The Reasons Why Alzheimer's and Dementia Caregivers Are So Stressed

Alissa Sauer
By Alissa SauerJanuary 18, 2019

There are approximately 16 million unpaid caregivers caring for someone with Alzheimer’s disease or dementia in the United States. With the incidence of dementia expected to double over the coming decades, the number of dementia caregivers will also increase.

Learn more about the caregiving burden in the U.S. and how the disease places a significant financial, mental and physical strain on dementia caregivers.

The Significant Stress Placed on Dementia Caregivers

Nancy Daly is no stranger to caregiver stress. She cared for her late mother who had dementia for more than two years, regularly flying from her home in California to her mother in Maryland. “It was as if my entire childhood was erased when she did not know me. But I had to grit my teeth and bear it. It was my job to be there.”

Dementia caregivers have reported higher levels of stress than other unpaid caregivers, most likely due to the progressive nature of the disease which eventually calls for around-the-clock care.

Elena Fazio, a health scientist administrator at the National Institute on Aging says, “There’s not an opportunity for respite. [People with dementia] have a host of behavioral symptoms that make it more complicated.” She also notes that caregivers have to worry about the mental and physical safety of their loved one and that the nature of the disease increases the risk for anxiety and depression.

A survey by the Associated Press and the NORC Center for Public Affairs Research also found that 33% of caregivers struggle to maintain their own health and have skipped personal doctor visits because of caregiving duties. This is especially problematic, given that 34% of dementia caregivers are 65 or older.

In addition to the mental and physical stress of dementia caregiving, there is also financial stress. Being a caregiver is incredibly expensive and can have a negative impact on career development. In fact, a survey from USAgainstAlzheimer’s found that 60% of dementia caregivers reported financial problems because of their caregiving role.

Ways to Respond to the Caregiver Burden

The evidence of a heavy burden for dementia caregivers is overwhelming. However, there are things caregivers can do to help relieve stress.

A study in the Alzheimer’s and Dementia journal found that emotional-awareness and mindfulness training can ease caregiver stress. The National Institutes of Health is also examining the effects of stress management training and how it can reduce depression and even increase caregivers’ mental health.

Ruth Drew is a counselor who oversees the Alzheimer’s Association caregiver hotline. She states that sometimes just talking about the difficulties that come from caregiving can be “life-giving and lifesaving.”

“There’s nothing like talking to somebody else who’s been where you are.”

How do you cope with caregiving stress in your life? In what other ways can dementia caregivers handle stress? We’d like to hear your suggestions in the comments below.

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Alissa Sauer

Alissa Sauer

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