How nonprofits are helping dementia sufferers in Arizona

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Arizona is known for a warmer climate that’s attractive to professionals and retirees, but experts believe it will soon also be known for having the largest population with dementia.

Dementia is an insidious problem in Arizona, an aging state.

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

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

“It will touch us all. Our friends, our loved ones. More and more of the people we know are getting older,” said Dr. Gill Hamilton, who teaches courses on dementia at colleges in the Phoenix area. “This isn’t going to be something that’s going to happen to anyone that we’ve heard about. The predictions assume that we will all know people. That will be part of our lives.”

Arizona’s nonprofit organizations are preparing to meet looming public health threats while meeting the needs of the present. Some have received funding through donations from The Arizona Republic’s Season for Sharing campaign.

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

  • The Hospice of the Valley received $15,000 to provide supportive palliative care services and specialized sensory activities to improve the quality of life for people with dementia.
  • Banner Alzheimer’s Foundation received $15,000 for Banner Alzheimer’s Institute family and community support services.
  • The Sun Health Foundation received $7,500 to support caregivers.
  • Scottsdale Arts received $7,500 for its Memory Lounge program, which provides virtual opportunities for creative learning in old age for people living with dementia.

Taking care of the “stigmatized”.

The Hospice of the Valley received a call from an 80-year-old Phoenix resident a few months ago. He told the end-of-life caregiver he was recently diagnosed with dementia and had no one to care for him.

A hospice team went to his home, which was unkempt and smelled of spoiled food. The patient also tested positive for COVID-19.

“We helped him. We found a nephew who lived in the east and we got him to come here. We found them a place to live,” said Hamilton, who serves as the hospice’s medical director.

“We got someone to come out and do their chest X-ray,” she added. “I actually visited him (before Christmas) and he’s doing great.”

The Hospice of the Valley has nine residential nursing homes located throughout the Valley. Last year, the hospice cared for around 150 dementia patients who previously lived alone.

The Hospice of the Valley also offers home care, one of the few in metro Phoenix to offer this service. Last year she cared for 863 dementia patients at home.

“Everything 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 those people were fewer, so it’s more about if we know better, we do better. And so it is about sharing information. Although the person has changed because there are some brain changes, they are still essentially the same. Are you still there.”

But even for those receiving care, a serious notion lingers: there is no cure for dementia. The medical community has yet to find a clinical cure for neurocognitive disorders.

The Banner Alzheimer’s Institute, which has memory centers in Phoenix and Tucson, conducts scientific research to find cures for diseases that cause dementia, such as Alzheimer’s disease. In collaboration with its biomedical insights, the institute also uses research to develop new models and standards for the care of people and families with dementia.

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

High touch, low tech

Because there is no medical cure to eradicate dementia, non-medical support is often the most needed care for individuals and their families.

Banner Alzheimer’s Institute offers more than a dozen support groups created solely to meet different needs. There is a support group for family carers with children, one for male carers and also an early stage support group.

“It’s important to see a doctor to see if there’s anything that could be put in place for memory loss to get a clear diagnosis. Once there’s a clear diagnosis, see if there’s a drug that can slow the progression,” Nisson said. “And then, really, the most important thing is to meet those non-medical needs. Educate yourself about the disease, get support.”

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

In addition to self-help groups, the Banner Alzheimer’s Institute also offers life enrichment and educational courses. The courses convey concrete strategies for dealing with difficult situations and expectations in the course of the illness.

The classes, which are held virtually at regular intervals, have an average of around 30 participants. The support groups are smaller, attracting eight to 20 participants.

A few nurses run some of the courses and support groups. Most other programs are supported and facilitated by social workers.

In March, the institute also launched a podcast, which has had more than 18,000 streams to date.

“There are people who have expertise in this area. This is how (a person with dementia) can listen. But it also just gently guides family members when they really get into a sticky situation and need some expertise on how to handle it themselves. We can really help them solve problems, fix bugs and hopefully reduce their daily stress.”

The institute currently offers all non-medical services free of charge.

Hospice of the Valley is also filling the needs gap with its four-month supportive care program, which cares for people with dementia before they enter hospice.

The program is free for anyone who needs assistance and is not limited to those 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 drugs that are very high-tech at this point.”

The Hospice of the Valley will open its new campus for dementia care and education in Phoenix this year.

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

Hospice of the Valley aims to prepare the workforce for the needs of dementia. The plan is to train 200 nursing assistants and social workers as well as 200 high school and university students per year. Nearly 1,000 physicians and 3,000 parishioners are being trained on campus, according to Hospice of the Valley.

“You have a need, and then you fix it,” Gallagher said. “When this disease starts moving through your brain, you don’t have the ability to do it. In this way, then, we begin to cleverly anticipate what the person needs so that we can really help them live and optimize their well-being. to be all the way until they breathe their last.”

How to donate to Season for Sharing

With the help of Republic readers, Season for Sharing has raised and gifted more than $70 million to Arizona nonprofits over the past 28 years. Help us continue to help 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 the link in the text message.
  • Go online to facebook.com/seasonforsharing and look for the post DONATE HERE.
  • Attach coupon to page 4A of The Arizona Republic, complete and mail to PO Box 29250, Phoenix AZ 85038-9250.
  • Scan the QR code with your smartphone camera, click the link to donate.

Where is the money going?

When you donate to Season for Sharing, you help nonprofit organizations that support education, feed the hungry and help families in need. The Republic assumes all administrative costs, so that 100% of donations go back to the community.

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