Costs of Caregiving: Alzheimer's Other Victim
Updated: Mar 5
83% of the help provided to older adults in the United States is provided by family, friends, and other unpaid caregivers, and half of these caregivers provide care to someone living with Alzheimer’s or another form of dementia. It’s estimated that in 2018, 16.2 million Alzheimer’s caregivers provided 18.5 billion hours of unpaid care worth $239.9 billion. That same study also found that the cost of family caregiving increases by 18% per year as the patient’s cognitive ability declines.
Here are some figures on Alzheimer’s and Dementia caregivers:
Dementia caregivers spend nearly twice as much out-of-pocket per year ($11,223) as other caregivers ($6,075)
People with Alzheimer’s or other forms of dementia spend 12% of their income on out-of-pocket health care services compared with 7% for individuals without Alzheimer’s.
The total cost in the last 5 years of life averages to be $357,650 per person for individuals with dementia compared to $228,020 per person for individuals without dementia.
To keep up with the high cost of care, 60% of Alzheimer’s caregivers are also employed and worked an average of 35 hours per week on top of caregiving in 2018. Of those who were employed, 57% had to alter their work schedules by going to work late or leaving early because of their caregiving duties and 18% reduced their hours. More than one-third of caregivers lost income (an average of $15,194 compared to the previous year) due to altered work schedules or stopping work altogether. This is a significant decrease in total income for any family but hits the forty-one percent of caregivers with a household income of $50,000 per year or less especially hard.
In the later stages of the disease, families often make the difficult decision to place their loved one in a care center where the cost of care can be as much as $100,000 a year. Few people with Alzheimer’s or other forms of Dementia have sufficient long-term care insurance or can afford to pay out of pocket for long-term care services for as long as the services are needed, and unfortunately, they won’t be able to count on Medicaid for assistance until they are hovering near the poverty line.
The high costs of caregiving, coupled with income loss, can force caregivers to take drastic measures to take care of their loved ones. A study found that 48% of caregivers cut back on spending and 43% cut back on saving due to out-of-pocket costs of providing care to a loved one with dementia. Another 30% eat less as a result of care-related costs, and 1 in 5 sometimes go hungry, because they don’t have enough money for food.
These cutbacks are felt the most by the quarter of all caregivers who are in the“sandwich generation” meaning they care for an aging parent and a child under 18. Sandwich generation caregivers are predominantly women between the ages of 40 and 59 and it was found that of these caregivers, 53% believed that caring for their loved one with Alzheimer’s was more challenging than caring for their child. Advancing in a career, or just working enough to pay the bills, is difficult enough as a parent, but when the additional demands of caring for a loved one with Alzheimer’s is added, holding a job becomes nearly impossible.
Over the next decade, the number of people with Alzheimer’s disease will increase exponentially and so will the number of people providing primary care to them. So the question shouldn't just be, "How can we cure Alzheimer's?" it should also be "How can we improve support for caregivers?"