Courtesy Iona Knapp
Iona Knapp, right, has been diagnosed with mild cognitive impairment, a potential precursor to Alzheimer's disease. Like 1 in 7 people with Alzheimer's or other dementias, the 65-year-old Lake Monticello, Va., woman lives alone. Her daughter, Sharon Mullen, lives 90 minutes away, in Manassas.
Iona Knapp’s father died of Alzheimer’s disease and her late mother suffered from dementia. Now, the 65-year-old Lake Monticello, Va., woman has been diagnosed herself with mild cognitive impairment, or MCI, and she fears their fate soon may be her own.
The trouble is, Knapp lives by herself, which would make her one of 5.4 million people in the U.S. living with Alzheimer’s disease and other dementias -- and one of 800,000 Americans doing it alone, according to a new report issued Thursday by the Alzheimer’s Association.
The report, “2012 Alzheimer’s Disease Facts and Figures,” estimates that one in seven people with Alzheimer's or dementia lives alone, and that up to half of those people have no identifiable caregiver. Most are older women with milder impairment.
“That’s a huge issue,” said Dr. Kenneth Langa, professor of medicine at the University of Michigan, and an expert on the economics and demographics of Alzheimer’s Disease.
As the baby boom generation ages, more and more people diagnosed with Alzheimer’s will be living alone, sometimes because they choose to do so, but also because a spouse has died, or because they have few or no children living nearby, said Langa, who wasn’t involved in the new report.
The analysis finds that Alzheimer’s costs the country about $200 billion per year in Medicare, Medicaid, and personal out-of-pocket expenses. As enormous as that cost is, it takes 15.2 million unpaid caregivers, usually family members, to keep it from rising even higher.
The personal impact on living alone with Alzheimer’s, dementia, or even MCI like Knapp’s, can be dramatic compared to living with a caregiver. Patients who live alone have a much higher risk of wandering off, suffering bad falls, missing medication and doctor appointments, and exacerbating other medical conditions like heart disease or diabetes. Ultimately that’s not only harmful to those people, but it ratchets up costs, too.
As Knapp herself discovered when she served as an unpaid caregiver to her mother, living alone has a host of practical costs and dangers.
When she accompanied her mother to the bank one day, “the teller said, ‘Your mother is way overdrawn. She has no money,’” Knapp recalled. “I looked back over the past two years of records, and found my mother had bankrupted herself.”
Now, she said, “I imagine my own future. I meet with my attorney on Friday. I want to talk to him about all kinds of things I can put in place so my older daughter can step in and take over financially.”
Such advanced planning is critical for anybody with Alzheimer’s, but especially for those who live alone, said Angela Geiger, chief strategy officer for the Alzheimer’s Association.
Legal and logistical considerations like advanced directives, power of attorney designations, and answers about who will be part of the care team must be addressed. None of these decisions is pleasant, Geiger explained, but they must be addressed.
“You really want to say, ‘Here are the two or three triggers for me. I’d like to go to assisted living as soon as possible,’ or, ‘Do I want to stay in my house as long as possible?' 'Who pays my bills?’”
While Knapp wrestles with those decisions, she’s trying to adapt so she can continue to live by herself, independently, for as long as possible. But it’s a challenge. She writes reminders on a white board. She programs appointments into her smart phone.
Such tactics aren’t foolproof, though: This week, she missed a doctor’s appointment.
Knapp is considering the purchase of an alarm button she can wear to alert emergency services in case she finds herself injured or lost. She’s also thinking of selling her house, and moving into senior housing close to her daughter, Sharon Mullen, whose family lives in Manassas, Va. Transportation will be available there, she hopes, because she’s already growing worried about her own driving. “There are times now, when I’ll be, like, ‘Where am I going?’”
The Alzheimer’s Association has created an online social network called ALZ Connected, in an effort to provide support, especially for those who find it tough to get out for in-person group support meetings.
According to Langa, barring some miracle of science -- and the science of Alzheimer’s and dementia has been frustrating so far -- the population of Alzheimer’s and dementia sufferers is going to grow significantly over the next decade. And because of America’s changing demographics, more and more of those people will be living alone.
“To me that is one of the key issues going forward, from a public policy standpoint,” he said. “What will the care-giving resources be?”
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