DFC Newsletter: August 2021 | Hamilton Council on Aging

Attention People Living with Dementia in Hamilton and Haldimand!

We are launching a public awareness campaign featuring the faces and stories of ten local individuals living with dementia. Our goal is to challenge stigma and start to shift the way people think about living with dementia in our communities!

If you are a person living with dementia in Hamilton or Haldimand and would like to share your voice, please apply!

Participate in the Campaign

Space is limited. We appreciate all expressions of interest and will be in touch with all interested parties as soon as possible.

Have a question? Please contact Shelagh:
Email: [email protected]
Phone: 905-920-7721

Challenging Stigma

This publication is designed to reflect the voices of people living with dementia in our communities. If a picture is worth 1000 words, a conversation with a person living with dementia is worth 1000 journal articles (www.coahamilton.ca). In this newsletter, we will begin to delve deeper into the key themes in our What We Heard Report that emerged as priorities from our 2020 public consultation to make the communities of Hamilton and Haldimand dementia-friendly.

Today’s Area of Focus
Challenging stigma and building understanding for people living with dementia.

What is Stigma?
Stigma is a negative assumption and attitudes that lead to stereotyping and discrimination.

What We Heard
People living with dementia shared how their own stigma deeply eroded their self worth, social relationships and caused them to become socially disengaged and isolated. Participants also shared experiences of stigma among friends, social networks, businesses, community programs, healthcare, and the broader community.

Elderly woman peeling potatoes with grandson watching

Participants believed the following factors contributed to stigma:

- lack of understanding about normal ageing and dementia – its fluctuations and progression
- lack of patience and knowledge of what to do and how to support somebody living with dementia
- general misconceptions and lack of knowledge about dementia

Why is challenging stigma important?
According to a 2020 survey conducted by the government of Canada, over two-thirds of Canadians agree that people living with dementia generally face a lower quality of life than people without dementia. The same proportion agrees that people have negative assumptions about the abilities of people living with dementia. Assumptions are not reality!

Stigma fundamentally affects the way people feel about themselves and the way others see them. The impact of stigma can be incredibly devastating and debilitating for those who experience it. With this in mind, we believe that tackling stigma is paramount in our journey to creating dementia-friendly communities.

Shifting Our Perspective

5 things we must immediately stop doing/saying to people living with dementia

Often, the most well-meaning of people say or do things that perpetuate stigma for people living with dementia. Here are 5 things NOT to say to people living with dementia — from people living with dementia (in no particular order):

Elderly man standing at front door of home

“You Don’t Look Like You Have Dementia.” What does dementia look like? Is there a distinguishing feature that makes somebody living with dementia stand out in a crowd? For those who hold this belief, you could not be more wrong. People living with dementia are as different as every human on earth, with different traits, gifts, talents, and yes- different abilities and symptoms, with good days, bad days, and everything in between. Our team member Phyllis Fehr, describes her experience hearing “you don’t look like you have dementia”, its damaging effects and why we need to do better which you can watch here.

Don’t Speak for me and please speak to me. Imagine walking into a medical appointment to have your doctor ask your spouse (not you) how you are feeling, sitting down for a meal with your family to listen to a conversation about your medical appointment as if you are not there, or attending a dinner party with a group of your closest friends – none of who make eye contact and who talk around you the whole evening… These are common experiences we have heard from people who live with dementia. It is important to understand that living with dementia does not define who a person is or their ability to participate and contribute. People living with dementia are people first – they were and continue to be our family members, friends, colleagues, and so on. People with dementia are still here!

Don’t say I’m suffering or label me a victim. Many of us have been guilty of associating the term ‘suffering’ with dementia. Using the word ‘suffering’ or saying similar words that depict a person living with dementia as a victim reinforce negative stereotypes and promote the misconception that people living with dementia cannot be happy or fulfilled in their lives. This is simply not true – it is our goal to change this narrative.

Don’t use offensive language. This one should be obvious but sadly people continue to use derogatory terms such as ‘crazy’ and ‘losing it’ when referring to people living with dementia. Not only is this language highly offensive, it is simply unacceptable. Living with dementia does take away from a person’s human rights to be treated with dignity and respect.

“I do that all the time… I also forget everything… me too!” Unless you have dementia, please do not compare yourself to somebody living with dementia. While your intention may be positive, maybe to convince a person living with dementia that what they are experiencing is not a big deal, or to ‘even the playing field,’ we must remember that what a person living with dementia is going through is a big deal and the playing field is not even! Brushing off somebody’s comments, concerns or feelings will only serve to minimize their very real experience, one they may wish to explore or speak more about if they were only given the chance.

We can instead: LISTEN, UNDERSTAND, VALIDATE and EMPOWER (LUVE).

While it is not the responsibility of those with lived experience to change the world, it is our fundamental belief that people living with dementia are the experts in informing dementia care. We look to people living with dementia who want to share their experiences to show us, teach us and help us understand how can do better, be kinder and make our communities more dementia-friendly.