Capturing the significance of place in the lived experience of dementia

Abstract

In this article, the author reports on a study exploring the impact of an urban setting on the lived experience of dementia for older couples where one member of each couple was diagnosed with the illness over age 64, the other was the primary care partner, and both were residing together in the greater New York metropolitan area at the time of the research. Certain features of city living, such as accessible medical care, public transportation, and social services, are known to provide substantial instrumental and affective support during challenging times However, how dementia care partnerships transform other aspects of urban environments to their own individual and unpredictable advantage is less documented. By describing how older dementia-affected couples make use of informal features of place to meet complex needs, such as affirming couplehood and sustaining autonomy, the study uncovers links between place and quality of life with dementia. There are implications for dementia care and research. These include deepening understanding of the role of place in dementia, establishing knowledge of place as a component of cultural competence, and implementing policies that support place-based care. Moreover, findings propose pathways to greater inclusivity in knowledge building by promoting creative approaches to data collecting supported by naturalistic inquiry. By adopting a strength perspective and a person-inenvironment approach to service provision, social work practice, and research stand to make a difference in the lives of persons affected by dementia and those who care for them.

The lived neighborhood: understanding how people with dementia engage with their local environment

“…Such concerns within dementia studies have led to growing interest in a “person-in-environment” approach, driven by a more fluid and dynamic understanding of the person–place relationship (e.g. Blackman, 2006; McGovern, 2012; Van Steenwinkel et al ., 2014). For instance, in relation to the experience of outdoor and public spaces for people with dementia, Brorsson and colleagues (2011) draw on the work of the philosopher John Dewey to develop a transactional perspective, arguing that: The environment is not just a physical place; it also embraces social, cultural and political aspects and includes spatial and temporal dimensions.…”

When Actions Speak Louder Than Words

“…Study findings have been expanded on in previous publications (i.e., McGovern, 2010 , 2011 , 2016 ). However, they are not unrelated to the focus of this methods article, which describes the process of using additional data collecting methods more fully.…”

“…Through the lens of an exploratory qualitative study with persons affected by dementia and their partners in care, the article illustrates how complementing the interview with observed and tangible data stands to enhance knowledge building, increase inclusivity in research, and better address diversity of experience and capacity. The implications of study findings for dementia care practices are expanded on in other articles (i.e., McGovern, 2010 , 2011 , 2016 ). They are referred to briefly here.…”

Place and space in social work

“…For Jack, social workers lack place-awareness in their assessments and interventions and rely on service-oriented approaches when more space-oriented approaches could enhance children’s sense of autonomy, control and participation in their environments. Work by McGovern (2017) similarly captures the significance of place attachment in the lived experience of older people with dementia and their carers. She argues that social workers need to extend their assessments to include an understanding of how couples in dementia care partnerships navigate their environment on a day–to-day basis and thus sustain quality of life in an experiential milieu beyond the simple home care model.…”