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'It's going to touch all of us': What groups are doing to help people with dementia

Volunteer comforting dementia patient

Jan. 16, 2022
by Neetish Basnet

Arizona is known for a warmer climate attractive to late-career workers and retirees, but experts believe it will soon also be known for having the largest population of people with dementia.

Dementia is a creeping problem in Arizona, an aging state.

Eighteen percent of the state is 65 and older. The Alzheimer's Association estimates about 150,000 Arizonans currently have Alzheimer's disease. By 2025, the number is anticipated to increase by 33%.

The number of people with dementia, a cognitive condition, will be even higher.

"It's going to touch all of us. Our friends, our loved ones. More people we know are growing older," said Dr. Gill Hamilton, who teaches courses on dementia at Phoenix-area colleges. "This is not going to be something that happens to somebody we heard of. The predictions are that we're all going to know people. This is going to be part of our lives."

Arizona nonprofits are gearing up to face the impending public health perils while fulfilling present needs. Several have received funding via The Arizona Republic's Season for Sharing campaign donations.

Last year, the Republic campaign raised $2.1 million and provided $45,000 in grants to organizations involved in dementia caregiving, including:

  • Hospice of the Valley received $15,000 to provide supportive palliative care services and special sensory activities to enhance quality of life of people with dementia.
  • Banner Alzheimer's Foundation received $15,000 for the Banner Alzheimer’s Institute Family and Community Support services.
  • Sun Health Foundation received $7,500 that supported caregivers.
  • Scottsdale Arts received $7,500 for its Memory Lounge program that provides virtual creative aging learning opportunities for people with dementia.

Care for the 'stigmatized'

Hospice of the Valley received a call from an 80-year-old Phoenix resident a couple of months ago. He told the end-of-life care provider he was recently diagnosed with dementia and has no one to look after him.

A team from the hospice went to his house, which was unkept and smelled of rotten food. The patient tested positive for COVID-19, as well.

"We helped him. We found a nephew who lived back East, and we got him to come out here. We found them a place to stay," said Hamilton, who serves as the hospice's medical director.

"We got somebody to come out and do his chest X-ray," she added. "I actually went to see him (before Christmas), and he is doing great."

"Anything that has to do with the brain, the mind is stigmatized, isn't it?" said Dr. Maribeth Gallagher, director of the dementia program at Hospice of the Valley. "Almost as if these folks are less, so it's more about when we know better, we do better. And so it's about sharing information. Although the person's changed because there are some brain changes, they're still essentially the same. They're still there."

But even for those who receive care, a grave notion persists: There is no cure for dementia. The medical community is yet to come up with a clinical cure for neurocognitive disorder.

Banner Alzheimer's Institute, which has memory centers in Phoenix and Tucson, is conducting scientific research to find cures for dementia-causing diseases like Alzheimer's disease. Collaborating with its biomedical findings, the institute also uses research to set up new models and standards of care for people and families who are living with dementia.

"Non-medical support is really the lifeline and can be a lifesaver," said Lori Nisson, family and community services director at Banner Alzheimer's Institute. "It can really help people live a better quality of life with a disease like Alzheimer's disease."

High touch, low tech

As no medical cure exists to eradicate dementia, nonmedical support is often the most needed care for individuals and their families.

Banner Alzheimer's Institute offers more than a dozen support groups exclusively created for different needs. There's a support group for family caregivers with children, one for male caregivers and also an early-stage support group.

"It's critical to see a medical professional, to see if there's something that could be rolled out for memory loss, to get a clear diagnosis. Once there's a clear diagnosis, see if there's a medication that can slow down progression," Nisson said. "And then the most important part, really, is to get those nonmedical needs met. Get education about the disease, get support."

Not having awareness and education about dementia could be detrimental to overall wellness, Nisson said.

Apart from support groups, Banner Alzheimer's Institute also offers life enrichment and educational classes. The classes teach concrete strategies for managing difficult situations and expectations as the condition progresses.

The classes, conducted virtually in regular intervals, average about 30 participants. The support groups are smaller which draws in eight to 20 participants.

A couple of nurse practitioners run a few of the classes and support groups. A majority of other programs are supported and facilitated by social workers.

In March, the institute also launched a podcast, which has so far gained more than 18,000 streams.

"There are people who have expertise in this area. So (a person with dementia) can listen. But also it just gently guides family members when they really get into a tough situation and need some expertise about how to manage it for themselves. We can really help them problem solve, troubleshoot and, hopefully, reduce their level of stress kind of on a daily basis."

The institute currently provides all the nonmedical care free of cost.

Hospice of the Valley is also closing the needs gap with its Supportive Care for Dementia Program that takes care of people living with every stage of dementia from diagnosis on — not just those in need of hospice care.

Last year alone, this unique in-home service cared for 863 dementia patients living at home with their caregivers and hundreds more who were living alone.

The program is free to anybody who needs support and not limited to people who can afford the service.

Hamilton said Hospice of the Valley's free dementia program currently serves 600 patients.

"We have a phrase, 'dementia care is high touch, not high tech,' " Gallagher said. "So it's high touch and unlike a lot of medicine, which is very high tech at this point."

Hospice of the Valley will open its new Dementia Care and Education Campus in Phoenix this year.

The campus will have an adult day care center for people with early or moderate dementia. Adjacent to it will be a child care center, built in part to introduce and destigmatize dementia to the larger community.

Hospice of the Valley aims to prepare the workforce for the needs in the field of dementia. The plan is to train 200 nursing assistants and social workers and 200 high schoolers and college students per year. According to Hospice of the Valley, almost 1,000 physicians and 3,000 community members will receive training at the campus.

"You have a need, and then you fix it," Gallagher said. "When this disease starts to move through your brain, you don't have the ability to do that. So this is how we start to skillfully anticipate what the person needs so that we can really help them to live and to optimize their well-being all the way until they draw their last breath."

How to Donate to Season for Sharing

With the help of Republic readers, Season for Sharing has raised and given away more than $70 million to Arizona nonprofits during the last 28 years. Help us continue helping our neighbors in need.

5 ways to give

  • Fill out the secure, online form at sharing.azcentral.com.
  • Text “SHARING” to 91-999 and click on the link in the text message.
  • Go online at facebook.com/seasonforsharing and look for the “DONATE HERE” post.
  • Clip the coupon on Page 4A of The Arizona Republic, fill it out and mail it to P.O. Box 29250, Phoenix AZ 85038-9250.
  • Scan the QR code with your smartphone camera, click on the link to donate.

Where does the money go?

When you give to Season for Sharing, you're helping nonprofits that support education, feed the hungry and help struggling families. The Republic pays all administrative costs, so 100% of donations go back to the community.