13+ needs we share with people who live with dementia

14

naomi feil & gladys

“In order to empathize with old-old people, we need to understand the complex interweaving of physical deterioration and developmental needs,” writes Naomi Feil in The Validation Breakthrough.

Like Feil, who has more than 30 years experience working with the elderly, I’ve found that “old disoriented people have an intuitive wisdom, a basic humanity that we all share. Behind their disorientation lies a human knowing. I have witnessed this “human knowing” in people with dementia, even when they find it difficult to articulate their thoughts. I call it “intuitive clairvoyance.”

It shouldn’t come as a surprise that old people have the same needs all of us do. But somehow we lose sight of their humanity and their right to dignity. We treat them like children. We talk about them like they are invisible even when they’re right beside us. We tell them what to do. We restrain them physically and chemically. We ignore and isolate them. We fail to provide them the things they need to live full and productive lives to the end. What a shame!

We must use our failures (as Feil herself has) to develop a deeper understanding as well as better tools, techniques, and ways of caring for the elderly and people with dementia. I believe we must change the way we see and support the elderly, in particular people who have dementia. As they become less able to do so themselves, it’s our responsibility to help them get their needs met in the final part of their journey.

Fell suggests “old-old” people and people with dementia have psychological and social needs just like the rest of us. I would go further and say these are rights, not just needs. Everyone has the right to the needs Feil’s describes:

  1. Resolve unfinished issues, in order to die in peace.
  2. Live in peace.
  3. Restore a sense of equilibrium when aspects of self fail (e.g. sight, hearing, mobility, and memory).
  4. Make sense out of unbearable reality: find a place that feels comfortable, where one feels in order or in harmony and where relationships are familiar.
  5. Be recognized and have status identity and self-worth.
  6. Be useful and productive.
  7. Be listened to and respected.
  8. Express feelings and be heard
  9. Be loved and feel a sense of belonging; have human contact.
  10. Be nurtured, feel safe and secure, rather than immobilized and restrained.
  11. Have all five senses stimulated touch, sight, sound, smell, taste, and be allowed to express one’s sexuality.
  12. Reduce pain and discomfort.

I would add:

13. live joyfully, surrounded by laughter, love, music, fun and opportunities to connect with others in a meaningful way.

Most important Feil says, is that despite disorientation, the old-old and people with dementia must be given the opportunity to fulfill the “universal need to belong, to find identity, and to express themselves.”

Plus, says Marcy MacPherson, BA, BSW, as critical as all of the above is “to have purpose in life.” I couldn’t agree more, and it’s our job as care partners to ensure that happens.

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14 Comments

  1. Pingback: “Quiero irme a casa!” Pautas de abordaje – Demencia24h

  2. Hi Susan. You have probably noticed that I reply less. Gregory is not on his own for a little over 8 months. While I miss him MORE THAN EVER, I am more at peace and the grief is less. I have poured my energies into the MORE THAN EVER Education Fund when we began shortly before his passing and on the ALZHEIMER’S: A Love Story documentary which has been accepted by 19 film festivals around the world and has won 12 awards for excellence. I continue to work with Dementia Awareness and will be doing several presentations, using the documentary, for local organizations.

    Keep up the good work you are doing, I hold positive loving thought for you and your mom.

    Fondly,
    Michael

  3. Poignant post! Informs me that those living with dementia/Alzheimer’s are first and foremost human. They think, feel and love like us all. They deserve respect and dignity like us all. Now that we know this, what’s stopping us from taking that first positive step to change the dynamic between caregiver and cared for? Thank you for your insight.

  4. Susan – agreed. That list should be looked at as basic rights that everyone is entitled to. I just discovered Naomi Feil and am so moved by her work using Validation Therapy. As human beings, we never outgrow the yearning for validation when life becomes confusing or overwhelming. While disease and old age may rob us of our memories, it does not diminish our humanity.

    • “While disease and old age may rob us of our memories, it does not diminish our humanity.”

      Yes! I too think Feil’s work is tremendously hopeful and empowering. Certainly better than restraining and denigrating old people who deserve rather to be treated with compassion to preserve their dignity <3

  5. Thanks Susan. I find that continuing to support Gregory includes many of the 13 items you note. Some do not apply to him at his stage of dementia but even then it is important to be aware of what you can do. I think a summary item might be “see them as people, not their disease!”

  6. You have inspired me (once again). This time I’m adding Fell’s book to my library. My mother’s Alzheimer’s is real, but she isn’t old and certainly doesn’t feel old. So I have to be careful about her on this issue.

    As for the intuitive thing, it sounds like you are describing a brain that is more right brain oriented instead of the left brain that we over value. Have you ever read My Stroke of Insight by Jill Taylor? If not, find her youtube talk. It was fascinating!

  7. “As they become less able to do so themselves, it’s our responsibility to help them get their needs met in the final part of their journey.”

    Truer words were never spoken – we should be there whenever we see them struggling.

    • That’s my feeling, it’s not shared by everyone. But it’s the right thing for me. The thing is about struggle is that it’s necessary to get where we want to be. But that doesn’t mean that we don’t need support to grow and transform because sometimes those processes can be devastatingly lonely. We need supporters and cheerleaders every step of the way.

      As far as helping people in the struggle, there are limits; I think this parable gets to the core of the core of that:

      http://amazingwomenrock.com/the-butterfly

      XOX Susan

  8. This is very inspiring that it’s not just our family and friends with dementia, but all of our older population that deserves so much. We owe it to them to give them to adhere to this list and I especially love #13 🙂

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