Q: How do we nurture life as Friends for those experiencing dementia or other cognitive changes?
Q: How can we support that of God in one another in the face of cognitive, emotional and behavioral challenges?
What is Dementia? Dementia is not a specific disease, but a group of brain related symptoms that cause changes in intellectual and social functioning. Alzheimer’s disease is one cause of dementia. A symptom of dementia is memory loss, but not all memory loss is dementia. Dementia may progress in different ways; your health practicioner may be able to tell you what to expect if you or a loved one have dementia, but situations vary.
Someone with dementia may forget where they are, how to care for themselves, or what to do with everyday objects. They may feel frightened, and even suspicious. Friends and family may not know how to communicate, comfort or be with the person in the ways they are used to being together. The following points may help you cope and make connections.
- The term “memory loss” actually refers to a loss of the ability to access memories, not the loss of memories themselves. Still, this is a significant loss to a person experiencing it and their loved ones. Allow yourself to grieve and validate the loss you feel. This will help you learn to cope with changes you are experiencing and/or to be with your loved one in a meaningful way.
- Sometimes old pictures, familiar places, smells or music can help a person access memory, and when that happens, enjoy! However, testing or criticism when a person can’t remember does not help and may create even more confusion and frustration. You can find comfort by being beside your friend or family member “in the moment”, appreciating life and beauty that is present. Sensory experiences such as enjoyable smells, tastes , sights and sounds do not require memory to be appreciated.
- The essential spirit of a person is not lost, a person with dementia can feel and express love, compassion, humor, anger, wonder and grief. They can feel lonely or isolated when not included, as anyone can. Those who work with people even in late stage dementia have observed communication and acts of kindness that transcend words.
- Think in universals- Someone who is grieving or angry needs to be recognized and validated, even if we are not quite sure why. We all need opportunities to give – perhaps through a familiar task such as rolling pie dough or chopping vegetables, holding a baby, petting a dog. Life has much to offer right outside our door, and someone with dementia can remind us to pay attention to sparkling pavement, bird calls, a magnificent sky, or everyday things that are inherently strange or funny. Marvel.
Essential Skills for Dementia Care: Daniel Kuhn and Jane Verity in The Art of Dementia Care*, cite these essential skills in caring for someone with Dementia:
“Live in love and learn from one another.”
PYM Faith and Practice, 2002
More Tips for being present with Friends who are experiencing dementia because of Alzheimer’s disease or other conditions:
- Even if the person does not seem engaged , remember they are present–always include the person in your dialogue.
- Approach from the front with a friendly smile and eye contact.
- Use the person’s name to get their attention, and give them your attention, undivided.
- Be aware of your own body language—try to be relaxed and open
- Speak clearly and slowly, but using adult words—do not patronize
- Always validate feelings.
- Remember that another’s reality may not be yours. Try simply to be with the person in acceptance and love. Correction of facts may only lead to frustration.
- Talk about things present—the sky, her dress, the flowers .Accept that you need to repeat yourself, remember that a person with short term memory loss will often forget something very quickly after hearing it.
- Listen with loving kindness to what the person is repeating. Listen for a need they cannot express, a story they need to tell. Listen with your heart, even if you have trouble understanding their words.
- If you have trouble seeing past what has been lost, try for a moment to focus lovingly on one beautiful thing about the person—their laughter, their hands, the color of their eyes. This may help ground you to be present with the essential spirit of the person you are accompanying.
“Let the Friendly Testimony that there is that of God in everyone lead us to cherish every human being…”*
PYM Faith and Practice, 2002
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More articles on this website:
Anxiety and Change
Care of the Caregiver
Reaching Out to the Spiritual Nature of Persons With Dementia, Annual Meeting of NCOA/ASA 2008 at Baylor College
Robin Cruise, Illustrated by Stacey Dressen-Mcqueen, Little Mama Forgets, 2006 Melanie Kroupa Books, New York, NY. (A multigenerational picture book)
* Daniel Kuhn and Jane Verity, The Art of Dementia Care, 2008, Thomson Delmar Learning, Clifton Park, NY.
John Zeisel, PhD, I’m Still Here, 2009, Penguin Group, New York, NY.