“We Have Received a Diagnosis, but WHERE DO WE BEGIN?”
Dementia Support:
6 MUST-READ Books for Family Caregivers
Caring for someone with dementia poses a complex, ever-evolving challenge that few are equipped to handle alone. Experts say that for the well-being of both the person with dementia and the person caring for them, caregivers MUST first understand the dynamics of the disease.
Once understood, caregivers NEED a support system in place and NEED to take advantage of the resources available to them. Avoiding “caregiver burnout” is essential and is equally important for both the affected individual and the caregiver.
Resources can include caregiver support groups, podcasts, videos, and various books. Here are some of the best-selling published works designed to help caregivers better understand the disease and to more effectively navigate the maze of dementia care.
1. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias (A Johns Hopkins Press Health Book) by Nancy L. Mace and Peter V. Rabins
This book covers what family caregivers can do to optimize the lives of the people they care for as well as their own lives. One cannot thrive without the other? It addresses resources such as home care aides, smart apps, and preventive techniques and therapies.
2. The Empowered Caregiver’s Guide to Dementia: Understand and Manage the Disease, Plan for Caring and Financial Challenges, and Balance Your Personal Needs to Thrive (Not Just Survive) by Sheila Keene-Lund
This book offers strategies and insights for managing the multidimensional pulls of caregiving while maintaining personal and spiritual well-being. The book identifies the emotional calculus of guilt, denial, anger, forgiveness, gratitude, self-awareness, resiliency, and intimacy that caregivers need to acknowledge and understand.
There is an emphasis on making time for self-care, and giving grace is essential for maintaining good mental health and a joyful spirit.
3. Dementia Caregiver’s Respite 2-In-1 Value: The Dementia Caregiver’s Survival Guide + Dementia Caregiving – Effective Strategies for Dementia Care and Self-Care by Janet G. Cruz
This two-in-one set of guides is for caregivers. It provides practical how-to’s for managing increasingly challenging behaviors presented by the patient, communicating effectively without diminishing their dignity, and creating a safe and comfortable environment that empowers both parties.
The book provides tips for the caregiver to balance their own needs with those of the patient.
4. Did I Remember to Tell You? A Real-Life Guidebook for Dementia Family Caregivers by Pam Kovacs Johnson
The author of this book uses her own experience in caring for her father to give readers the perspective and language they need to speak compassionately, cope more effectively, and to expect the unexpected in successfully making it from one day to the next.
The real-life stories illustrate that dementia and caring for people with it is a journey that must be experienced with an open mind and heart, one day at a time.
5. The Dementia Caregiver’s Survival Guide: An 11-Step Plan to Understand The Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout by Janet G. Cruz
This book informs caregivers that dementia affects more than just memories; it affects behaviors and emotions as well. There is an emphasis on knowing what the disease is, and helps caregivers understand what’s happening and how to formulate a game plan for what’s to come. Readers are taken step-by-step to identify positive ways, rather than negative, when responding to whatever challenges arise.
The book shares insights into what both the patient is experiencing and what caregivers are feeling and bridges the two to offer ideas around opportunities for meaningful human connection and fulfillment in serving someone in need.
6. The Caregiver’s Guide to Dementia: Practical Advice for Caring for Yourself and Your Loved One by Gail Weatherill
This book helps caregivers to focus on empowering and celebrating a patient’s ability, rather than disability, as-well-as their emphasizing personhood and lifestyle. Personhood incorporates a person’s life history, routines, and preferences into any personal care plan. Lifestyle refers to setting goals and creating support activities in nutrition, socialization, wellness, and awareness.
There are ideas for maximizing cognitive retention and minimizing cognitive loss, as-well-as caregiver wellness practices and where to find resources, and suggested questions to ask health care and other professionals to get the most helpful information for providing care.
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