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Who’s Caring for the Caregiver?

Written By: Marc Rothman, MD

Every three seconds someone in the world is diagnosed with dementia, and in that same moment someone else, willingly or unwillingly becomes a caregiver.  Both people’s lives are instantly changed forever.  As a geriatrician I worry as much about the later as I do the former.  For their health, their well being and their resiliency to ensure what lies ahead. 

We have long known that caring for a loved one with dementia is extremely demanding, and so it’s no surprise that dementia caregivers have been shown to have poor health outcomes themselves. Caregivers often defer their own healthcare, putting off diagnostic testing and corrective surgeries.  Studies have shown that 30% to 40% of dementia caregivers are depressed and that the severity of their depression increases as dementia worsens. Other diseases are difficult to care for of course but we know that caring for a family member with dementia induces more anxiety (44%) than caring for a family member who suffered from a stroke (31%). 

When caregiving falls to a spouse they often become ‘solo caregivers’ who provide over 90% of the caregiving. These caregivers typically don’t ask for help because they’re convinced that they, and only they, have the wherewithal to provide care for their loved one. When these caregivers do ask for help family members tend to offer verbal and emotional support rather than hands-on help that would provide physical relief for the caregiver.

When we add the considerable financial impact many caregivers face from reduced or eliminated income, up to 60% of dementia caregivers experience high to very high-stress levels. It’s not hard to imagine that our health care system now has a caregiver at high-risk for adverse health outcomes. 

Unfortunately the caregiving dilemma is not going away. In fact, the World Health Organization estimates the 50-million people afflicted with dementia will almost double every 20 years so that in 2050, the world will have 131.5-million people with dementia requiring caregivers. 

What’s the Solution? 

Caregivers need support. Some communities have come together to provide support for caregivers through peer groups or local Villages that help caregivers find relief, help with transportation and access to their own healthcare.  But we can do more. 

Physicians often see dementia patients together with caregivers but spend all their time on the former. Sometimes just pulling caregivers aside and asking them how they are coping can open the door to more supportive services, a referral to social worker or links to local Area Agencies on Aging which can help families cope with dementia.  

Larger health systems can proactively identify caregivers with chronic diseases and engage them so that appointments aren’t cancelled and diagnostic tests not deferred.   Some states offer compensation to caregivers who, when the disease is more severe, are essentially functioning as private duty aides and attendants.  

Just as you can’t truly love a person until you learn to love yourself, caregivers cannot provide adequate care unless they take care of themselves first. 


References:

Alzheimer’s Disease International, “Dementia Statistics”

Next Avenue, “Costs Exploding for Alzheimer’s and Other Dementia,” Emily Guron, March 7, 2017

World Health Organization, Fact Sheet – Dementia, Key Facts, September 19, 2019.

Spousal Caregivers Are Caregiving Alone In The Last Years Of Life

Seniors Are Aging at Home with Help from a Village – DailyCaring 



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