The FINANCIAL — People who care for a loved one with Alzheimer’s disease report experiencing more negative impacts financially, emotionally, and time-wise compared to caregivers of aging loved ones in general, according to new research unveiled today by Caring.com at the US Against Alzheimer’s/Women Against Alzheimer’s “Out of the Shadows” Summit.
Among the findings of Caring.com’s latest survey: Those caring for a loved one with Alzheimer’s are more likely to spend more than $50,000 a year on caregiving expenses, to be negatively impacted at work, and to have difficulty sleeping. They’re also 24% less likely than other caregivers to agree with the statement: “Families should care for each other, no matter what.”
“It’s clear from the survey results that caring for a loved one with Alzheimer’s is taking a greater toll on families than unpaid caregiving in other condition situations,” said Andy Cohen, CEO of Caring.com.
Caring.com’s survey of 2,098 U.S. adults was conducted online from July 8 – August 10, 2015. All survey-takers had searched online for senior care assistance, although exact search terms varied. Over 60% of survey respondents reported that their loved one suffered from Alzheimer’s or another type of dementia. These respondents were analyzed separately from those caring for someone with a different disease, or general age-related decline.
Alzheimer’s caregivers are likely to be the first ones to notice their loved one’s Alzheimer’s symptoms. In 63% of the Alzheimer’s caregiving situations, the family caregiver recognized the problem first. Only 12% of the time was it first flagged by medical personnel. Many of these caregivers commented that they knew the danger signs because other family members had also suffered from the disease.
After signs of dementia were detected, caregivers’ most common action was to schedule a medical appointment, cited by 73% of respondents, followed closely by searching online for information about the disease (61%). Only 28% requested information from Alzheimer’s-focused organizations, and even fewer sought out a support group (19%).
Alzheimer’s takes a major financial toll on families. Of all survey respondents spending more than $50,000 per year on caregiving expenses, 89% had a loved one with Alzheimer’s or another type of dementia. Over 11% of families coping with Alzheimer’s reported spending more than $50,000 annually, vs. 4% of other family caregivers. Alzheimer’s caregivers also experience more adverse impacts to their jobs, — 20% more Alzheimer’s caregivers say caregiving activities negatively impact their jobs (75% vs. 63% of general caregivers).
As far as caregiving tasks, Alzheimer’s caregivers are more likely than others to pay bills (84%), manage medications (78%), and assist with dressing (45%), feeding (31%), and toileting (30%). They’re also much more likely (78% percent of Alzheimer’s caregivers) to be involved in communicating about their loved one’s condition to friends and family, compared to 62% of general caregivers. Forty-two percent of Alzheimer’s caregivers report spending over 30 hours a week on these tasks, compared to 30% of general caregivers reporting the same time commitment.
How do families cope? Many bring in paid help (48% of those whose loved ones live on their own and 27% of those who live with the caree). But this care is expensive, and many feel trapped by financial constraints. Twenty-six percent of Alzheimer’s families report that they’re financially unable to hire help or move their loved one to a facility, compared to 14% of general caregivers who say they feel so financially stuck.
Although fewer Alzheimer’s caregivers report concern for their loved one’s health and safety (34%, compared to 46% of general caregivers) – perhaps because so many have additional paid care and/or have taken the loved one into their own home – far more feel that the burden of caregiving on the family is such that they will need to make a change in their loved one’s living situation before too long (32% vs. 17% of general caregivers). And while half of all caregiver respondents agree with the statement, “Families should take care of each other, no matter what,” only 37% of those caring for a loved one with Alzheimer’s feel that way.