Using Storybooks to Teach Children and Adults About Alzheimer's Dementia
22,000 people aged 65 and older are living with Alzheimer’s. 16,000 caregivers provide care for someone with Alzheimer’s translating to 24 million hours of unpaid care at an estimated monetary value of $425 million.
Alzheimer’s dementia accounts for 60%+ of dementia cases. When a family member has Alzheimer’s, everyone in that family is affected, including children! Approximately 26.5 million caregivers in the U.S. provide care for someone with a dementia type disease like Alzheimer’s dementia and 48% of this population, are also caring for their children at the same time.
For more information, view the 2022 Alzheimer’s Disease Facts and Figures report at https://www.alz.org/alzheimers-dementia/facts-figures.
Impacts to Montana Families
With the increase in prevalence rates, many Montana children will know and interact with someone with Alzheimer’s. As the symptoms associated with Alzheimer’s progress, a person’s mood and personality changes often cause unusual and distressing behaviors. This creates stress on family caregivers and can have negative effects on a child’s emotions and behaviors. When interacting with an individual with Alzheimer’s, children may show signs of anxiety, confusion, and loss. They may also feel scared, guilty, upset, and embarrassed. When parents have knowledge and access to resources about Alzheimer’s dementia, they can support a child’s experience and decrease the likelihood these experiences will cause undue stress on the child and family.
Bibliotheraphy: An Evidence-Based Approach
To help children cope with significant life events, parents, educators, and other professionals have turned to developmental bibliotherapy, the practice of using storybooks to help children understand and cope with difficult experiences such as having a loved one with Alzheimer’s dementia.
How is Montana State University-Extension Addressing the Impacts of Alzheimer's on Children and Families?
Montana State University Extension has developed a storybook program for children and families who may be experiencing a loved one with Alzheimer’s dementia with the goal to provide supportive and easily accessible resources to parents and children across Montana.
Extension Agents, Childcare Providers, Teachers, Librarians, Activity Directors at long-term care facilities, Parents/Caregiver’s, Family Members, or anyone interested in using storybooks to help children and families understand Alzheimer’s disease.
Through storybooks, parents and children can learn about Alzheimer’s dementia (stages, behaviors, and positively ways to interact and communicate) and what their loved one may be experiencing.
Another way these storybooks support families is by providing parents with an understanding
of what their child may be experiencing and how they can support their social and
emotional wellbeing during this time. We hope by providing this resource, stronger
multigenerational relationships will be fostered across Montana.
Program Implementation Ideas
Our program team has developed four implementation ideas for professionals, organizations, or individuals to implement these storybooks into their communities. We invite you to participate in this program using one or more of the implementation ideas listed below.
Our program team has developed several marketing tools to help promote your program throughout your communities.
Native American Storybook Program
During the research phase of our program, the team discovered a gap in resources to
help Native American families who may be experiencing a loved one with Alzheimer’s
dementia. To address this gap, our team is partnering with the Montana State University
Native American Studies Department to author a culturally relevant storybook depicting
a families experience with Alzheimer’s dementia.
Using Storybooks and Reading Guides
We have developed Reading Guides for seven storybooks depicting children’s experiences
with a loved one with Alzheimer’s dementia. To view these guides please visit: https://alzheimers.msuextension.org/storybookandreadingguides.html
The Reading Guides include questions to ask a child while reading the book, common reactions a child may have towards Alzheimer's disease, enrichment activities to help tie together the key ideas of each book, and websites that provide information to support the whole family.
Please note: In the piloting of this program, many of these reading guides were developed to be utilized by teachers, librarians, or parents as a four-part series beginning with a book that clearly explains Alzheimer’s dementia and provides supportive notes/sections for the reader (e.g. Striped shirts and Flowered Pants) and building off this foundation with other books that depict children’s emotional experiences as they navigate relationships with grandparents who have Alzheimer’s dementia. We recommend you take a few moments and review the “Choosing a Storybook about Alzheimer’s Dementia” handout. This is just one helpful tool to consider when choosing a storybook. More tools will be added to the lesson in August 2022.