Tending And Befriending Folks With Dementia And Mild Cognitive Impairment By Katherine Schneider, Ph.D.

By Katherine Schneider, Ph.D.

Ten percent of people over 65 have dementia, and 22% more have mild cognitive impairment, according to a recent Columbia University study. So, chances are good that you and/or some friends fall into this group. One of the joys of retirement for me has been spending more time with friends, including those with dementia. 

Here are my top ten tips:

• Dementia and mild cognitive disabilities are just like cancer or arthritis; they are nothing to be ashamed of or to talk about in a hushed voice. If the person brings up memory problems, don’t rush to reassure. If asked, be honest in your response. Instead of “everybody forgets things,” consider asking them to tell you more about what they’re noticing and acknowledge their concern. If you’ve noticed a problem, state your observation in a non-shaming way: “I’ve noticed you seem to have more trouble finding words, especially when you’re tired.”

• Show up. Whether they still know you or not and whether they will remember five minutes later that you did, show up anyway. It says something about you and the friendship and is a good way to pay forward.

• Don’t let your awkwardness about what to say or sadness about how your friend has changed keep you from staying friends. The friend is still there; just changed in ways that you need to roll with. 

• If the person is in a memory care unit, plan a short (an hour or less), structured visit. Take a treat, a flower, a picture to look at together, a well-behaved pet, a poem you like to read aloud, etc. Plan to do more of the talking as the person loses the ability to talk or understand.

• Make questions short, yes/no, and avoid “Do you remember?” and “What did you do today?” kinds of questions. They can feel like a test. Instead, say, “I remember you and I did this together” or “This morning, I did this,” and then pause to see if they volunteer anything.

• When the friend is trying to communicate and can’t find the words, gameify the search. Pretend you’re playing twenty questions or charades. If the friend can still see the humor in it, in addition to the frustration, it may help get the word unstuck from wherever those words hide.

•  Slow down. Leave time for responses, time to be together without words, time to enjoy the environment and comment on it.

• If the person says things that are hard to listen to, like “Take me home” or “I wish I was dead”, listen; acknowledge their right to be upset. Acknowledge that you wish you could make things all better, but you can’t. After some time for tears, gently ask if they’d like to hear a funny story from your week or some other more upbeat topic. Want a hug? Sometimes helps too if you’re comfortable with that.

• Be prepared for surprises like the person saying things that you know aren’t true. Respond to the emotional part of the statement, and don’t get into an argument about the facts. If they tell you they were in France yesterday, responding with “that must have been fun” beats saying “you couldn’t have been; you don’t even have a passport.”

• If a caregiver is around, spending a few minutes listening to them vent without trying to fix the problem or judging them for feeling burned out will help them do their hard job. Thanking staff who seem attentive at a facility and getting to know them a bit reminds them that you see them as an individual, just as they see your friend as one. We all like to be seen and appreciated.

• If you’re upset after a visit or want to learn more, contact the Alzheimer’s Association or your local Aging and Disability Resource Center. There are lots of support groups, a 24-hour hotlines, and good info to be had.

On a recent visit to a dementia care facility, my friend with dementia spotted two of us coming down the hall. She yelled out, “There’s Blind Kathie,” to which I responded, “There’s Old Mary and Nasty Joyce (her sister who was with me).” We all laughed about having two names, and the visit got off to a wild and woolly start, as usual.

Above all, adopt an “improv” mindset of “yes and.” You and your friend are on a journey, and it’s unknown territory for both of you. There are roses and thorns on the path. Viva friendship!

Katherine Schneider, Ph.D. (blind from birth) is a retired clinical psychologist living in Eau Claire, WI with her tenth Seeing Eye dog. She has served on several boards, including the Eau Claire County Board, the Governor’s Committee for Persons with Disabilities, and the Benetech/Bookshare Board. In addition to numerous professional papers and articles, Katherine has published a memoir To the Left of Inspiration: Adventures in Living with Disabilities, a children’s book, Your Treasure Hunt: Disabilities and Finding Your Gold, and two books for seniors (half of whom will develop disabilities in later life), Occupying Aging: Delights, Disabilities and Daily Life, and Hope of the Crow: Tales of Occupying Aging. 

She originated the Schneider Family Book Awards for children’s books with disability content through the American Library Association and an award for superior journalism about disability issues through the Walter Cronkite School of Journalism at Arizona State University.

Locally, Katherine started the Access Eau Claire fund through the Eau Claire Community Foundation to help non-profit organizations work toward full inclusion of people with disabilities. She’s a passionate advocate for access for all to the good things of life, like chocolate, puzzles, and thrillers. Subscribe to her blog http://kathiecomments.wordpress.com for details.