The details of Gene Hackman’s final days may never be known. But officials in Santa Fe, N.M., said on Friday that it appeared that Mr. Hackman, who had advanced Alzheimer’s as well as heart disease, had spent about a week alone after his wife, who was his caregiver, died at home of a rare viral infection.
Mr. Hackman, 95, may have been among the most famous movie stars of the 20th century, but his circumstances point toward a common challenge, according to experts in dementia and family caregiving. Like Mr. Hackman, about seven million Americans have Alzheimer’s, a type of dementia, and their family members, like his wife, Betsy Arakawa, 65, often help care for them as the disease progresses.
Laura N. Gitlin, a behavioral scientist at Drexel University who researches ways to support caregivers, said that when a patient is diagnosed with dementia, their loved ones rarely receive all the information they need.
“No one really explains to the family what the course of the disease may look like, how to prepare,” she said. “No one checks in on the caregiver.”
Knowing how to prepare for this situation can help improve the quality of life for not only patients, as they adjust to life with the disease, but also those who become devoted to their needs. Here are five tips to consider if you become a caregiver for a loved one with dementia.
Stay social.
People with dementia may feel uncomfortable or anxious around faces they don’t recognize, and stigma can lead some families to retreat from social life. But becoming reclusive can worsen the disease, said Dr. Helen Kales, a geriatric psychiatrist at the University of California, Davis. Isolation can accelerate cognitive decline and even puts caregivers at a higher risk for developing dementia themselves.
Dr. Kales therefore recommends that patients and their loved ones keep attending social events and trying new things. A couple she worked with started square dancing when one partner was in the early stages of dementia.
“If there are sort of fresh eyes for a situation and respite, that benefits everybody,” she said.
Set up a caregiving team.
Many primary caregivers feel reluctant to impose, and other family and friends may not know how to help, Dr. Gitlin said. To address this, she suggests holding a meeting and assigning roles. For example, a sibling might plan to call every morning or evening to check in. If the family member with dementia doesn’t answer, they could request a wellness check.
Nancy Goode, executive director of the Margaret Jo Hogg Alzheimer’s Outreach Center in Albany, Ga., which provides adult day care services and support for caregivers, said she tells caregivers to have at least five people they can call for help in an emergency or to regularly help. This could be a friend who might agree to visit every Wednesday for a few hours so the caregiver can run errands.
Seek help from an expert.
When a family member receives a dementia diagnosis, it’s difficult to foresee how the patient’s needs will change as the disease progresses, Dr. Gitlin said. So she recommends caregivers meet with an expert, like a geriatric social worker or a geriatric nurse practitioner, who can evaluate the safety of the patient’s home and how much support will be needed.
That sort of advice doesn’t just come along with the diagnosis, she said, so families have to seek it out and pay for it.
“It seems simple,” she said, “but nobody is given the knowledge and skills that are needed.”
Consider technology that can help monitor your loved one.
In-home cameras and motion sensors can help relatives who live far away check on family members with dementia. For example, a device can be affixed to a refrigerator that sounds an alarm if the door isn’t opened for a long time; another can be worn by patients and send an alert if they fall. It’s important to discuss privacy concerns and data security when considering such tools, which are becoming more advanced and widely available, Dr. Gitlin said.
“We don’t want to make this all about bells and whistles,” Dr. Kales said, “but I do think that we want to use technology as an adjunct to help people as they go on this journey.”
Take care of yourself.
The demands of providing for someone with dementia can be so consuming that many caregivers neglect their own health, Ms. Goode said.
“They’re just worn out,” she said. “They’re just totally exhausted.”
Ms. Goode said caregivers often take on all the responsibilities of helping their patients, and encourages them to ask for help so they can make time for their own medical appointments, rest and wellness.
“If you’re not healthy,” Ms. Goode said, “you can’t take care of them.”
