Introduction to this section:
The objective is to honestly assess — not sell or slam — books on the market. The title will link to Amazon, because it’s easy for everyone, but feel free to support your local independent bookstore!
What if it’s Not Alzheimer’s? Edited by Lisa Radin and Gary Radin (2003/updated)
Revisions over the years (especially chapters on pharmaceutical therapies) sustain this book’s relevance as a guide to coping with any type of dementia. My first read, I’ll admit, frustrated me. But my husband had just been diagnosed with Frontotemporal dementia, and I felt like the victim of a hit-and-run, lying in the street mumbling what just happened? (or something less polite) after getting clipped by an 18-wheeler. Nothing gave me the information I wanted: How to help my husband get well. On some level, everything seemed too basic, confusing, irrelevant, or inadequate. But when I circled back, I wished I’d been able to absorb more content initially. Good stuff here.
What I like:
It begins with a concise overview of different types of dementia, The structure is clear (Part 1: Medical; Part 2: Managing Daily Care; Part 3: Caregiver Resources), each section has a distinct focus, and chapters are written by a cadre of notable scientists and physicians — all leaders in the field.
…one of the most important differences between the frontotemporal dementia syndromes and Alzheimer’s disease is that the frontal dementias primarily affect behavior, often early and severely. It is this factor, perhaps more than any other, that makes caring for a frontal dementia sufferer so much more of a challenge.
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Loss of self-awareness is one of the hallmarks of FTD…. In fact, when frontal dementia patients are asked to describe their current personality and behaviors, many will state that there is “nothing wrong with them” and will describe themselves as they once were, even misreporting factual information about themselves.
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It is important to realize that this is not a case of psychological denial, as if the patient refuses to admit changes that could be perceived as shortcomings. This is, in fact, a brain-based disorder that prevents patients from accurately perceiving and interpreting new information about their behavior that would challenge their longstanding self-image.
A caregiver’s attempts to hold up a mirror to the patient will often result in escalating a fruitless power struggle.
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This lack of insight actually presents much more of a burden for the caregiver than for the patient, who is oblivious to what would probably be devastating information about their progressive loss of abilities and the dramatic change from their previously held standards of behavior.
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You are loving someone, living with someone, looking at someone who has become somebody else. This requires a tremendous supply of courage to keep going forward.
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Instead of getting over it, which seems impossible because it is, those who are experiencing a great loss need to “get on with it.” This simply means getting on with life: as it is, each minute, each hour, each day.
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Life is what you do with fifteen minutes.