Inclusivity and Dementia: Health Services Planning with Individuals with Dementia

Abstract

Historically, Alzheimer societies have identified the care partners of persons with dementia as their central clients. This focus is broadening to include the person with the disease, as well. This paper presents the results of a Canadian research study addressing organizational considerations related to effective inclusion of persons with dementia in planning and decision-making about health services and programs. Our findings suggest that effective inclusion requires action at multiple levels by individuals with dementia, care partners and friends; service organizations and providers; and funding organizations. Additional research is needed to explore the applicability of these findings to other organizations in different localities and to examine emergent

Playing with meaning: using cartoons to disseminate research findings

“…Participant: I call them Not So NICE (man with dementia, retired surveyor, age 68) Self-deprecating humour, plays on words, joke telling and laughter featured a lot in the corpus of data. Other researchers whose fieldwork involves people with dementia have found this too (Whitfield and Wismer, 2006). Some people involved in the main study took humour very seriously; they were working on a joke book, a compilation of their favourite jokes, which has now been published (Scottish Dementia Working Group, 2010).…”

Walking in the neighbourhood: Performing social citizenship in dementia

“…Our purpose in this article is to take the analysis a step further to explore how community-based activity can potentially support social citizenship , which we understand as “a relationship, practice or status in which the person with dementia is entitled to experience freedom from discrimination, and to have opportunities to grow and participate in life to the fullest extent possible” ( Bartlett & O’Connor, 2010 , p. 37). Various scholars have identified the importance of social citizenship for people with dementia ( Bartlett & O’Connor, 2007 ; Baumbusch, 2008 ; Behuniak, 2010 ; Cantley & Bowes, 2004 ; Gilmour & Brannelly, 2010 ; Milne, 2010 ), and there is increasing interest in developing policies and guidelines for better supporting people with dementia as active and engaged citizens ( Whitfield & Wismer, 2006 ; Williamson, 2012 ). However, there has been very little work done to examine the potentially important role of community-based activity groups in supporting social citizenship.…”

Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies

“…In the absence of effective treatments, research into the care, quality of life and social inclusion of people with dementia has been identified as a global public health priority (World Health Organization, 2012). There is growing recognition that the development of effective policies and services requires an understanding of the perspectives of people with dementia, yet they remain widely excluded from research (Beattie, Daker-White, Gilliard, & Means, 2004; Hellstrom, Nolan, Nordenfelt, & Lundh, 2007; Whitfield & Wismer, 2006; Wilkinson, 2002). Since the 1990s, researchers, advocacy organizations and people with dementia have challenged this, arguing that it reinforces negative stereotypes and contributes to social exclusion (Cotrell & Schulz, 1993; Downs, 1997; Hellstrom et al., 2007; Robinson, 2002; Wilkinson, 2002).…”