The Cost of Escalating Dementia

husband-wife dementia

The day I left my job as a college educator, I set aside a lot of things. A career in a respected profession. Medical insurance. Accumulating Social Security benefits. Extra “pin money,” as my mother would have called it, to kick up my heels at the mall once in a while. I was leaving my job as a college writing college instructor, in part, to take care of my parents and my father-in-law.

For several years in our marriage my husband Dan and I lived in Iowa where we cared for his father with Parkinson’s disease and mental illness in our home while I commuted back and forth to Michigan, helping to oversee the care of my mother with Alzheimer’s and my father with multiple health issues.

I was working part-time as an educator as well as writing books. It was a grueling few years. Like many women, I eventually gave up a professional position to pursue self-employment so I could care for parents full-time.

A new study in the New England Journal of Medicine reports that 15% of Americans 70 and older have dementia. and the cost of caring for them is estimated at $70,000 per year.

The Alzheimer’s Association estimates that there are 15 million caregivers in the nation, and 2.3 are providing long-distance care for their loved ones. It is estimated that long-distance caregivers spend an average of $10,000 per year out-of-pocket to provide care for their loved ones, twice the amount of those who live near loved ones.

It’s not unusual for a caregiving spouse to leave their job or reduce their work load to part-time to accommodate the responsibilities of caregiving. But the cost for men and women varies greatly. According to a 2011 study conducted by MetLife

  • For women, the total individual amount of lost wages due to leaving the labor force early because of caregiving responsibilities equals $142,693. The estimated impact of caregiving on lost Social Security benefits is $131,351.
    A very conservative estimated impact on pensions is approximately $50,000. Thus, in total, the cost impact of caregiving on the individual female caregiver in terms of lost wages and Social Security benefits equals $324,044.
  • For men, the total individual amount of lost wages due to leaving the
    labor force early because of caregiving responsibilities equals $89,107. The estimated impact of caregiving on lost Social Security benefits is $144,609. Adding in a conservative estimate of the impact on pensions at $50,000, the total impact equals $283,716 for men, or $303,880 for the average male or female caregiver 50+ who cares for a parent.

So what can families do?

  • Start talking early with family members about plans for long-term care for you or your loved ones. Discuss how responsibilities will be shared.
  • Consider options that promote independent living, such as geriatric care managers, adult day services such as Sarah Care, county respite and day care services available through your local Area Agency on Aging, medical alert systems, and other options.
  • Assess the available resources in the area where you or your loved one would be living. For instance,  the county where we resided in Iowa was one of the best in the nation for providing eldercare services.
  • Consider a transitional plan of downsizing and moving over a period of time, if necessary.

What options has your family found beneficial? We’d love to hear from you.

2 thoughts on “The Cost of Escalating Dementia

  1. I was the caregiver for my father, who had Alzheimer’s, while I still had a teenager at home. I was one of the statistical caregivers you mention, who leave their job because of the demands of caregiving, even though Dad didn’t live with us. Shelly, I still don’t know how you managed to care for your parents in your home while you were so ill yourself.

    One of the things I learned was that the care solutions change as the person’s condition deteriorates.

    I used an electronic pill organizer from until my father began to ignore the reminders (lights and beeps). (The newer version is lockable.) Eventually I hired a nurse, who visited once a week and set up a locked medicine organizer and an aid, who came to Dad’s house to prepare meals and administer medicines.

    For a while I had the community taxi/bus pick Dad up and take him to community meals (through Area on Aging) at noon. When that no longer worked well, I ordered meals from to supplement food I brought him.

    • All great ideas, Constance. And yes, you’re right. Caregivers must constantly re-evaluate needs. Thank you for providing these valuable resources.

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