Insights on social citizenship and participation in the community among older adults with and without dementia

By Sophie Nadia Gaber

Participation in activities and access to places outside of the home can promote and maintain health and well-being for all of us, including older adults living with and without dementia. Participation in the community can enhance mental and physical health, and provide opportunities for increased physical activity, mobility, and cognitive stimulation. Continued activities and social interactions outside of the home also contribute to social aspects of health and well-being and foster social citizenship.

Our study was among the first to explore a cross-national perspective of how older adults enact their social citizenship through participation in the community. Dementia researchers are increasingly interested in the concept of social citizenship with the recognition that it can be used in many ways. This study used social citizenship to recognize that older adults living with and without dementia are entitled to freedom from stigma and discrimination and have the right to participate in life to the fullest extent possible. Social citizenship emphasizes that older adults living with or without dementia have rights, responsibilities, resources, and biographies, which link the person to their community and country of residence. Older adults living with or without dementia can enact their social citizenship in everyday lives, by participating in activities at ordinary places such as the neighborhood, grocery store, or community center.

Earlier research has focused on “the shrinking world” of older adults living with dementia as they face difficulties finding their way, getting lost and progressively abandon places over time. Such research solely focuses on the condition of dementia, however, participation in the community is a complex and dynamic process. What else could be playing a role? By using the concept of social citizenship, we adopted a strengths-based view of older adults living with and without dementia, to explore the activities and places that they maintain as well as those that they abandon over time. Our proposed strengths-based view recognizes the effects of the diagnosis of dementia on participation, as well as country of residence due to diversity in structural and contextual aspects (e.g. urban design, access to public transport and health care services), and other social aspects (e.g. cultural norms and values).

To promote a strengths-based view, we used the Participation in ACTivities and Places OUTside Home (ACT-OUT) Questionnaire to interview 325 older adults living with and without dementia in four countries (Canada, Sweden, Switzerland, and the United Kingdom). The ACT-OUT Questionnaire explores patterns of participation in 24 types of places outside of the home, these include: consumer, administrative and self-care places (e.g. a supermarket or pharmacy), places for medical care (e.g. a hospital or dentist), social, cultural and spiritual places (e.g. a friend or family member’s place or a social club), and places for recreational and physical activities (e.g. a park or neighborhood).

Our statistical analyses showed that both diagnosis of dementia and country of residence had significant effects on levels of participation in activities and places outside of the home. Participation tended to decrease over time for both the older adults living with and without dementia, except for adult day programs where participation increased from the past to the present for older adults living with dementia only.

Overall, the older adults living with dementia participated in significantly fewer activities and places, than those without dementia. Specifically, there were 10 types of places where participation was significantly lower among older adults living with dementia than those without dementia:

1.    mall, supermarket
2.    small store
3.    pharmacy
4.    bank, post office
5.    doctor’s office
6.    dentist’s office
7.    senior center, social club
8.    entertainment, cultural place
9.    forest, mountain, lake, sea
10. sports facility.

The take-home message in our study is that a strengths-based view of older adults should consider not only the diagnosis of dementia, but also other structural and contextual aspects, such as country of residence, which may have significant effects on participation in the community. We identified 10 types of places where older adults living with dementia had significantly lower participation than those without dementia. These 10 types of places in the community provide a starting point to focus development of targeted supports and programs, policies and built environments to support older adults to enact their social citizenship.

Article Details
Social Citizenship Through Out-of-Home Participation Among Older Adults With and Without Dementia
Sophie N. Gaber, Liv Thalén, Camilla W. Malinowsky, Isabel Margot-Cattin, Kishore Seetharaman, Habib Chaudhury, Malcolm Cutchin, Sarah Wallcook, Anders Kottorp, Anna Brorsson, Samantha Biglieri, and Louise Nygård
First Published: June 30, 2022
DOI: 10.1177/07334648221112425
Journal of Applied Gerontology

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