A guide to aid and resources for Alzheimer’s caregivers

Kat Hartley has been acquainted since age 6 with the rigors of caring for people afflicted with Alzheimer’s disease.

Several members of her family have suffered from Alzheimer’s and other diseases that sap cognitive ability. She knows firsthand how frustrating it can be trying to track down resources as an Alzheimer’s caregiver.

Now Hartley puts that experience to use as project manager for the Healthy Brains Initiative at the Cleveland Clinic Lou Ruvo Center for Brain Health and as a family care partner and Alzheimer’s advocate for the Southern Nevada regional office of the Alzheimer’s Association.

According to the association, Nevada is expected to see a 30 percent increase from 2020 to 2025 in people 65 and older with Alzheimer’s. Not surprisingly, that increase has prompted a rise in family members and others who serve as unpaid caregivers — about 84,000 in 2022, who collectively have provided about 141 million hours of unpaid care.

For anyone navigating the arduous journey as an Alzheimer’s caregiver, we’ve compiled a list of help available from local and national providers.

Medical basics

“Navigating the Dementia Journey,” a publication of Cleveland Clinic Nevada on behalf of Dementia Friendly Nevada, notes that while Alzheimer’s disease is the most common type of dementia, dementia-associated diseases also include vascular disease, Lewy body dementia and frontotemporal dementia.

Several websites can provide general information about Alzheimer’s and dementia. Medically reliable online sources of information include the Alzheimer’s Association and Alzheimers.gov, which is managed by the National Institute on Aging. Hartley also suggests the Ruvo Center and the National Institute on Aging.

Also, don’t forget your own primary care doctor, who can be in a position to notice possible cognitive changes in patients over time and would be able to discuss next steps and options with patients and caregivers.

“You don’t necessarily need to start with a neurologist,” said Phil Kalsman, community executive director of the Alzheimer Association’s Southern Nevada regional office. “If you go to your primary care, they can point you in the right direction.”

The first step is “getting an evaluation and diagnosis,” said Dr. Dylan Wint, director of the Cleveland Clinic Lou Ruvo Center for Brain Health, and a primary care provider may be able to separate dementia-related conditions from “conditions (that) may not be because of degenerative brain disease.”

For example, prescription medications are “a big offender, especially ones they’ve been on for a long time,” Wint said.

Searchable resource directories

Several organizations offer directories of helpful programs and agencies, as well as searchable databases on just about any Alzheimer’s-related topic.

“Navigating the Dementia Journey” offers numerous sources to help. Similarly, the Alzheimer’s Association regional office website offers a searchable-by-topic directory of information. The organization also maintains a 24/7 Helpline (800-272-3900) staffed by live operators who can access local sources of help.

Information about specific sorts of help also can be obtained through Nevada 211 and the Care Connection Resource Center. Hartley also recommends Nevada Senior Services, which offers information about several types of resources.

Help for caregivers

Alzheimer’s also affects spouses, adult children and loved ones who may be thrust into caregiver roles.

In 2021, according to the Alzheimer’s Association, about 54 percent of Nevada caregivers had chronic health conditions, 31 percent experienced depression and about 19 percent were themselves in poor physical health.

Fortunately, a number of agencies support programs aimed at assisting caregivers. The Cleveland Clinic/Dementia Friendly Nevada guide recommends visiting websites of AARP, the Alzheimer’s Association and other national groups that offer caregiver information and resource links.

Useful locally are the Nevada Care Connection and Helping Hands of Vegas Valley, which, like the Alzheimer’s Association, can offer respite care vouchers for caregivers. Nevada Senior Services offers adult day care and other programs of interest to caregivers.

Support groups and respite programs are vital in helping to prevent caregiver burnout. “I’d say almost universally (caregivers) find them helpful,” Wint said.

Support groups can be accessed through the Alzheimer’s Association’s webpage. The association’s roster of groups includes well-established support groups facilitated by former caregivers, Kalsman said.

Legal and financial advice

At some point, a caregiver may face legal and financial decisions involving, for example, nursing home placement or taking care of wills, powers of attorney and other legal matters.

Elder law now is recognized as a legal specialty, and the State Bar of Nevada offers a lawyer search feature on its website that includes certified elder law attorneys.

However, Laura Stubberud, an attorney who works with families affected by Alzheimer’s and similar diseases, said an attorney well-versed in estate planning also can deal with legal issues related to Alzheimer’s.

Still, not all may be proficient in, say, navigating the ins and outs of Medicaid or specific issues regarding nursing home placement. So, she recommends asking, “Do you have experience with financial and (Medicaid) planning for people who have Alzheimer’s or dementia?”

Same for financial planners, Stubberud said. “Not all financial planners know what needs to be done.”

Ideally, estate planning will take place at, or even before, an Alzheimer’s diagnosis.

“A lot of people put that off,” Stubberud said. “From my perspective with clients, we hope they call when they have the initial diagnosis and can make decisions on their own behalf. That’s what prevents a guardianship situation.”

Wint agrees that legal issues are “much easier to resolve” if the patient can take part in the discussion. “Once someone loses capacity, that’s when it really becomes difficult,” he said.

Medicare and Medicaid

Medicare is a government health insurance for seniors. “It’s not a needs-based program,” Stubberud said, and doesn’t cover, for example, long-term nursing home care or long-term assisted living services.

In contrast, Medicaid may cover such costs for some lower-income seniors. Unlike Medicare, eligibility for Medicaid is based on income and need and may — depending on income and assets — provide for such services as long-term nursing home care.

Stubberud said services provided to qualified persons under Medicaid also may include a variety of home and community-based services. Again, Stubberud said, “It’s very important to talk to an attorney who’s knowledgeable in these areas.”

Living facilities

For some caregivers, the right option for a loved one might eventually involve placement in a nursing home or the involvement of another sort of care facility.

The answer is different for every family, Wint said, but the greatest fear among people with Alzheimer’s is loss of independence and having to leave their home.

Stubberud recommends first consulting an attorney to discuss options, finances and the potential eligibility of a loved one for Medicaid.

If a nursing home is the answer, “We recommend that families tour a few places before considering a placement,” Kalsman said. Medicare offers checklists and advice for comparing nursing homes and other facilities.

But the solution doesn’t have to be a nursing home, Wint said. For example, Nevada Senior Services offers adult day care, Stubberud said.

Whatever the option, “keeping folks engaged is really important,” Wint said, and day care programs and similar options can help to serve that purpose.

For veterans

The Cleveland Clinic/Dementia Friendly Nevada guide notes that veterans also may be eligible for services through the Department of Veterans Affairs (844-698-2311) and that caregiver support also may be offered.

Other sources

It’s also worth reaching out to your insurance provider to explore services that they might cover under a Medicare supplement or Medicare Advantage plan, Stubberud said.

“People might be surprised,” she said. “A lot of insurance companies offer some sort of support services” that can augment care options for persons with Alzlheimer’s or dementia.