Aging, even with dementia, does not have to mean frequent doctor visits, frightening hospital stays and inevitable placement in a nursing home.
Under a reconfigured health system that has growing support, doctors would visit older, chronically ill patients in their homes. So would social workers, nurse’s aides, pharmacists and other health professionals. Patients who needed hospital-level care might be admitted to their own beds at home with oversight from home health providers.
A leading voice pushing for such change is Dr. Mindy Fain, chief of Geriatrics, General Internal Medicine & Palliative Medicine at the University of Arizona College of Medicine in Tucson. On Oct. 1, Fain will begin her term as president of the American Academy of Home Care Medicine.
She and other experts on aging say change is sorely needed in the next decade as the population ages. The first step, they say, is educating health providers in how to care for older people, including in a home setting.
The number of Arizonans with Alzheimer’s disease is expected to grow by 66.7 percent by 2025, a greater rate than any other state in the nation except Alaska, U.S. census figures show.
That growth is directly related to age. The older one gets, the higher the risk of Alzheimer’s, which is one of the most devastating diseases of aging and one that often pushes patients into assisted living or skilled nursing facilities. In Arizona, 22 percent of residents are projected to be over age 65 by 2030, census figures show.
“Even someone falling at home should not be the reason to be in a skilled nursing facility,” says Fain, who is also co-director of the UA Center on Aging. “We should, as a community, be able to provide the support to lift them up and put them back in their chair or bed as it is better for most people and less expensive than institutional care.”
In the future, Fain and others say primary care providers — physicians, behavioral health professionals and even dentists and podiatrists — would visit chronically ill seniors, not the other way around. Instead of building more memory care facilities, new systems and additional programs like adult day care would help people with Alzheimer’s disease and other forms of dementia remain at home throughout their entire lives.
An oft-cited study in the journal Neurology, based on 2010 U.S. census numbers and published in 2013, said the likelihood of someone over age 85 having Alzheimer’s disease is 1 in 3.
While there’s some evidence that rates have declined somewhat because of improvements in cardiovascular health, growth in the aging population means the disease still poses a major societal challenge.
An estimated 32,000 Pima County residents will develop Alzheimer’s disease within the next 10 years, the Alzheimer’s Association — Desert Southwest Chapter estimates. Thousands more will develop other forms of dementia.
People with dementia often would benefit the most from at-home services, says Dr.Bruce Leff, a professor of geriatric medicine at the Johns Hopkins School of Medicine in Baltimore. Leff helped develop a program known as “Hospital at Home,” which is gaining traction across the country.
There will always be a need for hospitals for the sickest patients — Hospital at Home does not attempt surgery at home, for example. But patients with conditions such as community-acquired pneumonia, congestive heart failure and cellulitis are admitted as inpatients to their own beds at home and visited by a “home hospitalist.”
“People with dementia and cognitive impairment are at a very high risk when they go to the hospital,” Leff says. “Those are the people who wander out of their hospital bed at 3 in the morning and fall and crack their head or break their hip.
“Doing what you can to keep them out of the hospital is the best kind of care.”
The U.S., including Arizona, is facing hefty bills for taking care of its elderly population, particularly those with dementia, who incur higher costs and largely rely on the government to finance their care.
Medicaid, for low-income patients, pays for nursing home and other long-term care services. The high use of these services by people with dementia translates into high costs for the Medicaid program.
Arizona’s Medicaid program for the elderly and physically disabled, called the Arizona Long Term Care System, is expected to cost $1.4 billion this fiscal year. The state’s share of that cost is estimated at $441 million, says an analysis by Arizona’s Joint Legislative Budget Committee.
Nationwide, the Rand Corp. estimates the annual costs of dementia care in the U.S. at $159 billion to $215 billion per year — costs the nonprofit think tank says are similar to or greater than the costs attributable to heart disease or cancer. Those costs could more than double by 2040, the group says.
The American Academy of Home Care Medicine is lobbying for insurance coverage of support services like coordination of care.
“We are very hospital-centric,” says Fain, of the UA. “Hospitals are great and lifesaving, they are tremendous places. But our health system was set up to take care of the 50-year-old with the heart attack, the 30-year-old with appendicitis. We’re not set up to take care of an aging society with accumulating chronic conditions, many of whom are going to develop dementia.”
Independence at Home
Recent studies based on the Independence at Home pilot program created through the Affordable Care Act show that caring for chronically ill elderly patients at home, rather than in doctors offices and hospitals, is preferred by patients, results in fewer medical complications and saves 15 to 20 percent of the costs per patient.
Independence at Home, which began in 2012, was created based on the success of the “home-based primary care program” operated by the Department of Veterans Affairs for more than 30 years in all 50 states and the District of Columbia.
The program provides chronically ill Medicare beneficiaries with primary care services at home. In its first year, 17 practices — none of them in Arizona — served more than 8,400 patients. In July, President Obama extended the program from three years to five.
A federal analysis found that Independence at Home participants saved more than $25 million in a year — an average of $3,070 per beneficiary.
A major obstacle to moving more primary care into a home setting, the UA’s Fain says, is that not enough healthcare providers are trained for it — or even trained to care for elderly people.
“We train doctors to be in hospitals,” she says. “There aren’t enough doctors or nurses who really understand what home care is.
“If there is any crisis we have, it’s geriatric workforce development. You could go through nursing school, or social work school, and not be exposed to geriatrics.”
Indeed, Leff of Johns Hopkins says it’s a challenge to find providers trained to work for Hospital at Home programs. He compares the home-based medical provider to the hospitalist — a position that was unheard of 20 years ago and yet is now commonplace. Hospitalists are physicians whose primary professional focus is the care of hospitalized patients.
“That field did not exist. It was based on an economic model that paid them a good wage to do work that they didn’t mind doing,” Leff says.
Arizona may be heading in that direction. The state’s Alzheimer’s Task Force released a state plan last week that includes expanding our “dementia-capable” workforce.
Also, last summer the University of Arizona Center on Aging was awarded a $2.5 million, three-year federal geriatric workforce enhancement grant to prepare the health-care workforce to respond to needs associated with advancing age. The money will go toward comprehensive geriatric education and training for health providers and students, including nurses, physicians, nurse practitioners, physician assistants, pharmacists and social workers. It will include training on working in home sites, and with patients who have Alzheimer’s disease.
Fain is co-principal investigator of the grant along with Jane Mohler, associate director of the UA Center on Aging. Mohler says the grant will focus on educating community health workers who interact with low-income, underserved, often Spanish-speaking, elders and their families.
Hospital at Home
The natural next step from Hospital at Home is Independence at Home, Leff says.
Already, Cedars-Sinai in Los Angeles has a hospital-at-home program. The Geisinger Health System of Pennsylvania is developing one and so is Centura Health in Colorado Springs.
“There are probably a bunch of others that I don’t even know about,” Leff says. “The interest is growing, not just among passionate, mission-driven doctors but now you are starting to see interest from large health systems, interest from managed care systems, private venture, from the slew of forces that can actually push the field forward.”
The model can work even for people who live alone, he says.
“We did a multi-site national study in the early 2000s and about one-third of our patients lived alone,” he says. “If they needed help with their daily activities — it’s really quite inexpensive to pay to have a nurse’s aide in the home compared to the cost of sitting in a hospital bed. If you just get into a hospital bed, before they give you the first aspirin, that’s $2,000.”
People with dementia typically are in more care settings and experience more transitions between care settings than do older adults with other chronic conditions, says a 2014 Rand policy blueprint on dementia.
Those changes are harder on people with dementia than they are for non-dementia patients. And especially if they follow a hospital stay, they carry major risk of medical errors and infections, stress and agitation that can lead to hospital readmissions and worsening of delirium, the report says.
But caregivers often reach a point where they see no choice but to put a family member into a facility because of falls, wandering or “sundowning,” where their loved one is up all night.
Home visits could help some of those patients, but not all of them are open to the idea. Dr.Paul D. Kartchner, a Tucson physician who makes house calls, says home visits can lead to “an easier and better exam,” but he’s had patients decline them.
“They say no, that their house is messy,” Kartchner says. “I don’t see it ever replacing office visits, but it’s definitely got a place, especially if you know a patient well and you are monitoring their condition.”
The UA’s Fain says the idea is not to send sick people home as a way of saving money. And it’s not about having a primary-care doctor who does house calls. It’s about a continuum of care for people who need support starting at the early stages and moving all the way to full care at home.
For the right patient, “that is the kind and right thing to do,” Fain says. “Maybe they wouldn’t have to go into assisted living or skilled nursing.”
The key, she says, is developing a system that offers options.
“We should be able to anticipate and prepare a family, be there when they need us, and transition them according to their goals, preferences, and values,” she says.
“The system is changing. And it’s changing pretty quickly.”