Want to learn more about the nature of caregiving for people with dementia but don’t know where to start? Looking for solidarity with other people who also have a loved one with dementia? Here we have compiled a diverse reading list on the topic, ranging from informational guides and academic articles to anecdotes and opinion pieces.

Caregiving Guides:

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Other Dementias, and Memory Loss, 6th edition, by Nancy L. Mace and Peter V. Rabins

The latest edition of this care guide provides practical tips on how to improve the lives of people with dementia and also addresses caregivers who cope with their own emotions and needs. A great comprehensive resource on caregiving.

Creating Moments of Joy Along the Alzheimer’s Journey: A Guide for Families and Caregivers, 5th edition, by Jolene Brackey

This book includes practical advice for family members and caregivers who want to instill hope

and encouragement among each other and their loved ones experiencing Alzheimer’s. This text focuses more on bringing about joy among people with dementia as they undergo this journey alongside their family.

Academic Articles:

A patient’s experience in dementia care

Uncertainties in Dementia: What Do People with Dementia Experience?

Don’t Forget About Me!: Decision Making by People with Dementiaa

Opinion Pieces:

‘We Are Going to Keep You Safe, Even if It Kills Your Spirit’

This New York Times opinion piece by Katie Engelhart, a freelance journalist who has reported extensively on aging, explores the impact of the COVID-19 pandemic on caregiving. If you were moved by this piece, check out her other work!

Photographing the Beauty of My Mother’s Decline

Cheryle St. Onge, an artist and educator, shares an intimate series of photos depicting her mother’s dementia progression.

The Unending Indignities of Alzheimer’s

Jeneen Interlandi, a member of the New York Times editorial board, crafts a poignant and personal reflection on her experience having a father with dementia while exposing the country’s failure to provide proper care to its growing elderly population.