Conversations about what matters most to someone living with Alzheimer’s or another form of dementia, understanding their values and wishes, and helping them have a say in their health care are important.

What do you do when they don’t want to talk about what matters to them, or have a hard time getting started? We’ve culled the below tips to get you started, from those with experience.

• Pay attention to your tone. This is a time to be gentle, curious, and humble.
• Take note of situations that might invite conversations such as the experience of friends and family, or illness and death in TV or books.
• The idea of one big conversation can be overwhelming. Instead, you can have several short conversations.
• The person may be willing to answer a few yes/no questions about what is important to them. For example, “I think that something you really value is ____. Does that sound right to you?”
• Use whatever language feels right to help your person be more comfortable. For example:
  1. “I need your help with something…”
  2. “What does a good day look like for you?”
  3. “I want to make sure I know how you feel.”
  4. “We’ll figure this out together.”
• If the person really doesn’t want to talk, take a pause. Keep the door open for more conversations in the future. The person may or may not remember the previous conversation.

When talking about what matters with a person who has dementia, make clear that the conversation is for everyone — not just for them. Remember that dementia can make it hard for them to see what is happening. It can be helpful to have the conversation “both ways” — where both of you talk about your wishes for health care through the end of life.

The Conversation Project has a guide For Caregivers of People with Alzheimer’s or Other Forms of Dementia in English, Spanish, and Chinese. Read more in this blog, Guidance for Caregivers of People with Alzheimer’s or other forms of Dementia.

Want to keep connected to The Conversation Project for more ideas? Sign-up for our newsletter, follow us on social media (X/Twitter, Facebook, Instagram, and YouTube), and feel free to reach us at ConversationProject@ihi.org.

One Response

1. Tensil Clayton says:

   September 17, 2024 at 12:23 am

   I am a caregiver for my husband of 59 years. He has normal pressure hydrocephalus and is declining in his ability to talk and write. The expense for his skilled nursing center is expensive and I wish you had articles on financial advice for saving our funds from financial advisors who charge too much for their advise and for managing our money.

   Reply