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O2‐08‐04: Support, health, activities, resources, and education: The evidence‐based share program for persons with early‐stage dementia and their family caregivers
Author(s) -
Whitlatch Carol J.,
Femia Elia E.,
Szabo Sarah,
Orsulic-Jeras Silvia,
Zarit Steven H.,
Heid Allison R.
Publication year - 2015
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2015.07.174
Subject(s) - dementia , psychosocial , general partnership , psychological intervention , psychology , intervention (counseling) , health care , nursing , medicine , gerontology , psychiatry , disease , business , finance , pathology , economics , economic growth
Background: Consumer engagement is promoted as best practice however is often done without authenticity leading to “tokenism”. This is particularly true for people living with dementia, often viewed as less capable of contributing meaningfully. In 2012, a research team of 17 including people living with dementia, informal caregivers and service providers began developing an 8week self-management education program for people living with dementia “Taking Control of Our Lives”. 3 Advisory Hubs (40 people, 20 living with dementia) participated in an iterative knowledge translation process, guiding decisions about content, defining objectives, and testing learning tasks. Two pilots were held with 10 people living with dementia and 8 care partners. The goals of this project were to explore processes for meaningfully engaging people living with dementia in program development, develop tools to support meaningful engagement of people living with dementia, and develop a highly effective self management of dementia curriculum informed by the real needs of participants. Methods: The product and process applied principles of Social Citizenship (Bartlett & O’Connor 2010), Authentic Partnerships (MAREP, 2011) and Dialogue Education (Vella, 2008). Data was gathered through research team and advisory hub interviews and focus groups, meeting notes analysis, and meeting and program facilitator reflections, and reflective focus groups with pilot participants. Results:Mid-project data revealed 4 components critical to meaningful engagement: (1) Purpose (clear, meaningful, relevant), (2) People (enthusiasm, commitment, openness, humility), (3) Relationships (respect, safety, listening, relationships beyond, facilitation, connections, humour), and (4) Process (honour process, expectations, consistency, information flow, reflecting). These components are being