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Pa. groups work to ease burden on unpaid health caregivers

Guests listen to a presentation by Kim Campbell, widow of singer Glen Campbell, as she speaks about Alzheimer's disease during the Lehigh Valley Caregivers Retreat at DeSales University on Monday, July 30, 2018. Glen Campbell died in 2017 of Alzheimer's disease. His decline was documented in a documentary of his final tour. (Harry Fisher/첥Ƶ)
Harry Fisher / 첥Ƶ
Guests listen to a presentation by Kim Campbell, widow of singer Glen Campbell, as she speaks about Alzheimer’s disease during the Lehigh Valley Caregivers Retreat at DeSales University on Monday, July 30, 2018. Glen Campbell died in 2017 of Alzheimer’s disease. His decline was documented in a documentary of his final tour. (Harry Fisher/첥Ƶ)
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With nearly half a million Pennsylvanians engaging in unpaid dementia caregiving, amounting to an expected $360 billion in unpaid labor nationally in 2024, the job is bound to be stressful on top of a caregiver’s other responsibilities.

Many are raising children and working full-time, and a 2024 report from the Alzheimer’s Association shows that dementia caregivers take off work and leave the workforce at a higher rate than any other type of caregiver.

Support resources exist, but they can be difficult to access — especially when caregivers are already strapped for time and cash. Organizations around Pennsylvania are working to ease access burdens to these resources so that, ultimately, the burden of caregiving is lifted, too.

“Dementia is a terminal illness; we don’t have great treatment for it, and it hugely impacts families,” said Lyn Weinberg, a geriatrician, division director for geriatrics at Allegheny Health Network and medical director of the Aging Brain Care program.

“We haven’t until now had structured resources for families. They’ve had to find them on their own, which is exhausting, and sometimes impossible.”

State support

At the state level, there’s a growing recognition of need to help dementia patients and caregivers, and increasing support for access to resources.

The Pennsylvania Senate Aging and Youth Committee on June 4 unanimously passed a bill to establish an Alzheimer’s Dementia and Related Disorders Office, as well as a Related Disorders Advisory Committee, something 27 states and the District of Columbia are already funding, according to an Alzheimer’s Association spokesperson.

An Alzheimer’s office would be expected to secure federal funding and to leverage additional resources to better support those in Pennsylvania with dementia and their caregivers.

“I was pleased with the recent show of bipartisan support for Senate Bill 840 as that legislation passed out of the Senate Aging and Youth Committee,” said Sen. Judy Ward, R-Blair/Fulton, and chair of the Aging and Youth Committee, via email statement. “That support reflects the tremendous work that has been done with stakeholders to create a bill that truly will make a difference in the lives of so many Pennsylvanians.

“As our population continues to age, we need to continue to advance policy that helps our older adults age with dignity and get the care they need when facing Alzheimer’s, dementia, and other cognitive health challenges,” she added.

In addition, Gov. Josh Shapiro introduced the “Aging Our Way PA” program in his 2024-25 budget proposal, a 10-year plan that includes supporting caregivers emotionally and financially. The proposal is expected to be voted on in July.

“Caregivers face a variety of challenges while caring for the person under their charge and dealing with their own personal issues,” said Department of Aging spokesperson Jack Eilber in an email statement.

Part of the proposal includes $2.95 million specifically for Pennsylvania’s caregivers, paid and unpaid. According to Eilber, $1.5 million of that is reserved for addressing the workforce crisis, and $1.45 million for direct caregiver support such as trainings, toolkits and connection to resources.

Resources for caregivers already exist in Allegheny County. And the Alzheimer’s Association of Greater Pittsburgh recently set up a 24/7 hotline for anyone seeking resources. The number is 1-800-272-3900.

Over the phone, advocates can help set up a care plan, answer scientific questions about the disease and connect to resources in their area.

“My hope is that when a caregiver does decide to reach out, there is no wrong way for them to do so,” said Clayton Jacobs, executive director of the Alzheimer’s Association of Greater Pittsburgh.

Resources going local

Although the goal is to bolster Alzheimer’s resources over time, the state and counties already have caregiver resources in place. Through the Department of Aging, and administered through the Allegheny County Department of Human Services Area Agency on Aging, the Caregiver Support Program has been a point of contact for years.

Those who want to participate can call 412-350-5460. Participants will be assigned a care manager through one of the three organizations that the department contracts with: Wesley Family Services, FamilyLinks and Lifespan.

A care manager will assess the caregiver and family’s needs and create a care plan. Payment is on a sliding scale reimbursement model. Caregivers can be reimbursed for supplies they buy out of their own pocket that they use in their role. Counseling and respite services are also provided.

“Our goal in this program is to alleviate stress,” said Russell Goralczyk, director for the Older Adult Support Bureau for the Area Agency on Aging and overseer of its support program. “Caregiving, although extremely rewarding, can be very demanding and overwhelming. Our goal is to help them thrive in their role.”

Goralczyk said there are about 400 caregivers enrolled in the program in Allegheny County, and the department provides many “soft services” to those not enrolled as well — such as trainings on self-care, communication and stress reduction.

The toll of the pandemic

He acknowledged that staffing shortages and cost both pose future challenges.

“The shortage of in-home workers has definitely been a challenge post-COVID,” he said. “The Caregiver Support Program is growing in interest and population, as people live longer. There’s going to be more of a need.”

According to the Census Bureau, those over the age of 65 made up more than a fifth of Allegheny County’s total population in 2023, higher than the national average. Pennsylvania has the 10th-highest elderly population in the country.

Weinberg has seen the strain that can impact those trying to help. “Caregivers are really facing burnout and exhaustion,” she said. “They don’t get a lot of information upfront about dementia.”

The Aging Brain Care program began in January 2023, supported by a grant from the Hillman Foundation. It’s now being funded by Allegheny Health Network. Participants must be existing AHN patients.

Caregiver stress can hinder the ability to access resources.

“Some of our caregivers are so stressed that they don’t have the bandwidth to do one more phone call,” Weinberg said. “We’ve learned there seems to be a sweet spot for getting people engaged in care. Earlier in the diagnosis is better, before they get into crisis mode.”

Post-COVID, the price of goods has also increased, which is why Goralczyk sees the Caregiver Support Program as particularly helpful.

“If someone is spending $200 — $300 for supplies, we can reimburse for costs,” said Goralczyk.

And not only are people living longer, but the opioid epidemic continues to ravage families, creating caregiving gaps. Goralczyk said the program is seeing an uptick of grandparents taking care of grandkids whose parents have passed away.

A multidisciplinary approach

At AHN, participants are enrolled as a caregiver-patient dyad and bolstered by an interdisciplinary team. To date, there are 105 patient-caregiver pairs enrolled in the Aging Brain Care program.

A social worker, behavioral health therapist and caregiver coach make up the support team and tackle the unique challenges of both being a caregiver and struggling with dementia. Therapy is provided around anticipatory grief, financial stress and family stressors.

“We are really addressing the emotional needs of caregivers, so they can serve their loved ones more effectively and also take care of themselves,” Weinberg said. “We empower caregivers to put some of that in-home care in place so they can take care of their own health.”

That might include supplies and help for daily activities like showering or sorting out medication needs.

The team is meant to be interdisciplinary to tackle the complex nature of a disease like Alzheimer’s. “We know that behavioral health clinicians are difficult to access already, so we’ve built that into our team,” said Weinberg.

“And behavior challenges add a layer of complexity to trying to bring services in,” she added. “You might have a person who is very fearful of non-family members coming into the home. That can be very tough.”

What’s next?

Looking toward the future, the Aging Brain Care program is working to incorporate people with different insurance coverage.

“This has been a work in progress,” said Weinberg. “We’re growing. We recently brought in a new caregiver coach, so we’re hoping to continue to expand.”

As more people are expected to develop dementia in the coming years, increased demand for services may tip the scale toward increased supply — that’s the hope, anyway, for people like Weinberg, Goralczyk and Jacobs.

Although not user-friendly for many older people, technology may provide an opportunity to bring resources closer to families and caregivers, as with AI scheduling appointments, telehealth or online conversations with providers.

And while services are ramping up, so is research into Alzheimer’s.

“I’m excited for the new era we’re entering in,” said Jacobs. “We’re on the precipice of seeing things like blood biomarkers for diagnosis. Researchers are incredibly optimistic.”

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