Managing Dementia with Dignity

This piece was originally published in ABOUT the River Valley magazine.

Every month caregivers and professionals from around the region gather around a table at River Valley Hospice in Russellville for the Purple Angels Advocates meeting. Their mission, explains Rhonda Horton, development and community outreach officer for Arkansas Hospice, is to make “the River Valley a dementia-friendly community.”

Purple Angel Advocates is a global network upholding the principle that “people with dementia have an absolute right to enjoy a good quality of life and continued involvement in their local community so far as they are able and willing to do so.” The River Valley Chapter is the first of its kind in the state and is open to any healthcare professional or caregiver in the region.

Dementia is an umbrella term that includes both early and late onset dementia, Alzheimer’s disease, forms of Parkinson’s, and lesser-known illnesses such as Lewy body dementia, a rare progressive brain disorder that can present a range of symptoms including hallucinations, Parkinson’s-like symptoms such as balance problems, delusions and malfunctions of the autonomic nervous system.

Dementia affects more than 44 million people worldwide. Symptoms can start as early as the late 30s, but become increasingly common as people age. Dementia patients may move slowly, forget how to count money, or get confused about directions. As dementia progresses, those experiencing symptoms may need full-time care to navigate life in the community. Many people become stuck in their homes or in caregiving institutions, receiving very little human interaction, which can exacerbate the symptoms.

Their seclusion also leaves families and caregivers increasingly isolated, lonely, and ostracized from the larger community. There is no cure for dementia, but thanks to groups like Purple Angels, living with it can be more enjoyable for all involved.

Rhonda Horton says the path toward a dementia friendly community means educating restaurants, retailers, and even health care facilities on how to deal with people with dementia and how to support their caregivers. “It’s about how to treat then with respect and kindness and compassion,” says Horton.

“And patience,” adds caregiver Sherry Berger.

Berger knows about these misunderstandings and struggles first hand. Several years ago, her husband of many years began exhibiting behaviors suggesting some form of dementia. Many of those behaviors left her fearful and confused. “I woke up in the middle of the night with my husband trying to strangle me,” she recalls. Another time she woke up to him rubbing her cheek only to then slap her. She knew something was wrong, but it took her countless hours of research and doctor’s appointments to find a diagnosis. Even after the official series of diagnosis she found that many healthcare providers were not always properly educated on how to deal with the everyday symptoms of dementia, especially extreme cases like Lewy body dementia. If you take them into the hospital,” notes Berger, people will often prescribe medicine for psychiatric care, which is sometimes the worst thing you can do.”

It was Berger’s idea to start the local chapter. She read online about the network’s founder, Norms McNamara, and took the idea of starting a local chapter to a few people in the community who she knew could take the idea and run with it. “Taking care of my husband is a full time job,” she explains. So her schedule and availability depends on his needs at any given moment. But she tries to always make the meetings and speaks from personal experience as a full-time caregiver helping her spouse engage in the world.

For her it can mean educating clerks in stores when her husband takes extra time to count money. It means reaching out to another woman at church whose husband is dealing with Parkinson’s and educating the church members on how to understand his behavior and be supportive. In some cases she finds herself educating health professionals, reminding caregivers or even medical professionals that dementia patients are not always in control of their actions.

“The thing we have to understand as individuals is to help others understand things like that — the physical activity, the harmful things, they have no idea. There is something else in their head. What they are doing, when they tell you they see something, whatever it may be they are actually seeing that. It’s devastating,” she adds. When her husband realizes later what he’s done, “he’s just so upset,” she says.

She keeps business cards with her whenever she goes out and is proactive and reaching out to people, especially if her husband is with her. She always hands them out if she is standing next to another customer in line or whenever she approaches the person at the checkout. One side reads: River Valley Purple Angel Advocates with contact information for the director, Rhonda Horton. The back side reads: The person I am with has dementia. Please be patient. Thank you. “I try to hand them out as soon as I can,” Berger explains. “I shake their hand and it’s in my hand.” There are also cards for the dementia patients themselves so they can hand out cards to help make their outings more successful and increase understanding for others who may enter the store or public location.

Dr. Jason Ulsperger is an associate professor of sociology at Arkansas Tech University. He teaches Gerontology classes, and works closely with the River Valley Purple Angel Advocates chapter, including hosting a training seminar in his introduction to sociology class. The Purple Angels Advocates used the sociology class as a testing ground to see how they might use their educational trainings in stores around the area. “Research indicates people who have dementia are trying to maintain autonomy and dignity, and the most important things for them are to be able to interact with family and loved ones,” says Ulsperger. “Very close to the top of the list is religious services and close to the top is being able to shop and purchase things and going into retail stores,” he explains. He notes that with the aging of the baby boomers, 65 and up is fast becoming our largest segment of the population. “If it’s not these people who are personally dealing with those issues it’s their kids that are right behind them as caregivers who are going to be the caregivers managing these issues.” He notes that in our fast-paced world where many children are raised outside of multigenerational settings, it is important that we be proactive in educating people about dementia. “We can manage dementia with some dignity,” he adds.

So far the Advocates have taken their training to Pam’s Shoes in Russellville and worked with Area Agency on Aging and Inspirations Outpatient Counseling in Dardanelle. Once a business or institution has received the training they can put a sticker up in their window which lets other patients and caregivers know this is a dementia friendly space.

Several participants in the monthly meeting point out that dementia isn’t just about aging. Early onset can affect people as young as 40. They also note that creating a dementia friendly community isn’t just for the patient. It’s for the caregiver as well. “They are suffering in their homes,” says Berger adding, “the caregiver of any medical situation many times will die more often than the patient themselves.” Working with medical institutions, churches, and retail stores helps cut through that isolation allowing caregivers to more easily bring their relatives into the community, receiving that much needed community interaction that is literally life saving. The advocates group also serves as a support group of sort for caregivers. They can be among people who understand.

Nikki Dorn is the Director of Community Education at Johnson Regional Care, an outpatient mental health service for seniors. She leads an Alzheimer’s Support Group in Johnson County, and was attending her first meeting of Purple Angels that afternoon. She knows firsthand how important these trainings are, even for professionals. When asked why she got involved with the group she spoke from personal experience. “ I’ve been a therapist and social worker for several years, so I should know how to handle dementia situations. I handle them all the time. And then my mother in law had back surgery and this exacerbated Parkinson’s, which we didn’t know about. My husband I moved in with her after the surgery. I should have known how to handle it and I didn’t,” she explains. “I think using your own experience to help others make a big difference,” she adds.

Horton has a similar story. When her grandmother was diagnosed with dementia in the 1980s her family didn’t know how to help. “We had no clue,” she says. “No resources, no support groups, no internet. So we did the best we could. Had we known what we know now, we probably could have done a better job,” she says. “She was well taken care of, don’t get me wrong. But it was a struggle. And I would like to make that struggle less for other people.”

The River Valley Purple Angel Advocates meets the last Monday of every month at the Arkansas Hospice River Valley Home at 220 John Babbish Lane in Russellville. They plan to continue offering trainings to interested businesses, institutions, and civic groups around the region as well as offer support to those facing or caring for people with dementia. And the group has plans to grow. Berger says she’d love to see the community start what the global Purple Angels network calls a “dementia cafe. It’s two hours and they have snacks and they might play cards or have a dance or an activity.” Like all of the group’s outreach work, it’s a way to bring dementia patients and caregivers out of their houses and into the larger community in a way that is respectful of all involved.

You can find the group online via facebook at River Valley Purple Angel Advocates. They welcome inquires and requests for trainings. The trainings are free.

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