The Conversation Project has released an updated version of our guide For Caregivers of People with Alzheimer’s or Other Forms of Dementia in English, Spanish, and Chinese.
For early and middle stages, when people may be more able to converse, the guide offers tips for how to talk and for what to do if the person does not want to talk. The guide talks about suggestions for understanding what matters most to the person during different stages of the disease.
The guide breaks down the process into four key steps:
- Prepare: Think about how and why you should start a conversation with the person you care for, sooner rather than later, and understand how to overcome common barriers.
- Talk: Learn some helpful approaches to starting a conversation, and some things you can talk about so you understand what matters to the person in their life and in their health care.
- Advocate: Learn how to be the best possible advocate for the person you care for, and how to make sure that person’s health care team understands their wishes and decisions.
- Learn from Others: Find some helpful advice from people who have cared for someone with dementia.
The new version also incorporates feedback from the community. We’ve added other tips for if your person doesn’t want to talk or has a hard time getting started, including:
- 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. Pick just one question at a time.
- The person may be willing to answer a few yes/no questions about what matters. 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: “I need your help with something.” “What does a good day look like for you?” “I want to make sure I know how you feel.” “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.
These conversations are important for your person, as well as for you as a caregiver to help when you make decisions. We want to remind you: You are doing the best you can. It can also help to share the experience with someone you trust, who can listen and offer ideas.
We’ve also made small changes to wording. Our goal is to make the guide as clear, helpful, inclusive, and accurate as we can.
In addition, we’ve changed how we talk about how a person with Alzheimer’s or another dementia may or may not recognize what is happening to them. It’s important to understand that dementia causes changes in the brain that may make it hard for someone with the illness to know they have it. What may look like denial is often a lack of awareness. The guide offers suggestions for how to talk in this situation:
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.
Dr. Catherine Madison, one of our reviewers, and Dr. Lael Duncan offer more information and suggestions below for caregivers:
Talking about and documenting what we may want in different circumstances allows each of us to have a say in our health care. A diagnosis of dementia adds another layer of complexity to the discussion and makes the conversations more urgent.
Understanding Dementia
Dementia is a term that refers to many illnesses that cause changes to the brain. A dementia can affect many abilities, including language, memory, visual and spatial awareness, recognition, and thinking skills. Getting advice and support from others who have experienced similar challenges can be helpful.
Alzheimer’s Disease is the most common type of dementia. Over 6 million Americans are living with this condition. Changes happen gradually. Early on, social behaviors may look the same. That can make it hard for the individual and people around them to recognize what is happening at first.
Altered Reality
Because of how a dementia changes the brain, sometimes the person with dementia is not capable of seeing the differences in themselves that may seem obvious to others. This lack of awareness is most often related to physical changes in the brain; it is not usually caused by denial.
Decision-making
Part of making decisions about what we want is imagining potential scenarios in the future. Dementia frequently makes it more difficult for a person to imagine the future. As a result, they may avoid or postpone decision-making. Statements such as “I will get help when I need it” are common. The person with dementia does not see what others see. They may not recognize changes that seem obvious, like the need for assistance in the home or the loss of the ability to drive and cook safely.
Planning Can Help
While none of us can control precisely what happens in the future, planning and communicating about our wishes increases the chance things will go as we would like and increase opportunities for pleasant experiences with the people and things we care about.
The statements and decisions that are part of planning for care through the end of life are personal and unique to each individual situation. But these conversations are critical for all of us. It is never too soon to talk. With a dementia diagnosis, it is especially important not to wait.
Some useful tools and activities include:
- Dementia Directive— a form for advance care planning specifically for people with dementia
- Go Wish and Five Wishes — resources for documenting and sharing wishes
- Prepare for Your Care — videos and stories to help prepare for someone else’s care, or your own
- With Dementia, More is Needed than a Boilerplate Advance Directive — one example of someone’s experience. Katy Butler shares her experience with her father’s dementia, and the conversations she has chosen to have with the people who matter to her about her wishes.
Have you used the guide For Caregivers of People with Alzheimer’s or Other Forms of Dementia or other resources? What have you found helpful?
Dr. Catherine Madison shares two books to consider: The Art of Dying Well by Katy Butler, including her writing on neurocognitive impairment, and Finish Strong by Barbara Coombs Lee, which includes practical advice on the action items emerging from good conversations.