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Making Decisions That Honor Your Loved One’s Wishes: A Guide for Surrogate Decision-Makers in Early and Young-Onset Dementia

Making medical, financial, and daily care decisions for someone with dementia while respecting their long-held wishes can feel like walking a tightrope. You want to honor their voice, but their ability to express that voice is changing. This article gives you concrete steps to use 'substituted judgment'—deciding as you believe they would decide—while keeping their dignity and comfort at the center. You are not alone, and there are practical tools and phrases to help you navigate each conversation and choice.

Key points

  • Use substituted judgment: decide as you believe the person would decide, based on their values, not yours.
  • Start conversations early, while they can still participate—use tools like the Dementia Values and Priorities Tool.
  • Offer limited choices for daily decisions to preserve their autonomy and dignity.
  • Document every major decision and the reasoning behind it to protect everyone legally and emotionally.
  • Ask doctors: 'Would you recommend this if they did not have dementia?' to uncover bias.
  • Take care of yourself—you cannot make good decisions if you are exhausted and isolated.

What Is Surrogate Decision-Making and Why Does It Happen?

When a person with dementia can no longer make their own decisions—due to memory loss, confusion, or inability to understand complex information—a surrogate (often a healthcare power of attorney, spouse, or family caregiver) must step in. This is not about taking over; it is about stepping into their shoes. The legal and ethical standard is called 'substituted judgment': you make the choice you believe the person would have made if they were still able to do so, based on their values, past statements, and known preferences. This applies to everything from daily care routines to major medical interventions like surgery or life support.

The Difference Between Your Wishes and Their Wishes

A common pitfall is confusing what you want for your loved one with what they would have wanted for themselves. For example, you might want to keep them alive at all costs because you are not ready to let go, but they may have clearly stated they never wanted to be kept on a ventilator. The Alzheimer’s Association emphasizes that all end-of-life decisions should respect the person’s values and wishes while maintaining comfort and dignity. This means you must separate your own grief and fear from the decision-making process. It is hard, but it is the most loving thing you can do.

Capacity Is Not All-or-Nothing—Involve Them as Much as Possible

Even in early or young-onset dementia, a person may still have capacity to make some decisions, especially if you offer limited, structured choices. The NICE guideline advises using modified communication—like visual aids or simplified text—and giving extra time for them to process. For instance, instead of asking 'Do you want to go to the doctor?' (which can overwhelm), you might say 'Do you want to go to the doctor now or after lunch?' This respects their autonomy while still guiding the outcome. The goal is to keep them engaged in decision-making for as long as safely possible.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Start early and document their values and directives while they can still speak for themselves. Use a structured tool (like Compassion & Choices' Dementia Values and Priorities guide) to explore what matters most—whether that's staying at home, avoiding life support, staying pain-free, or not being a burden. Gather any existing living will, healthcare power of attorney, and verbal statements they've made over the years, and record their words verbatim. Share copies with their doctor, the hospital, and key family members so you're not the only one holding the map.

  2. Use substituted judgment as your compass at every decision point. When a choice arises, pause and ask: 'If they could sit here with a clear mind, what would they say?' Then answer based on their long-held values—not on what you want, what's easiest, or what you're emotionally ready for. If they always said 'I never want to be a burden' or 'no machines keeping me alive,' a feeding tube or ventilator likely goes against their wishes, even when honoring that choice breaks your heart.

  3. Ask the doctor the bias-check question before consenting to any major treatment: 'If my loved one did not have dementia, would you recommend the same thing?' This simple question exposes hidden assumptions about quality of life that can lead to substandard care. You deserve the same standard of care they would receive without this diagnosis.

  4. Offer limited, structured choices in daily care decisions like bathing, eating, and clothing. Even in moderate stages, a person can choose between two clear options: 'Would you like the blue shirt or the green one?' 'Shower now or after lunch?' 'Pill with applesauce or pudding?' This preserves their sense of control, reduces resistance, and protects the dignity that dementia tries to steal.

  5. Log every major decision and the reasoning behind it in a simple notebook or digital file. Write entries like: 'Based on Dad's 2022 statement that he never wanted to be on life support, we chose a DNR order. Present: Mom, Dr. Lee, hospice nurse.' This protects you legally, shields you from second-guessing, and helps other family members understand and accept your choices.

  6. Revisit decisions as the disease progresses, because circumstances and capacity change—even if core values usually hold. For young-onset cases especially, think about how their wishes around parenting, career, finances, and long-term care may differ from those of someone diagnosed at 80. What felt right two years ago may need gentle updating.

  7. Schedule regular respite for yourself, and if you feel stuck, use a 25–30 minute decision-counseling session with a geriatric care manager, palliative care team, or ethics professional.

What not to do

  • Do not confuse your wishes with theirs, and do not let guilt or grief drive the choice. Anchoring decisions to what you can personally live with—rather than their stated values—overrides their autonomy.

  • Do not exclude them from decisions just because they have dementia, and do not overwhelm them with open-ended questions. Offer simple, limited choices to preserve the autonomy they still have.

  • Do not dismiss past statements just because they seem confused now. Dementia may erase their ability to repeat a preference, but it does not erase the truth of what they said when lucid.

  • Do not decide alone, and do not wait for a crisis to start the conversation. Isolation leads to burnout and poor judgment; loop in family and professionals well before an emergency forces a rushed, uninformed choice.

Practical tools

  • The 'What Would They Say?' Script

    When facing a tough decision, say aloud: 'If [name] were sitting here with a clear mind, what would they tell me to do?' Write the first answer that comes, based on their past statements. Use it as your starting point, then check it against their documented values.

  • Limited Choice Cards

    Create two simple index cards for any daily-care decision: 'Shower now' and 'Shower after lunch.' 'Blue shirt' and 'green shirt.' 'Walk in the garden' and 'sit on the porch.' Hand them both, let them point or pick. Reduces anxiety and gives them real control.

  • Dementia Values and Priorities Tool (Compassion & Choices)

    A free, structured worksheet that walks you through concrete questions about quality of life, pain management, being at home, life support, and what 'dying well' means. Use it early while they can participate, and revisit it yearly. Turns vague wishes into citable guidance.

  • The 'Ask the Doctor' Checklist

    Before any major appointment, write down three questions: (1) 'If my loved one did not have dementia, would you recommend this treatment?' (2) 'What are the realistic chances this improves their daily quality of life?' (3) 'What happens if we do nothing?' These three questions surface bias and clarify goals.

  • The Decision Log

    A dedicated notebook or password-protected document. For each major decision, record the date, the decision made, who was consulted, the person's known wishes on the topic, and the reasoning you followed. Useful for family harmony, caregiver handoffs, and legal protection.

  • The Two-Minute Pause

    Before saying yes or no to any major decision, set a timer for two minutes. Close your eyes, take slow breaths, and deliberately recall the person's voice, face, and words. This interrupts reactivity and returns the focus to their values.

Discuss with your clinician

Ask your doctor: 'What is the legal standard for capacity in our state, and how do we assess it for my loved one?'

Discuss: 'If my loved one has a living will that says no artificial nutrition, but they are still eating some pureed food, how do we interpret that?'

Ask: 'What are the specific risks and benefits of this treatment for someone with dementia, and how does it align with their known wishes?'

Inquire: 'Can you help us complete a Dementia-Specific Advance Directive (like the one from University of Washington)?'

Discuss: 'If my loved one is in pain but cannot communicate, what signs should I watch for, and how do we ensure comfort?'

Related guides

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