Two Excellent Resources That Can Help Caregivers Better Understand Dementia
When my mother was diagnosed in a middle stage of Alzheimer’s disease, I found myself scrambling to find resources to help me understand what was happening to Mom physically and what I should be prepared to do as a caregiver. Quite frankly, I was looking for a complete “one-stop” resource that covered the basics of Alzheimer’s caregiving since I really didn’t have any extra time and energy to continually search for information. Since then, I’ve started sharing these suggestions with friends who have a loved one diagnosed with dementia.
So where should you look? Some on-line resources can provide good information for caregivers. For instance, Coach Frank Broyles, the emeritus athletic director of the University of Arkansas Razorbacks, has developed a “playbook” based on what he learned in caregiving for his wife, Barbara. In the preface, Coach Broyles writes, “I had many questions and spent a lot of time looking for answers before I could put together my game plan. This is what I learned…. This ‘Playbook for Alzheimer’s Caregivers’ is a social model, not a medical model (doing things with her, not for her). It was written to give you practical tips to help guide you in taking care of your loved one with Alzheimer’s disease.”
The playbook is very readable since it’s written in layman’s terms and is organized by the three stages of Alzheimer’s – early stage, middle stage, and late stage. Each of these sections is broken down into several categories – “pre-game planning,” which describes what happens during that stage; “coaches and special teams,” which discusses finding a doctor and developing a support team; “playing offense,” which describes what you should be doing as a caregiver; “playing defense,” which discusses what you will be seeing happen in the loved one and steps that you can take during that stage; and “the training table,” which describes special issues, such as eating. In addition, the playbook provides a list of resources that can be helpful for caregivers. I’d suggest using this document in conjunction with your own journal so that you can develop your own “playbook” concerning what’s happening with your loved one based on the information that Coach Broyles has provided. You can download Coach Broyles’ playbook for free by clicking here.
Coach Broyles’ playbook was not available when I had to step into a caregiving role with Mom. Instead, a friend whose husband had early onset Alzheimer’s suggested the book, “The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer's Disease, Related Dementing Illnesses, and Memory Loss in Later Life” by Nancy L. Mace and Peter V. Rabins. Upon purchasing this book, I dove into the chapters which really described the challenges that Mom and my family faced. This book, which is now in its fourth edition, is written from a more clinical point of view when compared with Coach Broyles’ playbook. The book features chapters that describe the following: defining dementia; getting medical help for the impaired person; characteristic problems of dementia; problems in independent living; problems arising in daily care; medical problems; problems of behavior; problems of mood; special arrangements if you become ill; getting outside help; you and the impaired person as parts of a family; how caring for an impaired person affects you; caring for yourself; for children and teenagers; financial and legal issues; nursing homes and other living arrangements; brain disorders and the causes of dementia; and research in dementia. You can purchase this book through any major retailer, such as Amazon or Barnes and Noble.
These two resources will provide a wealth of information that can help provide a caregiver with a foundational level of understanding. And this knowledge will help you know what to expect and what to plan for so you can be the best caregiver possible.