Exploring psychosocial interventions for people with dementia that enhance personhood and relate to legacy- an integrative review

Johnston, Bridget; Narayanasamy, Melanie

doi:10.1186/s12877-016-0250-1

Cited by 39 publications

(22 citation statements)

References 84 publications

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“…Our study supports the demand for a socio-relational approach by demonstrating that–from a first-person perspective–dementia can be seen as a disorder that is related in particular to questions about selfhood, social relations and social roles. Our study also underlines the importance of appropriate social interventions for people with dementia, and confirm the idea of Johnston et al that such interventions should seek to enhance personhood, facilitate meaningful engagement and offer the potential for the person to leave a legacy [58]. Rather than what dementia is (e.g.…”

Section: Discussionsupporting

confidence: 84%

‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective

Wijngaarden

Alma

2019

PLoS ONE

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Introduction This Dutch study is a qualitative interview study. It aims to contribute to our understanding of the day-to-day experiences by providing an idiographic description of what it means existentially to be in the world as a person affected by a form of dementia, taking into account the contextual nature of these embodied experiences. Methods We used a combination of narrative accounts of people from dementia. We first collected 322 recorded messages of 16 diarists who joined the Dutch Dementia Diaries project. This data was supplemented with 37 interview accounts. Our data analysis was inspired by Van Manen’s existential phenomenological approach. Results The findings show that living with dementia–from a first-person perspective–can be understood as a severely unsettling experience: the people concerned enter a very uncertain, unpredictable and ambiguous period of life. They have to face all kinds of losses that considerably change and disrupt their relationships with 1) their own body, 2) with others and 3) with the surrounding world. This experience is explicated in the following themes: 1a) scrutinizing your disrupted body; 1b) trying to control your bodily loss-of-control; 2a) feeling scrutinized by the suspicious gaze of others; 2b) drifting away from significant others; 2c) having difficulties sharing the struggle; 2d) longing to be taken seriously; 2e) engaging in a world of peers; and 3a) sensing disorientation in an alien place; 3b) feeling closed in within a shrinking space; 3c) trying to control a dreaded future; 3d) trying to control a dreaded future by means of euthanasia. Discussion Our study demonstrates how the people with dementia are affected by ‘the eyes of others’. They longed for a safe and accepting environment, but quite often felt scrutinized by inquisitive and disapproving looks. The outcomes also reveal a connection between dominant social imaginaries and people’s self-understanding of dementia. Much of the suffering stems from living under the shadow of negative imaginaries. Furthermore, our study supports the demand for a socio-relational approach by demonstrating that–from a first-person perspective–dementia can be seen a disorder that is related in particular to questions about selfhood, social relations and social roles. For the people involved, instead of what dementia is , the focus is on what Alzheimer’s disease means and does and how it affects daily life.

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Section: Discussionsupporting

confidence: 84%

‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective

Wijngaarden

Alma

2019

PLoS ONE

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“…A life‐story book is a person's own personal account of their life‐story and the process is as important as the product at the end (Gibson, ). Life‐story work results in a tangible outcome facilitating people to leave a legacy to their families that they can pass onto the younger generation (Johnston & Narayanasamy, ). Our review suggests that life‐story work has the potential to enhance person‐centred care in long‐term aged care facilities and improve the care environment for the person (Österholm & Hydén, ).…”

Section: Resultsmentioning

confidence: 99%

Life‐story work in long‐term care facilities for older people: An integrative review

Doran¹,

Noonan

Doody

2018

Journal of Clinical Nursing

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Aim To systematically review the literature regarding the experience of older people, families and staff using life‐story work in residential care facilities for older people. Background Life‐story work has been promoted as an approach to enhance care provided and involves collecting memories and moments that are important to the person assisting them to regain their sense of self. Design An integrative review utilising the PRISMA reporting guidelines where seven databases, Scopus, EMBASE, CINAHL, MEDLINE, PsychInfo, PsychARTICLES, and Cochrane, were searched within the timeframe; 1 January 2006 to 14 March 2016. Data were reviewed using Whittemore and Knalf's (Journal of Advanced Nursing, 2005, 52:546) methodological approach for integrative reviews. Analysis was conducted utilising Braun and Clarke's (Qualitative Research in Psychology, 2006, 3:77) six phases to identify, analyse and record themes within the data. Results Thirteen articles were reviewed, and the review found that life‐story work has been introduced using a range of different approaches, with no common approach. Thematic analysis identified two: maintaining identity and building and maintaining relationships. Conclusion The review extends the current evidence on the experience of using life‐story work in long‐term aged care facilities for older people. Life‐story work has the potential to enhance person‐centred care in long‐term care. However, improving the process of implementation of life‐story work will require education, time and resources and a commitment from service providers and managers. Relevance to clinical practice Staff who undertake life‐story work with residents need to be equipped with the skills to recognise and manage the challenges and issues that may potentially arise. Further research into the successful implementation of life‐story work and how it can be resourced is required.

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“…Over the last decades, a number of psychosocial interventions have been developed, within a person-centered care framework (PCC), to help elderly with neurocognitive impairments in long-term facilities to preserve their sense of identity and selfhood [51][52][53]. A series of reviews and metanalysis have examined the role of reminiscence therapy, life review, or other forms of intervention based on a chronological review and evaluation of life experiences, with data generally underlining the efficacy of these intervention, [54] while some indicate less consistent results [55].…”

Section: Psychosocial Intervention In a Dyadic Approach: The Role Of mentioning

confidence: 99%

Improving Dignity of Care in Community-Dwelling Elderly Patients with Cognitive Decline and Their Caregivers. The Role of Dignity Therapy

Ounalli

Mamo

Testoni

et al. 2020

Behavioral Sciences

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Demographic changes have placed age-related mental health disorders at the forefront of public health challenges over the next three decades worldwide. Within the context of cognitive impairment and neurocognitive disorders among elderly people, the fragmentation of the self is associated with existential suffering, loss of meaning and dignity for the patient, as well as with a significant burden for the caregiver. Psychosocial interventions are part of a person-centered approach to cognitive impairment (including early stage dementia and dementia). Dignity therapy (DT) is a therapeutic intervention that has been shown to be effective in reducing existential distress, mood, and anxiety symptoms and improving dignity in persons with cancer and other terminal conditions in palliative care settings. The aims of this paper were: (i) To briefly summarize key issues and challenges related to care in gerontology considering specifically frail elderly/elderly with cognitive decline and their caregivers; and (ii) to provide a narrative review of the recent knowledge and evidence on DT in the elderly population with cognitive impairment. We searched the electronic data base (CINAHL, SCOPUS, PSycInfo, and PubMed studies) for studies regarding the application of DT in the elderly. Additionally, given the caregiver’s role as a custodian of diachronic unity of the cared-for and the need to help caregivers to cope with their own existential distress and anticipatory grief, we also propose a DT-dyadic approach addressing the needs of the family as a whole.

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Exploring psychosocial interventions for people with dementia that enhance personhood and relate to legacy- an integrative review

Cited by 39 publications

References 84 publications

‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective

‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective

Life‐story work in long‐term care facilities for older people: An integrative review

Improving Dignity of Care in Community-Dwelling Elderly Patients with Cognitive Decline and Their Caregivers. The Role of Dignity Therapy

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