Isolation Among Dementia Caregivers

Alissa Sauer
By Alissa SauerApril 23, 2018

Last Updated: April 23, 2018

The Alzheimer’s epidemic is increasing at an alarming speed. The CDC states that the number of deaths from Alzheimer’s has increased 55% from 1999-2014, with more than 5 million Americans living with the disease and 15 million Americans caring for a loved one with Alzheimer’s.

As the disease grows in the U.S., an Alzheimer’s Association survey shows that it’s also placing unsustainable emotional, financial and physical stress on caregivers. Read more about the survey and how the Alzheimer’s epidemic is impacting caregivers.

Dementia Caregivers Need More Support

The Alzheimer’s Association recently released an online survey in honor of Alzheimer’s and Brain Awareness Month. The online survey had 1,500 adults participate, all with varying experience with the disease. Of the 1,500 participants, 250 were currently caring for someone with dementia, 252 had provided care in the past and 1,000 surveyed had never been a dementia caregiver.

While participants overwhelmingly agreed that it takes a village to provide for care for someone living with dementia (91%), the survey results show that many caregivers are going at it alone. The survey found that two-thirds of caregivers felt alone or isolated in their caregiving and that 84% of caregivers would like more support in their caregiving 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. “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.”

She went on to say, “Alarmingly, our research also shows that few people are planning for the devastating toll this disease may have on them and their families. The burden of Alzheimer’s on society is becoming crushing — and most families are unprepared.”

Isolation Among Dementia Caregivers

When it comes to dementia caregiving, there’s no question that the support of family and friends is necessary. “As a caregiver, having the support of family and friends is so important,” said JT Hunter, Family Services Coordinator for the Alzheimer’s Association. “Navigating the course of this disease is hard work, but with a team of supporters behind you, it is so much easier.” To that end, more than 33% of participants said that caregiving for a loved one with dementia strengthened sibling relationships and 39% said it strengthened their marriages.

However, 61% of siblings felt like they did not have enough support from brothers and sisters and that dementia caregiving placed a strain on their sibling relationship.

Of the 61 % that reported a strain on a sibling relationship, 43% felt their care was undervalued or underappreciated. One in five dementia caregivers said they wished they had a network of caregivers that included other family members and 80% said they specifically desired more help from their spouse or partner.

Additionally, most non-caregivers reported wanting a spouse to be their primary caregiver if they should need one, and said they would prefer a professional caregiver for themselves, instead of one of their children.

The Cost of Caregiving

An earlier report from the Alzheimer’s Association estimated that that total cost of dementia care to families and taxpayers was $259 billion. This does not include the cost of unpaid caregiving, of which many families are bearing the financial burden.

Another, earlier survey determined that out-of-pocket costs for dementia caregiving are five times higher than other types of caregiving, meaning that families are spending more of their own income to care for a loved one. That study found that “nearly 18% of dementia caregivers spent at least $20,000 on caregiving expenses within the past year, compared to only 11% of caregivers caring for someone without dementia.” The study concluded that the costs associated with Alzheimer’s grow as the disease progresses, increasing the financial and emotional burden on families.

“Very few people are financially prepared for the cost of caring for someone with Alzheimer’s, which is made worse by the fact that most Americans lack adequate savings for retirement, and many have none, said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer’s Association. “The added burden of Alzheimer’s care on families that have neither planned for it nor saved for basic retirement needs is going to directly impact them and the public healthcare system. With a large segment of the American population reaching high-risk years for Alzheimer’s, we’re entering a crisis.”

She continued saying, “Planning for the costs of care well in advance of need and discussing one’s wishes for future caregiving can help ease the burden on families and avert some of the tensions and family conflicts that may arise following an Alzheimer’s diagnosis.”

Survey Findings

The survey also found that:

  1. 90% of Alzheimer’s caregivers reported their biggest challenge was emotional stress. Other major factors of stress came from physical stress (81%), time management (80%), financial burden (69%), lack of knowledge about the disease (66%), feelings of isolation (64%) and lack of privacy (58%).
  2. The number one reason people said they did not help provide care for a family member with dementia was that another family member had already taken on caregiving responsibilities (74%), followed by not living in the same area as the person (62%).
  3. 74% of non-caregivers said they would prefer a professional caregiver but only 15% financially planned for one.
  4. 70% of non-caregivers reported fearing becoming a burden on others as they aged but only 20% of those said they had spoken with a spouse or partner about potential future care needs.
  5. 59% of non-caregivers said they feared being diagnosed with Alzheimer’s or dementia while 46% reported being fearful of dying.
  6. 52% of non-caregivers were more likely to worry about burdening a loved one than dying.
  7. 50% of all caregivers said they did not feel like they could talk socially or at work about their caregiving experiences.
  8. 43% of caregivers said they frequently experience feelings of guilt.

On a more positive note, 67% of caregivers said their caregiving experience gave them a better perspective on life, 63% said it reminded them why they love each other and 61% said caring for a loved one brought them closer emotionally.

Do you agree with the findings of the survey? Share how loving someone with dementia has impacted your life and relationships in the comments below.

Related Articles:

Alissa Sauer

Alissa Sauer

Alzheimer’s Newsletter

Get the latest tips, news, and advice on Alzheimer’s prevention, treatment, stages and resources.

Contact UsatA Place for Mom

6330 Sprint Parkway, Suite 450

Overland Park, KS 66211

(866) 567-4049
Copyright © 2022 A Place for Mom, Inc. All Rights complies with the Can-Spam Act of 2003.