MAREP recognizes that all behaviours have meaning. Behaviours may not necessarily be related to pathology, and in many cases are likely not. Instead behaviours are often indicative of an unmet need in the person (e.g., physical, psychological/emotional, social, environmental) or a response to circumstances within the social or physical environment that may be frustrating, frightening or confusing for the person. Our discussions with persons with dementia highlight how uncomfortable they are with the language commonly used to reflect behaviours -- “challenging”, “disruptive”, or “disturbing”. Thus, we adopted the term “responsive” behaviours to reflect a response to an unmet need or a means by which persons with dementia communicate their discomfort with something in the immediate setting such as the physical body (e.g., urinary tract or other infection), social environment (e.g., boredom, invasion of space), or the physical environment (e.g., lighting). This conceptualisation requires that we find better ways of understanding what persons with dementia are trying to communicate and suggests that interventions may be needed that address and change the social and physical environment (e.g., how we approach persons with dementia during care, lighting within the facility, etc.).
Principal Investigators: Sherry Dupuis, Ph.D., Elaine Wiersma, M.A., and Lisa Loiselle, M.A. A multi-phased, on-going project conducted in partnership with the Psychogeriatric Research Consultants of South Central Ontario and the Ruth Sherman Centre for Research focused on gaining a comprehensive understanding of responsive behaviours in long-term care settings.
Phase One – A quantitative survey designed to examine the nature of responsive behaviours in long-term care settings by identifying the frequency of responsive behaviours, the perceived triggers of those behaviours and the frequency of use and perceived effectiveness of various strategies used in response to behaviours. (Funded by the Ministry of Health and Long-Term Care). The final Report from Phase One was released in February 2005. Click here for Summary of Final Report.
Phase Two – Based on information from Phase One, this phase of the project is focused on the development of an educational tool to train staff on how to accommodate and respond to specific types of responsive behaviours (Funded by the Ministry of Health and Long-Term Care). For more information on this educational tool, and to order this valuable resource, please click here.
Phase Three – A qualitative study designed to examine the meanings and experience of responsive behaviours for various long-term care staff and how those meanings and experiences influence the ways in which staff respond to those behaviours (Funded by the Alzheimer Society of Canada). Final report will be available in the spring 2008.
Principal Investigators: Sherry Dupuis, Ph.D. and Bryan Smale, Ph.D. A nation-wide project designed to identify the types of in-house recreation programs currently used in long-term care facilities; identify the types of community access recreation programs used in long-term care facilities; determine the perceived benefits of community access recreation programs; examine the barriers and challenges associated with providing community access recreation programs; and determine the perceived effectiveness of both in-house and community access recreation programs in enhancing the over-all well-being of residents.
The final report from the study of In-house and Community Access Recreation Programs in Long-Term Care Facilities in Canada was released in August 2003.
A multi-phased, province-wide project focused on identifying the needs of community-based caregivers of persons with dementia and examining the extent to which community health and social support services were meeting their needs. The outcome of this project was The Dementia Supportive Environment Framework – an alternative model of dementia care developed by and for caregivers of persons with dementia supported by care providers, planners, and policy makers. This research project was funded through Ontario’s Strategy for Alzheimer Disease and Related Dementias (Initiative #6). The final reports are available, please click the links below to download a copy of the reports.
Please click on each one for a copy.
In their own voices: A Profile of Dementia Caregivers in Ontario - Stage 1: Survey Results
In their own voices: Dementia Caregivers Identify the Issues - Stage 2: Focus Groups
Caregivers of Persons with Dementia: Roles, Experiences, Supports and Coping - A Literature Review
This multi-phased, on-going research program is working towards developing a comprehensive understanding of the transition process and experience of moving a family member to a long-term care setting from the perspectives of all those involved in the process. The ultimate goal of this research program is to develop a planning framework that would ensure a successful transition process for all those involved.
Phase One focused on the experience of various caregiving transitions from the family members’ perspectives. Specifically, it examined the experience of moving an older adult relative from the community to a long-term care setting and from one care unit to another within a continuum of care facility. From this project, we were able to identify a number of factors that influence the overall experience of the move to long-term care and either serve to impede or facilitate a positive transition for families. A detailed description of the factors is available in the Journal of Gerontological Social Work, 46(1), 17-46) For a copy of the Principles for Easing the Transition for Families and New Residents, Click Here
Working in collaboration with the Partnership in Transitional Care Task Force (Champlain Region), this study used insights from Phase One to further examine the transition process of moving a relative to a long-term care home from the perspectives of both the family members and the staff members. Thirty-four long-term care homes in the Champlain Region of Eastern Ontario distributed questionnaires to family members who had experienced the transition process during the previous 18 months and to staff members who were involved in the process within those homes. This research is helping to inform the development of concrete tools and workshops to better support families making the move to long-term care homes and the staff who assist families during the move. For a copy of the summary report on the family members’ experiences, Click here. For a copy of the summary report on the staff members’ perspectives, Click here.
A longitudinal study following family caregivers of persons with dementia from very early in their institution-based caregiving careers to much later in the disease process in order to examine how the caregiving role and experience in that role change as the disease progresses. This on-going research is funded by the Alzheimer Society of Canada.
The purpose of this collaborative project was twofold: (1) to develop a standardized curriculum grounded in the principles of person-centred care to assist point-of-care staff and their front-line managers to respond effectively and with respect to the verbal and physical expressions of needs (i.e., responsive behaviours) demonstrated by persons with dementa in long-term care settings; and (2) to conduct a preliminary evaluation of the curriculum. Click here to download a copy of the final report.
A number of coaches of the GPA curriculum have been trained and the GPA curriculum has been introduced in a number of Facilities/Sites across the province.
For more information regarding GPA certification, click on the GPA brochure or contact Paula DiLoreta at 905-777-3837, ext. 12506 (Funded by Regional Geriatric Program, Central).
A Changing Melody is the first forum of its kind in Canada to bring persons with dementia and their partners in care together with other persons with dementia and partners in care to learn from each other as well as from experts in dementia care on how to live a meaningful life with dementia. This evaluation study is examining the outcomes of the forum for all participants involved in the forum. Specifically, it is designed: (1) to identify what participants hope to get out of such forums; (2) to examine the potential benefits of the forum for different participants; and (3) to document challenges and issues faced by participants in their involvement in the forum (Funded by the Homewood Foundation and the UW/SSHRC Small Research Grant Program). A Changing Melody Tool Kit is now available.
Conducted in partnership with several local Alzheimer Chapters in South Central Ontario, this longitudinal project is designed to: (1) examine the experience and meaning of food and mealtimes for persons living with dementia and their partners in care; and (2) understand how the experiences and meanings of food and mealtimes change over time for persons living with dementia and their partners in care.
The ultimate goal of this project is to gain a better understanding of the issues faced by families experiencing dementia specifically related to food and mealtimes in order to inform the development of educational tools and interviews to better assist families with these issues. (Funded by the Social Sciences and Humanities Research Council and the Alzheimer Society of Canada).
A number of Fact
Sheets on eating and meal times in the dementia context have been created as part of
this project. Online versions can be obtained by clicking on the links
below:
Additional resources from the Eating Together study:
The broad purpose of this SSHRC funded research is to evaluate the impact of a research-based drama, called I’m Still Here, in changing understanding, images, and actions about dementia and dementia care. The hour-long drama takes themes from research about life with dementia (including Alzheimer Disease) and builds several story lines showing different persons living with dementia and their relationships with friends, daughters, and care partners. The research has three primary objectives: (1) to examine how personal understandings of dementia change with the introduction of a research-based drama; (2) to evaluate the impact of a research-based drama on persons’ understanding of, images, and actions with persons with dementia in the short term (i.e., six weeks) and over the long term (i.e., one year) after seeing the drama; and (3) to examine differences in the impact of the drama between two groups of persons (family and formal care providers—including leaders/policy makers). This research has incredible social implications, particularly in the potential I’m Still Here has to change personal meanings and understandings of dementia, imaging and actions about dementia and dementia care, and break down the stigma associated with dementia. This project also has the potential to inform knowledge translation practices by providing insights into alternative ways of transferring research into practice.
Murray Alzheimer Research and Education Program
RBJ Schlegel - UW Research Institute for Aging
University of Waterloo, LHI
200 University Ave, West
Waterloo, Ontario
Canada N2L 3G1
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