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Alzheimer’s Caregivers: Isolated and Needing Help

A new study reveals most caregivers don't get enough support from siblings


Fifteen million Americans care for a loved one with Alzheimer’s or another dementia, and two-thirds of them feel isolated or alone in that difficult endeavor.

That’s one finding of a survey released today by the Alzheimer’s Association, which also revealed that 84 percent of the caregivers would like more support in their efforts.

“It’s a problem that’s only going to get worse,” said Ruth Drew, director of family and information services for the Alzheimer’s Association, in a statement. “As life expectancies get longer and the number of older Americans grows rapidly, so too will the number of individuals diagnosed with Alzheimer’s and family members affected.”

The survey was conducted to highlight Alzheimer’s & Brain Awareness Month in June. The Alzheimer’s Association commissioned the online survey of about 1,500 adults, which was conducted in April. Those responding fell into one of three groups: 250 were currently caring for someone with Alzheimer’s, 252 had previously done so and 1,000 had never given care.

Bringing Families Closer — Or Tearing Them Apart

More than a third of respondents said caregiving for a loved one made their sibling relationships stronger. Bonding was even more true for spouses; 39 percent of the primary caregivers said their relationship with a spouse or partner with Alzheimer’s was strengthened.

“Having the support of family is everything when you’re dealt a devastating diagnosis such as Alzheimer’s,” said Jeff Borghoff, 53, of Forked River, N.J., according to the Alzheimer’s Association. Borghoff was diagnosed with early-onset Alzheimer’s two years ago. “My wife, Kim, has been my rock as we navigate the challenges of Alzheimer’s.”

Half of all Alzheimer's caregivers said they didn’t feel they could talk at work or socially about what they were going through.

But other Alzheimer’s caregivers expressed strain in their relationships — most frequently among siblings.

Sixty-one percent of siblings said they didn’t have enough support from sisters and brothers in their caregiving and that it strained their relationship. Among the caregivers who cited strain with siblings, 43 percent said their care was undervalued or underappreciated by the others.

Other Survey Findings

  • 90 percent of Alzheimer’s caregivers said their No. 1 challenge was emotional stress. Eighty-one percent cited physical stress; 89 percent said “managing my time” was their biggest challenge.
  • 43 percent of caregivers said they frequently feel guilty.
  • Two-thirds of caregivers who said the experience strengthened their relationship with their loved one said the caregiving “gave me a better perspective on life.”
  • Half of all caregivers said they didn’t feel they could talk at work or socially about what they were going through.
  • Asked how being a caregiver has strengthened their relationship with their spouse, 63 percent of respondents said it “reminded me why we love each other.”
  • 70 percent of non-caregivers feared becoming a burden on others as they aged, yet only 20 percent said they had talked with their spouse or partner about future care needs.
  • Non-caregivers were 52 percent more likely to worry about burdening their spouse or partner than they were about dying.

Financial Costs Are Growing

In an earlier report released in March, the Alzheimer’s Association estimated the cost to families and taxpayers for the care of those with dementia, including Alzheimer’s, totaled $259 billion. That’s the highest expenditure to date. Payments by Medicare and Medicaid make up $175 billion of that total.

That figure does not include the cost of unpaid caregiving.

Out-of-pocket costs for Americans with Alzheimer’s or other types of dementia are nearly five times higher, on average, than for those without those conditions, according to the earlier report.

The earlier report also found that 59 percent of those caring for family members with Alzheimer’s or other dementias rated their emotional stress from caregiving as high or very high.

Finding Resources and Help

But there are ways for caregivers to get information and assistance.

The Alzheimer’s Association offers Information on financial and legal planning on its website, along with tips for long-distance caregiving and a community resource finder.

Alzheimer’s disease is the most common form of dementia. An estimated 5.5 million Americans live with Alzheimer’s or other type of dementia. There is no cure for the disease.

If you or a family member are dealing with Alzheimer’s disease, you can tell your story on social media using the hashtags #MyAlzStory and #ENDALZ.

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By Emily Gurnon
Emily Gurnon is Senior Content Editor covering health and caregiving for Next Avenue. She previously spent 20 years as a newspaper reporter in the San Francisco Bay Area and St. Paul. Write to her at [email protected]@EmilyGurnon

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