As advances in medicine and public health help people live longer, a new health crisis has been created: a tidal wave of Americans living with Alzheimer’s and other dementia-related diseases.
Nowadays, about 1 in 9 people age 65 and older will get Alzheimer's, and that number increases to 1 in 3 once someone reaches 85. It's the most common form of dementia, making up 75 percent of dementia-related diagnoses.
It's a problem that health-care providers and states are struggling to handle. The current system often fails to care for patients and aid their millions of unpaid caregivers.
“The structure we have in place no longer fits the frame,” said Elaine Ryan, vice president of state advocacy for AARP.
States, however, are starting to consider the issue more seriously.
'Diagnose and Adios'
In the health-care community, Alzheimer's is often referred to as a “diagnose and adios” disease, meaning once someone is formally diagnosed, there often aren’t medical interventions until that person needs hospice care (which can be years later). Many of the "treatments" are more social work focused and not in the purview of a medical doctor. But even given that, Alzheimer's care advocates say health-care policymakers have failed at providing help.
"Doctors will never be social workers, but they need to start showing family members all of their resources in order to get support they need -- even if it's not from them," said Terry Barclay, a neuropsychologist in the Center for Memory and Aging at HealthPartners, a Minnesota-based health-care organization.
More than 40 states have an “Alzheimer's state plan" created by policymakers. They often include plans for more research, public awareness campaigns, training for health-care professionals and data collection.
In terms of actual implementation, Minnesota has surpassed the rest, according to Ryan.
“We saw a smattering of guidelines relating to the disease, but no one had actually put the pieces together yet,” said Barclay.
So Barclay, along with other members of the Alzheimer's Association's Minnesota chapter, created ActOnALZ.org. In the absence of a national standard for testing cognitive impairment, the website offers providers a cognitive screening tool and information on how best to coordinate care once a diagnosis is delivered. It also helps caregivers learn the best ways to speak with people inflicted with the disease.
Unlike many states, Minnesota also immediately connects people to a social worker with a speciality in aging care after they've been diagnosed.
"The landscape of the political scene in many states doesn't allow money for initiatives like ours," said Barclay. "But we just decided money or not, this is important."
Invisible Health-Care Workers
There are an estimated 34 million unpaid caregivers (often family and friends of the patient) serving the 5 million Americans living with Alzheimer's. They are considered an invisible workforce within the health-care system, and their workload takes a toll on their own lives.
A study this month from the National Institutes of Health found that people who provide “substantial care” for a loved one were three times more likely to lose productivity in other areas of their life and five times more likely to neglect activities like socializing, working out or attending a religious service.
About 400,000 of these unpaid caregivers are in Maricopa County, Ariz., where Alzheimer's is the fourth-leading cause of death (it's the eighth-leading cause of death among Americans overall).
“Many of these caregivers are older themselves,” said Wayne Tormala, chief of the Bureau of Tobacco and Chronic Disease for the Arizona Department of Health. “These are people under a lot of stress, so often we see them dying before the person they are caring for. We have a major public health problem on our hands.”
State Mortality Data
This chart shows 2014 age-adjusted mortality rates for Alzheimer's deaths per 100,000 population:
SOURCE: 2014 Underlying Cause of Death data; CDC WONDER Database In the past year, 40 laws have been enacted in 31 states aimed at giving these caregivers a helping hand. California, for example, now requires hospitals to keep family caregivers in the loop during the hospitalization and discharge process. That may seem like a no-brainer, but it’s something that both Alzheimer's health advocates and caregivers have been begging for for some time.
“I work in medicine and I don’t even think we have a good standard in place to deliver information to caregivers,” said Tena Alonzo, education and research director at Beatitudes Campus, a retirement community in Phoenix. “If we can’t give caregivers all of the medical information in a language they can understand, then how is someone supposed to make the best decision for that person?”
States across the country, though, are starting to take this issue more seriously.
About a dozen family caregiving task forces have recently been established, and some states have expanded their respite care services, which give caregivers a break while a professional looks after them. It’s currently underutilized, with only 27 percent of caregivers using respite services, either because they aren't aware of the resources or because it isn't covered by Medicare.
'It Should Be About Living'
Many advocates argue that in order to create a more holistic care system, there needs to be more funding and focus on palliative care.
A board-certified field of medicine since 2006, palliative care focuses on making a patient with a chronic illness as comfortable as possible. It’s a system of managed care where relief can be as varied as a prescription for painkillers or a visit to a spiritual leader. It's similar to hospice care but instead focuses on patients before they reach a terminal stage.
“Hospice care is always palliative care, but palliative care is not necessarily hospice care,” said Carol Long, founder of Palliative Care Essentials, a consulting firm specializing in care for aging adults. “It simply just takes the principles of hospice care and moves it upstream. It’s the best way to ensure that the stress of the illness is managed from the get-go.”
But Ryan of the AARP is unconvinced that a more palliative-focused framework is the answer because it isn't on policymakers' radars just yet. She does, however, agree that there needs to be a better way to treat the ill.
“The system of care has to change," said Ryan. "What it needs to look like remains to be seen, but we have to figure out a way to support this rising need. We don’t have a way to meet demands right now."
A good place to start, according to experts, is to think of Alzheimer's less as a disease and more as a phase of life that needs extra attention.
“This disease shouldn’t be about dying, it should be about living,” said Ryan. “What’s the best and most humane way we can help people live out their last years?”