Dementia is a broad term referring to loss of cognitive functioning and is manifested through decline in thinking, memory, language, and mood. It is one of the major causes of disability and dependency (World Health Organization [WHO], 2022). However, most individuals living with dementia experience mild symptoms for many years and continue to live, play, and work in the community. More than 55 million people are living with dementia worldwide (WHO, 2022). Evidence shows that about 70% of older adults living with dementia live in the community (Alzheimer’s Association, 2023), with or without family (one fourth to one third live alone. 

Before you begin...

1. Avoiding Stereotypes of Dementia - Training to make sure you are not reinforcing prevailing stereotypes about people living with dementia. A great place to start is reading selected sections of Pathways to Well-Being with Dementia to familiarize yourself with the perspective of the person experiencing cognitive changes, such as dementia. A second resource is the Dementia Inclusion training video with Susan Wehry.

2. Community Strengths - Who is already doing work in your community or region to be dementia inclusive? Is the Area Agency on Aging, Alzheimer's Association, Long Term Care Facility, or healthcare organization offering programs or activities to support people experiencing cognitive changes, care partners, families, or friends? Make sure that your work supplements (and doesn't compete with ) everything else happening in your community.

3. Partners - Who are the partners that may be most interested in collaborating with you? These are a few of the partners some of the Lifelong Communities have engaged in their work to promote dementia inclusion:

   • Libraries - hosting a speaker series, developing a book display, or purchasing and loaning memory kits, games, or puzzles.

   • Historical Societies and Museums - creating a history walk or developing informational signs with information about the history of the community

   • First Responders - training for first responders can make them more aware of the needs of people living with dementia; fire, police, and other safety providers are trusted sources to deliver materials, such as File of Life, that can ensure that accurate medical information is available in case of an emergency

   • Parks and Recreation, Trails, and Land Trusts - guided meditations and accessible walks for people living with dementia, care partners, and anyone who enjoys walking. Walking groups promote physical and social health; developing inclusive opportunities keeps people living with dementia connected to each other and to their communities.

   • Community or "Senior" Center or "Men's Shed" - hosting a speaker series, yoga class, art experience, providing the opportunity for people to continue building and making to benefit the community or any number of other opportunities that allow the person with dementia to continue living well in the community

   • Places of Worship - training for staff to make sure that people living with dementia can continue participating in meaningful ways; as a trusted source of friendship and social participation, peers in the place of worship may be uniquely situated to offer help when help is needed and wanted by the person living with dementia

   • Businesses - training for businesses to be age and dementia inclusive. A report by the International Longevity Center suggests that the US economy could gain more than 1 billion dollars if our businesses were more inclusive of people experiencing cognitive changes, such as dementia. 

4. Funding - What group or organization may be interested in funding a small project to promote dementia inclusion? Some possibilities include:

   • Banks and Credit Unions

   • Local foundations or funders

   • AARP Community Challenge Grant program

5. How can you involve people experiencing cognitive changes in your planning process? Half the Story, developed by Dementia Australia, is a guide to involving people living with cognitive changes, families, and care partners in meaningful conversations about the design of programs, activities, and services in response to the whole story--the one that includes the perspective of the person living with dementia.

6. Networking - Are there other communities that have adopted a similar approach? During the Dementia Inclusion pilot project, 38 communities held at least one community conversation and implemented a quick-action project using the $500 micro-grant that was part of the program. To learn more about their projects, return to the Dementia Inclusion Guide in mid-September for a description of the different approaches people took. In the meantime, if you have any questions, email us (lifelong@maine.edu). 

As you move forward...

How will you continue and expand the conversation about dementia inclusion in your community? Creating dementia-inclusive environments takes more than a single community conversation or a quick-action project. To make an inclusive environment requires consistently raising awareness that all aspects of community life will be dementia inclusive. How will you wrap dementia inclusion into your ongoing lifelong community work?