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CURRENT

DEMENTIA + DECISION MAKING PROJECT

The CCEL Dementia + Decision-Making Project is an initiative to support the rights of people living with dementia in making decisions about their care and well-being. We developed a package of resources following extensive consultations with people living with dementia, their family members and friends, caregivers, care partners, and health care professionals to share practical and legal information about these issues. These resources include videos, practical guides, information pamphlets and decision-making flow charts.

 

This initiative is intended to support people living with dementia, as well as family or friend caregivers and care partners, and health care providers. The resources were developed based on the information gathered from all these perspectives to ensure that these materials can best serve these audiences.

 

The full package of resources can be found on the CCEL Dementia + Decision-Making Project webpage.

ASSESING DECISION-MAKING (in) CAPACITY IN THE CONTEXT OF ABUSE AND NEGLECT

This socio-legal study is being co-lead by Deborah O’Connor and Joan Braun and is funded by Social Sciences and Humanities Council (SSHRC). 

Research Team includes:  Deborah O'Connor, Joan Braun (Law, Lakehead University), Margaret Hall (Law, SFU), Rachelle Hole (Social Work, UBC-O), Krista James (Law and policy development, Vancouver Coastal Health (VCH), Alison Leaney  (BC Public Guardian & Trustee (PGT), Kelly Pursar. (Law, Queensland University), Natasha Marriette – Doctoral Research co-ordinator, Social Work, UBC

Assessing decision-making capabilities in situations of abuse and neglect is recognized as an extremely complex and morally challenging area of professional practice. Internationally, the complexity of issues surrounding mental capacity (MC) are being grappled with at both the legislative and practice level. Article 12 of the UN Convention for the Rights of Persons with a Disability (CRPD) has been particularly influential in foregrounding the importance for a more nuanced, sophisticated understanding of MC that recognizes context, capabilities, and rights. This necessitates new approaches for understanding and assessing decision-making capability (DCM) – the process whereby MC is evaluated in practice - given that existing practices focuses almost exclusively on cognition.  

 

The urgency to develop better understanding and practices related to decision-making capacity has particular significance for people living with dementia who routinely have their rights challenged because dementia-stigma and discrimination perpetuate misconceptions that those living with dementia are incapable and unable to participate in decision-making. 

 

Drawing on a citizenship-in-practice lens, this study seeks to understand current practices in assessing decision making abilities for adults experiencing abuse and neglect in order to find better ways to conduct these assessments that ensure they are more humane, person-centred and consistent with the UN Convention of Rights of People with Disabilities (CRPD). 

If you have any questions or are interested in learning more, please contact <Deborah.oconnor@ubc.ca> or <nmarriet@student.ubc.ca

604-551-0459 

FLIPPING STIGMA

Reducing Stigma and Promoting Social Inclusion of People with Dementia: Putting Social Citizenship into Practice is a community-based action research study striving to utilize the crucial perspectives of those people living with dementia in the community in order to combat the persistent stigma and social exclusion they face.

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BUILDING CAPACITY PROJECT

The ‘Building Capacity’ project is a cross-Canada partnership between researchers at the University of British Columbia and Lakehead University, and members of the Westside Seniors Hub in Vancouver and the North West Dementia Working Group in Thunder Bay. This four-year project is one of the first to launch under the Public Health Agency of Canada and its new, federally funded Dementia Community Investment strategy.

At its core, the ‘Building Capacity’ project aims to enable people living with dementia to participate in community life as full social citizens. The team uses a bottom-up, asset-based community development (ABCD) approach to support the growth of innovative community initiatives that will foster inclusion and reduce stigma by creating meaningful opportunities for people with dementia to remain active and socially connected.

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CITIZENSHIP ACROSS BORDERS

Research Team: Alison Phinney, Gloria Puurveen, Deborah O'Connor, Lillian Hung, Susan Cox, and Lee Burnside.

Brings together researchers and community partners from UW and UBC to investigate how to effectively support social citizenship of people with dementia in the health care system and the community at large.

Denise-and-Resident-2-September-Bistro-e

THE 
IDEAL
STUDY

Research Team: Jennifer Baumbusch (PI), Alison Phinney, Deborah O’Connor, Paddy Rodney, Catherine Ward-Griffin

Project Description: The purpose of this study is to develop a better understanding of how care is negotiated in long-term residential care (LTRC)  facilities. This is a 4-year critical ethnography that aims to generate a rich, contextualized understanding of the negotiation of care work in LTRC and to clarify factors (e.g. policies, best practices) needed to foster supportive collaborative relationships among families, residents and staff and improve the health and well-being of these groups. Specifically, this study will allow for an examination of the influence of socio-political and cultural contextual factors (e.g. Social locations: gender, class racialization; Organizational factors: healthcare funding, provincial policies, LTRC restructuring) on the negotiation of care work among residents, family members and staff.

Interim Report: IDEAL Site 1 Interim Report September 2015

MAKING ART FOR MAKING PLACE

Making Art for Making Place: The Effect of Visual Art in a Transitional Care Setting

Research Team: Alison Phinney (PI), Landon Mackenzie, Michael Wilson

Funder: UBC Hampton Fund Research Grant

Project description: Students from Emily Carr University created paintings for Yale Road Centre, a transitional care facility in Surrey, BC. We are conducting a focused ethnography, conducting observations and interviewing students, staff, and residents to learn more the benefits of the art for people with dementia.

There is growing interest internationally in the potential for visual art in health care facilities to promote healing and wellness for patients, but the evidence base is very limited. Therefore, the specific aims of this study are: (1) to explore how paintings contribute to place-making by providing orientation cues and opportunities for social and emotional engagement of residents; and (2) to understand how the process of creating these paintings can influence students’ understanding of the social impact of their art.

NEW FRONTIERS IN EPISODIC MEMORY TRAINING FOR PERSONS WITH ALZHEIMERS DISEASE & MILD COGNITIVE 
IMPAIRMENT

Research Team: Jeff Small

Funder: CIHR

Investigates how a memory training program called “Spaced Retrieval” (SR) might be effectively applied in helping persons with Alzheimer’s disease or Mild Cognitive Impairment improve their recent memory and quality of life.  Phase 2 CIHR grant project is in the data analysis stage.

THE USE OF MOBILE TECHNOLOGY APPLICATIONS TO IMPROVE COMMUNICATION BETWEEN CARE STAFF & RESIDENTS IN LONG-TERM RESIDENTIAL CARE FACILITES

Research Team: R. Wilson, J. Small, A. Mihailidis

Funder: CFN Health Technology Innovation operating grant (funded through the federal Networks of Centres of Excellence (NCE) program).

In long-term residential care (LTRC), many residents have cognitive impairments and/or do not speak English. These barriers make it difficult for them to communicate with care staff. Due to recent technological advances, a promising solution would be to pair mobile communication technology (e.g., tablet, smart phone) with mobile health communication Apps or “cApps”. For example, cApps that provide language translation or visual supports may enable care staff and residents to communicate more effectively. The purpose of this pilot study is to examine the current status of cApp availability in the app marketplace, survey use of cApps in LTRC practice, and generate recommendations for cApp features that would most effectively address communication challenges in LTRC. This project is in the data analysis stage.  facilities.

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