Study Reveals Toll of Dementia Care on Caregivers

SAN FRANCISCO (June 1, 2017)—Home Care Assistance, a provider of in-home care for seniors, released a study they commissioned through Research Now, illuminating the emotional impact of dementia caregiving in the United States. With one in four adults serving as a caregiver for an aging loved one and with Alzheimer’s and other forms of dementia surging among our rapidly aging population, the unrelenting stress and emotional toll of witnessing the “long goodbye” stands to pose a health care challenge of its own.

With roughly 5.5 million Americans living with dementia, the illness actually costs more to care for ($259 billion) than cancer ($77 billion) and heart disease ($102 billion) combined. Behind these numbers lies a hidden, but very real, emotional cost to family caregivers who help those with Alzheimer’s and other dementias manage daily living.

Based on an analysis of 670 family caregivers in the U.S. surveyed between May 8 and 11 of this year, the following results were concluded:

Dementia caregivers experience higher rates of physical, emotional and mental burnout. Often referred to as “caregiver burnout,” the survey found that dementia caregivers were seven times more likely to experience daily physical, emotional and mental exhaustion from caregiving than non-dementia caregivers. The survey also found that dementia caregivers were three times more likely to feel extreme stress from their caregiving responsibilities than other types of caregivers.

Dementia caregivers feel the most stress from watching their loved one decline, while other caregivers are most stressed from juggling work and care responsibilities. In contrast to other types of care that may have a focus on recovery and rehabilitation, caring for someone with dementia can oftentimes be more challenging since the person is facing a long, inevitable decline. Based on the survey results, 38 percent of those caring for a loved one with dementia feel the most stress from watching their loved one decline, while 33 percent of those caring for a loved one without dementia feel the most stress from having to juggle their job and caregiving responsibilities.

When looking at gender breakdowns of stress, the survey showed that male dementia caregivers were 21 percent more likely to feel stressed from having to juggle their job and caregiving responsibilities than female dementia caregivers.

When it comes to managing child and senior care, female dementia caregivers experience higher rates of caregiver guilt. Numerous studies have shown the disproportionate impact Alzheimer’s and other dementias have on women. Not only do women make up two-thirds of Americans diagnosed with Alzheimer’s, but they also make up two-thirds of the dementia caregiver demographic. Furthermore, researchers at Stanford recently discovered that women are at higher risk “for lowering or exiting their career trajectory owing to caregiver demands.”

According to Home Care Assistance’s survey, female dementia caregivers were twice as likely to feel extreme guilt for not tending to their own family and children’s needs than male dementia caregivers. More so, there were some significant discrepancies seen between females that were caring for a loved one with dementia and females that were caring for a loved one with another disease. Female dementia caregivers were 61 percent more likely to feel extreme guilt for not tending to their own family and children’s needs than non-dementia female caregivers.

“We’re facing an impending health crisis not only for the tens of millions living with Alzheimer’s and other forms of dementia, but also for the loved ones that care for them,” said Lily Sarafan, CEO of Home Care Assistance. “Reliable data on the spectrum of family caregiver experiences, as well as solutions for caregivers to effectively manage their own health and wellness, are essential components of the broader care ecosystem. Our hope is that breathtaking scientific advances and lifespan gains are accompanied by thoughtful leadership and policies to address the realities of caregiving.”

In acknowledgement of the heightened stresses of dementia caregiving, Home Care Assistance will be awarding respite care grants to 60 family caregivers. The program was launched in conjunction with its partnership with Maria Shriver’s Women’s Alzheimer’s Movement and Move for Minds, and is open to caregivers across the country.

To learn more or apply for a respite care grant, please visit: homecareassistance.com/moveforminds.

To view the complete findings around the emotional cost of dementia caregiving, download the full report here: homecareassistance.com/emotional-costs-of-dementia-caregiving.

Methodology

This survey was conducted online within the United States by Research Now on behalf of Home Care Assistance from May 8–11, 2017 among 670 family caregivers aged 18 and older. This online survey is not based on a probability sample and therefore no estimate of theoretical sampling error can be calculated. 

Visit homecareassistance.com for more information.