Isolation Among Dementia Caregivers

The Alzheimer’s epidemic is increasing at an alarming speed. A new report from the CDC claims that the number of deaths from Alzheimer’s has increased 55% from 1999 to 2014. Currently, there are more than 5 million Americans living with Alzheimer’s disease and 15 million Americans caring for a loved one with Alzheimer’s or a related form of dementia. As the Alzheimer’s epidemic grows, a recent survey from the Alzheimer’s Association shows that the disease is placing unsustainable physical, emotional and financial stress on caregivers. Isolation Among Dementia Caregivers

Learn more about the survey and how the dementia epidemic is affecting caregivers, increasing their emotional, physical, and financial health in a profound way.

Survey Says Dementia Caregivers Want More Support

The Alzheimer’s Association is releasing the results of the online survey this month, in honor of Alzheimer’s and Brain Awareness Month. The online survey had 1,500 adults participate, all with varying experience of 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.”

Dementia Caregiving and Family Relationships

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 those 61% that reported a strain on sibling relationship, 43% felt their care was undervalued or under appreciated. 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.

Dementia Caregiving and Financial Stress

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. And, an 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. Additionally, many caregiver have to leave their jobs, take unpaid time off, and miss work opportunities – creating even more financial loss.

“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.”

Other Findings

The survey also found that:

  • 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%).
  • The number one reason people said they did not help provide care for a family member with dementia was because another family member had already taken on caregiving responsibilities (74%), followed by not living in the same area as the person (62%).
  • 43% of caregivers said they frequently experience feelings of guilt.
  • 50% of all caregivers said they did not feel like they could talk socially or at work about their caregiving experiences.
  • 59% of non-caregivers said they feared being diagnosed with Alzheimer’s or dementia while 46% reported being fearful of dying.
  • 74% of non-caregivers said they would prefer a professional caregiver but only 15% financially planned for one.
  • 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.
  • 52% of non-caregivers were more likely to worry about burdening a loved one than dying.

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. We’d love to hear from you! 

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Please leave your thoughts and comments

  • CKSailor

    I am the sole care-giver for my wife who was first affected by Alzheimer’s some 12 years ago, and who was diagnosed nearly 9 years ago. She is stage 6 or 7, and suffered a cataclysmic decline after falling and breaking her hip and the effects of a delay in surgery and inappropriate medications following surgery in Australia. She has since recovered from the effects of that incident to a fair degree, but she remains unable to walk without assistance. I have worked out of a home office since 2013, and until this last January, I did not have any break in caring for my wife, save for a few occasions when my work required me to travel. As a result, last fall, I suffered what can only be described as a terribly debilitating “burn out” from all the emotional and financial stress and depression watching my wife slowly depart. Fortunately, an 11 day real vacation in January did wonders, but I more fully realize the need and importance of getting a significant break from the tasks of a sole, related caregiver.
    The silver lining is being able to show my wife how much I love her, but my heart sings on those sadly more infrequent occasions when she can say she loves me.

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