Among the general public, Alzheimer’s is typically considered a horrible, cruel and devastating disease that destroys its “victims.” One that robs them of their very humanity.
By Marie Marley
+Alzheimer's Reading Room
However, when I interviewed several experts on the disease, a somewhat different picture emerged.
They unanimously agreed that although Alzheimer’s is a terrible disorder, people who have it can and do still have the capacity to enjoy life, even though for those in the later stages of the disease it may be for only relatively brief periods at a time.
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This article is longer than those I usually post so it is being broken down into two parts.
If you are caring for someone with Alzheimer’s, please try to read it all. It could lead to a significant improvement in your ability to engage and connect with your loved one.
According to Virginia Bell and David Troxel, writing in The Best Friends Approach to Alzheimer’s Care, “Too much attention has been paid to the ‘tragic side’ of Alzheimer’s disease. This is a terrible disease. Yet, by dwelling on the negative it is too easy to victimize people with the illness and settle for lower standards of care.”
I recently interviewed Teepa Snow, nationally renowned expert on Alzheimer’s caregiving. When I asked if she thought people with Alzheimer’s can still enjoy life, she answered, “Yes. Almost all people with dementia, even those in the later stages of the disease, can enjoy life if they have the right support and environment.”Tom and Karen Brenner, a husband and wife team of Alzheimer’s caregiving experts, train family members, professional caregivers and medical staff in the use of cutting edge interventions for persons who have dementia. Tom answered my question by saying, “Yes. And their enjoyment in life is based, in part, on our enjoyment of them. It’s like a swinging door – it goes both ways.”
The entire book, Creating Moments of Joy: A Journal for Caregivers, by Jolene Brackey, is dedicated to this issue. She writes, “We are not able to create a perfectly wonderful day with [people who have Alzheimer’s], but it is absolutely attainable to create perfectly wonderful moments – moments that put smiles on their faces, a twinkle in their eyes, or trigger [pleasant] memories.”
Carole Larkin, owner of Third Age Services in the Dallas/Ft. Worth area, is a geriatric care manager who specializes in helping families with dementia issues. When I asked her the same question, she answered, “Absolutely. They can and do enjoy life. That enjoyment, when it happens, is moment by moment – pretty much the same way we enjoy life.”
Karen added, “We believe we can reach all people with Alzheimer’s, including those others consider unable to communicate in any way. It’s almost always possible to communicate - even with people who have lost their verbal skills.”
People in the Early Stage of Alzheimer’s
In the early stages of the disorder you can often share in whatever fun activities the person enjoyed before developing Alzheimer’s. Some games may need to be adjusted, however, to accommodate your loved one’s diminishing mental capacity. For example, you may need to play a simple card game instead of bridge; checkers instead of chess.
Once the Brenners formed a “Poetry Circle,” giving residents in a nursing facility poems to read out loud. There was one lady in particular who was losing her hearing and hardly ever spoke at all. When they gave her a poem to read she stood up and read it as though she were a trained actress. “Her performance was brilliant,” Karen said.
People with Mid-Stage Alzheimer’s
In the middle stages, people with Alzheimer’s may have more or less the mental and social skills of a young child. While it’s fine to do the old standbys - things like listening to music or watching movies together, those are somewhat passive. With a little thought you can find more active ways to spend time together, such as giving the person “props” the two of you play with together. The key words here are “play” and “together.”
For seven years I was a caregiver for my beloved Romanian soul mate of 30 years. When he was in the mid-stage of dementia he loved stuffed animals and I made up games to play with him. Once I sat beside him with a stuffed puppy on my lap, then said “beep” when I pressed its nose. As I’d hoped, he thought the puppy said it. Then he pressed the nose rapidly and I kept up, saying “beep” each time. We both burst out into laughter and his aide told me he was in an unusually good mood the whole rest of the day.
People in the Latest Stages of the Disease
Ms. Snow, in partnership with Senior Helpers, an in-home care company, developed “Senior Gems,” that classifies dementia patients into six categories, each named after a gem.
The “Gems” table shows the basic characteristics of people at each level and provides tips for interacting with them. Pearls are at the latest stage of the disease.
According to the Gems table “Pearls:
“like pleasant sounds and familiar voices. They also like to feel warm and comfortable. They may be aware of the world around them for short periods only. They hardly move and have problems swallowing. For people in this category it’s beneficial to read or talk to them about good memories They might not understand your words, but your voice will be soothing. You might also bring a new extra soft blanket or sweater for them to wrap up in or brush their hair and apply lotion to their skin.”End of Part 1, to continue reading go here -- Can People With Alzheimer’ Experience Joy? Part 2
Marie Marley is the author of the uplifting, award-winning book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. To learn more about Marie and to accesss her wealth of information for caregivers go to Come Back Early Today.
A much shorter version of this article appeared on the Huffington Post.
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