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Including Your Loved One in Decisions After a Dementia Diagnosis: A Person-Centered Guide

A dementia diagnosis can feel overwhelming, but it does not mean your loved one loses their voice. Person-centered care means actively including them in decisions about their life, care, and future, for as long as possible. This guide offers concrete steps, phrases to use, and tools to help you honor their preferences, abilities, and dignity from the very start. You are not alone, and there are practical ways to make this work.

Key points

  • Include the person with dementia in decisions from the very beginning—it affirms their personhood and helps them live the best possible life.
  • Use simple, two-choice questions for daily decisions to preserve their sense of control without overwhelming them.
  • Set up legal documents (power of attorney, advance directive) early, while the person can still participate and sign.
  • Talk about future care preferences while the person can still have a normal conversation—do not wait until it is too late.
  • Use visual aids, simplified text, and calm, direct communication to support understanding.
  • Revisit decisions regularly and adjust the level of involvement as the disease progresses, but always aim to include them in some way.

Why Inclusion Matters Right After Diagnosis

When a person first hears 'dementia,' they may feel shock, fear, or grief. Yet this is also a critical window for shared decision-making. As one expert notes, the period right after diagnosis is emotional, but it is also when the person can still have a normal conversation about their wishes (Teepa Snow, Dementia Care Partner Talk Show). Including them in decisions—from daily choices like what to eat to bigger ones like future care plans—affirms their personhood and reduces feelings of isolation. The Alzheimer's Association emphasizes that assessment and care planning should 'support the individual and family to live the best possible life, with dementia,' which starts with understanding the person's unique experience and preferences.

The Risk of Taking Over Too Quickly

A common pitfall is well-meaning family members who, seeing the diagnosis, immediately take over all decision-making. One caregiver expert warns that 'the worst thing people can do is take over what they are trying to do' (All Home Care Matters). This can strip the person of their sense of control and accelerate feelings of helplessness. Instead, the goal is to become a 'detective'—observing, listening, and supporting the person to use their remaining abilities. Even if the person cannot manage complex financial or medical decisions, they can still express preferences about their daily life, activities, and routines.

Legal and Emotional Timing

Experts strongly advise setting up legal documents—like a durable power of attorney and healthcare power of attorney—as soon as possible after diagnosis, while the person still has capacity to understand and sign (Dementia Caregiver Support For Christians). This is not about taking away their rights; it is about ensuring their wishes are documented and respected later. At the same time, the person may need time to process the diagnosis. It is okay to have multiple conversations, using simple language and allowing space for emotions. The NICE guideline recommends using 'additional or modified ways of communicating, for example visual aids or simplified text' to support understanding and participation.

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

Step-by-step

  1. 1. Start with a check-in conversation: Soon after the diagnosis, sit down with your loved one in a calm, private setting. Use a gentle opening like: 'I know we just got some news. How are you feeling about it right now?' Listen without interrupting. This validates their emotions and opens the door for shared decisions.

  2. 2. Ask about their top priorities: Use a simple question: 'What matters most to you in your day-to-day life right now?' This could be staying at home, spending time with grandchildren, or continuing a hobby. Write down their answers. This becomes the foundation for all care planning.

  3. 3. Offer two simple choices for daily decisions: For things like meals, activities, or clothing, give two clear options. For example: 'Would you like to have soup or a sandwich for lunch?' or 'Do you want to go for a walk now or after your show?' This keeps the person engaged and in control without overwhelming them (Dementia Caregiver Support For Christians).

  4. 4. Involve them in care planning appointments: When you meet with doctors or care coordinators, bring your loved one and ask them directly: 'What questions do you have for the doctor?' or 'Is there anything you want to tell the doctor about how you are feeling?' The NICE guideline says people living with dementia should have access to a memory service and a named professional who coordinates their care. Ensure that professional speaks directly to your loved one, not just to you.

  5. 5. Use visual aids and simplified text: If the person struggles with verbal instructions, use pictures, written lists with large font, or a whiteboard to show options. For example, draw a simple picture of a shower and a bed to ask: 'Do you want to shower now or rest first?' This is recommended by NICE for supporting decision-making.

  6. 6. Discuss future care preferences early: While the person can still have a normal conversation, talk about big decisions like where they would want to live if they need more help, or what kind of medical care they want. Use the University of Washington dementia-specific advance directive or the Institute for Healthcare Improvement Conversation Starter Kit (AAFP). Frame it as: 'I want to make sure I know what you would want, so I can honor your wishes later.'

  7. 7. Set up legal documents together: Schedule a meeting with an elder law attorney. Bring your loved one and explain: 'This is to make sure your wishes are written down and respected. You are in charge of what you want.' Have them sign the documents while they still have capacity. This includes a will, durable power of attorney, and healthcare power of attorney (Dementia Caregiver Support For Christians).

  8. 8. Revisit decisions regularly: As the disease progresses, the person's abilities will change. Every few months, check in with them using simple yes/no questions: 'Are you still happy with how things are going?' or 'Is there anything you want to change?' Adjust the level of involvement as needed, but always aim to include them in some way.

What not to do

  • Do not take over everything immediately: Many caregivers, out of love, start making all decisions for the person right after diagnosis. This can cause the person to feel disrespected and helpless. Instead, step back and ask yourself: 'What can they still decide?' Let them keep making choices about their daily life, even small ones.

  • Do not avoid difficult conversations: It is tempting to protect your loved one from upsetting topics like future care or finances. But delaying these talks means the person may lose the ability to express their wishes. Have the conversation early, using gentle language like: 'I want to make sure I know what you would want, so I can help you later.'

  • Do not use complex language or too many options: Asking 'What do you want for dinner?' can be overwhelming. Instead, offer two specific choices. This reduces anxiety and supports the person's ability to decide.

  • Do not assume they cannot understand: Even if the person has memory loss, they may still understand emotions and simple statements. Always speak directly to them, not just to the caregiver in the room. Use eye contact and a calm tone. As one expert says, 'Adults are adults and should be able to make decisions for themselves for as long as they can' (Dementia Caregiver Support For Christians).

  • Do not forget to consider your own needs: When making care decisions, it is easy to focus only on the person with dementia. But you are part of the equation too. Ask yourself: 'Can I realistically support this decision? Do I need help?' Ignoring your own limits can lead to burnout and poor care (Dementia Careblazers).

Practical tools

  • The 'Two-Choice' Script for Daily Decisions

    Use this exact phrasing: 'Would you like to do A or B?' For example: 'Would you like to take a shower now or after breakfast?' or 'Would you like to wear the blue shirt or the red one?' Keep choices concrete and limited to two. This works for meals, activities, clothing, and even doctor visits. It preserves the person's sense of control without overwhelming them.

  • The 'What Matters Most' Conversation Starter

    Write down three simple questions to ask your loved one: (1) 'What is one thing you really enjoy doing each day?' (2) 'What is something you are worried about?' (3) 'If you could change one thing about your day, what would it be?' Use their answers to guide care planning. Revisit these questions every few months as their preferences may change.

  • Visual Choice Board

    Create a small board or card with two pictures (e.g., a photo of a park for 'go outside' and a photo of a couch for 'stay inside'). Point to each picture as you say the option. This is especially helpful for people who have trouble processing spoken words. You can use simple drawings or print photos from the internet.

  • Dementia-Specific Advance Directive

    The University of Washington offers a free, downloadable advance directive designed for people with dementia. It covers preferences for end-of-life care, living arrangements, and daily routines. Fill it out together with your loved one while they can still participate. Discuss with their clinician to ensure it is properly witnessed and stored.

  • The 'Check-In' Routine

    Set a weekly 10-minute time to sit with your loved one and ask: 'How are things going for you this week?' Use a calm tone and listen. If they cannot express themselves, watch their body language and mood. Adjust care based on what you observe. This keeps the person-centered approach alive even as communication changes.

Discuss with your clinician

Ask the doctor: 'What is the best way to assess my loved one's current decision-making capacity? Are there specific tools you recommend?'

Discuss: 'Given my loved one's type and stage of dementia, what kinds of decisions can they still safely make on their own, and where should I start providing more support?'

Ask about: 'Are there any medications or treatments that could help with cognition or mood, which might improve their ability to participate in decisions?'

Discuss: 'How do we handle situations where my loved one wants to make a decision that seems unsafe (e.g., driving, managing finances)? What is the best approach?'

Ask: 'Can you refer us to a memory clinic, social worker, or care coordinator who can help us with care planning and decision-making support?'

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