dementia care

Dr. Sung Shen-chu (宋思權 / S.C. Sung / Jeff Sung), a longtime neurologist in Chiayi, Taiwan, wrote this letter based on decades of caring for dementia and stroke patients. The widely shared version you saw is a condensed core; the original Facebook post lists 22 specific wishes. It is a powerful exercise in empathy: treating the person with dementia as still fully human, preserving dignity, and prioritizing emotional connection over “correcting” reality.0

Here is the fuller set of points drawn from his letter (translated and slightly smoothed for clarity while staying faithful to the spirit):

  1. Every time you enter, call me by name and tell me who you are. Never ask “Do you know who I am?” — if I don’t, it will panic and shame me.
  2. If I live in another timeline, don’t drag me back; stay with me there for a while. I may be happier.
  3. If I talk about going to an old friend’s house or speak of a deceased relative as alive, smile and join that reality with me.
  4. Don’t argue. I truly cannot tell whose version is right. Let me “win” with love.
  5. If I no longer recognize your face, don’t take it as rejection. My brain is confused, not my love.
  6. If I’ve forgotten utensils, don’t immediately feed me. Put on a bib and let me try with my hands — the way I once ate as a child.
  7. When I’m anxious or sad, hold my hand and sit quietly. Don’t just say “Don’t think so much.” Sing with me if it helps.
  8. Never treat me like a child. Even without language or full understanding, my soul remains adult.
  9. Let me keep doing things I enjoy — a little drink, watching YouTube, listening to an audio Bible. These can still spark good feelings.
  10. Let me tell the same old stories of past glories, even if you’ve heard them a hundred times. They may be all I still remember clearly.
  11. If I suddenly lose emotional control, don’t blame me. Look for the unspoken pain or discomfort underneath.
  12. Treat me the way you would want to be treated. Tenderness may be one of the last things I can still feel.
  13. Keep snacks available. Irritability can simply mean hunger I can no longer name.
  14. When you discuss me, do it in my presence rather than as if I am invisible.
  15. If full-time care becomes impossible, do not feel guilty. I know you love me.
  16. If I move into a care facility, keep visiting. I may forget your face but still feel the warmth of your presence.
  17. When I mix up names or facts, be patient. No sighs or frowns — it is not deliberate.
  18. Play music I love; melodies often outlast other memories. Help me with hearing aids so I can still hear.
  19. If I move objects around, gently put them back. I’m not stealing; I’m seeking a sense of security.
  20. Take me to Sunday services when possible. Even if I sit quietly, the atmosphere of reverence and hope may still reach me.
  21. Don’t be stingy with hugs and hand-holding. Physical connection can speak louder than words.
  22. Most important: remember that I am still me. I may no longer look or act exactly as you remember, but I remain the same soul you have loved.

Additional practical wisdom that complements the letter

These ideas align with person-centered dementia care approaches used by clinicians and organizations worldwide:

  • Validate feelings, not just facts. Techniques like validation therapy or “join the journey” reduce distress far more effectively than repeated reality orientation once insight is lost.
  • Watch for unmet physical needs first. Pain, constipation, urinary issues, hunger, thirst, temperature discomfort, or sensory overload often drive “behavioral” changes. Address those before assuming the behavior is purely psychological.
  • Simplify the environment. Reduce noise, clutter, and competing stimuli. Consistent routines, clear visual cues (large labels, photos), and good lighting lower confusion and agitation.
  • Use remaining strengths. Music, familiar scents, touch, and simple repetitive activities (folding towels, sorting objects, looking at photo albums of distant past) often work better than complex cognitive tasks. Long-term memory and emotional memory typically outlast short-term factual memory.
  • Communicate simply and warmly. Short sentences, one idea at a time, calm tone, eye contact, and allowing extra response time help. Nonverbal cues matter enormously.
  • Protect safety without stripping autonomy unnecessarily. Allow as much choice and independence as possible in safe ways (e.g., finger foods, supervised walking).
  • Support the caregivers. Guilt, grief, and exhaustion are common. Respite, support groups, realistic expectations, and professional help are essential — the letter itself acknowledges that full-time family care is not always sustainable.
  • Plan ahead. Advance directives, “dementia directives,” and clear wishes about medical interventions at different stages can ease future decisions. Writing one’s own version of a letter like Dr. Sung’s is a meaningful step.
  • Spiritual and relational continuity. For people of faith (as in Dr. Sung’s case), familiar rituals, prayers, hymns, or scripture readings can provide deep comfort even when cognitive content is lost. The same principle applies to any core identity anchors — family photos, favorite places, cultural traditions.

The deepest message is consistent across clinical experience and this letter: dementia changes abilities and memory, but it does not erase personhood. Empathy, patience, presence, and respect for dignity remain the most powerful “medications.” Sharing the letter (and writing personalized versions) helps families prepare emotionally and practically for a journey that is as much about relationship as it is about medicine.

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