The Two Questions We Must Ask About Dementia Right Now
Sep 27, 2026
We must support today’s caregivers while protecting our own choices for tomorrow.
After more than two decades working in hospice and end-of-life care, I can say that caring for someone living with dementia can be one of the most intense caregiving experiences a family will ever face. The journey may continue for years, affecting a caregiver physically, emotionally, psychologically, spiritually, and financially. Roles change. Relationships change. Sleep, work, health, finances, and family dynamics can all be affected. Yet we continue to treat dementia caregiving as though one devoted family member should somehow be able to manage it all.
At the same time, there is another side of this conversation that we cannot ignore. Many of us have never clearly documented what we would want if we developed dementia and could no longer speak for ourselves. We may have an advance directive, but have we explained what quality of life means to us? Does the person we’ve chosen to speak for us understand our wishes? When we talk about dementia, I believe we must address both sides of this issue: How do we support the people caring for loved ones with dementia today, and how do we protect our own wishes for tomorrow?
Dementia Caregivers Need More Than Encouragement
Dementia affects far more than memory. As the disease progresses, a person may experience changes in judgment, personality, sleep, mobility, language, appetite, impulse control, and the ability to recognize familiar people or surroundings. Behaviors that seem confusing may actually be forms of communication from someone who can no longer clearly say, “I’m frightened,” “I’m in pain,” or “I don’t understand what’s happening.”
Education can help caregivers understand these changes and respond with greater skill and compassion. But education alone is not enough. Even the most loving caregiver cannot safely provide around-the-clock care indefinitely without meaningful support. We need to stop praising caregivers for sacrificing themselves until they collapse. Caregiving should not require someone to lose their health, income, relationships, and identity. Families need practical help, respite, education, emotional support, and a dependable circle of people willing to step in.
Instead of telling a caregiver, “Let me know if you need anything,” offer something specific. Bring dinner. Do the grocery shopping. Stay with their loved one for two hours while they rest. Make the phone calls to research respite services. Sit beside them while they complete paperwork. Small, dependable acts of service can become a lifeline. No one can caregive alone, and no one should be expected to.
We Also Need to Talk About Our Own Future
The second question may be harder to face: What would I want if I developed dementia? General statements such as “I don’t want to be kept alive by machines” may not provide families with enough guidance during a long dementia journey. Dementia often doesn’t present one clear life-or-death decision. Instead, families may face a series of decisions about hospitalization, CPR, artificial nutrition, infections, comfort care, living arrangements, and what constitutes an acceptable quality of life.
There is no universal answer to these questions. The goal isn’t for everyone to make the same choices. The goal is for each of us to think about our values and communicate them while we still can. What abilities or experiences are essential to your definition of quality of life? Who do you trust to make decisions for you? At what point would you want care to focus primarily on comfort? These conversations are deeply personal, but having them can be one of the greatest gifts we give our families.
Planning Must Begin Before the Crisis
Dementia planning should happen while we still have the ability to understand our choices, communicate our preferences, and complete the appropriate documents. The National Institute on Aging’s advance care planning resources can help individuals and families begin thinking through future healthcare decisions.
A strong plan goes beyond signing an advance directive. Choose a healthcare decision-maker who understands your values and will honor your wishes. Define quality of life in your own words. Talk about possible medical decisions. Consider financial and long-term care needs. Put your wishes in writing with appropriate medical and legal guidance, and most importantly, talk to the people you love about why you made those choices. Documents matter, but conversations give our families the context they may someday desperately need.
This Is About Compassion, Not Fear
Talking about dementia and end-of-life planning is not giving up on life, nor does it suggest that a life with dementia has less value. People living with dementia deserve love, dignity, safety, connection, and excellent care at every stage. This conversation is about respecting the individual while also recognizing the tremendous responsibility carried by those who care for them.
We cannot wait until a caregiver is collapsing to offer help. And we cannot wait until someone has lost decision-making capacity to ask what they would have wanted. We must act in both directions at once: surround today’s caregivers with education, respite, resources, and community while preparing ourselves and our families for what may come.
No Family Should Have to Guess
Planning cannot predict every circumstance. Dementia is complex, and no document can anticipate every decision a family may face. But thoughtful planning gives the people we love a compass.
No caregiver should be expected to do this alone. No family should have to guess. And no person should lose their voice simply because we were too afraid to begin the conversation.
If you’re caring for someone living with dementia, supporting families professionally, or thinking about your own future wishes, you don’t have to navigate these conversations alone. Join us every Wednesday at 12 PM ET for the free Good Death, Good Life Café.
Additional Resources:
The GOOD DEATH Seminar Series: Register here
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