Relocations: Unpaid caregivers are ‘the invisible second patient’

Photo from Public Domain Pictures
January 23, 2025

They are bearing the high costs of dementia care

By Herbert Rothschild

There are almost 7 million Americans afflicted with Alzheimer’s disease. That number is projected to reach 13 million by 2050. The figures I found for the number of unpaid caregivers of those afflicted with all forms of dementia ranged from 11 million to 48 million. The burden they shoulder is heavy — emotionally, physically, socially and financially.

The Alzheimer’s Association maintains a discussion board called ALZConnected. It’s “an online community where people can come together to share questions, experiences and receive support from others impacted by Alzheimer’s disease and other dementias.” The following are three recent posts on the discussion board, lightly edited for punctuation.

Herb Rothschild Relocations
Herbert Rothschild

“Out of necessity, DH (Dear Husband) is Stage 6. It’s just too hard to do things with him. He won’t tolerate caregivers so it’s mostly all on me except for family helping at times. Won’t go to day care. Just going to the grocery store alone is rare. Taking him out in public is hard because his speech is garbled and he tries to talk to strangers, etc. I’m finding I just choose to stay home with him almost all the time. I do online watercolor lessons. Take a walk when I can. We go take care of our horses every day. But no socializing. None. (Except my mom and sister.) It’s strange to say that I’m getting used to the solitude. It’s hard to imagine interacting with people, I wonder if this is permanently changing me. Does anyone else feel this way?”

“Oh, yes, I totally relate to this. I am beginning to feel so isolated and I am fighting it but I can feel my strength running out. Everything is becoming so hard, just to get dressed and then get into the car, to figure out where to go, and then it sweeps over me, why bother? But I push myself and gently coax my DH and puppy. I’m so tired but I don’t want to sleep during the day. I want to pursue my sewing, my reading, my writing and painting; to me it’s vital to keep something going, but I’m so tired. My DH also won’t tolerate caregivers or day care and isn’t really happy if our daughter comes here. It’s so hard, and I wonder if I will ever be able to mix again, laugh again or think clearly again.”

“I feel the same way … just want to avoid everyone and can’t imagine laughing and being happy ever again. I worry about losing my vocabulary … can’t read a book because DH is jealous of the time I would spend on something other than him (this has been the case for years and years). His constant negativity has turned me into a toxic, sad person that I can’t imagine anyone wanting to be around. I have given up painting in the daytime because he can’t handle my ‘selfishness,’ and I always plan to go into my studio at night after he goes to bed, but like Biggles (a previous poster), I am just so tired. I dream of just jumping into the car and going grocery shopping without it being the ordeal that it has become. I think I need to start taking drugs!”

Is it any wonder that, in an article called “Caring for the Caregivers” in the January-February issue of Harvard Magazine, such caregivers are called the “invisible second patient”? Some of you who are reading this have been such caregivers. And I’d guess that all of us know of someone who is or has been.

In surveys, money worries top the list of stressors that caregivers must cope with. Paid in-home help is expensive, as are residential facilities. The lifetime cost of someone with dementia, including the value of unpaid caregiving, is about $400,000. Medicare will cover medical treatment and drugs but not custodial care. Long-term care insurance is expensive, so only a small minority of Americans carry it. A last resort is to denude the patient of assets to qualify for Medicaid. We have a friend who was almost reduced to that expedient before her husband died.

Along with a sense of obligation, the high cost of professional care is the reason why spouses or children choose to be unpaid caregivers. That doesn’t banish their financial worry, however, because they know that at some point the task may be beyond their strength.

Meanwhile, they must cope with emotional stressors that can take a high toll on their physical and mental well-being. The social isolation expressed in all three of the quoted posts is a main one. That, plus constantly subordinating oneself to the needs and demands of someone unable to understand how burdensome they are changes a person. My wife has a high school friend who spent years in that situation. She told Deborah that after her husband died, she had to rediscover who she was.

Happily, the world hasn’t been waiting for me to flag the need to care for caregivers. A good place to start from scratch is AARP’s Dementia Caregiver’s Guide. AARP has developed other significant tools. For example, in collaboration with United Way it has a state-by-state online guide to resources. Here is the link to the Oregon guide. The Aging and Resource Connection of Oregon is another gateway to resources. Through it one can reach the Rogue Valley Council of Governments website to access local help. There one will find a page of Senior and Disability Services, which include “Access to Caregiver Support,” “Powerful Tools for Caregivers” and “Family Caregiver Respite.”

Despite such programs, unpaid caregivers aren’t getting the help they need. For example, according to “Respite Services: A Critical Support for Family Caregivers,” a 2024 report from the AARP Public Policy Institute, while nearly 4 in 10 family caregivers want respite services, only 14% receive them.  

The Centers for Medicare & Medicaid Services is working on a more comprehensive nationwide support program. Last July 1, it launched the Guiding an Improved Dementia Experience (GUIDE) Model and chose 390 organizations to test the model for eight years. “The GUIDE Model focuses on comprehensive, coordinated dementia care and aims to improve quality of life for people with dementia, reduce strain on their unpaid caregivers, and enable people with dementia to remain in their homes and communities. It will achieve these goals through Medicare payments for a comprehensive package of care coordination and care management, caregiver education and support, and respite services.”

Because seniors are the most powerful voting bloc in the U.S. and AARP is perhaps the nation’s most powerful lobby, this effort, initiated by the Biden administration, is likely to withstand the coming Republican assault on federally funded human services. For the sake of those who wrote the posts I quoted above, and for the millions who share their plight, let’s hope so.

Herbert Rothschild’s columns appear Fridays. Opinions expressed in them represent the author’s views. Email Rothschild at [email protected].

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