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Capturing Personal Care Preferences: A Guide for Family Caregivers and People with Dementia

When a person with dementia can no longer clearly express their likes, dislikes, and daily rhythms, care can become guesswork—stressful for everyone. Documenting personal preferences early, while the person can still contribute, turns that guesswork into a reliable guide. This article walks you through concrete steps to record what matters most, from morning routines to lifelong passions, and how to share that information with family and professional caregivers so the person’s dignity and comfort stay front and center.

Key points

  • Start documenting preferences early, while the person with dementia can still contribute their own voice.
  • Use the 'Three Things' prompt to capture what matters most—these small details are powerful guides for any caregiver.
  • Create a physical binder with labeled sections for routines, life story, medical info, and legal documents.
  • Share the preferences document with every new caregiver—family, hired aides, and facility staff—and post a laminated cheat sheet in a visible spot.
  • Update the document regularly as the person’s condition and preferences evolve.
  • Involve the person in the process as much as possible to preserve their dignity and sense of control.

Why Personal Preferences Matter in Dementia Care

Dementia gradually affects a person’s ability to communicate their needs and desires. What once was a simple statement—'I prefer a shower in the morning' or 'Please don’t wake me for breakfast'—can become impossible to articulate. Without a record of these preferences, caregivers may inadvertently cause distress by offering care that clashes with the person’s long-held habits. For example, a person who always showered at night may become agitated if staff insist on a morning bath. As one expert notes, knowing a person’s likes, dislikes, habits, and patterns is 'very, very helpful' for care staff, because it prevents unnecessary confusion and distress. This is not about controlling care—it’s about preserving the person’s identity and comfort when they can no longer advocate for themselves.

The Emotional Weight of Capturing Preferences

For family caregivers, the process of documenting preferences can feel bittersweet. It forces us to confront the reality that our loved one may soon lose the ability to speak for themselves. Yet it is also an act of profound love and respect. One caregiver described creating a comprehensive binder of her mother’s wishes as 'a gift to my family'—a way to lift the burden of guessing during a crisis. Another person living with dementia shared her own 'three things' she would want caregivers to know: keep a dog in her life, don’t wake her for breakfast, and play upbeat music to dance with her. These small, deeply personal details are the threads that keep a person’s humanity visible. By documenting them now, you give your loved one a voice long after words become hard to find.

When to Start and Who Should Be Involved

The ideal time to start documenting preferences is early, while the person with dementia can still participate in the conversation. Even if they have some difficulty, their input is invaluable. Ask open-ended questions like, 'What are three things you would want your caregivers to know about you?' or 'What makes a good day for you?' If the person is hesitant to share personal information, ease their concerns by explaining that this information will only be used in an emergency and that their privacy will be respected. If they remain reluctant, suggest involving a trusted attorney, friend, or another family member to help facilitate the conversation. The goal is to create a living document that evolves as the person’s condition changes—not a rigid list, but a flexible guide that grows with them.

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

Step-by-step

  1. Start with a conversation, not a form. Sit down with the person with dementia when they are calm and rested. Say something like, 'I’d love to write down a few things that make you feel good, so that anyone helping you will know exactly what you like. What’s your favorite time of day? What foods do you love? Is there a song that always makes you smile?' Keep it light and conversational. If they get frustrated, stop and try again later.

  2. Create a 'Three Things' list. Ask the person to name three things they absolutely want caregivers to know. For example: 'Always have good coffee ready when I wake up,' 'Play jazz music in the afternoon,' or 'Let me sleep in—I’m not a breakfast person.' Write these down exactly as they say them. This list becomes a quick-reference anchor for any caregiver, especially during transitions like moving to a facility or hiring a new home aide.

  3. Document daily routines in detail. Use a notebook or binder to record the person’s typical day: what time they wake, what they like to eat for each meal, how they prefer to bathe (shower vs. bath, morning vs. evening), favorite clothing (soft fabrics, loose fit), and any rituals (a cup of tea before bed, a walk after lunch). Be specific. For example, instead of 'likes coffee,' write 'prefers light roast with one teaspoon of sugar, served in a blue mug.' These details matter more than you think.

  4. Include life story and cultural preferences. Family members can help develop a 'life story' of the person—their childhood, career, hobbies, spiritual practices, and cultural traditions. This background helps caregivers connect on a human level. For instance, if the person was a teacher, they might respond well to being called 'Miss Clara' or enjoy looking at old textbooks. If they observe certain religious practices, note those too. This is not just nice-to-have; it is a core part of person-centered care.

  5. Gather legal and medical documents alongside preferences. While documenting personal preferences, also collect copies of advance directives, living wills, healthcare proxies, powers of attorney, and any do-not-resuscitate (DNR) orders. Keep these in the same binder or folder. As one expert advises, you want everything 'they would need to have access to easily without trying to find someone to help them with phone numbers and this and that.' Discuss with your clinician which documents are most relevant for your situation.

  6. Create a 'Caregiver Cheat Sheet' for new helpers. On one page, list the person’s top five preferences, their diagnosis, any allergies, and emergency contacts. Laminate it or put it in a clear plastic sleeve. Post it in a visible spot (like on the refrigerator or inside a cabinet door) and give a copy to every new caregiver—whether family, hired aide, or facility staff. This prevents well-meaning but clueless care that can cause distress.

  7. Use a binder with labeled sections. Get a three-ring binder with plastic pocket dividers. Label sections: 'Daily Routines,' 'Food & Drink,' 'Activities & Interests,' 'Medical Info,' 'Legal Documents,' 'Emergency Contacts.' Slip brochures, handouts, or printed lists behind each section. This system makes it easy for any caregiver to find what they need quickly, especially during a stressful moment.

  8. Include a behavior tracker or journal. Add a section where caregivers can note changes in mood, appetite, or behavior. This helps identify patterns—like increased agitation before meals or sundowning in the late afternoon. A simple log with date, time, behavior, and possible trigger can be invaluable for adjusting care strategies. You can find free printable worksheets online or create your own.

  9. Review and update the document regularly. Set a reminder every three months to revisit the preferences binder. As dementia progresses, likes and dislikes may shift. A person who once loved loud music might now prefer quiet. A favorite food might become unappealing. Cross out old entries and add new ones. Date each update so caregivers know what is current.

  10. Share the document with all care team members. When you hire a professional caregiver or move your loved one to a facility, provide a copy of the preferences binder to the case manager or nursing director. Mention it during the intake meeting. As one source notes, 'make sure to mention that to the case manager when you meet with them.' If you are hiring privately, include these preferences in the job description so applicants know what to expect.

What not to do

  • Do not wait until a crisis to start documenting. Many families only think about preferences when the person is hospitalized or can no longer speak. By then, the opportunity to capture their authentic voice is lost. Start early, even if it feels awkward. A simple conversation today can prevent heartache tomorrow.

  • Do not assume you know what the person wants. Even if you have been their primary caregiver for years, their preferences may surprise you. One person with dementia might hate being woken early, while another loves a structured morning. Ask directly, or observe their reactions to different routines. Assumptions can lead to care that feels wrong to the person, even if it seems logical to you.

  • Do not overwhelm the person with a long list of questions. If you sit down with a clipboard and fire off 50 questions, you will likely get frustration or silence. Instead, weave the questions into everyday moments. While having coffee, ask, 'What’s your favorite kind of music?' While folding laundry, say, 'Do you prefer these soft socks or the ones with grippers?' Keep it natural.

  • Do not keep the document hidden away. A binder stuffed in a drawer or saved on a computer that no one knows about is useless. Place it in an obvious spot—on the kitchen counter, in a designated 'care folder' by the phone, or with the person’s medical supplies. Tell every family member and professional caregiver where it is and how to use it.

  • Do not forget to include small joys and quirks. Preferences are not just about medical care—they are about what makes life worth living. Does the person love a particular TV show? Do they enjoy having their hand held? Do they hate the feel of certain fabrics? These tiny details can make the difference between a day of comfort and a day of distress. Write them down.

  • Do not ignore cultural or spiritual preferences. A person’s faith, dietary restrictions, or cultural traditions are core to their identity. If they observe certain holidays, prefer halal or kosher food, or want a spiritual leader to visit, document that. Caregivers who are unaware may inadvertently cause offense or distress.

Practical tools

  • The 'Three Things' Conversation Starter

    Use this simple prompt: 'If you ever couldn’t tell me what you want, what three things would you want your caregivers to know?' Write down the answer verbatim. For example: '1. Keep a dog in my life. 2. Don’t wake me for breakfast—let me sleep in, but have good coffee ready when I get up. 3. Play upbeat music and dance with me.' This list becomes a powerful, personal guide that any caregiver can follow.

  • The Preferences Binder with Pocket Dividers

    Get a sturdy three-ring binder and clear plastic pocket dividers. Label sections: 'Daily Routines,' 'Food & Drink,' 'Activities & Interests,' 'Medical Info,' 'Legal Documents,' 'Emergency Contacts.' Slip printed lists, brochures, and handouts into the pockets. This keeps everything organized and accessible. One caregiver described creating such a binder as 'a gift to my family' because it lifted the burden of guessing during emergencies.

  • The 'Life Story' Page

    Create a one-page summary of the person’s life: where they grew up, their career, hobbies, favorite music, spiritual practices, and family. Include a recent photo. This helps caregivers see the whole person, not just the diagnosis. Family members can contribute details. As one source notes, family can help develop a 'life story' that offers 'detailed background information about a resident’s life experiences, personal preferences and daily routines.'

  • The Caregiver Cheat Sheet (Laminated)

    On a single sheet of paper, list: the person’s top 5 preferences, diagnosis, allergies, emergency contacts, and any critical medical info (e.g., 'diabetic—needs insulin after meals'). Laminate it and post it in a visible spot (refrigerator, inside a cabinet door). Give a copy to every new caregiver. This prevents well-meaning but clueless care that can cause distress.

  • The Behavior Tracker Log

    Use a simple table with columns: Date, Time, Behavior, Possible Trigger, What Helped. Fill it out for a week to identify patterns. For example, you might notice agitation peaks at 4 PM (sundowning) or that the person refuses to bathe after 8 PM. Share this log with the care team. Free printable worksheets are available online from dementia care resources.

  • The Advance Directive Folder

    Alongside preferences, keep copies of legal documents: healthcare proxy, living will, power of attorney, DNR orders, and any long-term care insurance policies. Use a separate tab in the binder. Discuss with your clinician which documents are needed. As one expert advises, having everything in one place means 'they’ve got something they’re ready to go' in an emergency.

Discuss with your clinician

Ask your doctor: 'What advance care planning documents are most important for my loved one’s specific diagnosis? Should we complete a POLST or MOLST form?'

Discuss with the clinician: 'Are there any medical preferences (like pain management or feeding tube decisions) that should be documented now, while my loved one can still participate?'

Ask: 'How should I handle changes in preferences that seem to conflict with medical advice? For example, if they refuse a medication but previously agreed to it.'

Inquire: 'Is there a standardized tool or template your practice recommends for documenting personal care preferences?'

Discuss: 'If my loved one is unable to communicate, how will the care team use the preferences I’ve documented to guide daily decisions?'

Related guides

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