The High Burden and Long Period of Caring for Loved Ones with Dementia Takes a Toll on Dementia Caregivers

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New Data from the National Alliance for Caregiving in partnership with the Alzheimer’s Association Demonstrates Hardships Faced by Families Caring for Loved Ones with Dementia

"We found that they provide a wider variety of activities for their loved one and spend more hours per week providing care.”

Dementia Caregiving in the U.S. documents the demographics of caregivers of people with dementia and how family caregiving impacts their lives. The report, from the National Alliance for Caregiving in partnership with the Alzheimer’s Association, draws on a nationally representative data set to identify the unique challenges of a friend or family member caring for a loved one with Alzheimer’s disease and other dementias.

In addition to describing the dementia caregiving population through new statistics on their daily activities, the report compares dementia caregiving to other types of caregiving. Based on these findings, the report offers a series of policy implications that will support these caregivers and reduce the challenges they face.

“Dementia caregivers shoulder more caregiving responsibilities than do other caregivers,” noted Gail Hunt, President and CEO of the National Alliance for Caregiving. “We found that they provide a wider variety of activities for their loved one and spend more hours per week providing care.”

Caregivers of people with dementia provide, on average, longer hours of care and assist with more activities of daily living.

“Caring for individuals living with Alzheimer’s and other dementias is both emotionally and financially straining,” said Robert Egge, Alzheimer’s Association Chief Public Policy Officer. “We applaud the National Alliance for Caregiving for shedding new light on these hardships and furthering the conversation about the unique needs of those caring for a loved one with this devastating disease.”

The report includes statistics and analysis on the challenges facing family caregivers of people with Alzheimer’s disease or other dementias. Highlights include:

  • 22% of America’s nearly 44 million caregivers provide care to someone with Alzheimer’s disease or dementia.
  • The majority of dementia caregivers are women (58%). They are on average 54 years old caring for a relative age 77.2 years old.
  • Most dementia caregivers support a relative (88%), usually a parent (42%), a spouse or partner (12%) or a parent-in-law (11%).
  • On average, dementia caregivers provide care for 28 hours per week. They help with more activities of daily living and instrumental activities of daily living, on average, than non-dementia caregivers.
  • A majority of dementia caregivers (67%) report that they do medical/nursing tasks, like administering injections and tube feedings, and catheter and colostomy care. Of those who perform medical/nursing tasks, a majority (53%) feels that they were not prepared to complete the task at hand while 14% feel that were adequately prepared.
  • Over half (57%) of dementia caregivers work full-time and, on average, work 34.9 hours weekly.

Find more information at http://www.caregiving.org/dementia.

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Parys Grigsby
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National Alliance for Caregiving
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