Experts offer advice on the best way to take care of a person with dementia who lives at home, and when the time is right to move them into a care facility.
You work a full-time job in your chosen career. But you have another full-time job at home, taking care of a parent who has some form of dementia.
The responsibility is stressful. It’s exhausting. It takes a toll on your finances, health, and social life.
Turns out, there are lots of folks in similar straits and not enough community resources to help them.
That’s the finding of a
“For people who are living at home with dementia or caring for someone at home with dementia, it says you’re not alone. This is a pretty substantial population,” said Krista Harrison, PhD, the study’s lead author and a researcher at UCSF as well as an assistant professor in the division of geriatrics at the UCSF School of Medicine.
The researchers used data from the National Health and Aging Trends Study, which is a representative sample of people on Medicare.
They studied 728 seniors who had received a diagnosis with moderately severe dementia in a five-year period, between 2012 and 2016.
Within the group, 64 percent were cared for at home; 19 percent in residential care, such as assisted living; and 17 percent were in a nursing home.
The researchers said seniors being cared for at home had more chronic illnesses and were more likely to have anxiety as well as be in fair to poor health.
Among those at home, 71 percent reported being in pain. That compared to 60 percent in residential care and 59 percent in nursing facilities.
“Some people with dementia who live at home receive home-based primary care, but many likely do not,” Harrison noted.
Home-based medical care with insurance paying for coordinated home care provided by doctors, physician assistants, or nurse practitioners and their interdisciplinary teams is a small but growing portion of healthcare.
But the researchers said they weren’t suggesting more people with dementia should be treated in residential care or nursing homes.
“For the luckiest people, care in the home with great informal caregivers who are very attentive, who can gain access to home-based medical care resources is optimal,” Harrison said. “That quality of care, one-on-one, is going to be far higher than is often available in residential care and nursing facilities.”
In fact, the researchers said the trend is moving away from nursing homes.
“Rates of nursing home use are declining because they are expensive and people generally prefer the familiarity of home,” Harrison explained. “People with dementia benefit from consistent and predictable environments and caregivers.”
“In a way, the study makes the argument for increasing public support for families that are caring for somebody at home. There’s not nearly enough resources out there,” said Leah Eskenazi, MSW, the director of operations and planning for the Family Caregiver Alliance.
Families are turning to Eskenazi’s organization for help. She says of the thousands of families they’ve helped, 70 percent are caring for someone with dementia.
“What we’re seeing is that families are worried about doing the best job possible providing care. Having support for them in the community would make a world of difference,” Eskenazi said.
“For most people, it would help if they could just get somebody to come in and check on them or have a hotline to call about medications,” she added.
“It is notoriously difficult to assess pain and anxiety in someone with dementia, because they can’t self-report as they are further along in the disease. You have to watch for them rubbing some area on their body, or tugging their clothes, or maybe they start crying,” Eskenazi said.
“The wonderful thing about being at home is that typically a family member will pick up on those clues,” she said. “That isn’t always the case in a residential environment. In residential settings, there tends to be a usage of psychotropic medications to manage people with dementia.”
Eskenazi says her organization also finds that half of family caregivers are now expected to carry out more complex care at home without a lot of training.
Here are some links to tips and information her organization has put together: