Meaningful engagement of people living with dementia

"To me, 'meaningful engagement' means being able to actively participate...it is the personal involvement and interaction with others that I find to be most satisfying." – Person living with dementia.

What does meaningful engagement mean?

People living with dementia tell us, "Nothing about us, without us."

They also tell us that their experience working with organizations – regardless of where they live in Canada – is sometimes "uneven," meaning that they are not always included in ways they believe would be beneficial for the organization or that are satisfying for them.

It's one of the Alzheimer Society's guiding principles to recognize the individuality of each person with their own unique life experiences, personality, values, beliefs and opinions – this includes people living with dementia.

Meaningful engagement includes:

• Following a person-centred approach that considers the person living with dementia first;
• Respecting and incorporating the voices of people living with dementia into your organization's processes and goals;
• Organization-wide knowledge and awareness about the effects of dementia on the person, thereby reducing stigma against dementia;
• People living with dementia feeling empowered to have a say in your organization's decisions and policies; and,
• In turn, more involvement from people living with dementia ensuring that your organization is developing information and resources that speak effectively to their experiences and needs.

The benefits of meaningful engagement

The benefits of meaningful engagement for the person living with dementia

• Being listened to as an equal.
• A sense of purpose and routine.
• Being offered an appropriate outlet for skills and experiences.
• An increase in self-esteem and sense of accomplishment.
• Being able to address issues related to living with dementia.
• Being offered opportunities to influence policies and programs which can improve quality of life.
• Being able to provide the perspective of the person with dementia and affect decision-making.

The benefits of meaningful engagement for your organization

• Credibility and legitimacy that the organization does, in fact, represent and act as a voice for the needs and interests of people with dementia, their families and care partners.
• Increased capacity by capitalizing on the skills and abilities of persons with dementia.
• Doing work that is increasingly relevant.
• Informed decision-making.
• Ability to identify gaps in services from individuals and families who may benefit from them.
• Provision of appropriate information and services that address real concerns.
• Adding depth to the organization and dispelling myths and stereotypes.
• Staff positively supporting the cause of a better quality of life for people with dementia and their caregivers.

The Advisory Group of people living with dementia

The work of the Advisory Group

The Advisory Group of people living with dementia is charged with the task of creating a high level, multi-year plan for the formal involvement of people living with dementia in our work. They provide guidance to the Alzheimer Society of Canada in fulfilling its engagement plan; raise awareness of the needs of people with dementia, including the specific needs of people living with early onset and/or early stage dementia; and provide input as requested into our operations.

Their experience and leadership has helped us and many Canadians in a variety of ways. See Examples of meaningful engagement accomplished at the Alzheimer Society, below.

Other ways we engage people with lived experience in our work

People with lived experience of dementia do not have to be members of our Advisory Group in order to engage in our work. We invite people with lived experience to engage in our work in a number of ways, such as:

• Reviewing our educational literature to ensure the information is accurate, relevant and accessible,
• Presenting in partnership with us (for example, training sessions or conference presentations),
• Telling their stories and raising their voices as part of awareness campaigns and
• Participating in the research process through the Alzheimer Society Research Program.

Examples of meaningful engagement accomplished at the Alzheimer Society

Here at the Alzheimer Society, meaningful engagement is reflected in our work. Here are a few examples of campaigns, initiatives and resources that we could not have completed effectively without the input, guidance and consideration from our Advisory Group and other people living with dementia.

“Yes. I live with dementia”: Our three-year nationwide awareness campaign

With stigma identified as our top research priority, the Alzheimer Society of Canada surveyed more than 1,500 Canadians in November 2017 to learn more about their attitudes and beliefs when it comes to Alzheimer’s disease and other dementias. Using the survey results, we developed a three-year multichannel awareness campaign with the goal of increasing understanding of the realities and experiences of Canadians who are affected by dementia.

The cornerstone of the campaign was the powerful, first-person stories of 37 ambassadors from across Canada whose lives have been touched by Alzheimer’s and other dementias in some way, each with the headline: “Yes. I live with dementia. Let me help you understand.” A bilingual digital toolkit was provided to all provincial Societies containing key messages, customizable print materials, radio scripts, social media posts and images, and tips on how to run the campaign locally.

The Canadian Dementia Priority Setting Partnership study

In 2017, researchers at the Toronto Rehabilitation Institute, Dr. Jennifer Bethell and Dr. Katherine McGilton, surveyed more than 1,200 Canadians living with dementia, as well as their friends, family, caregivers and healthcare providers. They identified their top 10 dementia research priorities, which will help to inform researchers and research funding organizations as well as the Government of Canada’s national dementia strategy.

The initiative, known as the Canadian Dementia Priority Setting Partnership study, was funded by the Alzheimer Society Research Program as part of our commitment to the Canadian Consortium on Neurodegeneration in Aging (CCNA).

The top priority identified in the study came as a bit of a surprise to researchers: It was understanding the stigmas associated with dementia, their impact, and strategies for reducing them.

Learn more about the Canadian Dementia Priority Setting Partnership.

The first-ever Canadian Charter of Rights for People with Dementia

As difficult as it is to receive a diagnosis of dementia, people with dementia tell us that it can be even more devastating to experience the stigma of this disease on a daily basis. To protect their human rights and give themselves a voice, the Alzheimer Society of Canada's Advisory Group of People with Dementia created the first-ever Canadian Charter of Rights for People with Dementia in 2018.

The Charter empowers people with dementia to understand and advocate for their rights. It is also meant to help policy makers, health-care professionals and organizations pause and reflect on how they currently interact with people with dementia and consider how they can ensure the rights of people with dementia whom they support are respected.

Learn more about the Canadian Charter of Rights for People with Dementia.

The campaign for Canada's first-ever national dementia strategy

On June 17, 2019, the Government of Canada released the country’s first-ever national dementia strategy: A Dementia Strategy for Canada: Together We Aspire. The strategy will address the overwhelming scale, impact and cost of dementia in Canada through three key objectives:

• Prevent dementia,
• Advance therapies and find a cure, and
• Improve the quality of life of people living with dementia and caregivers.

While our work isn't done yet – the strategy needs to be fully funded for its potential benefits to be thoroughly realized – the Alzheimer Society of Canada recognizes and thanks the people living with dementia who have supported and advocated for the strategy since day one, and have participated as spokespeople in our campaigns to support its creation and implementation.

Learn more about Canada's national dementia strategy.

Our educational resources

Memory tips & tricks: A resource to help people living with mild memory problems

This resource, developed and published in 2018, could not have been written without the contribution, guidance and support of the members of the Alzheimer Society of Canada Advisory Group of people living with dementia.

Read Memory tips & tricks and other helpful routines and reminders.

The development of person-centred language guidelines

In 2017, the Alzheimer Society developed person-centred language guidelines for individuals and organizations to consider when discussing dementia behaviour, people living with dementia and caregivers. Many of the preferred terms in these guidelines come recommended by people living with dementia.

Learn more about using person-centred language guidelines.

Shared experiences: Advice from people living with Alzheimer's disease

This booklet, informed by the real experiences and advice of Canadians living with Alzheimer's disease, can help answer common questions and concerns about living with Alzheimer's. It's divided into seven different sections, each focusing on a different aspect of living with Alzheimer's.

Learn more about Shared experiences for people living with Alzheimer's disease.

Using our resource guide

People living with dementia have a right to be involved in organizations that represent their interests. With this in mind, the Alzheimer Society and the Advisory Group have developed a resource guide for staff and leadership volunteers of all organizations in which people living with dementia are involved.

Our resource guide on meaningful engagement intends to:

• Foster relationship building between staff and leadership volunteers and people with dementia.
• Promote the value-added potential of including the “voices of those with dementia”.
• Improve the experience of meaningful engagement for both the organization and the person with dementia.
• Build capacity within organizations to collaboratively address the needs of persons with dementia.

The content in this resource guide supports the philosophy of person-centered engagement which recognizes that individuals have unique values, personal history and personality and that each person has an equal right to dignity, respect and to participate fully in their environment.

Download Meaningful engagement of people with dementia: A resource guide (PDF).