INTRODUCTION

Dementia is a broad term referring to loss of cognitive functioning and is manifested through decline in thinking, memory, language, and mood. It is a major cause 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. 

Alzheimer’s disease, a contributing cause in 60%–70% of dementia diagnoses, is a progressive disease. A preclinical stage precedes mild dementia, when symptoms start to interfere with some everyday activities. Later, moderate and severe stages affect more important everyday activities and help is needed. People live an average of 4–8 years, while some can live for 20 years after the diagnosis (Alzheimer’s Association, 2023). In their community, people living with dementia can stay involved meaningfully, valued contributors to the social, economic, and civic life of the community.

This guide was created for Maine lifelong communities starting their journey to become more dementia inclusive. 

BACKGROUND

In 2023, the University of New England's Geriatric Workforce Enhancement Program (GWEP) teamed with the Univeristy of Maine Center on Aging's Lifelong Fellows Program to provide resources and support for communities interested in becoming more inclusive of people living with dementia or memory loss. Twelve Lifelong Fellows, volunteers with experience working in age-friendly communities, received training about dementia inclusion and were matched with 26 communities to train community advocates on what it means for a community to be dementia inclusive, facilitate a community conversation about dementia, and help plan and implement a dementia inclusive project.  In all, 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. 

TOOLKIT

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.

Do You Want to Learn More about how Age-Friendly Communities can support Living Well with Dementia?
Join our Guide, Susan Wehry, in our Skill Chapter
Dementia - Inclusive communities
what it is. why it matters. how to be it.