Help is out there for caregivers of people with Alzheimer's, dementia

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November marks both Alzheimer’s Awareness and Family Caregivers Months, with the public recognizing the millions of people who care for loved ones with the disease.

But according to the Alzheimer’s Association, out of 16 million family caregivers, almost 60% suffer from high emotional stress, and 40% suffer from depression.

In recognition of these occasions, Iora Primary Care, a Phoenix doctor’s office for seniors on Medicare, announced a series of educational community talks for November to share disease education and prevention measures, which aims at providing a extra care and support to caregivers and those suffering from Alzheimer’s.

Classes were available in Colorado, Georgia and Washington. None appeared to be on schedule for Arizona, but future dates will be posted to yourvalley.net.

“As a progressive disease which slowly, yet inevitably worsens over time, Alzheimer’s takes a toll on both those suffering from the disease, as well as their caregivers,” said Neil Patel, Northeast Medical Director of Iora Primary Care. “At Iora, our care is built on genuine relationships. Taking the time to ensure we can support our patients’ needs, including dealing with this disease by providing individual and educational support, is just one of the ways we work to treat the whole person and address all of their needs.”

Up in north Phoenix, Dr. Sahar Zuberi is one of the lead physicians at Iora’s Deer Valley location. She says signs a caregiver might be depressed or stressed include if they say they feel hopeless, or become irritable and argumentative over small things, or not being able to sleep or eat. They may even develop physical problems like headaches or stomach pains.

“We understand how difficult it is to care for someone with dementia. We don’t want caregivers to feel like they’re burning the candle at both ends,” Dr. Zuberi said. “This is why we set out to be a different kind of doctor’s office in order to combat caregiver burnout. In addition to community resources, we’re always willing to lend an ear or a shoulder to cry on. A caregiver’s health and wellbeing is just as important to us as our patients’.”

Dr. Zuberi said it can be a huge burden to take care of someone with dementia while trying to understand their illness. She added caregivers might talk about feeling guilty, like if they do things for themselves. She said that can lead to caregivers becoming angry or resentful.

“A lot of times there’s a lot of unrealistic expectations about the patient’s prognosis, and they think they can cure someone’s dementia,” she said. “And they may hold themselves responsible when their patient’s health doesn’t improve.”

People with dementia may have trouble doing ordinary tasks, from cooking to dressing, and from shopping to using the restroom.

Dementia can also bring about financial burdens, as Dr. Zuberi explains.

“Say if the patient is a husband, he’s been diagnosed with Alzheimer’s and he was the primary breadwinner. And he’s unable to work anymore,” Dr. Zuberi said. “As a result his wife is probably having to take care of him, but now she is having to find work as well. Maybe they need a higher level of care but they can’t afford to something like that. Our team really helps identify any of those issues, provide resources.”

Dr. Zuberi said the most important thing a caregiver can do is to take time for themselves.

“If you are unable to take care of yourself, you’re not going to be able to make time for anyone else, especially the person you are taking care of,” she said. “It’s really important to have a good understanding of the disease. The progression, the symptoms, how to manage those symptoms. If there aren’t any surprises, then I feel like overall you’ll do a better job of handling anything that comes along.”

Iora Primary Care takes the time to provide resources not only for patients, but caregivers as well. They offer classes including chair yoga, tai chi, and painting. All and more are available if a caregiver needs a break or to keep patients busy.

“It’s very important for a caregiver to understand that what’s happening to the patient is completely out of their control,” Dr. Zuberi said. “Especially with the disease like dementia, unfortunately we can’t cure it. All we can do is potentially slow down the symptoms; we can slow down the progression. But caregivers should never hold themselves responsible for what happens.”

As for family caregiving, grandparents are a group among those caring for someone, and it’s not their spouses. Instead, more than 2 million grandparents are responsible for most of the basic care of grandchildren under 18, according to American Community Survey estimates from 2018.

Of those, over 1.3 million grandparents are in the labor force, while just over 1 million are not.

In 2018, President Donald Trump signed a proclamation for Family Caregivers Month. It states nearly 44 million caregivers each year assist loved ones with various tasks, like eating, bathing, dressing, childcare, finances and transportation.

Mr. Trump also approved the RAISE Family Caregivers Act that created an advisory council to address topics like respite services and options, workplace flexibility, and financial security. The bill purports to help people navigate the healthcare system and produce further recommendations for supporting family caregivers.

For those around the globe, the Caregiver Action Network has a free Caregiver Help Desk. Call 855-227-3640 from 8 a.m-7 p.m. EST or visit caregiveraction.org/resources/caregiver-statistics for options to email or chat online.

The Care Support Team, staffed by caregiving experts, can help people find the right information they need to help navigate complex caregiving challenges.

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