomorrow is another day and resolve to try again.
  

Sources

“Your Conversation Starter Guide: For Caregivers of People with Alzheimer’s or Other Forms of Dementia”. The Conversation Project. https://theconversationproject.org/wp-content/uploads/2016/05/TCP_StarterKit_Alzheimers.pdf