Dementia Inclusion:
Resources
Below, you will find resources to help you implement a dementia inclusion project in your community. The communities that participated in the dementia inclusion pilot identified the following areas to help them move forward with their quick-action projects:
Comprehensive Resources
Dementia Inclusive Tip-Sheets and Trifolds (printable)--more coming soon
Engaging Businesses, Retailers, and Organizations
Resources for First Responders
Games, Puzzles, and Memory Kits
Information Kiosks
Outdoor Spaces and Events
Books (about dementia-inclusive communities as well as adult fiction, memoir, books developed for a person living with cognitive changes that make reading difficult, books for junior high readers, and picture books)
Click on any of these areas to find documents and materials for your Dementia Inclusion Project.
Check back often.
We will continue to add to the materials as we create them and will add links and resources to materials developed by others.
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Note: Below, and throughout our site, underlined text indicates a live link.
Comprehensive Resources
Dementia Action Alliance - comprehensive resources, including Pathways to Living Well with Dementia. The site provides a space for people to come together, exchange ideas, form friendships and professional connections, and learn with each other to create a better world in which to live with dementia. We especially enjoy their podcasts, This Dementia Life and Calling All Voices.
Dementia Adventure - UK organization whose mission is to support people with dementia to get outdoors, to get into nature, to continue to enjoy the pastimes and activities that they love, and to help them retain a sense of adventure in their lives.
Building Dementia Friendly Communities, a downloadable PDF developed by our friends in the United Kingdom. The publication includes inspiring, practical ideas & global examples from selected dementia-friendly communities.
Jim's Story - Dementia Inclusive Communities. Jim Mann was diagnosed with dementia 8 years before this video was created. He shares the challenges of living in the community as his dementia has progressed. There is no more compelling argument for dementia-inclusive communities than the one made by a person experiencing cognitive changes.
Dementia-inclusive Tip sheets, tri-folds, and other resources
If you would like hard copies of any of these, email lifelong@maine.edu and we will arrange to have them printed and sent to you at no cost to your lifelong community.
Cooking Our Way: A cookbook by and for people living with dementia. An extraordinary cookbook by and for people living with dementia. The cookbook includes information about organizing a kitchen to make it dementia-friendly, nutritional and healthy diet information, protective kitchen aides and much more. We especially enjoyed reading the stories of the cooks who shared their recipes (and testing out a few that were delicious!).
Customizable Pathways to Dementia information sheet. Use this flyer to promote the Pathways to Well-Being with Dementia manual and share how people in your community can borrow a free copy.
Dementia-Inclusive Maine Tri-Fold describes the mission of the Dementia Inclusive Maine campaign, defines what it means to be a dementia-inclusive community, gives a few examples of dementia-inclusive projects in Maine communities, and shares advice adapted from Pathways to Well-Being with Dementia about thriving with dementia.
Thriving as We Age, a printable tri-fold developed by Aging ME Geriatric Workforce Enhancement Project, describes the key role of dementia-inclusive outdoor spaces to help us thrive as we age.
Top Tips for Connecting to Nature and the Outdoors, a downloadable PDF developed by Dementia Adventure. The four-page document includes tips for spending time in nature, improving the environment, and even a few ideas for ways to enjoy nature when it is not possible to go outside.
Pathways to Living Well with Dementia Rack Cards (one for each chapter in the manual)
disaster preparedness
National Alzheimer's and Dementia Resource Center - Disaster Planning Toolkit for People Living with Dementia
This Disaster Planning Toolkit for People Living with Dementia is made up of seven tip sheets and checklists for persons living with dementia, their families, and others who interact with them, including friends and neighbors. The tools cover (1) Planning for a Disaster; (2) Important Contacts; (3) Emergency Supplies Checklist; (4) My Medical Conditions and Care Needs; (5) Disaster Planning Tips for People Living Alone with Dementia; (6) Planning for After a Disaster; and, (7) Tips for Communication and Responding to Dementia Symptoms
Engaging Businesses, Retailers, and organizations
Age- and Dementia-Friendly Businesses, developed as part of the dementia inclusion project, this guide explains why adopting age-and dementia-inclusive practices is good for businesses and then shares hints, tips, and resources to kick-start the work of businesses, retailers, and organizations to be dementia-friendly.
Online Resources
Dementia-Friendly America Business Training. This toolkit includes everything needed for a lifelong community to conduct dementia-friendly business or organization training.
Dementia Friendly Guides. This resource is from our friends in the UK. It offers comprehensive advice for businesses and organizations of many types including businesses and retail; housing, utilities, and technology; arts, entertainment, sport, and leisure; public services and emergency responders; and the faith community. To download one or more of the guides, you will need to register by completing a brief form.
Dementia Inclusive Public Library Guide. Public libraries play a key role in making our communities dementia inclusive. This resource, developed by the Ohio Council for Cognitive Health, covers a wide range of topics including:
training staff and volunteers
resources for developing, publicizing, and distributing memory kits
programming ideas to promote cognitive health
sample information sheets about dementia
tips for identifying partners who can help move dementia inclusion forward in the community
Inclusive Trainings. This resource is from our friends in Canada. DEMENTIAHELP.CA has developed these trainings to assist businesses and organizations learn simple strategies to increase awareness about individuals living with dementia and that can be used to make workplaces dementia inclusive.
First responders
Alzheimer's Association, free First Responder training and tip sheet. The training includes information on the topics of wandering, driving, abuse and neglect, shoplifting, and disaster response.
Community-based trainings to help first responders be more aware of the challenges experienced by a person with dementia may start with a 30-minute video training, such as First Responders and Care Partners, followed by a conversation facilitated by experts in dementia and public safety.
Resources Education for Aging, Community, and Health (REACH) developed Dementia Resources for First Responders and Family Care Partners: De-escalation and Communication Strategies, a series of videos that illustrate how to use de-escalation strategies in an emergency situation and offer hints and tips to reduce the likelihood that a similar situation will happen again.
games, Memory kits, and Puzzles
Games
All About Us Game. The Alzheimer's Association developed this first-of-its-kind life-storytelling board game that encourages conversation to describe life experiences, explore feelings, and share values. The game supports the identity, independence, and sense of purpose of the person living with dementia while building closer relationships with fellow players.
Keeping Busy website. As part of her leadership of the Dementia Inclusion project, Ellen Ceppetelli played several of these games with people living with dementia. She is a fan so we highly recommend the inclusion of a selection of these in a dementia -inclusive library or community center project. Click here to view their full catalog.
Memory Kits. For people experiencing memory loss, a Memory Kit can provide mental and emotional stimulation. The kits are designed to be used to inspire conversation and build stronger connections.
American Library Association blog, Reminiscence and Caregiver Kits for Seniors, describes the benefits for libraries of stocking the kits and links to one source of ready-made kits and a host of other reminiscence resources, MEternally
Alzheimer's Association's, Making the Most of Memories, provides information about developing a personal memory book, memory box, or activity kit.
What are Memory Kits? and How to Use Them. This article includes information for libraries to create and use memory kits to enhance the lives of their patrons living with dementia.
Puzzles
To create unique puzzles that reflect the history and geography of your community, team with a local photographer and purchase custom puzzles.
One source of ready-made puzzles is Relish.com. They provide puzzles of varying difficulty (from 13-100 pieces) that are thick enough for someone experiencing sensory changes as part of their dementia to use comfortably.
Information Kiosks
Develop an information kiosk for people experiencing cognitive changes, their friends, and family. These are a few materials to consider including:
Free publications from the National Institute of Aging, such as Forgetfulness: Knowing When to Ask for Help and Understanding Memory Loss
Resource bookmark or magnet with the essential contact information--from the non-emergency number to call the police to the number for the post office. What helps us all stay connected, also helps the person experiencing cognitive changes
Consider developing a map of accessible paths in your community. It will encourage everyone in the community to get out and walk. Norfolk Easy Ambles-Dementia Walk Maps provides basic guidance needed to establish an "easy amble" and a sample map. If you develop a map, you may also want to include Dementia Adventure Walk Planner.
List of Volunteer Opportunities in the community that have been trained to be dementia-inclusive. We all need a reason to get up in the morning. Finding opportunities for everyone to participate is part of being an age- and dementia-inclusive community
List of resources for people living with dementia and care partners. This could include support groups, activities, and formal services. The Maine Alzheimer's Association is a good place to start locating formal services and support groups in your area.
Flyer with information about Pathways to Well-Being with Dementia and how people in your community can access a hard copy (click here to view customizable template)
Materials listed under dementia-inclusive printables, above
outdoor spaces and events
Encourage time outdoors engaging in valued activities.
How/Why to Build a Garden for Those with Dementia - a great guide with many ideas!
Guide to Planning/Starting Dementia-Friendly Walking Group - This guide covers A-Z for developing a program!
Partner with your Historical Society for a dementia friendly History-Walk
Walking Paths or Trails – along with gardening and walking ideas, dementia-inclusive paths encourage time outdoors.
Develop a brochure with information and a map of accessible trails in your community or in the surrounding area
Wayfaring Signs - Learn what makes a sign dementia friendly and view a signage checklist.
Books
Dementia Inclusive Communities
Dementia-Friendly Communities: Why we need them and how we can create them. Author Sue McFadden describes the reasons that dementia-inclusive communities benefit all of us and shares hints and tips for making your own community dementia friendly.
Staying in Life: Paving the way to Dementia-Friendly Communities, by Verna Rothe, Gabrielle Kreutzner, and Reimer Gronemeyer. As a community, we can do better than "take care of" people living with dementia. The authors describe what can be done to create spaces where people living with dementia can stay in life - rather than just staying alive.
Adult Fiction
Elizabeth is Missing (film version). Maud is a woman experiencing cognitive changes. Her daughter and professional caregiver warn her to stay at home, stop buying canned peaches, and not cook. However, Maude either ignores or forgets the rules. She is determined to solve two mysteries–the disappearance of her sister 20 years ago and, more recently, the disappearance of her best friend, Elizabeth. Maud’s journey to solve both mysteries provides insight into the way dementia impacts her thought process and how her friends, family, and community services support (or don’t support) her.
Still Alice (film version). Follows Alice for two years after her diagnosis with early onset dementia. The book is written from Alice’s perspective so we see how the changes in her mind impact the way she perceives and interacts with the world around her.
Adult Non-Fiction, Memoir
Slow Puncture: Living well with dementia by Peter Berry and Deb Blunt. After Peter's diagnosis of young-onset dementia, he embarked on a series of challenges to show that, "life isn't over with dementia, it's just a little different. In 2021 Peter and Deb wrote a second book, Walk with me: Musings through the dementia fog, a compilation of thoughts and poetry.
Alzheimer's from the Inside Out, by Richard Taylor. The author deploys his professional experience and skills as a psychologist to work tirelessly to raise awareness of what it is like to live with dementia, advocate for the rights of people diagnosed, and describe the benefits for all of us when people experiencing cognitive changes are fully included in all aspects of life--with family, friends, and community. This series of essays will leave you thinking about how we identify priorities and how we are perceived by others.
Written to be enjoyed by a person experiencing cognitive challenges related to reading
The Sunshine on My Face and other books by Lydia Burdick. Burdick was caring for her mother with late-stage Alzheimer’s when she discovered they could connect through reading. Burdick asked her mother to read the sentence, “I love to feel the sunshine on my face.” When she asked her mother what the sunshine felt like on her face, her mother replied, “warm” — uplifting proof the story had penetrated her mother’s dementia.
Books written by Emma Rose Sparrows - Author Emma Rose Sparrows has created a book series that is (1) formatted to be easy to read; and, (2) by all appearances look like a "regular" book that anyone can be proud to own. The series is written on 3 levels that have no text inside or on the cover specifying that they are for people living with cognitive changes, including Alzheimer’s Disease, or who have other difficulties reading.
Young Adult Fiction
Peter Lee's Notes from the Field by Angela Ahn. Eleven-year-old Peter Lee has two goals--to become a paleontologist and to get his kid-sister to leave him alone. But his summer falls apart when his real-life dinosaur expedition turns out to be a bust. However, his days as a scientist may not be over yet. His grandmother, Hammy, is sick, and no one will talk about it. Armed with notebooks and pens, Peter puts his observation and experimental skills to the test to see what he can learn.
The Space Between Lost and Found by Sandy Stark-McGinnis. Cassie’s always looked up to her mom, a vibrant woman bursting with grand ideas. Together they planned to check off every dream on their think-big bucket list, no matter how far the adventures took them. The future seemed unlimited. But then came the diagnosis, and Mom started to lose her memories. Even the ones Cassie thought she’d never forget. So, Cassie decides to take action. It’s time for one last adventure… even if it means taking a big risk to get there.
Picture Books
I Smile For Grandpa: A loving story about dementia disease for young children by Y.Y. Chan When Grandpa is diagnosed with dementia, Little Buddy realizes playing soccer together won’t quite be the same. But, while the activities that Grandpa can do are changing, there is still much fun to be had. In fact, spending time with each other is as special as ever! Tips for speaking with your child as well as a useful Q&A are also included to enhance learning.
Wilfred Gordon McDonald Partridge by Mem Fox. This classic picture book about memory loss and dementia tells the story of a little boy who lives next to a nursing home. He eventually helps his favorite resident find her memory.
Granny Needs My Help, by Deborah Mills. Granny has been diagnosed with Alzheimer's Disease but that doesn't stop Zeh, her granddaughter, from loving her and enjoying their time together. Join Zeh as she learns what is going on in her Granny's brain and gains an understanding of why sometimes life with Granny is a little challenging.
The Remember Balloons by Jessie Oliveros and Dana Wulfekotte. This award-winning picture book from Austin author Jessie Oliveros uses balloons to represent the memories James’ grandpa is losing. Grampa's balloons include the memory of a fishing trip they took together, camping, and Nellie's poor cow. As grampa's memories disappear, James collects many new balloons so that he can share them with others.
Online Resources to further community understanding of dementia
Your Conversation Starter Guide: For Caregivers of People with Alzheimer’s or Other Forms of Dementia. The Conversation Project (TCP) has developed a conversation starter guide for family and friends of a person living with dementia. The guide will help care partners understand what matters most to a person living with dementia and help them have an active say in their health care.
According to one statistic, 1 in 3 people who receive a diagnosis report losing friends. In Maintaining Friendship Despite a Dementia Diagnosis, Susan Moeller describes how we can maintain our friendships with people experiencing cognitive changes.
As you move forward...
How will you implement, maintain, and expand dementia inclusion in your community? Examples of projects implemented by communities in Maine can be found here!
For a bit of Inspiration....
Dementia Action Alliance Advisory Board member Laurie Scherrer shares a lively presentation of what motivates her to share the experience of living with dementia. She describes the important role of laughter and a sense of adventure that embraces life.
This video describes how Dementia Adventure supports people living with dementia and their care partners to continue enjoying the outdor environment.