Supporting activity engagement by family carers at home: maintenance of agency and personhood in dementia

Abstract

An explorative paper to describe how family carers, through the caregiving journey, reaffirm and promote the agency of people with dementia. Agency is an important concept in dementia care and is crucial to the promotion of wellbeing and the delivery of person-centred care. This article is based on one of the key findings of a study that explored family carers’ experiences of engaging their relatives in daily activities in domestic settings. Following research governance and ethical approval, 30 in-depth interviews (initial and follow-up) were carried out with 15 resident-carers of people with dementia who were recruited via local community mental health teams. Then five focus groups were conducted with 21 participants accessed through carers support groups. Interviews and focus groups were transcribed, coded and analysed using a grounded theory method. Findings showed the process in which family carers encouraged and sustained a sense of autonomy and control (agency) in their relative’s daily activities. Key strategies used by carers included: being non-judgemental; facilitating a sense of worth; taking calculated risks; maintaining the continuity of their relative’s identity; enhancing a sense of connection with their relative’s role and identity using enjoyable activities; preventing inactivity and attending to the bodily source of the agency. Lack of support for carers could ultimately pose a risk to the maintenance of the agency of people with dementia. This study provides a deeper insight into the process used by home carers to support the agency of people with dementia. This is essential if practitioners are to identify and develop more realistic intervention strategies and to work in effective partnership with family carers. The implications for the creation of dementia-friendly communities are discussed.

Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence

“…Relational and recovery models Kitwood is credited with introducing the biopsychosocial model of dementia care: now widely accepted, this posits that functioning in people living with dementia is not solely related to biological illness factors, but also their psychosocial environment [13]. His theory of person-centred care [14][15][16] [16,17]. Relationship-focussed care extends personhood theory to include inter-relatedness in caring relationships: mutuality and reciprocity [18].…”

Co-creativity, well-being and agency: A case study analysis of a co-creative arts group for people with dementia

“…More recently, perspectives from positive psychology have emerged as a source of evidence for the value of well-being (Seligman, 2012) and improving well-being is an imperative that guides much public health and social policy (Office for National Statistics, 2018). Agency is also an important concept in relation to people with dementia and has been considered as ‘crucial’ to the understanding of wellbeing and person centred care (Chung et al, 2017, p.1).…”

Experiences of older people with dementia: Homecare enablement to support transitions in daily life at home

“…In this study, family carers were frustrated that they were often ignored by staff involved throughout the care planning and left to deal with the everyday management. It is crucial that, if person-centred dementia care is to be adopted fully in a home setting, practitioners work with family carers in order to help them understand unfamiliar activity patterns and thus develop relevant coping strategies (Chung et al., 2017). Otherwise, families may misunderstand the patterns, viewing them as irrational and irresponsible (Chung et al., 2008), which could be detrimental to the caregiving situations.…”