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The Emotional Toll of Dementia Caregiving

We know that caregivers can suffer emotionally, mentally and physically from the rigors of caring for a loved one with dementia, but the emotional toll of it often goes unmentioned. For the roughly 5.5M Americans that have dementia, their illness actually costs more to treat ($259B) than cancer ($77B) and heart disease ($102B) combined. But behind these numbers is a hidden – and very real – human cost to the family caregivers who help those with dementia go about their days.
 
Given that one in four adults serve as a caregiver for a loved one with Alzheimer’s disease and other forms of dementia it is easy to see that this issue has serious implications for the country as a whole. That’s why we conducted a national study with 670 family caregivers to find what this emotional cost actually equates to. Some of the more interesting findings were:
 
Caregiver burnout is very real: Dementia caregivers were seven times more likely to experience physical, emotional and mental exhaustion from caregiving than those who do not care for loved ones with dementia. Also, they were three times more likely to feel extreme stress from their caregiving responsibilities. Given that one in four family members care for loved ones with dementia, this rate of burnout poses a very real danger to the sustainability of caregiving at the family level.

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Caregivers reported high levels of stress from two separate sources.

1. Watching their loved one decline. Thirty-eight percent of survey participants reported that as the disease steals away their loved one, it causes them high levels of stress. Dementia, especially Alzheimer’s disease, causes a long, slow deterioration of mental and physical capacity. Watching this is painful and takes an enormous toll on caregivers who must try to remain positive and upbeat while caring for a loved one who is declining before their very eyes.

2. Juggling work and caregiving responsibilities. Thirty-eight percent of survey respondents said that the stress from juggling work and caregiving responsibilities is a heavy burden. Caregiving responsibilities can interrupt work on a daily basis, cause lost hours and days on the job and in some cases cause lost promotions and wages. In fact, a study conducted recently at Stanford underscores this, stating that women are at higher risk “for lowering or exiting” their career trajectory owing to caregiver demands. Even though they do not comprise the majority of dementia caregivers, men report that they feel the work/caregiver pressure more acutely than women. Our survey showed that men were 21 percent more likely to feel stressed from juggling work and caregiving responsibilities.

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Women bear the brunt of caregiving: For anyone who has tried to balance the multiple demands of raising children, caring for elderly parents and holding down a job, it may come as no surprise that women feel more guilt in their caregiving duties than men. Our survey showed that women are twice as likely to feel extreme guilt for not tending to their own family and children while serving as a caregiver. In fact, women who care for a loved one with dementia were 61 percent more likely to feel extreme guilt than those caring for family members without dementia. This may provide insight into the enormous commitment necessary to care for the ever-escalating needs of those suffering with dementia.

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The results of our survey indicate a real need for better planning, increased education into respite services, and more workplace programs for family caregivers.
 
The toll that caregiving exacts on those caring for loved ones with dementia, including Alzheimer’s disease, deserves national attention and innovative solutions. Professional at-home caregivers who are specifically trained to work with those who suffer from dementia and Alzheimer’s disease present a significant solution to the problem. Understanding the challenges of dementia caregiving are is one challenge; on the other end of the spectrum is learning how to become resilient from caregiver burnout. Either way, employers in the private, public and nonprofit sectors need to be aware of this issue, become sensitive to caregiver burnout and make accommodations to support employees who are struggling to balance work, life and caregiving duties.

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