How to Discuss End-of-Life Care

As a caregiver of someone with dementia, you may need to have challenging conversations regarding end-of-life wishes. Though sometimes uncomfortable and emotionally charged, these discussions are essential. Gaining clarity about your loved one’s wishes will ensure that their preferences are respected during their later stages of life. Planning ahead will also reduce stress and uncertainty for you and your family during critical moments.

Here are some strategies to help you approach end-of-life discussions with sensitivity, compassion, and confidence.

Talking about end-of-life wishes is about honoring your loved one’s autonomy. It ensures that their values and desires are respected, even when they may no longer be able to communicate them. Dementia, particularly in its later stages, can impair decision-making abilities. Therefore, it is crucial to discuss preferences early, while your loved one can still clearly express their wishes.

End-of-life planning may cover:

• Medical preferences: Including whether they want life-sustaining treatments like feeding tubes or resuscitation.
• Legal and financial decisions: Who will make decisions if they are unable to, and how assets should be managed or distributed.
• Personal wishes: Preferences for comfort care, hospice, or other end-of-life arrangements, such as funeral plans or where they’d like to spend their final days.

It’s important to have these conversations early in the dementia diagnosis process, while your loved one still has the cognitive ability to make informed decisions. Ideally, discussions should start when your loved one is more likely to understand the implications of the conversation and articulate their thoughts clearly. However, if the conversation hasn’t yet occurred, it’s never too late to start. Even as dementia progresses, your loved one may still be able to contribute meaningfully to the conversation.

It’s also possible that your loved one has been wanting to discuss these topics but has felt hesitant or unsure about how to initiate the conversation.

End-of-life discussions require sensitivity, preparation, and a calm, supportive approach. Here are some strategies to help initiate the conversation:

1. Choose the Right Time and Place
   Timing is critical. Choose a moment when you and your loved one are not rushed or stressed. It’s also essential to have this discussion in a comfortable, private setting where you won’t be interrupted. Consider your loved one’s emotional state—avoid starting the conversation if they are already feeling anxious or confused.
2. Use Gentle Openers
   Instead of diving straight into specifics about end-of-life care, begin with a more general discussion about their overall values and what matters most to them as they age. For example:
   • • “I’ve been thinking about the future, and I want to make sure we understand your wishes.”
     • “It’s important to me that your preferences are honored. How do you feel about talking through some of these choices?”

   These gentle openers allow you to ease into the conversation without overwhelming your loved one.

3. Be Honest and Empathetic
   Acknowledge that this can be a difficult conversation but emphasize its importance. Let your loved one know that this is a way to ensure their voice is heard, even if they become unable to speak for themselves later. For example, you might say:
   • • “I know this may not be easy to talk about, but I want to make sure we do what’s right for you. I want to respect your wishes.”

   Maintaining empathy throughout the conversation helps build trust and encourages openness.

4. Ask Open-Ended Questions
   Allow your loved one to express their thoughts and feelings without pressure. Open-ended questions encourage dialogue rather than one-sided discussion. Some questions to consider include:
   • “What’s most important to you about your care in the future?”
   • “How do you feel about medical treatments that prolong life even if it means a reduced quality of life?”
   • “Are there certain things you want or don’t want when the time comes?”

   These types of questions offer your loved one space to share what they value and how they envision their care, without feeling overwhelmed by too many details at once.

5. Involve Others When Appropriate
   While it’s important to respect your loved one’s privacy, there may be times when including other family members or healthcare professionals in the conversation is helpful. Involving others, such as a family doctor or a social worker, can provide a broader perspective and help ensure that everyone is on the same page. It can also be comforting for your loved one to know they have a support system in place.
6. Take Your Time
   End-of-life conversations often take time. You don’t need to cover everything in one sitting. Allow your loved one to process the information and be prepared to revisit the topic multiple times. If your loved one seems uncomfortable or overwhelmed, it’s okay to take a break and return to the conversation later.

Once your loved one’s wishes are clear, it’s important to formalize them through legal and medical documents. These may include:

• Advance directives: A legal document that outlines specific medical treatments your loved one does or does not want in case they are unable to communicate their decisions.
• Healthcare proxy or power of attorney: Assigns a person to make healthcare or financial decisions on their behalf.
• Do Not Resuscitate (DNR) orders: Specifies whether your loved one wishes to receive life-saving measures, such as CPR, if their heart stops.

Working with a lawyer or healthcare professional can ensure these documents are properly completed and legally binding.

Discussing end-of-life wishes with a loved one who has dementia may feel daunting, but it is a critical step in ensuring their dignity and preferences are respected. Approach the conversation with empathy, patience, and a focus on their values. By taking the time to have these discussions, you are honoring their wishes and easing future burdens for yourself and your family.

For additional information and resources regarding end-of-life planning, please visit the Alzheimer’s Association website by clicking here.

Alzheimer’s Association. (2023). Wandering and Getting Lost. Alzheimer’s Association. Retrieved from https://www.alz.org

National Institute on Aging. (2021). Wandering in People with Dementia. National Institutes of Health. Retrieved from https://www.nia.nih.gov/news/wandering-people-dementia

Mayo Clinic. (2022). Alzheimer’s Disease: Safety Tips for Caregivers. Mayo Clinic. Retrieved from https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-caregiver-tips/art-20044148

Cummings, J. L., & Zhong, K. (2022). Behavioral Symptoms of Dementia: Wandering. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 18(6), 1242-1245. doi:10.1002/alz.12600