Dementia Inclusion:
A Guide for Lifelong Communties
i am not half full. i am not half empty. i am a whole person and will continue to be a whole person until I draw my last breath
Richard Taylor, 2011, Pathways to well being with dementia
introduction
This guide was created for Maine lifelong communities starting their journey to become more dementia inclusive.
In 2023, the University of New England's Geriatric Workforce Enhancement Program (GWEP) teamed with the Univeristy of Maine Center on Aging to provide resources and support for communities interested in becoming more inclusive of people living with dementia or memory loss. Thirty-eight communities hosted a community conversation about becoming more dementia inclusive and then developed and implemented a quick-action project based on what they heard.
The featured resources were selected based on the unique projects proposed in those communities. Each project represents a beginning spark to improve public awareness of dementia and social participation for people living with dementia. The expectation is that these sparks will ignite more activities to create an environment in which people living with dementia can function at their highest level while finding joy, purpose, and meaning. This toolkit will evolve to support these communities as their dementia-inclusive initiatives multiply.
It is important that communities take the lead in becoming more dementia inclusive as the majority of the over 5 million people diagnosed with dementia in the USA live at home in their communities.
Social exclusion is commonly reported by people with dementia and their families. One in three people who receive a dementia diagnosis report that they lose friends when they share information about their diagnosis. Dementia-inclusive communities allow people living with dementia to enjoy the best possible quality of life, to remain in the homes and communities they love, and to enjoy social connections with neighbors and friends they have known for years.
The benefits of dementia-inclusive projects are not limited to people living with dementia and their families. Communities benefit when increased public knowledge leads to the minimization of stigma and stereotyping. Everyone benefits from projects that make the built environment more user-friendly--from wayfinding signs that are clear and easy to read to quiet places to walk safely. While people living with dementia benefit from information about fall prevention, so do all of us who are aging in place.
“Dementia doesn’t strip a person of their essential humanity. There’s so much to who we are as human
beings than our cognitive function. And if people can embrace all those other aspects of what makes us
human, they can more readily live well with dementia.”
Jennifer Carson, PhD, Contributor, Pathways to Well Being With Dementia
Note: Below, and throughout our site, underlined text indicates a live link.
Considerations to ensure that your project enhances the autonomy and inclusion of people experiencing cognitive changes.
A library of curated resources that will help you develop your approach to dementia inclusion.
Hearing directly from people who have gone before can inspire and help you avoid the pitfalls.
For a bit of Inspiration....
This inspiration comes from our friends in Canada. Faces of Dementia was a six-month campaign aimed at building awareness, reducing stigma, and improving the quality of life of people affected by dementia. The campaign was co-created by people living with dementia to share what they wanted people to know about living with dementia. These are a few quotes shared in the video:
There are as many faces of dementia as there are people who have it
You're ok one day, you get a diagnosis, and the next day, you are still you.
Keep doing the things you love....
Age-Friendly Bowdoinham frequently works with high school and college students to complete field experiences. Izzy Drehobel, a high school student completing her Capstone project partnered with the Merrymeeting Arts Center to offer this art adventure for residents living with dementia, care partners, and friends. Led by collage artist Gracia Woodward, participants practiced the art of collage and enjoyed a time of shared laughter and story-telling.
Special thanks to EllenCeppetelli, Lifelong Fellow and Chair of Age-Friendly Eliot who worked with Center on Aging staff to develop the structure and content of this Guide, to the 12 Fellows who worked directly with communities to help them plan a project appropriate for that community, and to all of the communities who embraced the challenge to become more dementia-inclusive.