Why is the concept of social inclusion important for us?

As scientists in the field of dementia research we aim to develop interventions for people living with dementia that promote their well-being and social inclusion. In doing so we ask: Does everyone in research, policy and practice share the same idea of what social inclusion for people living with dementia means? How can we ensure that interventions contribute to it? Shouldn’t there be a universal definition and clear criteria that determine social inclusion?

What did we do?

To answer these questions, we reviewed the scientific literature to find out how other scientists define and research the concept of social inclusion in the field of dementia research. Surprisingly, we identified only a few empirical studies on the subject. From the few studies we retrieved, we analysed:

  • the results sections,
  • the theoretical framing,
  • and the use of different research methodologies.

What did we find?

Empirical studies on social inclusion of people living with dementia are scarce and largely characterised by a lack of or inconsistent conceptualisation.

The identified studies almost exclusively investigated social exclusion. As a consequence of researching exclusion rather than inclusion, the attention was more on barriers causing exclusion than on supportive aspects facilitating inclusion. The main focus was on factors that lead to exclusionary processes such as stigmatisation, ageism, isolation, discrimination or emotional misuse of people living with dementia. For analytical clarity we described these exclusionary processes on a micro-, meso- and macro-level.

The micro-level encompasses the experiences and feelings of the person living with dementia. Exclusionary processes named in relation to this level are the severity of cognitive impairment, the restricted ability to express oneself verbally or physical restrictions due to incontinence or visual impairment.

On the meso-level that is related to interpersonal relationships, we found factors like changes in family relationships. For example the person with dementia is no longer perceived as the same person with whom the family members are familiar. This perception leads to the exclusion of people with dementia from decision-making processes or from social and community networks. In institutional settings this may mean that care is primarily focused on physical care and avoidance of risk rather than on resources and well-being.

On the macro-level, which is associated with the broader socio-cultural context, the limited possibilities of institutional settings (like nursing homes) to maintain a connection with families and friends or with the community may be influencing factors for exclusionary processes.

In our review we analysed that social inclusion and exclusion are not in binary opposition, but refer to dynamic processes that are influenced by people, time and context. Factors that are hindering or promoting social inclusion cannot simply be summed up. Rather they are connected in a complex interplay with each other. People can be included in one social group and be excluded from another one at the same time. The environment can also be inclusive and exclusive at the same time. For example, a nursing home can be seen as inclusive because the segregation of people with dementia in special care units may serve their needs for activity, autonomy and participation. On the other hand, it can also be seen as exclusionary because it hinders people living with dementia from being connected with the ‘outside world’.

The definitions of inclusion/exclusion that we found were not specific to dementia and they were characterised by a conceptual ambiguity owing to diverse conceptualisations deriving from diverse theoretical perspectives. Only one study focused on the meaning of social inclusion from the inner perspective of people with dementia. Of course, this is too little to really learn anything about how people with dementia themselves experience social inclusion or exclusion. In order to better understand them and their need to be socially included, more research involving people with dementia should be done in the future.

Key messages:

  1. We need to shift the focus from social exclusion (and how to avoid it) to social inclusion (and how to promote it).
  2. We need to limit the focus on negative outcomes and to emphasise positive outcomes; and we need to establish elaborated assessment tools to measure these positive outcomes.
  3. The most important perspective with regard to social inclusion is the perspective of people living with dementia. We need to listen to their perception on how they want to be included and how inclusion feels. Qualitative approaches to investigate the experiences of people with dementia and participatory research approaches should be the first choice.