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What Life is Like for Caregivers of Those with Dementia

Caring for People with Dementia: Caregivers’ Experiences

Woman gets a kiss on the forehead from her loving adult son

 

Caring for someone with dementia can take its toll. 

Results of a recent AARP survey find 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 3 years.

While 75% 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% 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%, compared to just 38% 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% 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%).

Two-thirds of all caregivers surveyed report feeling closer to their loved one, but caregivers of those with dementia are more likely to say their relationship with their loved one over time has grown further apart (22%) than others (13%). Those caregivers of loved ones with dementia are also more likely to say the relationship with other family has been strained.

In general, caregivers by and large 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). For more information, contact G. Oscar Anderson at ganderson@aarp.org. For media inquiries, contact media@aarp.org.

 

Suggested Citation:

Anderson, G. Oscar. Caring for People with Dementia: Caregivers’ Experiences. Washington, DC: AARP Research, November 2018. https://doi.org/10.26419/res.00262.001

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