NOTE: This article by Phyllis Fehr, Client Experience Advisor for our Society, makes mention of a survey that is now closed. For more information on the Dementia Friendly Communities Initiative, please contact Karen Robins at firstname.lastname@example.org.
What makes up a dementia-friendly community? This is the quest of the Empowering Dementia-Friendly Communities project for Hamilton and Haldimand, launched recently with a survey of people living with dementia (PLWD) and their care partners. The huge initiative, managed by the Hamilton Council on Aging, will use the data to inform specific recommendations and action plans to support communities where PLWD are understood, respected and supported, and where they can continue to contribute to community life.
These insights will be critical to managing and thriving with a diagnosis. When I was diagnosed with early-onset dementia at 48 years old, my husband attended the appointment with me. When the doctor entered the room, it was as if I no longer existed. The doctor spoke directly to my husband, and never spoke to me or looked at me once. I now had a diagnosis of a cognitive impairment and my personhood was immediately taken away. At that moment, my competency was removed. Because of this diagnosis, the doctor assumed I could no longer make my own decisions.
When someone is given a diagnosis of cognitive impairment, such as dementia or Alzheimer’s, the advice is often to go home and get affairs in order. Kate Swaffer, of the Dementia Alliance International community, terms what happens at this moment is “prescribed disengagement.” This happens once you receive your diagnosis and the world around you believes it has to take over for you on the assumption that your brain no longer works. They do not see past the diagnosis to what you are still able, want to or need to do. Due to a lack of awareness, understanding and education, people assume that we are unable to think on our own which leads to premature isolation and disengagement for those diagnosed.
The potential impact of prescribed disengagement affects many lives. Currently, the Alzheimer Society estimates that there are 10,574 people living with dementia in Hamilton and approximately 1,700 in Haldimand. Dementia is defined as a cognitive impairment caused by a brain disease. Dementia can affect memory, learning, concentration and executive and physical functioning, among other symptoms. The person living with dementia may have one or all areas of functioning affected. It is not a normal part of aging or a mental health disease. Dementia does not affect all people the same way; each person’s dementia journey is unique.
The medical system and broader communities need to change as the stigma supported by their assumptions and actions can have a powerful impact on the quality of life and experiences of people living with dementia. Contrary to the stigma that exists around dementia, we have abilities, intelligence, knowledge and wisdom, preferences, desires and resilience. We are adaptive and creative in continuing to overcome daily challenges and may have to do things differently than most people. At this point in my dementia journey, I am able to speak publicly, participate in research and act as an advocate for people with dementia on local, national and international boards and committees. Today, I realize I still have my intelligence. I just need to access it differently. I still have all my educational and professional experience. I know I will decline, and I am prepared for that. But for now, I am still ME.
The survey is one phase of the project. Another, coming in 2021, is the Faces of Dementia, and awareness campaign to highlight stories of living with dementia. Moving the needle toward inclusive and accessible communities is a shared understanding of experiences, reducing stigma and opportunities for change in Hamilton and Haldimand. If you are a PLWD or a care partner, please complete the survey by Nov. 6; your input would be so important. The survey can be accessed through https://coahamilton.ca or https://www.surveymonkey.com/r/HCOA_Survey.
Requests for assistance or a printed survey are welcome. If you know someone who is living with dementia, please take a few minutes to assist them in completing the survey. Their voice is important and needs to be heard.
Hamilton resident Phyllis Fehr is an advocate, researcher, speaker and intensive care/cardiac care nurse/sexual assault nurse examiner (currently nonpracticing) and a member of the Empowering Dementia-Friendly Communities Hamilton/Haldimand Project Working Group and Steering Committee. She has spoken at the Senate of Canada and the United Nations Convention on the Rights of Persons with Disabilities in Geneva, as well as other national and international sessions. She has been living with dementia for 13 years.
This article originally appeared in the Hamilton Spectator.
Interested or have any questions?
To learn more about this exciting project, please contact Karen Robins. Karen (pictured left) will be happy to share more information about what a Dementia Friendly Community is, and how you can be involved in making our communities a great place to live for everyone!
Phone: 1-888-343-1017 ext. 211
This project is brought to you in partnership with the Hamilton Council on Aging, and is funded by the Public Health Agency of Canada.