Dementia - Inclusive communities
what it is. why it matters. how to be it.

Susan Wehry, MD

Associate Clinical Professor and Director, AgingME, University of New England

Dementia inclusion is central to age-friendly initiatives, fostering a more compassionate, accessible, and vibrant community for everyone. When people actively work to include and support individuals living with dementia, they create an environment that promotes understanding, reduces stigma, and enhances overall social cohesion. This approach encourages businesses and public spaces to become more user-friendly, benefiting not only those with dementia but also others living with cognitive or physical challenges. Like age-friendly initiatives, dementia-inclusive communities benefit from increased participation by older residents in local activities and decision-making processes, leading to more diverse perspectives and richer community life. Additionally, by supporting those with dementia to remain active and engaged, communities can reduce the burden on healthcare systems and care partners. This inclusive approach to community development promotes intergenerational understanding and creates a more resilient, adaptable social structure that values and supports all its members.

Activity: Introduction

Now, let's start a conversation. Click on the plus button in the Padlet below to share a few ideas and feelings that come to mind when you think of dementia inclusion. There is no "wrong" answer. Studies show that people are more afraid of developing dementia than they are of other chronic illnesses. Community can make navigating life with dementia easier or more challenging. Dementia inclusion is important because it can help people with dementia feel valued, respected, and included in in our cities and towns. It can also help them maintain their quality of life and well-being. 

Note: if the Padlet does not work here, click here to visit and contribute. 

Reflection: Introduction

Think about someone in your life who has the experience of living with dementia. As an alternative, think about a book you have read or a film you have watched that features a person living with dementia. How was the community supportive of the person living with dementia? What could have been better? Click here to complete the first of three reflections in this chapter. Entering your reflection will also record your progress. Important: Complete each section before moving on to its corresponding reflection. When you return to the form, you will automatically be taken to where you last left off. 

Dementia - What It Is 

Is dementia a disability? A growing number of people say that it is. With proper support, many people living with dementia would have a better quality of life and be able to engage more fully in the wider world. Changing our perspective from one of a dreaded disease to a manageable disability can affect everything from employment to transportation and accessibility to cultural events. It can also push back against deep-seated stigma.

Jennifer Carson says we need to move beyond the biomedical view. "We have to start thinking in terms of rights. We have to stop thinking of dementia as a disease only," she says. "Not to negate that there is underlying pathology, but there has to be an additional frame." (Pathways to Well-Being with Dementia p. 65-66)

Activity: Dementia - What is It?

One of the benefits of thinking of dementia as a disability is that people are seen as able to change, adapt, and grow even as they navigate an underlying disease that results in dementia. 

"Thinking of dementia as a disability...makes me see that people living with dementia have hopes and dreams, skills and talents, and the desire to keep learning and growing."
                                              Kirsten Jacobs,
Pathways to Well-Being with Dementia, p. 66

We all deserve the right to live our best lives. Some of these therapies are formal, others happen in community. Remember, one of the most important "therapies" is community inclusion. We all need a sense of purpose and belonging to thrive. 

Explore these flip cards to learn about some of the benefits of therapy for a person living with dementia. 

Reflection: Dementia - What It Is

This quote is taken from Pathways to Well-Being with Dementia

Many dementia advocates feel strongly that they do not want to be defined as "disabled." 

"By legal definition and social recognition it is very much a disability as it decreases abilities I have traditionally been excited to fulfill, says Manual Guide John-Richard Pagan. "But how I personally perceive it must be beyond that label, beyond that limitation. I must see that it is only a part of who I am, and I can do more to move through it than simply accept and wallow in it as a disabling thing." (p. 66) 

Consider:

Click here to complete the second of three reflections in this chapter. Entering your reflection will also record your progress. Important: Complete each section before moving on to its corresponding reflection. When you return to the form, you will automatically be taken to where you last left off. 

Dementia Inclusion - Why It Matters

Having a sense of purpose is basic to our sense of well-being and confidence. Someone's purpose can be as grand as fighting world hunger or as personal as making those around you smile. Your purpose might be living the best life that you can, given a diagnosis of dementia. 

Researchers have been studying how a sense of purpose affects our well-being. A 2022 online article in the journal of Social Work Today, "Cultivating a Sense of Purpose in People with Dementia," notes, "Individuals with dementia will understand that helping out, being busy, lending a hand, giving to other people, being listened to, and feeling that they belong are important indicators of quality of life."  (from Pathways to Well-Being with Dementia p. 73-74)

Activity: Why It Matters

Dementia inclusive communities are key for people living with dementia to remain as engaged as they want to be - to socialize, volunteer, and participate in a wide variety of services, programs and activities. Interactions with friends and neighbors in the community, engaging in valued activities, and being able to comfortably access needed services can give a person living with dementia a sense of purpose and self-confidence. 

Now, let's start a conversation about dementia inclusive communities. In the Padlet below, click on the "+" signs under each category to add your ideas for how each aspect of your community can be more dementia inclusive. Do you have an idea for another key area of daily life? Please scroll over to "other" and add your ideas there. This Padlet will help us all to imagine what a more dementia inclusive community can look like (and start thinking how we can make those changes in our own communities). 

Note: if the Padlet does not work here, click here to visit and contribute. 

Dementia Inclusion - How To Be It

What would your community look like if it was dementia inclusive? What would it take to get there? 

To start the conversation, we will watch a brief video of how communities in Washington State are doing it. People who are living with dementia describe what it is like to live in their dementia friendly community. 

To become dementia-inclusive, communities can implement a range of practical strategies and initiatives. These might include providing dementia awareness training for local businesses, service providers, and community members to improve understanding and communication. Public spaces can be made more accessible through clear signage, well-lit areas, and easily navigable layouts. Local organizations can offer dementia-friendly activities and events. These will ensure that people experiencing cognitive changes feel welcome and supported. Transportation services can be adapted to meet the needs of individuals with dementia, enhancing their mobility and independence. Healthcare facilities can develop specialized programs and care pathways for people living with dementia. Additionally, creating support networks for care partners, family members, and friends affected by dementia can strengthen the community's overall resilience. Involving people living with dementia in decision-making and community planning can help age and dementia-inclusive initiatives foster an environment where individuals living with dementia maintain their dignity, independence, and quality of life.


Resources: Dementia Inclusion - How To Be It

A first step in making your age-friendly initiative more dementia inclusive is to increase awareness about the strategies age-friendly initiatives can use to make sure that communication and the programs and services offered by the team are inclusive of people experiencing cognitive changes. These are a few resources Lifelong Maine developed in partnership with the University of New England AgingME GWEP. The final resources were developed by another partner, Dementia Adventure.

DA-Walk-planner-template-Final.pdf

Reflection: Dementia Inclusion - How To Be It

Did anything surprise you in the video of Dementia Inclusion - How To Be it? What did you hear that you could implement in your community?   Click here to complete your final reflection and record successful completion of the Dementia Inclusion chapter. Note: Clicking will bring you back to where you left off when you completed your last reflection. When you have finished, please click "submit" to record completion of the Dementia Inclusion chapter. 

For more resources and to learn how Lifelong Maine's Age-Friendly communities have worked to become more dementia inclusive, visit the Lifelong Maine Dementia Inclusion Toolkit. 

Additional Resources

AgingME GWEP
Learn more about the AgingME Geriatrics Workforce Enhancement Program and explore their curated resources.

Dementia Action Alliance
This site includes a link to download the manual, Pathways to Well-Being with Dementia, quoted throughout this chapter. The guide is invaluable for people experiencing cognitive changes. 

Lifelong Maine - Dementia Inclusion Toolkit
With funding from AgingME GWEP, Lifelong Maine partnered with the University of New England to provide education to age-friendly communities about implementing projects and administered mini-grants for communities to make meaningful changes. This section of the Lifelong Maine website summarizes our learnings with the communities. 

Luminate - Dementia Inclusive Singing Network
In Scotland, the Dementia Inclusive Singing Network helps people affected by dementia take part in singing groups. Click here to watch a brief video about the initiative. We especially appreciate the resources they have curated on topics, such as speaking about dementia, making spaces more dementia inclusive, and communicating with people with dementia. 

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

National Council of Dementia Minds
Are you interested in learning from people experiencing cognitive changes? The site has a host of useful resources and examples. 

WHO - Towards a Dementia Inclusive Society
Toolkit developed by the World Health Organization to promote dementia inclusion - from community engagement and planning to implementation. 

Meet Your Chapter Guide - Dr. Susan Wehry

Susan Wehry, MD, a geriatric psychiatrist, is Chief of Geriatrics at the University of New England College of Osteopathic Medicine. She has authored research and articles on aging and mental health, including the Oasis 2.0 curriculum and a recent study published in JAMA, “Association of a Communication Training Program with Use of Antipsychotics in Nursing Homes.” Dr. Wehry is a nationally recognized speaker and workshop facilitator on depression, dementia, and healthy aging and her presentations combine over 30 years of experience with wisdom, compassion, and common sense, to engage attendees, help build skills, and use proven techniques.

For a full profile, visit https://www.susanwehrymd.com/

During this chapter, we hope you will gain a few tools to make your community more dementia inclusive.
If you have any questions as you are going through the material, please email: lifelong@maine.edu.