People living with Alzheimer’s disease and other related disorders may experience stigma related to their diagnosis or aging. With their caregivers, family or friends who support them throughout their lives, they are at risk of being shamed, misunderstood and labeled negatively. Research shows that early stage diagnosis affects individuals’ quality of life.
We are researchers on a community project based in Montreal called What Connects Us – Si qui nous lai. This project is dedicated to the complex task of finding ways to improve the quality of life of people living with Alzheimer’s and other related disorders and their caregivers. In addition to our background in communication, medical anthropology, rehabilitation and social network analysis, we are part of an interdisciplinary team that brings expertise in sustainable design (Annabel Sinn), community development (Chesley Walsh) and public health (Sian Yang).
The project aims to create a rich web of resources in the community by connecting the artistic, mental health and educational fields – and help reduce the stigma at the intersection of Alzheimer’s and other related disorders, mental illness and aging.
We have learned that part of our work should be about examining the way we communicate about dementia. The terminology surrounding neurological disorders should be chosen carefully. We aim to present our experiences around the use of the term Alzheimer’s in this public health community investment project.
Speaking About ‘Dementia’
Throughout history, there has not been a consistent way of talking about Alzheimer’s disease and other related disorders.
Fortunately, we have come a long way, because during the 18th century in the West, people suffering from neurocognitive disorders were described as “stupid” and “adult people”.
A wider range of more neutral terms than “dementia”, such as “neurocognitive disorder”, are used today.
Activities for People with Alzheimer’s
We are working with community-based organizations, health institutions and the public sector, primarily based in Montreal, to provide various activities such as art therapy, laughter yoga, dance therapy, memory activities and small public screenings for people living with Alzheimer’s. To facilitate activities. and their caregivers.
Through our partnership with this diverse group of collaborators, one of the hidden challenges of our work is to use the words and vocabulary to describe and inform our potential participants (individuals living with Alzheimer’s and related disorders and their caregivers). was around.
Whether we are working with community-based organizations and health institutions, we see that there is not an agreed-upon approach to talking about neurocognitive disorders. It affects our daily work and tasks.
Different terminology, no compromise
We are constantly adjusting the vocabulary chosen by our partners, which requires sensitivity to the implications of different words depending on the primary language of choice (French or English) or region (health or community-based). The Public Health Agency of Canada, for example, prefers to use the term “dementia.” Some organizations consider “dementia” a stigmatizing term and don’t use it at all, while others like it and ask us to use it.
In some cases, our partners prefer the term “Alzheimer’s disease and related disorders.” Other fellows choose the phrase “neurocognitive disease.”
The lack of general terminology can lead to many back-and-forth discussions when there is a need to send promotional tools for artistic activities. A simple poster may be edited many times because the words are considered to be stigmatizing or have negative connotations. We had to change the terminology of our project website more than once, moving from “people with dementia” to “people with neurocognitive disorders” to “people with Alzheimer’s and/or other related disorders.”
The task of translating vocabulary between French and English is even more challenging in the province of Quebec. The Public Health Agency of Canada uses the term “démence” to name its dementia-related program in French, which is now considered a stigmatizing term by many francophones.
allied equipment needed
We aim to bridge the gap between the public health, community organizations, mental health and educational sectors. This work also falls on other organizations and research projects that are spreading public awareness in the community for the language that can be shared to build bridges between different regional cultures as well as linguistic ones.
We need to take more initiatives in the community through language to ensure that we create a space where people from different communities facing “dementia” feel connected and accepted.
Community-based projects require more shared language for resource maps and lists, making it easier to identify organizations working to support people living with Alzheimer’s and other related disorders and those specific and Sensitive to potential margins that words can cause.
Public health institutions in Canada continue to focus on “dementia” as the number of senior citizens in the population continues to grow. According to the Canadian Institute of Health Information, the senior population is “expected to grow by 68 percent over the next 20 years.” As a result of that increase, “the prevalence of dementia more than doubles every five years for Canadians age 65 and older, from less than one percent for those ages 65 to 69 and older than 85 and older.” About 25 percent for people.”
building common language
Our experience points to a call for more discussion about the words we choose and their meanings. This discussion matters because it can lay some common ground for building long-term relationships among all organizations helping the community of people living with Alzheimer’s and other related disorders.
We cannot ignore the fact that people develop neurocognitive disorders, no matter what terminology we choose. We also can’t deny that with the ever-increasing population of people living with Alzheimer’s, creating a long-term and sustainable approach to supporting our community members living with Alzheimer’s and their caregivers is of immediate concern. .