A diagnosis of Alzheimer’s disease can be overwhelming for an individual with the progressive and presently incurable condition, as well as for family.
The most common cause of dementia can wrench away a loved one in stages of cognitive decline and memory problems; it eventually disrupts all facets of daily function and is a leading cause of death. What’s more, the cost to care for a person with Alzheimer’s can be staggering, experts say, placing even more stress on caregivers.
In a recent report, the Alzheimer’s Association projected the nation will spend $259 billion in 2017 to care for people with the disease and other forms of dementia. Various reports list Alzheimer’s as one of the costliest diseases to treat in America — if not the costliest, alongside diabetes, heart disease and cancer.
A separate 2016 Alzheimer’s Association report found that nearly half — or 48 percent — of caregivers cut back on their own expenses, including basic necessities, such as food, transportation and medical care, notes Ruth Drew, director of family and information services at the association. “For one family that’s waiting to buy a new car or not going on a fancy vacation,” she says. “But for others it hits a lot harder, and it may mean just not really having enough food and not having enough of the basic necessities.”
[See: Emerging Treatments for Alzheimer’s Disease.]
Paying the Bill
Though some with early-onset Alzheimer’s are under 65, most with Alzheimer’s are older adults on Medicare. Experts worry whether the federal insurance program will be able to handle the snowballing bill, but for now, it covers the lion’s share of health costs — including medications for those with prescription drug plans. However, in addition to some out-of-pocket medical costs, long-term care costs can be crippling for families.
The average annual bill for a private room in a nursing home can top $90,000; it runs more than $40,000 for assisted living, according to a 2016 Genworth Financial cost of care survey. Specialized round-the-clock memory care offered by some nursing care facilities for those with Alzheimer’s and dementia can further drive up costs. “Even adult day services, which often are the most cost-effective way to get care for someone who needs that level of care, can be about $24,000 a year,” Drew says. Experts recommend asking about sliding fee scales, based on income, which are sometimes used to price adult day care. “You can see even if a person has a sizable nest egg, they could run through it very quickly,” she says.
Given that, Drew says it’s worth considering purchasing long-term care insurance, to help cover costs for nursing home care, or depending on the plan, in-home health services. “That is typically not available after there’s a diagnosis of Alzheimer’s,” she says. While noting there’s no one-size-fits all recommendation, Drew suggests people who have some assets and wouldn’t immediately qualify for Medicaid take a look at long-term care insurance to see if it that would be a good fit. She adds that it’s also worth considering family health history, including risk for developing Alzheimer’s and other debilitating diseases, when deciding whether to purchase long-term care insurance. Each policy is different; so it’s important to read stipulations and limitations regarding what the plans do and don’t cover.
For many, the indirect cost of caring for a person with Alzheimer’s is the most pressing — money lost taking time away from work, or quitting a job entirely to care for a family member. This economic strain disproportionately affects women in the workforce who make up the vast majority of caregivers, says Dr. Neelum Aggarwal, an associate professor of neurological sciences at Rush University Medical Center and a neurologist at the Rush Alzheimer’s Disease Center in Chicago. In speaking with caregivers, she asks them what needs to be done to keep them in the workforce, and provides resources such as lists of home health agencies and adult day care services in the area that can provide support, so caregivers can continue working.
A lack of resources can further tax caregivers of people with Alzheimer’s, who face high rates of burnout that can manifest in increased risks to their own health ranging from high blood pressure to depression. To maintain employment, check with human resources, if you work and need to take time off to provide care, regarding eligibility under the federal Family and Medical Leave Act, says Tan — who has filled out paperwork for family members of patients with Alzheimer’s.
[See: How Music Helps People With Alzheimer’s Disease.]
Planning for Support
Though an Alzheimer’s diagnosis can leave families in shock, determining costs of different types of care and how those might be paid for in advance is critical. Aggarwal advises taking a team approach. Geriatric care managers, who help people navigate complex care decisions can help in planning, including assessing costs upfront, as can elder care attorneys, who may assist with everything from estate planning to advanced directives that lay out a person’s end-of-life wishes.
Dr. Zaldy Tan, medical director of UCLA Alzheimer’s and Dementia Care Program in Los Angeles, reminds caregivers to prepare themselves for a marathon, not a sprint. Those with Alzheimer’s live, on average, about eight years after symptoms become noticeable to others — and survival can range from four to 20 years, according to the Alzheimer’s Association.
Tan recommends caregivers join support groups. He notes some caregivers are reluctant to do so, thinking support groups solely provide emotional support (which experts say is also critically important). “But in reality, it’s sort of like networking,” he says. “You have caregivers there who are taking care of people with dementia in various stages from mild, moderate to severe, so they can actually get a lot of practical tips, as well as local resources.”
Clinicians also recommend reaching out to the Alzheimer’s Association as a clearinghouse for information and to connect with various resources. The association offers a 24-hour helpline at 1-800-272-3900. “We’ve got master’s level counselors and social workers available around the clock to meet people where they are and talk about whatever they’re dealing with,” Ruth says.
Though Alzheimer’s can’t be cured, proper treatment may slow disease progression and reduce the need for care, including emergency room visits. “Medications don’t cure or stop the disease, but they can provide some symptomatic benefits that some studies have shown delay that time to someone being placed in the nursing home,” says Dr. Jeffrey Burns, co-director of the University of Kansas Alzheimer’s Disease Center. He also suggests considering joining a clinical trial — where care is free to patients — which could improve future treatment as well.
[See: 5 Ways to Cope With Mild Cognitive Impairment.]
Even small steps — like walking — could help. Burns notes research done by the University of Kansas suggests physical exercise could possibly slow the progression of Alzheimer’s. “If it is slowing the disease, it could reduce costs over time and keep people healthier and keep them at home longer,” he says — and keeping those with Alzheimer’s at home, where appropriate, can also reduce cost burden. Ultimately anything that may improve quality of life for those with Alzheimer’s and their caregivers and control cost is worth exploring, experts say. “It’s an incredibly costly disease on every level — from the family to society,” Burns says.
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The High Cost of Caring for Loved Ones With Alzheimer?s originally appeared on usnews.com
