As a parent or close family member ages, you could be thrust into the role of primary caregiver, often with minimal experience of what this entails. You might feel overwhelmed or unsure of how to cope with your loved one’s increasing needs, especially in the case of memory loss and cognitive decline from Alzheimer’s or dementia.
In 2019, an estimated 5.8 million Americans—one in 10 over the age of 65—suffered from this illness, the Alzheimer’s Association reports. Moreover, as the condition progresses, symptoms like disorientation, confusion, anxiety, impaired speech, and loss of motor skills or mobility can make independent living difficult for Alzheimer’s patients.
This is where you come in as a primary caregiver, but you’re not in this alone. These five books run the gamut from informative and practical, to relatable and supportive, to humorous and poignant. No matter where you are as a primary caregiver, turn to these resources for help, encouragement, inspiration, and even a laugh or two.
While the demands and challenges of Alzheimer’s care often seem to take center stage, Jolene Brackey’s mission is to inspire caregivers to seek out joyful pockets for themselves and their loved ones. She points out that since those with memory loss experience life as brief moments in time, one of a caregiver’s most rewarding jobs is to fill those moments with hope, enjoyment, love, warmth, and positivity. The stress and uncertainties of this illness can feel all-consuming at times, but as Brackey reiterates, joy can still thrive if you are just able to look for it, create it and then hold onto it.
When author Susan Straley learned that George, her husband of almost 40 years, had dementia, she was frantic, heartbroken, and angry. Her dreams for retirement suddenly felt out of reach as the idea of being her spouse’s reluctant caregiver loomed in the future. So on their anniversary, she hatched a plan to travel with George on a road trip across the United States. Narrated through a series of honest, vulnerable, lighthearted, and impactful journal entries, Straley’s book guides the reader on a journey toward both acceptance and recommitment as the partner of someone with dementia.
Based on her own experiences—personally and professionally—in the caregiver trenches, Marisa Pasquini has written this in-depth handbook to cover all the nuts and bolts of dementia home care. With real-life stories, useful advice, and insights earned directly from the frontlines, this is the manual that caregivers and family members can count on to help them navigate the questions, anxieties, frustrations, and triumphs that will be encountered in this new phase of life. The book is intentionally short and concise, but it does not skimp on information and resources that primary caregivers need.
Part witty comic book and part emotional memoir, Roz Chast, a prolific cartoonist for The New Yorker, illustrates the eccentricities and tenderness of her relationship with both parents near the end of their lives. From her father’s symptoms of dementia to her mother’s overbearing moods and even to their transition into assisted living, Chast describes the nuances of a parent and child-turned-caregiver dynamic in authentic, relatable terms. For those who prefer to laugh and smile their way through complicated situations, this book is the dose of blunt but sincere humor that you are looking for.
If you want a hands-on tool to keep your loved one stimulated, occupied, and de-stressed, this coloring book from Dementia Activity Studio is the answer. With basic shapes, designs, and patterns, this coloring book is specifically customized to how the Alzheimer’s brain functions to strengthen mental recall and repetition. So if your loved one starts to feel agitated—or you as a caregiver could just use a break—turn to one of this book’s 90 pages of material, find a box of crayons or markers, and transform the kitchen table into a creative workshop. Art is a proven form of therapy, after all.
Books for Primary Caregivers
Learning and laughing can be extremely beneficial for primary caregivers. It can be a challenging road when you have a loved one with dementia, these books will offer insights, tips, and humor to lighten your load.