Alzheimer’s organizations, as well as the National Institutes of Health, have provided us with an abundance of statistics highlighting the financial effect of Alzheimer’s disease on the family of someone with the disease. A person who has been diagnosed with Alzheimer’s can be expected to live with the disease anywhere from six to 20 years. For many of those years, the person with Alzheimer’s will likely require paid outside help, and the cost of that help can be financially devastating.
According to Alzheimer’s Association, the average lifetime cost of care for someone with Alzheimer’s disease is $174,000. If the person who develops Alzheimer’s is relatively young, perhaps in his or her 50s, the cost soars. Nursing home costs can range from $42,000 to $70,000 a year, yet this is the kind of care many people with later stage dementia need.
Putting a face on the statistics
When I think of the financial effects of the disease, I think of a woman I met a couple of years ago when I was speaking to a group of caregivers. For her and her husband’s privacy, I’ll call the couple Linda and Jim.
Jim was a retired college professor and Linda had retired from a good administrative job. They owned their home and had accumulated reasonable resources for retirement. However, when Jim was diagnosed with Alzheimer’s disease, their medical costs immediately started to rise. Medication and doctor bills piled up. Jim was prescribed expensive drugs that for some people may put off the worst cognitive effects of the AD, though unfortunately for Jim the drugs had little effect. He took them anyway, out of hope.
For the first two years, Linda was Jim’s sole caregiver, but eventually she needed some relief. She heard about an adult day care program located next to a skilled nursing home quite close to where they lived, so she enrolled her husband in the program. The ADC bus would pick up Jim each week day and deliver him to the center for a few hours of peer socialization and activities. Linda finally had some freedom to accomplish her tasks, as well as a bit of time for herself. However, there was no financial help for day care. They paid it all.
By the time I met Linda, she was nearing physical and mental burn out. Jim was starting to wander and she was afraid he’d get out of the house at night despite her best efforts, so she got little sleep. Linda had paid so much out of their savings for Jim’s medications, his tests, and his day care that she was worried about her own financial future.
Although they were still financially solvent, Linda knew that if she moved Jim into the nursing home their savings would soon be gone. She also worried about whether or not she could keep their home. Yet, eventually, for her health and her husband’s safety, Linda decided there was no choice. Jim needed nursing home care.
I was able to suggest a compassionate estate attorney who helped guide Linda, but there wasn"�t a lot anyone could do to protect the little savings she had left. Linda discovered that eventually she’d have to apply for Medicaid to pay for Jim’s care.
For Jim to qualify, she would then need to become an "impoverished spouse." Among other things, this meant that Linda could keep their home, but a lien would be placed against it so that after the house was sold Medicaid could recover whatever money they had paid out for her husband, assuming the house was worth that much. Linda had little choice, so she did what she had to do. She placed Jim in the nursing home, visited as much as she could, and lived on what Medicaid allowed her to keep.
I use this couple as an example because they were solidly middle class people who had planned well for their retirement. They had expected that, between their Social Security and their savings and investments, they’d be financially secure enough to continue with their relatively modest middle class lifestyle until they died. Alzheimer’s disease destroyed that hope for this couple as it has for millions of others.
Long-term care insurance has helped some people survive financially
Another example, although somewhat different in their ability to pay, is a couple who had wisely purchased long-term care insurance years before the woman developed Alzheimer’s disease. The long-term care policy now helps pay for in-home care, adult day care or other care needs, as well as nursing home care. This couple still feels the pinch of Alzheimer’s costs, but they should survive with less financial damage.
Any incapacitating illness that lasts for years is expensive. A person who develops Alzheimer’s will have initial costs that mirror other illnesses. However, for some people the need for constant supervision can start early and last for a decade or more. The cost of such care can devastate families financially.
Aside from the pressing need to discover a cure for Alzheimer’s because of the human destruction caused by this cognitive killer, we need to find a cure for this disease because of the financial consequences for families and our country as a whole. When people can no longer pay for the care their loved one needs, then the tax payers get billed. For humane and well as financial reasons, we need to fund research to end this disease. Often these concerns overlap.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.