Memory Mondays: Effects of Dementia on Caregivers

The effects of dementia on caregivers are more paramount than ever, as the prevalence of Alzheimer’s disease increases and its impact proves devastating.

In fact, Alzheimer’s disease and other forms of dementia are placing unsustainable physical, emotional and financial stress on caregivers, according to survey results from the Alzheimer’s Association. And many caregivers are going it alone, though the majority agree it takes much more collaboration and unified effort to provide proper dementia care.

Of the online survey’s 1,500 adult participants, 250 stated they were currently caring for someone with dementia and 252 had previously cared for someone. And the effects of dementia on caregivers such as these are profound – two-thirds reported feeling alone or isolated, and 84% said they would like more support, the survey found.

And the troubling news is, the problem is likely to only get worse.

“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,” said Ruth Drew, director of family and information services at the Alzheimer’s Association. “The burden of Alzheimer’s on society is becoming crushing – and most families are unprepared.”

Familial Effects

The effects of dementia on caregivers are several fold, and Alzheimer’s and other forms of dementia significantly influence family ties.

Often, caregiving can strengthen sibling and spousal relationships, according the survey. But more often, caregivers feel a lack of support from brothers and sisters, and 80% of dementia caregivers specifically noted wanting more help from their spouse or partner. This in turn strains relationships.

Despite the stress among families from dementia caregiving, most non-caregivers reported wanting a spouse to serve as their primary caregiver. They also said they would prefer professional caregivers over their children.

However it might play out, a network of caregivers is crucial.

“As a caregiver, having the support of family and friends is so important,” said JT Hunter, family services coordinator with 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.”

Financial Burden

The total cost of dementia care for families and taxpayers reached an estimated $259 billion in 2017, according to the Alzheimer’s Association. This figure doesn’t include unpaid caregiving, which means much of the financial burden falls to families. And out-of-pockets costs for dementia caregiving far surpass those for other types of caregiving.

As Alzheimer’s disease progresses, the costs grow, as well, which also places a greater financial and emotional burden on families. As responsibilities become more demanding, caregivers sometimes have to leave their jobs or take unpaid time off, which can also mean more financial loss.

Add to the mix the fact that very few people are financially prepared for dementia caregiving, and that adequate savings for retirement are lacking. The situation becomes all the more difficult.

“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,” said Beth Kallmyer, MSW, vice president of constituent services for the Alzheimer’s Association.

Additional Findings

The Alzheimer’s Association survey also found the following about the effects of dementia on caregivers:

– Biggest challenges: Emotional stress, physical stress, time management, finances and lack of knowledge about the disease topped the list of biggest challenges for survey participants.

– Prominent feelings: Many caregivers expressed feelings of guilt and isolation. Yet they also noted a better perspective on life and reminders of why they love each other. Non-caregivers reported a fear of Alzheimer’s diagnosis and death.

– Non-caregiver outlook: Nearly three-fourths of non-caregivers would want a professional caregiver. However, just 15% are financially prepared to have one. They also worry more about burdening loved ones if they were diagnosed with dementia.