When you’re caring for someone, that puts you in the role of advocate and I’ve found that the best way to understand the options for the person you’re caring for is to educate yourself.
You can’t rely on a neuropsychiatrist who disregards everything in a patient’s history that could explain some or all of their symptoms and relies on intimidation tactics to enforce compliance in a testing process they haven’t explained in a way that ensures the patient understands the task, then promptly diagnoses Alzheimer’s and sends you on your way with no explanation or follow up… But I digress.
As a carer, you’re entrusted to make the best decisions for the person you’re caring for, decisions that align with their values and are made alongside them; decisions that are made with and/or for them, not at them. You need to know what questions to ask and when, and you need to be able to weigh up the costs and benefits of treatments, and you need to somehow find a way to look after yourself in the process.
I’ve read a bunch of books about dementia but this is the first one I’ve wanted to talk about. It actually answered questions I’ve had that other books skirt around but ultimately raise more questions.
This book explains dementia in a way that’s easy to understand. This is the first time I’ve had someone explain why there isn’t medication that can reverse or at least stop the progression of dementia and it made sense. I particularly liked the way the symptoms are explained.
Dementia occurs when a disease or progressive processes cause damage, and brain function is impaired enough to impact everyday life. The symptoms of dementia are the result of a brain that is no longer able to correctly take in information, interpret it, and act on it. Dementia is a “syndrome,” or a collection of symptoms, and it can be caused by many different diseases.
Having something like this to hold onto when symptoms lead to frustration provides much needed perspective.
I learned a lot of useful information, things that should be explained by doctors but aren’t. For example, I didn’t realise that mild cognitive impairment (MCI) doesn’t automatically mean someone will progress to dementia. In fact, most don’t. It’s also made clear that memory loss doesn’t automatically equal dementia; other factors that may contribute to this are “lack of sleep, medications someone is taking, or anxiety, which can be fixed.”
One of my favourite things about this book is that it highlights that dementia risk isn’t equal. Racism, poverty, stress and whether you have access to education and preventative healthcare all have a bearing on your risk, despite the lifestyle strategies you may be employing. It’s clear that systems have a role to play in prevention.
Understanding health through an equality lens means considering gender, race, and disability, and how they intersect. It means integrating poverty, discrimination, and healthcare access as central when developing models of healthcare.
I’m not sure if this was a test or not but the list of ten brain healthy foods only had eight bullet points, which could be stretched to nine foods if “fish, poultry” are counted as two.
If your future health planning looks pretty lazy overall with a dash of it ain’t broke yet, I have good news for you. Many of the tips, especially around lifestyle decisions, in this book that could help prevent dementia are also good for a bunch of other conditions so a single good choice is a protective measure for many.
This book is intended to be read before someone you love is diagnosed with dementia. Given the prevalence and, let’s face it, how busy you are, it’s likely you won’t even look for this book until after you meet someone living with dementia. This has a lot of good information and it does cover some of what to expect after a diagnosis but I and I’m sure many others would benefit from a sequel, After Dementia.
Thank you so much to NetGalley and HCI Books for the opportunity to read this book.
Once Upon a Blurb
Structured around 20 questions you need to ask to help prevent, prepare, and cope, this book is a friendly, authoritative guide for anyone facing dementia and those who care for them. Exploring why disease is a social construct just as much as a biological construct, it helps us understand what it means to live with or care for someone with dementia.
How do I know if I have dementia, and how will I live with it if I do? Can people with dementia consent to sex? Can they choose euthanasia for their future selves? And can we prevent or push back its onset?
Chances are you know someone with dementia, but how well do you really understand the condition? Dementia is a complex interplay of biological, social, and psychological factors, and understanding it means understanding more about society and ourselves.
Approaching the topic through 20 insightful questions, geriatrician Dr. Kate Gregorevic explains the physical state of dementia, how to relate the diagnosis to real life, what questions to ask your doctor, strategies for preventing the condition, and how we can make our homes and society better for people with dementia.
While this book tackles some uncomfortable questions, its purpose is to help—to prevent, to prepare, to cope and to understand—and provide you with strategies for moving forward.
Schizanthus Nerd 