DJ An Aging Population Makes Alzheimer's a More -2-
There has also been progress around biomarkers and blood tests that could help with early detection -- crucial since the disease can emerge decades before symptoms. "Ten years ago, we would have said it's science fiction: There's no way we can measure tiny proteins in the brain in blood," Carrillo says. But C2N Diagnostics introduced a test last fall that has been tested on a small group, and Lilly and Roche Holdings also have tests, with trials possibly completed by summer and more information about whether they can be mass produced also forthcoming. "That would be game-changing," Carrillo says.
With recent research suggesting that about 40% of dementia is modifiable, scientists are also testing how interventions around cognitive engagement, diet, sleep, and exercise could affect risk factors for Alzheimer's. That's another reason there's a push for doctors to make cognition tests part of their standard protocol: Currently, less than half of primary-care physicians in a survey by the Alzheimer's Association said it's part of their standard practice. Technology could also facilitate earlier detection, with researchers looking to smartphones and artificial intelligence to pick up on subtle changes in keystrokes, typing speed, or writing patterns that could be early flags.
These scientific development are reason for hope, but even biotech executives say that a cure is a ways away. As a result, care will continue to be at the center of Alzheimer's treatment, and fixing the U.S. caregiving system needs to be a top priority.
Unlike cancer or heart disease, much of the cost related to Alzheimer's disease comes from caregiving. Medicare doesn't cover most long-term care. Medicaid covers more, but requires near-impoverishment to qualify. The average annual Medicaid payment for those 65 and older with Alzheimer's is 23 times as high as for those without Alzheimer's -- an annual average of $8,779 versus $374.
Caregiving typically is associated with helping older adults with feeding, bathing, grooming, or using a toilet, but those needs typically come in the last third of the disease. The first two-thirds are largely focused on helping Alzheimer's patients with daily life, including monitoring medicines and finances, transportation, and keeping them engaged and safe.
An army of family and friends -- often women in their prime earning years -- shoulder roughly two-thirds of the care for those with Alzheimer's. Many interrupt their careers, give up promotions, cut back on hours, or quit jobs. The average caregiver spends about five years on care for a dementia patient. That indirect cost can total roughly $500,000 per person, based on models that account for lost wages, promotions, and benefits, as well as the obstacles most people face when trying to re-enter the workforce in their 50s or 60s, says Norma Coe, associate professor of medical ethics and health policy at the Perelman School of Medicine at the University of Pennsylvania.
The indirect costs are likely to be higher in the future, as a larger share of the next cohort of caregivers are primary breadwinners or single. The hit to their Social Security, for example, may be even greater than for some in the current cohort who may be able to claim spousal benefits on their higher-earning partner's record, says Coe. Rising female labor-force participation played a big role in the last economic recovery, especially as male labor participation has fallen. The absence of these women could further hamper economic growth.
Plus, fear of future long-term care needs for parents also weigh on their children's calculations about moving away and job choices, according to Coe. If parents have long-term care insurance to help cover such needs, adult children are more likely to move away and potentially take different jobs -- suggesting that caregiving fears could also be restraining the type of mobility and productivity needed for a dynamic economy.
The financial costs can cascade through multiple generations as caregivers compromise their own finances and retirement security. At the local level, Medicaid budgets are crowding out investments in youth education. "We are seeing right before our eyes the intergenerational impact," Vradenburg says. Millennials make up a sixth of those caring for people with Alzheimer's.
The sheer number of baby boomers could outstrip available caregivers -- including informal ones, since family sizes have been shrinking. With fewer daughters and sons able to care for aging parents, demand for long-term care facilities like memory care and assisted living will increase. Both are largely paid for out of pocket, raising questions of how families will digest those costs. The annual median cost of assisted living is about $51,600, according to Genworth's Cost of Care survey. The median cost of assisted living facilities with memory care is even higher, at roughly $57,000 a year.
With costs rising, demand for home and community-based services that can keep people independent longer and out of nursing homes will only intensify. Yet many of these services -- such as adult day care -- have been especially hard hit during the pandemic, with many forced to shutter because of lockdowns. Many of those that stayed open, meanwhile, have suffered a severe financial hit, says Kirsten Jacobs, director of Dementia and Wellness Education for LeadingAge, an association of nonprofit providers of aging services.
At some point, in the later phases of dementia, when people may get more agitated or their safety may be compromised, many Alzheimer's patients will need round-the-clock care in a facility. Here, Florian worries about Covid's lasting impact: "I fear that stigma is going to increase and persist after Covid because of what happened during the pandemic with people in facilities."
Long-term care facilities could also come out financially scarred: Two-thirds of nursing-home providers in a recent survey from the American Health Care Association and National Center for Assisted Living said they won't make it another year, given Covid-related costs. The pandemic has also thrown into question the business model of nursing homes relying on the short-term rehab stays that Medicare covers for those just out of the hospital to subsidize the long-term care these facilities provide for those on Medicaid, as fewer people have elected to get surgeries and the rehab business has dried up during the pandemic.
"This is our opportunity to really be thinking about how and where we can care for people at the lowest cost and get the best outcomes -- lowering Medicare and Medicaid costs but also the cost to the family," says Coe.
That will require investing in long-term care infrastructure. Near the top of the list is focusing on supportive services that ultimately can save money by keeping people at home longer, says Nora Super, senior director of the Milken Institute Center for the Future of Aging.
President Joe Biden's agenda includes money for increased access to home and community-based services, funding for states to innovate more-creative and cost-effective ways of providing care, as well as tax credits for informal caregivers and increased tax benefits to buy long-term care insurance with retirement savings. Experts on aging want to see more investment in resources such as adult day facilities, training nurse practitioners to become dementia-care specialists, and creating dedicated teams that can help families navigate the web of specialists, clinical trials, and services.
Technology will also play a big role, and not just with telemedicine. Technology can provide a range of monitoring that allows for independence but alerts caregivers when needed. Sensors in rooms could mitigate physical danger, while software that can help monitor bill-paying or bank accounts could help, since impaired money-management skills are among the first visible symptoms.
Also high on the priority list: rethinking the value of caregivers. Many paid caregivers at long-term care facilities hold multiple jobs and have long commutes to work -- both of which have made the entire system vulnerable during Covid. It has also contributed to incredibly high turnover and shortages in an overstretched industry. "The pandemic made it clear that how we pay caregivers isn't adequate," Super says. "We need to make sure we are paying them living wages and offering a career ladder to make this an industry they want to be part of. That's going to take government intervention."
Considering ways to compensate the army of informal caregivers that provide the bulk of care for Alzheimer's patients also needs attention; proposals like paid eldercare leave and Social Security credits for caregiving could slow the intergenerational ripples created by the disease. Also on the table: ways to save for, and possibly insure against, the long-term care risk. For example, the bipartisan Homecare for Seniors Act introduced in the House in 2019 could be revived, potentially allowing home care to be considered a qualified expense that could be paid for by health savings accounts.
"There are models out there. It's about the will to put them in place and recognize this is a big challenge that could really bankrupt our system," says Super. "What gives me hope is that the pandemic has raised awareness of how the system is broken."
Write to Reshma Kapadia at email@example.com
(END) Dow Jones Newswires
February 05, 2021 11:39 ET (16:39 GMT)
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