Engagement and social interaction in dementia care settings. A call for occupational and social justice

Abstract

As full citizens, people with dementia are entitled to engage in social and occupational activities in residential care settings. Limitation or deprivation of choice and experience of valued occupations has been described elsewhere as occupational injustice. This research frames the unmet needs of people with dementia for occupation and social interaction, as issues of human rights and citizenship. It identifies a gap in current measurement tools of engagement in residential settings and in response, presents the Assessment Tool for Occupational and Social Engagement (ATOSE) as an objective measure of engagement. It examines results from a study of five residential care settings in Ireland using the ATOSE which included 73 residents with dementia and/or enduring mental health diagnoses. Residents spent on average, 38% of their time engaged and 62% of their time not engaged while in their communal sitting rooms. The ATOSE observations supported the rights of residents as citizens to have low levels of engagement addressed. A critical gerontology lens is employed to discuss concepts of citizenship, occupational justice, and social justice in the context of this research project.

Dementia Friendly Care: Methods to Improve Stakeholder Engagement and Decision Making

“…Ten studies adopted a purely qualitative approach, 25,27,30,[33][34][35]38,39,41,42 with nine using mixed methods. 26,28,29,31,32,36,37,40,43 The majority of articles (n=12) 25,[27][28][29][30][33][34][35][37][38][39]42 included multiple stakeholders, including those living with dementia; there were three studies 26,32,41 including only people living with dementia, and others solely focused on other stakeholders, for example employers (n=1), 43 caregivers (n=1) 40 or health and social care professionals (n=2). 31,36 The papers reviewed were drawn primarily from Canada (n=6), [25][26][27][28][29]41 and the UK (n=5), 35,36,38,42,<...>…”

“… 40 The context where the person lives is also important; creating environments that maximize opportunities for participation has been the focus of hospital-based research, 36 , 41 while methods to involve people living in care homes also pose distinct challenges. 32 , 33 …”

“… 26 , 28 , 29 , 31 , 32 , 36 , 37 , 40 , 43 The majority of articles ( n =12) 25 , 27–30 , 33–35 , 37–39 , 42 included multiple stakeholders, including those living with dementia; there were three studies 26 , 32 , 41 including only people living with dementia, and others solely focused on other stakeholders, for example employers ( n =1), 43 caregivers ( n =1) 40 or health and social care professionals ( n =2). 31 , 36 The papers reviewed were drawn primarily from Canada ( n =6), 25–29 , 41 and the UK ( n =5), 35 , 36 , 38 , 42 , 43 with others from Ireland ( n =2), 31 , 32 Australia ( n =2), 30 , 37 the USA ( n =1), 40 the Netherlands ( n =1), 33 Sweden ( n =1) 34 and Taiwan ( n =1). 39 Most studies ( n =15) 25–27 , 29–31 , 33–35 , 37–40 , 42 , 43 focused on engaging and including those living in the community (which included two studies focusing on attending day provision or clinics within a hospital 35 , 39 ), two studies focused on care homes settings 28 , 32 and two focused on the hospital setting.…”

“…Examples of attempts to address this in care practice by professionals can be found in Australia, 30 the Netherlands 33 and Ireland. 31 , 32 Groen-van de Ven et al 33 found that shared decision making with people with dementia was possible, but that it required an adapted process. Giving potential service users and their families the opportunity of trying out services before committing to use them was one way of achieving this.…”

Social participation of seniors: Applying the Framework of Occupational Justice for healthy ageing and a new approach to policymaking

“…To date, the FOJ has primarily been applied to populations for which potential occupational discrimination has been largely documented, such as prisoners, substance users, or ethnic minority groups (Benjamin-Thomas & Laliberte Rudman, 2018). With seniors, the FOJ or the occupational justice theory has generally been applied to those living in care homes (Andrew & Wilson, 2013;Causey-Upton, 2015;Morgan-Brown et al, 2017;O'Sullivan & Hocking, 2013), or as it relates to a specific topic, such as technology use (Kottorp et al, 2016), or for a specific population (Brown, 2008;Lim & Stapleton, 2016;Orellano-Colón et al, 2015). However, the FOJ offers a promising perspective to analyze the barriers and inequalities of participation in a diverse population of community-dwelling seniors, potentially resulting in the creation of policies aimed at reducing existing inequities in health.…”