New AARP Study: Caregivers of people with dementia at greater risk for social isolation, loneliness

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By Mike Festa, State Director, AARP Massachusetts

Mike Festa
Mike Festa, State Director, AARP Massachusetts

Results of a recent AARP survey found that caregivers of loved ones with dementia put in longer hours and find themselves having to make more adjustments in their lives than caregivers of people with other health conditions.

The national survey looked at the demands of about 700 caregivers of individuals with dementia or other forms of cognitive impairment (most often their parents), as well as 400 caregivers who cared for a loved one without dementia. Regardless of the situation, on average, caregivers report having been caring for their loved one for almost three years.

Not only are the millions of family caregivers for those with dementia less socially connected, they are significantly more likely to put off medical care – over half (55 percent) have done so, compared to just 38 percent among the total caregiver population. However, there were positive health behaviors identified in the poll as well – 79 percent took steps to maintain or improve their brain health and 47 percent exercised more.

While 75 percent report that caring for someone with dementia has brought more meaning to their lives, most of the survey findings show the caregiving experience comes with greater challenges. For example:

  • Caregivers for those with dementia spend on average 13.7 hours per week caregiving while other caregivers spend 11.7 hours.
  • About 32 percent of caregivers cite managing emotions and the demands of care as the biggest challenges of caring for someone with dementia.
  • Respondents indicate their health status is no different whether they care for someone with dementia or not, but dementia caregivers are more likely than others to say that they have delayed tending to health care for themselves due to caregiving—55 percent, compared to just 38 percent among other caregivers.

Caregivers for those with dementia also are more apt to report that caregiving has led to less sleep, more anxiety and depression, less time for themselves and with friends, and feelings of loneliness. Furthermore, about 63 percent of dementia caregivers say their care responsibilities have led to working different hours, leaving work early or unexpectedly, and worrying about finances—a higher percentage than other caregivers (36 percent).

In general, caregivers indicate that they are receiving what they need from health care providers, yet those caring for someone with dementia also seek out more information about caregiving and from a greater variety of sources.

The AARP online survey of 1,112 caregivers age 18 and older was conducted October 1-10, 2018. Data are weighted by income, gender, and age according to caregiver benchmarks obtained in Caregiving in the U.S. (2015).

AARP helps family caregivers find the information and support needed to manage their own care along with their loved one’s care. Visit www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Dementia Care Guide and the Community Resource Finder.

To read the full report, visit: https://www.aarp.org/research/topics/care/info-2018/dementia-caregivers-experiences.html.