Social inclusion of people with dementia – an integrative review of theoretical frameworks, methods and findings in empirical studies

Abstract

The social inclusion of people with dementia (PwD) is recognised as a global goal of legislation, societal initiatives and service provision. Ensuring the social inclusion of PwD in these areas implies that its dimensions and domains are clear and unambiguous. However, the concept of social inclusion as it is currently used by researchers and practitioners is often vague or acts as a container concept for a variety of different approaches. This paper reports on an integrative review that analysed qualitative and quantitative studies on social inclusion and exclusion of PwD. It focused not only on the empirical results of the included studies but also on the theoretical embedding and methodological approaches to the concept of social inclusion and exclusion. We find that empirical studies on the social inclusion of PwD are scarce and largely characterised by a lack of or inconsistent conceptualisation. Against this background, the operationalisation of the concept and the assessment of the individual aspects of social inclusion with standardised instruments seem to be premature. Substantial theoretical and methodological work is needed to guide research on the social inclusion of PwD. The empirical results show that relationships with other people and being integrated into social networks are essential aspects of social inclusion. Likewise, the strategies and attitudes of caring persons can help to create or reinforce exclusion.

Effects of social restrictions on people with dementia and carers during the pre-vaccine phase of the COVID-19 pandemic: experiences of IDEAL cohort participants

“…There was less evidence to show that people felt excluded at an economic or environmental level. These ndings support evidence that the quality of relationships and opportunities to socialise are pivotal elements of social inclusion for people with dementia (Pinkert et al, 2021). Social relations are a dimension of social exclusion in older age (Walsh et al 2017) but the reduction in or loss of skills in communication during the pandemic for people with dementia could lead to further isolation and restriction of opportunities for social relations and civic engagement.…”

“…Although personal strategies were useful, and some may have felt comfortable with reduced social contact, there was little evidence of speci c dementia support at a broader social or cultural level. There was little evidence of the experience of decline being acknowledged or understood outside of individual experience, indicating social exclusion at the meso-(interactional environment) and macro-(broader social) level (Pinkert et al, 2021).…”

“…Many people with dementia are already vulnerable to the wider effects of social exclusion due to a complex range of factors including societal attitudes and health status (Pinkert et al, 2021), but during the pandemic, the risk of social exclusion could have increased. In their review of old-age social exclusion, Walsh et al (2017) identi ed six interconnected common dimensions of social exclusion experienced by older people: civic participation; services, amenities and mobility; materials and nancial resources; social relations; socio-cultural aspects; neighbourhood and community.…”

“…This has had psychological, social, and physical health consequences (Pongan et al, 2021). Social inclusion is important for the well-being of people with dementia (Pinkert et al 2021) and their carers (Greenwood et al, 2018), and as a section of our society already recognised as marginalised (Wright and O'Connor (2018), they could suffer disproportionately.…”

Supportive care for older people with dementia: socio-organisational implications

“…As suggested by Brooker (2003), the person-centred approach can be summarised by the acronym VIPS: valuing people with dementia and their care-givers, treating them as individuals, adopting the perspective of the person with dementia and maintaining the person's social environment because of the fundamental importance of relationships in sustaining personhood. From this perspective, individuals need comfort or warmth to 'remain in one piece' when they may feel as though they are falling apart … Individuals need to be socially included and involved both in care and in life [Pinkert et al, 2021], and more than simply being occupied; they need to be involved in past and current interests and sources of fulfilment and satisfaction. (Fazio et al, 2018: 11) Various reviews have underlined the following effects of the person-centred approach on resident outcomes: controlling the behavioural symptoms of residents, slowing their decline in the cognitive sphere and in activities of daily living, reducing the use of medication and defending their quality of life (Moos and Björn, 2006;Olsson et al, 2013;Li and Porock, 2014).…”