Agency and Moral Relationship in Dementia

consultant, Bruce Jennings director senior

doi:10.1002/9781444322781.ch10

Cited by 17 publications

(16 citation statements)

References 11 publications

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“…It appeared that recognition of the continuity of the previous identity and agency of those with dementia could be best understood when a person was engaging in meaningful activities with the support of a carer who endeavoured to connect their relative’s past and present unique characteristics. This process, whereby carers sustained continuity of the current self of their relative, through bringing back the past self when the person was no longer able to do that alone, has been described by Jennings ( 2009 ) as “memorial personhood”.…”

Section: Key Findingsmentioning

confidence: 99%

“…Despite memory difficulties, people continue to have the desire to communicate and connect with others. Jaworska ( 1999 ) and Jennings ( 2009 ) contended that those with dementia continue to participate in “meaning-sending and meaning-receiving relationships” (p. 430) with those around them through verbal and non-verbal means, despite severe decline in cognitive functioning (semantic agency). Hence, both agency and personhood can be nurtured with a supportive person-centred caregiving environment and moral relationships in daily life.…”

Section: Introductionmentioning

confidence: 99%

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

Chung

Ellis‐Hill

Coleman

2017

International Journal of Qualitative Studies on Health and Well

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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.

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Section: Key Findingsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Chung

Ellis‐Hill

Coleman

2017

International Journal of Qualitative Studies on Health and Well

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“…Although she underscores that this can be done in an appropriate way but also in a poor and clumsy way, she demonstrates that the attempt is crucial: we must provide care, not only by nursing, washing, looking after and being there, but also by holding on to each individual's identity. A relevant term here is semantic subject or “semantic agency” (Jennings , 11, 171), a term that elucidates the value of providing space for a person's identity, helping to reinforce and develop it, finding a way of talking, of recounting narratives and providing them with a presence. If we return to our formula for freedom, the interpretative work of these scholars might suggest that freedom as dependence is characterized by social interaction, but a specific form of interaction: holding in freedom .…”

Section: Conclusion: the Need To Retrace A Different Form Of Freedommentioning

confidence: 99%

Freedom and Disability Rights: Dependence, Independence, and Interdependence

Bostad

Hanisch

2016

Metaphilosophy

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The increasing focus on disability rights---as found, for instance, in the U.N. Convention on the Rights of Persons with Disabilities (CRPD)---challenges philosophical imaginaries. This article broadens the philosophical imaginary of freedom by exploring the relation of dependence, independence, and interdependence in the lives of people with disabilities. It argues (1) that traditional concepts of freedom are rather insensitive to difference within humanity, and (2) that the lives of people with severe disabilities challenge philosophers to argue and conceptualize freedom not only as independence and interdependence but also as dependence. After tracing this need through a Hegelian understanding, via Julia Kristevas work on disability, and finally the CRPD, it concludes that a unified solution might not be possible. Hence, it argues that disability issues necessitate philosophical modesty.

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“…In his essay on caring for people with dementia, included in this collection, Bruce Jennings (2009) describes how family members can engage with their loved ones in order to preserve what he calls “memorial personhood.” Jennings writes: “To be a memorial person is to be a self in the imagination and memory of others; which, on this view, is just what it is to be a self. It is to be a self whose identity and life must be honored and acknowledged by those who can [do so].…”

Section: Personhood As Requiring Enabling Conditionsmentioning

confidence: 99%

“…On the basis of his conception of memorial personhood, Jennings argues that both caregivers and social institutions (including public policy for long‐term care) have an obligation to provide the environment, resources, services, and human presence necessary to sustain and conserve semantic agency and memorial personhood during the course of life with dementia (Jennings 2009). Similarly, Lindemann notes that families are not the only agents responsible for holding their loved ones in personhood (Lindemann 2009).…”

Section: Blocking Developmental Pathways To Moral Personhoodmentioning

confidence: 99%