Moving from home to a residential care facility can be a difficult transition for older adults. But for those with dementia, leaving the familiar surroundings of home often proves to be especially challenging.
A recent study by researchers at the University of California San Francisco (UCSF) provides insight into the health and wellness of people with dementia who live at home versus those who live in residential care facilities. The study also points to the critical need for home-based medical care for older adults living at home with dementia.
A Look at Where People With Dementia Live
“Not much is known about that population — people with dementia who live at home versus residential or nursing home settings — in regard to their size and characteristics,” says Krista Harrison, assistant professor in the UCSF School of Medicine’s Division of Geriatrics and lead author of the study.
“We thought it would be a helpful first step to simply understand the functional medical and social characteristics of those living at home compared to those living in places where they can obtain additional services, activities and support for daily living,” Harrison says.
“Some want to be home and can be, from diagnosis to death. But that’s not possible or desired for everyone.”
The UCSF researchers examined data from the National Health and Aging Trends Study, an annual survey of a nationally representative sample of Medicare beneficiaries.
“We wanted to identify people who newly met the criteria for moderately severe dementia, defined as probable dementia with functional impairments,” Harrison says.
A total of 728 adults age 65 and older met the criteria of having impairment with at least one of the activities of daily living ( dressing, bathing and toileting) as well as difficulty with one of two cognitive-oriented instrumental activities: managing their medications or finances. Within the cohort, 64% received care at home, 19% in residential care and 17% in a nursing facility.
People Living at Home With Dementia Had More Issues
The study showed that older adults with moderately severe dementia who lived at home had more medical needs; 71% reported bothersome pain compared with 60% in residential care and 59% in nursing homes. They also had a higher incidence of falls or concerns about falls, breathing problems and anxiety.
“With the aging of our population and the increasing preference of folks to receive care and give care at home, there is a need for more support for this invisible population,” says study co-author Dr. Christine Ritchie, the Minaker Chair in Geriatrics and director of research for the Division of Palliative Care and Geriatric Medicine at Massachusetts General Hospital.
“For people with dementia in particular, leaving home to go to a clinic can be increasingly challenging for that person and their caregiver, as the settings are unfamiliar, which can cause more emotional distress,” Ritchie says.
Home-based Medical Care: A ‘Clinic on Wheels’
The UCSF study’s results point to the need for home-based medical care for older adults with dementia who are living at home.
“I think of it as a clinic on wheels — receiving the care at home that someone would usually go to a clinic to receive,” she says. “This includes care by physicians, nurse practitioners, physician assistants and more; ideally, a team that meets traditional medical needs as well as social, emotional and spiritual needs.”
Those services reduce risks from complications, improve quality of life and help avoid trips to the emergency department, which a number of studies have shown cost more than getting services in the home, Ritchie says.
Another important benefit of home-based medical care is seeing the patient in the person’s actual setting. “One learns a lot from those visits, like what medications are in the home and what safety issues could confuse them and cause harm,” Ritchie says. “And home visits can be extremely helpful for the caregivers as well, as they have the opportunity to ask questions, like, ‘How do I safely get him out of bed?’ or ‘How do I make sure she doesn’t choke on her food?’ Those questions don’t tend to get asked in a clinic setting.”
Improving the Care Model for Those with Dementia
With improved access to home-based medical care and help connecting caregivers to community resources, the cost turns out to be less than in long-term care settings, according to the study, which provides the cost of the alternatives. For example, in 2018, the median monthly cost of assisted living in the U.S. was $48,000 annually, while a semiprivate room in a nursing home cost $89,292.
Medicare does not pay for most long-term supports and services, so beneficiaries with high needs, such as people with dementia, risk incurring substantial costs. Medicaid pays for a portion of these costs for low-income beneficiaries, but coverage of non-nursing home residential care varies substantially by state.
According to Harrison, a goal of the study was to see the model of care for those experiencing dementia improve, wherever they are living.
“Some want to be at home and can be, from diagnosis to death. But that’s not possible or desired for everyone,” Harrison says. “I would also like to see residential care and nursing home facilities that are not prohibitively expensive and that are excellent warm and caring places, both medically and socially.”
Harrison says as a researcher, she knows this is a first step on a long journey with a group of global colleagues who are working to make the world a better place for people with dementia and their caregivers.
“The hope is to make sure people living with dementia receive high quality care,” she says. “Our older adults are as deserving of expert care as our children are in receiving expert care from their pediatricians.”
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