A multiple perspective view of personhood in dementia

Abstract

Personhood has been a key influence on the development of person-centred care models in dementia. However, there is ambiguity around the concept and interpretation of personhood, and what it means in practical terms for the delivery of care to people with dementia. This study examines the conceptualisation of personhood within the formal care system for people with dementia in Ireland. A multiple perspective study design examines the experiences of personhood in dementia from the perspectives of people with dementia, family carers and a range of formal carers. Semi-structured interviews with participants were conducted in both community and long-term care settings. Interpretative phenomenological analysis is used to examine the data. A total of 31 participants were interviewed: eight people with dementia, eight family carers and 15 formal carers. There is general consensus on the core elements of personhood among all participants: interests and preferences; lifecourse experiences; social interaction; family; and place. However, there is ambiguity among family carers and formal carers in the interpretation of changes to personhood as the disease progresses. Interpersonal and structural barriers to supporting personhood are identified by all participants. The findings provide guidance on the traits of personhood-enhancing care, including effective communication skills, and the potential of health and social care reform to support the core elements of personhood among people with dementia.

Towards personalized dementia care through meaningful activities supported by technology: A multisite qualitative study with care professionals

“…Additionally, Harmer and Orrell [18] reported that staff lacked sufficient skills in identifying and delivering activities that residents with dementia could engage in. More recent evidence has identified numerous barriers of implementing person-centred care in practice, which include issues such as time constraints, staff turnover, negative attitudes, poor relationships, lack of consistency in care personnel, a lack of understanding of dementia, and a lack of autonomy and empowerment towards residents [20][21][22][23]. With the large prevalence of people living with dementia and importance of supporting personhoodespecially in later stages of the disease it is necessary to investigate ways in which care staff can be supported in providing person-centred care through meaningful interactions.…”

Change in the psychological self in people living with dementia: A scoping review

“…Findings demonstrate that participants did not report changes to their current self or feelings of discontinuity to their past self, expressing that they feel they are the same person as before the onset of dementia (Borley et al, 2016;Caddell & Clare, 2011;Caradec & Chamahian, 2017;Hennelly & O'Shea, 2021;MacRae, 2010;Borley & Hardy, 2017). The few longitudinal qualitative studies identified (Johannessen et al, 2018;Steeman et al, 2013) did not report substantial alterations to participants' self; minor changes were described, mostly everyday difficulties and cognitive challenges, but people with dementia do not feel that they have changed in a major way.…”

“…Better understanding of alterations in selfhood, ensuring that people's experiences are not undermined by perceptions of total loss, is key to address psychological symptoms of people living with dementia as well as to inform new pathways for dementia care interventions. Person-centered psychological care can only be achieved by recognising the centrality of selfhood in people's wellbeing and quality of life (Hennelly et al, 2021).…”

“…Having a more exploratory perspective, these studies do not focus on a specific aspect of the self, but rather they explore the self as a unitary construct, facilitating the expression of high-order subjective experiences and interpretations of selfhood (Scott, 2021). In order to explore interview responses, this review indicates that most studies used some form of interpretive phenomenological analysis (Borley et al, 2016;Caddell & Clare, 2011;Hennelly & O'Shea, 2021;Larsson et al 2018;Caradec & Chamahian, 2017;Scott, 2021), with some using grounded theory (Johannessen et al, 2018), or interactionist perspective analysis (MacRae, 2010). Some studies have employed a longitudinal design (Johannessen et al, 2018;Steeman et al, 2013), while others explored perceived change by seeing the self within a narrative framework (Karlsson et al, 2014;Angus & Bowen-Osborne, 2014).…”

Exploring Interrelations Between Person-Centered Care and Quality of Life Following a Transition Into Long-Term Residential Care: A Meta-Ethnography

“…In order to provide continuity during a move, residents should be provided with choice, and the need for care should be balanced with supporting independence. This is integral not only to achieving PCC in LTRC, but also in maintaining resident QoL ( Barnes et al., 2013 ; Baxter et al., 2019 ; Edvardsson et al., 2010 ; Hennelly & O’Shea, 2021 ).…”