By: Bruce Wray –
At the Alzheimer Society, we focus our communication outreach on a variety of key messages: de-stigmatizing dementia, awareness building and education of the condition and publicizing the availability of the programming and services designed to counsel and support people living with Alzheimer’s or another type of dementia. We strive to communicate a proactive message that a diagnosis of the disease is not the end of your life as you know it. To be sure, it is life altering and presents a myriad of challenges from a medical and lifestyle point of view, but the main message is that it is possible to live well with dementia. That, even with the diagnosis, it is possible to continue to be a valuable and contributing member of society. All of this is particularly relevant (and the benefits maximized) when the diagnosis of the disease is determined as early as possible.
In these messages we often use the term ‘Journey’ referring to the processes and changes that will be experienced by those living with the disease. And like all journeys, there is a final destination. Presently, Alzheimer’s disease and other dementias are incurable and to a large extent, untreatable. Because we as an organization want to focus on what a person can and should do when diagnosed with the disease, we seldom openly discuss the inevitableness of the condition in our key messaging. The focus on the proactive sometimes precludes an adequate discussion of the ultimate reality. This lack of discussion became clear to us when we received a written submission from the daughter of a woman who recently passed away as a result of dementia. Colleen Ellison-Wareing’s essay on the grief she felt with her mother’s passing is powerful. The article entitled ‘Sorry For Your Losses’ captures the many different emotions and indeed the many types of grief one feels during the later part of the dementia journey.
It’s an important piece in that it eloquently portrays the most personal and private of experiences that we all will encounter – either as a family member, a friend or colleague and indeed (and finally) as a human being. It also creates an opportunity for us to present Colleen’s writing as the centerpiece of a platform where we can honour and pay tribute to those whom we love and have completed (or are near the end of) the dementia journey. Our website features a new blog section called Tributes and Reflections where Colleen’s piece will be posted. We invite others to submit their thoughts about this portion of the dementia journey. These posts will also be shared on our social media platforms where further engagement can be featured.