Taking control of our lives: A self-management pilot program for people living with dementia

Over the past few months, the Murray Alzheimer Research and Education Program (MAREP) has been involved in the evaluation of a new self-management program for people living with early-stage dementia. The project, led by Elaine Wiersma, PhD, at Lakehead University, was piloted in Guelph over eight weeks and facilitated by two staff from the Alzheimer Society of Waterloo Wellington.

Photo of Caitlin Agla (Facilitator) and George and Vicki Ballentine (Program Participants)Caitlin Agla (Facilitator), George & Vicki Ballentine (Pilot participants)

The research team, led by Lisa Loiselle, Associate Director of Research at MAREPobserved a group of four persons with dementia and three partners in care and recorded detailed notes about the program and its delivery. Facilitators provided their reflections and researchers held focus groups with participants immediately after each session.
Overall, the program was very well received. All seven participants enjoyed contributing to the discussion and felt the topics were extremely 
relevant. In addition, participants were very respectful and encouraging of each other. The supportive environment created a safe place for 
learning and sharing, which was enhanced by the knowledge and compassion of the facilitators. Humour helped to ease tension and create a comfortable atmosphere, particularly when discussing difficult topics. 
Participants were fully engaged in the learning process through a dialogue education framework. They appreciated the variety of techniques used to 
present new information, such as open discussion, brainstorming activities, visual tasks, and breathing exercises. A person-centered approach enabled each participant to engage in their preferred learning style and adapt the curriculum to his or her own context. As an example, participants often chose to discuss questions openly as a group instead of in pairs, while facilitators recorded their ideas on flipchart papers rather than participants writing their own notes.
While all participants were able to contribute well to group discussions, on a number of occasions, it was necessary for facilitators to direct the attention of persons with dementia to particular sections in the workbook by referring to colourful formatting. The use of colour, bulleted lists and 
boxes around important material was very helpful in highlighting key information. 
These findings help to better understand ways of engaging persons with dementia in the learning process. The program will also be piloted in Thunder Bay, Ontario and Vancouver, British Columbia. The lessons learned from the evaluation of all three pilot programs will provide a basis for making revisions to the final curriculum. 
We would like to express our appreciation to everyone involved in the Guelph pilot and extend a very special thank you to the facilitators, Caitlin and Alanna!