Gathering Input for the Canadian Dementia Priority Setting Partnership from People with Dementia

By Norma Kirkby, Alzheimer Society of Manitoba and Jennifer Bethell, Canadian Dementia Priority Setting Partnership

The Canadian Dementia Priority Setting Partnership relies on partner organisations to help reach people with dementia, their friends, family and caregivers, and health and social care providers from across Canada. From the outset, it was clear that the Alzheimer Society, a nationwide organisation dedicated to helping Canadians affected by Alzheimer’s disease and other dementias, would be an invaluable network for connecting with these audiences and, in particular, for reaching out to people with dementia. The Canadian Dementia Priority Setting Partnership is fortunate to be working with Alzheimer Societies across Canada, including the Alzheimer Society of Manitoba which exists so that people in that province who are affected by dementia receive the help they need today and have hope for the future.

The Alzheimer Society of Manitoba was one partner organisation that was ready before the questionnaire was even launched. Manitoba’s support groups for people with dementia members are always eager to speak out when asked for their opinions. The Canadian Dementia Priority Setting Partnership was no different!

Alzheimer Society of Manitoba staff who work with groups discussed how they could most effectively engage members in the data collection process. Knowing the group members well, they decided that a focus group setting would best accommodate the members. Conversation is a skill that the group members share.

In the week prior to the planned focus group, the study was described and members were asked if they were interested in taking part in a discussion about research topics the following week. All were eager.

On the day of the discussion the regular group facilitator and the focus group leader met the group as they arrived. Already, the question “What would you like researchers to find out about dementia?” was posted on a flip chart, knowing it would lead the discussion in many directions. Prompt questions were also used to redirect conversations into areas that were not being spontaneously explored. Allowing the discussion to flow meant group members could contribute their thoughts on a topic at any time rather than just in response to a directed question.

To help the group reflect on their comments, the focus group leader recorded key words or phrases on a flip chart as they were raised by the group members. To increase readability of the comments, differing colours of markers were used to record each comment. The regular group facilitator, who was also in attendance, recorded more detailed proceeding notes so that the focus group leader could remain attentive to the discussions.

Following the meeting, the group facilitator and the focus group leader conferred to confirm that they had noted the same key messages in the group’s responses. After this fact checking step, the focus group leader prepared the group’s collective response (the questionnaire was set up for individual and group responses) and forwarded it to the Canadian Dementia Priority Setting Partnership.

Through the familiar setting of a group of peers and open dialogue, Manitobans with dementia gave voice to the research topics they hope to see explored very soon.

The Canadian Dementia Priority Setting Partnership’s partner organisations have helped connect people from across Canada with the questionnaire asking for input on priorities for Canadian dementia research. Partner organisations have also contributed their time, knowledge and expertise by reaching out in ways that will work with their membership. In this case, the Alzheimer Society of Manitoba helped the Canadian Dementia Priority Setting Partnership hear from people with dementia – a critically important outcome that would have been difficult to reach otherwise.

If you are based in Canada and have an interest in the future of dementia research, please go to the Canadian Dementia Priority Setting Partnership webpage to find out more and to take part in our questionnaire.