How to live with dementia

MEGAN BASHAM, HOST: Coming up next on The World and Everything in It: caring for dementia patients. 

You know Alzheimer’s as the most common form of dementia. The disease encompasses a wide variety of conditions that lead to a decline in memory, language, and, eventually, physical abilities. More than 5 million elderly Americans live with these conditions.

NICK EICHER, HOST: And people in the know predict that number will triple by 2050 because of population growth. That’s a daunting prediction for both the aging and those who care for them.

So far there is no drug that can cure dementia, so researchers are developing more and more non-pharmaceutical treatments. WORLD reporter Sarah Schweinsberg now on the promise some of these treatments hold.

SARAH SCHWEINSBERG, REPORTER: Doctors diagnosed 80-year-old Alice Gibbons with dementia six years ago. Now, Gibbons spends most of her time in her home sitting in a recliner watching TV.  

[SOUND OF TV]

Caring for a person with dementia is hard work. Alice Gibbons’s daughter, Karie, is one of her caregivers.

KARIE: Her life right now. It’s get up in her chair, watch TV, eat, you know, go to the bathroom, go to bed. That’s all she does. 

That routine can leave Alice easily irritated. But Karie Gibbons says visits from county human services volunteer Jacki Lauritzen help. Lauritzen visits Alice twice a week so Karie can run errands.  

ALICE: Hi, friend, 

LAURITZEN: Hi, sweet lady. 

Alice Gibbons smiles up from her recliner when Lauritzen walks in. 

LAURITZEN: You’re silly. 

ALICE: No, I’m not. 

LAURITZEN: Yeah you are.

Lauritzen says she used to struggle to figure out what activities to do with a dementia patient like Alice. An activity that’s too difficult or too easy can leave both the patient and the caregiver frustrated. 

LAURITZEN: They do tend to get upset sometimes not at you, but to you, you know, cause they try to do something and they can’t and it makes them mad.

But now, Laurtizen has a go-to set of activities she knows Alice will enjoy.  

LAURITZEN: Last week we did a puzzle. We color, I have an adult coloring book that has cats. 

They also play dice, listen to music, and sing. 

LAURITZEN: I try to keep the humor, try to relate her to stuff that she’s known. 

These activities are a part of a therapeutic approach for people with dementia called the Tailored Activity Program or TAP. An occupational therapist designs activities that match a dementia patient’s abilities and their interests. 

For Alice Gibbons, coloring, games, and music connect with who she was before dementia: A librarian who loved playing with children. 

Dr. Laura Gitlin is dean of the College of Nursing and Health Professions at Drexel University in Philadelphia. She and her colleagues developed the program a decade ago. 

GITLIN: We kept hearing over and over again, you know, my mom just sits on the sofa and I don’t know what to do with her, you know, or, you know, my, my husband, I don’t want to take him out with me because you know, he can get agitated. And so I just, you know, keep him at home.

A 2017 study showed that a majority of patients who participate in TAP sessions reported fewer and less severe negative feelings. Feelings like apathy, agitation, and aggression. 

Now, as more Americans are diagnosed with dementia, TAP and other non-medication based treatments are gaining popularity. Options include music therapy, group dementia meetings, exercise, and reminiscence therapy. That’s where caregivers use photos and props to help jog a patient’s memory. 

These therapies don’t cure dementia, but Dr. Gitlin says coupled with medications, they can improve the lifestyle of both patients and caregivers. 

GITLIN: Families get a diagnosis of dementia and they are routinely told, you know, listen, there’s nothing that can be done. It’s really important that we focus on how we can help people maintain the best quality of life they can for as long as they can. And in our country, the focus has been so much on cure versus care that we have added extra burden to families. 

Dr. Marwan Sabbagh directs the Cleveland Clinic’s Lou Ruvo Center for Brain Health in Las Vegas. He says there’s also a growing body of research that non-pharmaceutical approaches can help delay the onset of dementia after symptoms start showing up. 

SABBAGH: There is now sufficient body of scientific evidence to recommend, brain games, brain stimulation et cetera, uh, blood pressure management, physical exercise. So this pendulum is swung toward lifestyle targeted interventions. 

And Dr. Sabbagh predicts that even when there are better drugs to treat Alzheimer’s and dementia, lifestyle and brain therapy interventions will still be necessary. 

SABBAGH: The future of Alzheimer’s, either prevention or treatment will be a multi-targeted kind of a chemotherapy approach. It will not be one thing. It will be, you know, you’ll take your memory pills, you’ll take, do your exercise, there’ll be like 10 things you’ll have to do to manage your brain over the time.

Karrie Gibbons knows no drug or therapy will change the outcome of her mom’s dementia. But thanks to some dice, puzzles, and songs, their remaining time together can be that much sweeter. 

SINGING WITH ALICE: You are my sunshine, my only sunshine, you make me happy when skies are gray…

For WORLD, I’m Sarah Schweinsberg in Ogden, Utah.

(Photo/Sarah Schweinsberg)

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