New Hopes for Dementia Care [Essay]
In total, Americans already spend more than $200 billion a year on dementia care, and the figure is climbing. But with the right help, problems that lead to nursing home placement can be addressed at home, using innovative new approaches that may improve the quality of life for dementia sufferers. While these programs aren’t a cure-all—people with end-stage symptoms of dementia, they can help the majority of people in the earlier stages stay home longer and more safely.
By Tia Powell | Apr 11, 2019 | This article originally appeared in The Wall Street Journal
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New Hopes for Dementia Care [Essay]
A colleague called the other day, asking for help finding care for her brother, who was recently diagnosed with dementia. That’s a common enough request, but this colleague is a doctor, and she had already taken her brother to an elite academic medical center that did lots of tests and offered to enroll him in research studies. That wasn’t the help her brother was looking for, however, or at least not all of it. He wanted to know how long he could keep working, how he should organize his finances, and how long he could live at home as his illness progressed. His physician couldn’t answer those questions and didn’t really know who could.
As the baby boomer generation ages, many more Americans are going to be asking the same questions. More than five million Americans already suffer from dementia, a broad category that includes Alzheimer’s disease and other ailments that cause irreversible, progressive and ultimately fatal cognitive decline. Dementia affects not just memory but also executive function, learning, language and basic movements like walking and swallowing.
In addition to the emotional and physical burden on patients and caregivers, dementia also exacts a high financial toll. For patients on Medicaid, the average annual cost of nursing home care is roughly $82,000; if you don’t qualify for Medicaid, a semiprivate room in a decent nursing home in a big city costs $240,000 a year. In total, Americans already spend more than $200 billion a year on dementia care, and the figure is climbing.
Pushing back the day when a person with dementia needs a nursing home can both save money and improve quality of life. Unfortunately, it is all too common for a frail older person with dementia to live at home alone, with few services and supports. That makes it easy for them to miss meals, mix up medications or fall and break a hip, requiring hospitalization that costs tens of thousands of dollars—followed by expensive rehab or a permanent transfer to a nursing home.
For people in the earlier stages of dementia, a dog can get them out of the house and walking.
But with the right help, problems that lead to nursing home placement—including agitation, incontinence, wandering and falling—can be addressed at home, using innovative new approaches that promise to improve the quality of life for dementia sufferers. These programs aren’t a cure-all—people with end-stage symptoms of dementia may ultimately need a nursing home. But they can help the majority of people in the earlier stages stay home longer and more safely.
Pets are a familiar remedy that is gaining popularity. For people in the earlier stages of dementia, a dog can get them out of the house and walking, which is good for mood, may slow cognitive decline and facilitates friendly conversations with people in the neighborhood. Trained therapy animals can do a lot more, like help find a lost person or offer reminders to eat and take medicines. Highly trained animals are expensive and hard to obtain, however: Ohio-based 4 Paws for Ability offers dementia therapy dogs for $17,000—below their actual cost—and it has a wait list.
Unfortunately, older people walking dogs can fall and get fractures, which may mean a ticket to the nursing home. That’s why patients with more advanced dementia can benefit from fake pets, which help to calm agitation. Ageless innovation’s Joy for All robotic stuffed animals cost just under $100 and come in dog or cat versions that wag their tail or purr. One friend ruefully reported that of all the gifts and outings she’s offered her mother with dementia, her absolute favorite is her robotic kitty: Her mother was barely speaking before but now speaks to the cat and about the cat to every visitor.
Some people hate these phony pets, finding in them a way to trick the cognitively vulnerable. But calming agitation with a robo-kitty can reduce the use of antipsychotic medications (whose risks include that broken hip); the fake pet is better than a real fracture.
The PACE program has successfully improved patients’ function and decreased their health-care costs, and has been replicated across the country.
Those who need more intensive help can benefit from the PACE program, or Program for All-inclusive Care for the Elderly. Designed for people covered by both Medicare and Medicaid, PACE has successfully improved patients’ function and decreased their health-care costs, and has been replicated across the country. PACE provides social opportunities, music and art activities, modest exercise (think chair yoga) and basic medical screening like blood pressure checks. All that activity can also help to combat the disrupted sleep-wake cycles caused by dementia—a significant contribution, since a patient who is awake and noisy all night can overwhelm a family that has to get up in the morning for school and jobs.
Another promising program is Mind at Home, based at Johns Hopkins University, which sends workers to check out dementia patients’ homes for safety issues—like bathroom cabinets full of expired drugs and rugs that are tripping hazards—and trains caregivers to respond to dementia’s challenges. Care is coordinated with a multidisciplinary team that focuses on preventing falls, maintaining good nutrition and ameliorating symptoms like agitation, wandering and anxiety. The NYU Caregiver model is another excellent program, focusing on counseling sessions for family caregivers, support groups and as-needed backup phone calls. New York state is funding a five-year trial to expand this approach and to help stretch the time that people with dementia can live safely at home, where they say they’d like to be.
We currently have no cure for dementia, and we are unlikely to find one in time for the aging baby boomer generation. Dementia is tough on those who have the illness and those who care for them. It’s in everyone’s interest to design good dementia care and make it ready for the day we will need it.
Illustration: Andrea Mongia
– Dr. Powell is a professor of psychiatry and bioethics at Albert Einstein College of Medicine. This essay is adapted from her new book, “Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End,” published by Avery.