A harsh reality inspired Marc E. Agronin, a geriatric psychiatrist and expert on dementia, to write his latest book.
“It became very clear early on in my career that caregivers needed help,” said Agronin, vice president for behavioral health and clinical research at Miami Jewish Health Systems. “They were struggling and getting frustrated simply because they didn’t have enough information.”
Agronin’s new book, “The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer’s Disease and Other Neurocognitive Disorders,” provides the written support caregivers badly need. Agronin will appear at 8 p.m. Tuesday at Books & Books in Coral Gables.
Destined to become a caregiving bible, the book is as practical as a manual and as thorough as a dictionary. In easy-to-read language, it draws on years of Agronin’s experiences and provides detailed definitions and resources for all those spouses, relatives, friends and neighbors who assist those afflicted with the array of memory-robbing diseases.
The goal, Agronin added, was to have a “user-friendly” tome that would aid caregivers while also “incorporating the struggles and the poetry of caregiving.” In many ways, it’s a hand up and a shoulder to cry on.
In the chapter Caring for the Caregiver, for example, he explores the myriad feelings — and daily disruptions — that are far too common with families struggling to care for a loved one with memory loss. “The resultant grief, frustration, confusion, anger and resentment can be overwhelming and can trigger unresolved feelings or past conflicts with the affected person or with other caregivers,” he writes.
About 34.2 million Americans provide unpaid care to an adult 40 or older, according to the Family Caregiver Alliance and AARP. Of those, 15.7 million care for someone who has Alzheimer’s or some other form of dementia. While the majority care for just one adult, 15 percent care for two adults and 3 percent for at least three.
The value of services provided by these informal caregivers is estimated at $470 billion. Of that, it is estimated about $217 million is provided for those suffering from some form of memory loss.
Most forms of dementia, Agronin said, proceed on a “slow course” — that is, patients may suffer from memory loss for eight to 12 years, and sometimes longer. As a result, caregivers are often called upon for the long haul. So it’s not at all unusual for Agronin to see the same caregiver over a period of years.
In fact, “most of what we do at the memory center is beyond diagnosis,” he added. “We also provide care for the caregiver.”
Some degree of depression among caregivers is not unusual. “It’s very, very tough,” he said. “It can bring out the best or the worst in an individual, and it can bring families together or push them apart.”
Agronin is a major force behind the future EmpathiCare Village at Miami Jewish Health, a state-of-the-art residential complex expected to open in 2021 as a support residence for individuals with Alzheimer’s and other memory-related disorders. As the population ages, neurocognitive disease is expected to double worldwide within the next 50 years, which could make the concept of residential support a prescient idea. What’s more, experimental treatments for Alzheimer’s have failed to show any benefits.
Yet, Agronin offers words of support for those concerned with the effects of this silver tsunami of memory loss. The rate of dementia in the U.S. appears to be declining, perhaps a result of a healthier lifestyle by baby boomers who are more conscious of moderate physical exercise, mental and social stimulation, and sticking to a Mediterranean diet full of fruit, vegetables, whole grains and olive oil.
“I always tell people there are no magic cures,” he said, “but there is a brain-healthy lifestyle that everyone can do without great expense.”
If you go
What: Marc. D. Agronin presents “The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer’s Disease and Other Neurocognitive Disorders”
When: 8 p.m. Tuesday, Books & Books, 265 Aragon Ave., Coral Gables