‘There is life after diagnosis’: Navigating the challenges of dementia care and support

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“Each human being you meet with any kind of dementia was a human being before they developed their dementia,” says dementia advocate Teepa Snow. Photo by Shutterstock.

As the population grows larger and lives longer, dementia diagnoses are becoming increasingly common. With an estimated 6.5 million Americans age 65 and older living with Alzheimer’s or dementia today — a number that stands to grow to 13.8 million by 2060 without a significant breakthrough in treatment — getting the proper support and care has become increasingly challenging. In 2021, more than 11 million family members and other unpaid caregivers provided an estimated 16 billion hours of care to people with Alzheimer’s or dementia. They are without compensation and mostly untrained, forced into a new reality and straddling two worlds.  

The work is exhausting, overwhelming, and with relatively little societal support. Professional care is expensive, and quality memory care facilities are prohibitively expensive. It’s estimated that by 2050, Medicare spending on people with Alzheimer’s will total a projected $458 billion — an increase of 192% from today’s spending levels — and account for nearly 1 in every 3 dollars of total estimated Medicare spending.

Jonathan Bastian talks with occupational therapist and dementia care advocate Teepa Snow about what it means to have a dementia diagnosis and what the latest research and potential cures are. In her book, “Understanding the Changing Brain: A Positive Approach to Dementia Care,” Snow explains why experienced care is so crucial — not just for the patient, but for the caregiver — and shares some best practices and approaches.  

“The outlook isn't as awful as it has been,” says Snow. “The tricky part is, as long as we have so much ignorance out there about this condition we call dementia, it's going to surprise people and make life miserable for them for quite some time until we start to help people recognize there is life after the diagnosis. We’ve just got to figure it out.” 

Jay Newton-Small with her father. Courtesy of Jay Newton-Small.

For Time correspondent Jay Newton-Small, the lack of societal support she encountered when it came to her own family’s experience with Alzheimer’s inspired her to come up with a solution. After her father's diagnosis, Newton-Small took a leave of absence to help with his care. She explains how caregiving affected her mother’s health and how her ability to tell her fathers story transformed his care when she needed to put him into a memory care facility. 

“I wanted people to know him, so I wrote one page — I kind of plastered the community with it and it really transformed his care,” she says. “The staff remembered it, and they told each other about it.” 

Newton-Small created and now runs MemoryWell, a national network of more than 350 journalists writing the life stories of those living with Alzheimer's and dementia.

“We tell their stories so they can be better introduced to their caregiving staff, whether they're in acute settings in hospitals, or whether they're in long term care settings,” Newton-Small says, “with the goal of being able to make those connections and build that empathy, which I think the system really, really lacks.”

Teepa Snow pictured here emphasizes that “until there’s a cure, there is care.” In her book, “Understanding the Changing Brain: A Positive Approach to Dementia Care,” author Teepa Snow says that, “one of the biggest mistakes we make is we set dementia support and care up as though it's like a job that anybody could do. I mean, how hard could it be? And it's like, the most difficult kind of work you can do.” Photo by courtesy of Teepa Snow.

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Andrea Brody