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Care-What Helps, What Hurts?

January 7, 2015

By Mary Beth Wighton
Last week, the Waterloo Wellington Dementia Network hosted a very successful one-day educational event for professional care partners. The focus was the importance of developing good rapport and caring relationships with those that the health professional supports in particular persons with dementia.

Two speakers of the event included Mr. Bob Kallonen, Chief Operating Officer of Schlegel Villages, and Dr. Elaine Weirsma, PhD, Associate Professor, Department of Health Sciences, and Advisor, Interdisciplinary Certificate in Dementia Studies, Lakehead University. Their goal was to challenge the approximately 110 participants to enhance relationships between all carers.

In the middle of these two engaging speakers, a panel of four additional speakers shared with the audience their personal experiences of professional relationships and dementia. Dawn and | had the wonderful opportunity to be a part of this panel. We had the pleasure of joining Brenda Hounam, Person with Dementia, and Anne Hopewell, Carer for a Person with Dementia – her husband. Brenda, advocate extraordinaire, started our panel discussion by sharing some of her personal experiences of various medical relationships. Brenda has a wealth of knowledge as she has been diagnosed with early onset Alzheimers a number of years ago. Anne, then took over and also shared some stories with tips on enhancing relationships.

Next, it was me. I couldn't wait to get a hold of that microphone!This was my moment. The last few days, I had worked hard at trying to capture my thoughts on paper. The reality of it is, I have experienced numerous negative conversations with some members of the medical community. It is hard to forget.

The important thing for me to remember was that the attendees are the individuals who wanted to learn how to enhance their own relationships with their patients. Therefore, it was crucial I communicated particular points which someone could easily and readily implement during the next meeting with someone with dementia.

I had boiled down my experiences to the following “take aways”:
1. Be aware of the power the medical community wields during documentation of reports and the potential negative impact it may have on the patients financial insurance and ultimately wellbeing.
2. Question yourself about your own stereotypes. When you are working with someone who has dementia, ask yourself if you are comparing their symptoms to someone who is late-stage Alzheimer’s. It is shocking how often this happens.

It was then Dawn's turn to convince this audience of utilizing some of her suggestions to enhance relationships. People were busy taking notes as she shared the following:
✔ Use email to provide updates to the professionals. Ultimately, this becomes a journal of sorts, and enables people to review the case from the beginning.
✔ Avoid possible anxiousness and agitation of the patient, by reducing appointment wait times. Have the carer call ahead to confirm the appointment is on time. If not, let them alter it accordingly.
✔ Be careful of the language you use. In particular, be empathetic.
✔ Be the barrier of bad news. Instead of having the carer communicate things like revoking a licence, do it for them. It is much easier if the bad news comes directly from the medical community; and
✔ Prior to a diagnosis, know what the disease entails. If you do not, do the necessary research.

Perhaps the best way to summarize the object of the panel is by a quote from advocate, Kate Swaffer, (Advocate and activist for aged and dementia care ) “I think for some people they forget 'the human feeling person behind the illness/symptoms' and thus they forget to approach each interaction with the care that any relationship deserves.”

I come from a training background. Therefore, I'm very interested in if our words will change any behaviours of members of the audience. In other words, how do you measure success of the panel? For me, if I can help even just one person, then I have succeeded. I'm happy to report we have succeeded. After the event, I received an email from one of the participants. In it, she stated: “I was at the Dementia Network Conference and your experience has left a true impression on me. We can do things better, I know we can and I want to do as much as possible to get your voice out into Primary Care.”

We will be meeting with this individual in a few weeks to discuss our experiences in order to increase awareness. The Alzheimer Society of Ontario has been given funding to work on a campaign that will strengthen linkages with many groups to better serve people with dementia and their caregivers. I'm looking forward to being a part of this project to enhance carer relationships. Well-done!