A Caregiver's Guide to Dementia: An Unintended Journey

*New Edition with Updated dementia, dementia care, and resource information.*

According to the Alzheimer's Association, there are more than six million people living in the United States have Alzheimer's disease or some other form of dementia. Not reported in these statistics are the sixteen million family caregivers who, in total, contribute nineteen billion hours of unpaid care each year. This book addresses the needs and challenges faced by adult children and other family members who are scrambling to make sense of what is happening to themselves and the loved ones in their care. The author, an experienced medical and science writer known for her ability to clearly explain complex and emotionally sensitive topics, is also a former family caregiver herself. Using both personal narrative and well-researched, expert-verified content, she guides readers through the often-confusing and challenging world of dementia care. She carefully escorts caregivers through the basics of dementia as a brain disorder, its accompanying behaviors, the procedures used to diagnose and stage the disease, and the legal aspects of providing care for an adult who is no longer competent. She also covers topics not usually included in other books on dementia: family dynamics, caregiver burnout, elder abuse, incontinence, finances and paying for care, the challenges same-sex families face, and coping with the eventuality of death and estate management. Each chapter begins with a real-life vignette taken from the author's personal experience and concludes with "Frequently Asked Questions" and "Worksheets" sections. The FAQs tackle specific issues and situations that often make caregiving such a challenge. The worksheets are a tool to help readers organize, evaluate, and self-reflect. A glossary of terms, an appendix, and references for further reading give readers a command of the vocabulary clinicians use and access to valuable resources.

Janet Yagoda Shagam (Albuquerque, NM) is a freelance medical and science writer; a visiting professor at the Max Planck Institute in Göttingen, Germany; an artist and printmaker; and the coauthor (with Rebecca G. Rogers, MD, and Shelley Kleinschmidt) of Regaining Bladder Control: What Every Woman Needs to Know. She serves on the New Mexico Area Agency on Aging statewide Alzheimer's Task Force.