ARTS AND DEMENTIA
MAPPING THE DEMENTIA JOURNEY
Dr. Elaine Wiersma, Principal Investigator; Drs. Pauline Sameshima & Sherry Dupuis, Co-Investigators
Mr. David Harvey and Dr. Phil Caffery, Project Leads
Mr. David Harvey and Dr. Phil Caffery, Project Leads
Overview of project
With funding from Lilly, The Alzheimer Society of Ontario along with researchers from the Centre for Education and Research on Aging & Health, Lakehead University, and the University of Waterloo, led a process to “map the dementia journey” in plain language from the perspectives and experiences of people living with dementia, care-partners and health service providers in Ontario. The project aims to capture the experiential elements of the journey. The mapping exercise is intended to be a living model that can be built upon and further developed in partnership. As a direct benefit to the Alzheimer Society, this work has the potential to guide education, program evaluation, contribute to service design, and support awareness campaigns. An experience-based understanding of the dementia journey will also inform public policy and health system planning advocacy efforts with external partners, including primary care, long-term care, community service agencies, regional health agencies, and government.
Research
The purpose of this study was to work with people living with dementia and care partners (including family and health and social service providers) to explore the experiential elements of the dementia journey. Using a qualitative approach, the researchers worked with people living with dementia and care partners to create a living "map" of the dementia journey, key milestones along the way, factors affecting the key milestones, and how these factors influence the journey for individuals, families, and circles of support who are living with dementia.
Using visual approaches to mapping out the dementia journey, we held twelve focus groups in three separate regions in Ontario--southern Ontario, southwestern Ontario, and northern Ontario. We held four focus groups in each of the three regions comprised of specific groups: people living with dementia, care partners early in the dementia journey, care partners later in the journey, and health and social service providers. In total, 14 people living with dementia, 21 early care partners, 3 later care partners, and 14 health and social care providers participated in the focus groups.
Using a mapping concept, we provided an open canvas with a road, and worked with participants to pinpoint various key milestones and experiences along the "journey" or road. Using road signs, we then asked participants to choose a road sign that they felt best represented their journey at that point, and what the road looked like for them. We started by asking participants about the start of their journey, and continued asking about what happened next. As participants talked, the researchers sketched out the road.
Some of the original participants along with other individuals were invited to a one-day meeting in Toronto. A draft of the maps were presented, and participants were asked to work with the maps to change, add and confirm the findings. With this data, along with the focus groups and original maps, the findings were analyzed. The research team then came up with the concept of subway maps to outline some of the key findings, and at each station, the findings would be presented as the street above the subway, with the corresponding road signs that were identified by participants. In this way, a layered and textual analysis was able to visually presented.
In addition, artistic representations have also been created.
Click here for paintings.
Click here for poetry.
A summary report of the study is available below.
With funding from Lilly, The Alzheimer Society of Ontario along with researchers from the Centre for Education and Research on Aging & Health, Lakehead University, and the University of Waterloo, led a process to “map the dementia journey” in plain language from the perspectives and experiences of people living with dementia, care-partners and health service providers in Ontario. The project aims to capture the experiential elements of the journey. The mapping exercise is intended to be a living model that can be built upon and further developed in partnership. As a direct benefit to the Alzheimer Society, this work has the potential to guide education, program evaluation, contribute to service design, and support awareness campaigns. An experience-based understanding of the dementia journey will also inform public policy and health system planning advocacy efforts with external partners, including primary care, long-term care, community service agencies, regional health agencies, and government.
Research
The purpose of this study was to work with people living with dementia and care partners (including family and health and social service providers) to explore the experiential elements of the dementia journey. Using a qualitative approach, the researchers worked with people living with dementia and care partners to create a living "map" of the dementia journey, key milestones along the way, factors affecting the key milestones, and how these factors influence the journey for individuals, families, and circles of support who are living with dementia.
Using visual approaches to mapping out the dementia journey, we held twelve focus groups in three separate regions in Ontario--southern Ontario, southwestern Ontario, and northern Ontario. We held four focus groups in each of the three regions comprised of specific groups: people living with dementia, care partners early in the dementia journey, care partners later in the journey, and health and social service providers. In total, 14 people living with dementia, 21 early care partners, 3 later care partners, and 14 health and social care providers participated in the focus groups.
Using a mapping concept, we provided an open canvas with a road, and worked with participants to pinpoint various key milestones and experiences along the "journey" or road. Using road signs, we then asked participants to choose a road sign that they felt best represented their journey at that point, and what the road looked like for them. We started by asking participants about the start of their journey, and continued asking about what happened next. As participants talked, the researchers sketched out the road.
Some of the original participants along with other individuals were invited to a one-day meeting in Toronto. A draft of the maps were presented, and participants were asked to work with the maps to change, add and confirm the findings. With this data, along with the focus groups and original maps, the findings were analyzed. The research team then came up with the concept of subway maps to outline some of the key findings, and at each station, the findings would be presented as the street above the subway, with the corresponding road signs that were identified by participants. In this way, a layered and textual analysis was able to visually presented.
In addition, artistic representations have also been created.
Click here for paintings.
Click here for poetry.
A summary report of the study is available below.
