31 Lessons Learned from Persons Living with Dementia and Care Partners

The following are lessons that I have learned as a neurologist and care partner, both from my father, and from others who are living with dementia and their care partners. These were first compiled for a webinar for the Dementia Alliance International. I am thankful for opportunities to be in relationships with those who are living with dementia.

1. Care partners are curators of another person’s museum of life.
2. The innate value and dignity of human beings cannot be stolen by any condition or circumstance. To care with compassion, we must first believe that all people retain an incontrovertible identity.
3. The beauty, vitality and relational energies inside the very one living with dementia can provide the inspiration for the care partner’s journey.
4. We should love and honor persons in their current state, rather than holding them accountable to be what our egos need them to be.
5. Allow persons living with dementia the opportunity to express themselves as completely as they can.
6. Distractions must be minimized during interactions with persons who are living with dementia.
7. We should always look people in the eyes when they are sharing their stories. We should realize that they may be sharing their stories without using words.
8. One’s story needs to come out. When words fail, art, in all forms, can be a vehicle for expressing one’s story. Expressive arts and opportunities to explore creativity should be made available to everyone who is living with dementia.
9. Nothing stirs the soul more than a feeling of belonging. We must do everything in our power to promote this kind of experience daily in people who are living with dementia.
10. Always try to remember the silent struggles of others, which may lie buried beneath attitudes and behaviors that we don’t understand.
11. Rich present moment experiences open the pages of a person’s narrative, bolster identity and bring a sense of continuity to a person’s existence.
12. Laughter is essential. It is the great equalizer. But listening rivals laughter as the best medicine. Listening requires use of all senses, not just hearing.
13. We must not take ourselves too seriously. Play is important at any age.
14. It is essential to develop the practice of self-compassion.
15. As care partners, we should act as if our lives are mirrors reflecting only the good and true image of personhood and none of the toxicity of dementia.
16. There is no greater privilege than to help someone find his or her true voice, and no greater crime than to silence it.
17. Culture change cannot occur if the voices of those who are living with dementia are not heard.
18. Don’t take it personally if someone living with dementia offends you or hurts your feelings.
19. Empathy is the game changer in creating a culture of compassion in dementia care. Empathy increases when persons allow themselves to have meaningful relationships with those living with dementia. It is especially important to facilitate this process in young people.
20. Though the requirements of care partnerships can sometimes bring out our worst, they also can bring out our best human qualities.
21. Cultivate spiritual intentionality. Get past denial and resentment to acceptance and gratitude. Choose to look for opportunities to love more deeply in each moment of the ongoing care partnership.
22. Reliance upon one’s faith and spirituality can provide a deeper meaning to the journey through dementia for everyone involved.
23. Mindfulness is a very important practice to cultivate (for ones living with dementia, care partners and healthcare providers).
24. Meaningful relationships can be maintained with persons living with dementia even in late stages. Presence is the most important characteristic of these relationships.
25. Brain pathology is not the only determinant of wellbeing; the relational qualities of one’s surroundings play a major role.
26. The strength of the ego’s need to retain control often is proportional to the level of denial exhibited by a care partner.
27. It is much better to be kind than to be right. When in doubt, default to kindness. When not in doubt, default to kindness.
28. The need for generativity never goes away. Models of dementia care must address this need.
29. We would do well to remember the things we learn from old people, young people, wounded people and disabled people.
30. Life is about relationships. That doesn’t change if someone has dementia.
31. Personhood, relationships, and empowerment promote living well.