After caring for a parent with deadly Alzheimer’s disease, I found Marc Agronin’s new book matched my observations and experience. In The Dementia Caregiver, Agronin, an adult and geriatric psychiatrist with significant credentials, shares what he’s learned from patients and their families, providing a valuable guide. Really, the book should be required reading for everyone over the age of sixty-five because of the likelihood of having to deal with Alzheimer’s firsthand — although the book is aimed more at those younger adults who will have to contend with the disease in their parents or grandparents.
But, to be accurate, The Dementia Caregiver is not just about Alzheimer’s, but about neurocognitive disorders overall. Agronin points out that the term neurocognitive disorder is becoming a replacement for dementia to reduce stigma and to emphasize the impact on both the brain and mind. And among these types of disorder, Alzheimer’s represents about seventy percent of cases; meanwhile, vascular dementia represents about ten to twenty percent, frontotemporal dementia about three to ten percent, and Lewy bodies dementia about five to seven percent.
Agronin devotes a chapter to each, explaining the differences between the various diseases, and showing that even two people with the same disease can experience them differently. The book is full of medical information, but Agronin writes in a readable style using everyday, accessible words.
And although the likelihood of experiencing Alzheimer’s disease increases with age, Agronin writes, doubling every five years after we reach the age of sixty-five, neurocognitive disorder can stem from other causes. These include head trauma, stroke, tumors, oxygen loss, and more.
While Agronin educates us on symtoms and features, he also shows us how to be good caregivers to someone with one of these horrible diseases. Because the medical differences can be significant, and the age of the patient can vary widely, the support provided by caregivers may also need to be different. However, Agronin writes, there are caregiving attributes that cross the spectrum of disorders that can be valuable in all situations. These are, he writes, empathy, creativity, and courage. I can attest to these, too, both for the patient and for maintaining the wellbeing of the caregiver.
Most of these neurocognitive disorders progress over time to diminish or remove the patient’s abilities. Agronin takes us through these stages, describing the changes and how the caregiver can react to them. The patient can also experience depression or anxiety or become extremely agitated, sometimes to a point of physical aggression. Here again, Agronin offers possible solutions or adaptations. He also includes very helpful information about the many pharmaceuticals available and how they differ from one another.
Another valuable aspect of The Dementia Caregiver is its advice to people who do not yet have a neurocognitive disease. Many older people are fearful of one day getting Alzheimer’s. Very fearful. Agronin describes in detail the steps one should take when he or she suspects the onset of memory issues in oneself or a loved one. Often it is not Alzheimer’s, he writes, but has some other medical explanation due to another condition that is frequently solvable.
Another common problem is that too often we delay even talking about the issue with our physician for fear that it is in fact Alzheimer’s. As difficult as it might be to bring up these concerns, early identification is important.
If the primary care doctor identifies possible disease through a variety of tests, Agronin suggests that the patient then seek a complete evaluation from an expert, such as a psychiatrist specializing in geriatrics or a neurologist. This will help to rule out other possible illnesses and confirm whether or not the person has a neurocognitive disorder. Agronin explains what this process entails.
Alzheimer’s and other neurocognitive disorders can be awful for our loved ones. And while in some cases the patients themselves may not have full knowledge of their growing incapacities, we as caregivers do. It can be painful to watch our loved ones go through neurocognitive changes because we know how different their new behaviors are. Agronin helps us handle this difficult challenge.
The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer’s Disease and Other Neurocognitive Disorders
Rowman & Littlefield, October 2015
Hardcover, 298 pages