A licensed social worker shares her insight into how caregiving for someone with Alzheimer’s is uniquely difficult and how to ease the strain.
Alzheimer’s is an incurable disease that affects nearly 6 million people in the United States, according to the Alzheimer’s Association. But behind the management of this devastating condition — which causes memory loss, confusion, and eventually slowed motor skills — are countless caregivers who help patients maintain their livelihoods with dignity.
These caregivers face unique challenges, explained Melissa Katz, a Licensed Master Social Worker and the director of Caregiver Services and Grant Management at the Long Island Alzheimer’s and Dementia Center in New York.
Caring for an ill person is difficult no matter what, but those tending to a loved one with Alzheimer’s face the difficulty of having to manage medication schedules, doctor’s appointments, and the like while watching their loved one change as a person.
“You’re ultimately losing your loved one slowly, and I think that in itself is really difficult,” said Katz, who noted that those people caring for a spouse with Alzheimer’s are often called living widows because their loved ones are still living, but they’re not the people they used to be. “That can be extremely difficult and emotionally taxing,” she said.
By providing respite hours, Katz and her colleagues at the Alzheimer’s and Dementia Center help caregivers carve out time for themselves, so they can maintain their own health and social lives while caring for their loved one.
The Center also offers opportunities for caregivers to connect with peer caregivers who know their struggle firsthand through support groups. “The support groups are really so important because they allow the caregivers to share their experience with others and feel like they’re not alone,” she said.
Facing the future
In 2018, 16.3 million caregivers of Alzheimer’s and dementia patients worked 18.5 billion hours without pay, according to the Alzheimer’s Impact Movement. If they had been paid, their work would have been worth about $234 billion in that year alone.
Alzheimer’s is undoubtedly a costly disease, so it’s no surprise that questions about finances are among the most common that Katz receives from caregivers. “Families are always concerned about the cost of nursing homes and assisted living. They always have questions about what insurance covers and doesn’t cover, and I think education about their options is really important,” she said.
With Alzheimer’s, estate planning and the potential of using Medicaid are important because the disease duration is unpredictable. “We never know how long this disease can last — it can be three years or 20 years, or anything in between,” Katz said. Getting support from a local Alzheimer’s resource is ultimately another way caregivers can practice self-care. “It can be hard to put your trust in professionals,” she said, “but just knowing a loved one is safe sometimes gives caregivers that reassurance.”