Dementia: the International Journal of Social Research and Practice, 20(8), 2021, pp.2957-2981.
Publisher:
Sage
This realist review of the literature provided a contemporary understanding of neighbourhoods and dementia and described how people living with dementia and their neighbourhood interacted via ongoing place-making and remaking processes. Drawing on 44 articles, neighbourhoods were revealed to have fluid and dynamic qualities where people with dementia used their strength and resources to connect...
(Edited publisher abstract)
This realist review of the literature provided a contemporary understanding of neighbourhoods and dementia and described how people living with dementia and their neighbourhood interacted via ongoing place-making and remaking processes. Drawing on 44 articles, neighbourhoods were revealed to have fluid and dynamic qualities where people with dementia used their strength and resources to connect to significant people and places. The review also indicated that the person with dementia–neighbourhood relationship was underpinned by four themes: ‘home’, ‘social interactions’, ‘activities’ and ‘transportation’. Further research is encouraged to use innovative, participatory methods to explore the neighbourhood–dementia nexus in depth whilst paying close attention to social inclusion and diversity.
(Edited publisher abstract)
Subject terms:
qualitative research, literature reviews, neighbourhoods, dementia, social networks, place-based approach, user views;
To support people with dementia to live at home, a key national and international policy driver is to create dementia-friendly communities which draws attention to the importance of a local neighbourhood and living well with dementia. However, there is a lack of evidence about how people with dementia define and interact with their neighbourhood. This longitudinal narrative research aimed...
(Edited publisher abstract)
To support people with dementia to live at home, a key national and international policy driver is to create dementia-friendly communities which draws attention to the importance of a local neighbourhood and living well with dementia. However, there is a lack of evidence about how people with dementia define and interact with their neighbourhood. This longitudinal narrative research aimed to uncover the meaning, construction and place of neighbourhood in the lives of people with dementia and their care partners through a participatory approach. Five couples, where one partner had an early diagnosis of dementia and capacity to consent, participated in the (up to) one-year mixed qualitative method study. During this time-frame, 65 home visits were conducted, resulting in over 57 hours of interview data alongside the development of other artefacts, such as neighbourhood maps, photographs, diaries and field notes. Narrative analysis was applied within and across the data-sets. This led to the emergence of three themes to describe a connected neighbourhood. First, ‘connecting to people’ is about the couples’ connections with family members, friends and neighbours through a sense of belonging, group identification and responsibilities. Second, ‘connecting to places’ shares the couples’ emotional and biographical attachment to places. Third, ‘connecting to resources’ refers to the couples actively seeking support to live independently and to retain neighbourhood connections.
(Edited publisher abstract)
Although life-story work is an established form of support for people with dementia and their carers, culturally Deaf people who are sign language users have been excluded from this practice. There is no evidence base for the cultural coherence of this approach with Deaf people who sign, nor any prior investigation of the linguistic and cultural adaptation that might be required for life-story...
(Publisher abstract)
Although life-story work is an established form of support for people with dementia and their carers, culturally Deaf people who are sign language users have been excluded from this practice. There is no evidence base for the cultural coherence of this approach with Deaf people who sign, nor any prior investigation of the linguistic and cultural adaptation that might be required for life-story work to be effective for sign language users with dementia. Given the lack of empirical work, this conceptual thematic literature review approaches the topic by first investigating the significance of storytelling practices amongst Deaf communities across the lifespan before using the findings to draw out key implications for the development of life-story work with culturally Deaf people who experience dementia and their formal and informal carers (whether Deaf or hearing). The reviewed work is presented in three themes: (a) the cultural positioning of self and others, (b) learning to be Deaf and (c) resistance narratives and narratives of resistance. The article concludes that life-story work has the potential to build on lifelong storying practices by Deaf people, the functions of which have included the (re)forming of cultural identity, the combating of ontological insecurity, knowledge transmission, the resistance of false identity attribution, and the celebration of language and culture.
(Publisher abstract)
Subject terms:
deafness, dementia, life story work, literature reviews, carers, cultural identity;
Semantic dementia causes progressive communication difficulties that significantly impact on the person and their family. There is a paucity of research examining conversation skills in this condition and associated interventions to support interaction, such as life-story work. This study used a multiple case study design to: (a) explore the everyday conversation experiences of five individuals...
(Publisher abstract)
Semantic dementia causes progressive communication difficulties that significantly impact on the person and their family. There is a paucity of research examining conversation skills in this condition and associated interventions to support interaction, such as life-story work. This study used a multiple case study design to: (a) explore the everyday conversation experiences of five individuals with semantic dementia and their spouses; and (b) examine how intervention using interaction-focused life-story work could support communication needs. A total of 74 home visits were conducted over a longitudinal period. An innovative combination of conversation analysis of video and audio data alongside biographical interviewing was used. Information derived from these strands was utilised to design an individually tailored life-story intervention. Cross-case analysis examined the contribution of life-story work to interaction and other aspects of care. Results showed that a range of challenges and skills were present within conversation. Life-story work was delivered in all cases using a variety of formats and the work could be conceptualised under various points of connection: interactional, emotional, new, practical and future. Detailed assessment was important to define aims for intervention and appropriate format(s) for life-story work for the individual concerned. Outcomes for communication in this study were not solely about supporting the telling of facts about the person's life but represented a broader focus to facilitate embodied and emotional connections. This study demonstrates that creativity within life-story work is important to foster social interaction, beyond information exchange, using both verbal and non-verbal behaviours. In addition, video data show promise for exploring in-the-moment outcomes for research and practice, particularly to capture the non-verbal dimensions of this work.
(Publisher abstract)
Subject terms:
dementia, partners, communication, life story work, intervention;
Dementia: the International Journal of Social Research and Practice, 17(8), 2018, pp.1001-1010.
Publisher:
Sage
This article concerns Public and Patient Involvement practice with Deaf people who are sign language users. It draws on the experience of public and patient involvement in a project concerning Deaf people’s lived experience of dementia and focusses on: (i) creating the conditions of trust in circumstances of unrecorded knowledge; (ii) being a community insider as a necessary but not sufficient
(Publisher abstract)
This article concerns Public and Patient Involvement practice with Deaf people who are sign language users. It draws on the experience of public and patient involvement in a project concerning Deaf people’s lived experience of dementia and focusses on: (i) creating the conditions of trust in circumstances of unrecorded knowledge; (ii) being a community insider as a necessary but not sufficient condition without public and patient involvement and (iii) community consultation as influencing positive public and patient involvement practice. It sets out a series of recommendations for authentic public and patient involvement practice with Deaf sign language users linked to each of these themes before considering more generally barriers to Deaf people’s involvement in public and patient involvement in health and social care research.
(Publisher abstract)
Subject terms:
service users, user participation, research methods, deafness, public opinion, non-verbal communication, dementia, consultation, participatory research;
SWARBRICK Caroline Margaret, SAMPSON Elizabeth, KEADY John
Journal article citation:
Quality in Ageing and Older Adults, 18(3), 2017, pp.201-211.
Publisher:
Emerald
Purpose: The purpose of this paper is to explore some of the ethical and practical dilemmas faced by an experienced researcher in undertaking research with a person with dementia (whom we have called Amy). Amy died shortly after a period of observation had ended and the family subsequently consented to the data being shared.
Design/methodology/approach: This individual case study presentation...
(Publisher abstract)
Purpose: The purpose of this paper is to explore some of the ethical and practical dilemmas faced by an experienced researcher in undertaking research with a person with dementia (whom we have called Amy). Amy died shortly after a period of observation had ended and the family subsequently consented to the data being shared.
Design/methodology/approach: This individual case study presentation was nested within a larger study conducted in England and Scotland between 2013 and 2014. The overall aim of the main study was to investigate how healthcare professionals and informal carers recognised, assessed and managed pain in patients living with dementia in a range of acute settings.
Findings: The presented case study of Amy raises three critical reflection points: (i) Researcher providing care, i.e. the place and positioning of compassion in research observation; (ii) What do the stories mean? i.e. the reframing of Amy's words, gestures and behaviours as (end of) life review, potentially highlights unresolved personal conflicts and reflections on loss; and (iii) Communication is embodied, i.e. the need to move beyond the recording of words to represent lived experience and into more multi-sensory methods of data capture.
Originality/value: Researcher guidance and training about end of life observations in dementia is presently absent in the literature and this case study stimulates debate in a much overlooked area, including the role of ethics committees.
(Publisher abstract)
Subject terms:
dementia, pain, death, research, case studies, research ethics, user participation;
This study considers appearance and the work invested in maintaining it by people with dementia and those who care for and support them. Specifically the study explores the experience of hairdressing for people with dementia; examines the workplace experience of care-based hairdressers and the perspectives of care workers; documents the constituent elements of hairdressing encounters...
(Edited publisher abstract)
This study considers appearance and the work invested in maintaining it by people with dementia and those who care for and support them. Specifically the study explores the experience of hairdressing for people with dementia; examines the workplace experience of care-based hairdressers and the perspectives of care workers; documents the constituent elements of hairdressing encounters; and considers patterns of provision, access and affordability of hairdressing services in different types of dementia care setting. The research involved: interviews to explore how people with dementia managed appearance throughout their lives; in-depth interviews with 10 hairdressers, 9 family carers, 6 key informants and 15 care workers/nursing assistants; and observations of 23 people living with dementia, 16 women and 7 men, during their regular visits to the hairdresser. The findings highlight the importance of understanding the role that appearance plays in identity and self-expression of people with dementia. It also finds that there is a need to raise the profile of care-based hairdressing and its contribution to living well with dementia. It sets out a series of suggestions for policy and practice based on the findings of the study.
(Edited publisher abstract)
Health and Social Care in the Community, 24(1), 2016, pp.39-47.
Publisher:
Wiley
This study concerns older Deaf sign language users in the UK. Its aim was to explore how to enable effective information access and promote awareness and understanding of dementia from a culturally Deaf perspective. A purposive sample of 26 Deaf people without dementia participated in one of three focus groups facilitated directly in British Sign Language (BSL) without an intermediate interpreter...
(Publisher abstract)
This study concerns older Deaf sign language users in the UK. Its aim was to explore how to enable effective information access and promote awareness and understanding of dementia from a culturally Deaf perspective. A purposive sample of 26 Deaf people without dementia participated in one of three focus groups facilitated directly in British Sign Language (BSL) without an intermediate interpreter. The sample was differentiated by age, role in the Deaf community, and diversity of educational attainment and professional experience. A phenomenological approach underpinned the thematic analysis of data. The findings demonstrate: (i) translation into (BSL) is a necessary but not sufficient condition to support understanding. Attention to culturally preferred means of engagement with information is vital; (ii) the content of information is best presented utilising structures and formats which cohere with Deaf people's visual cognitive strengths; and (iii) the importance of cultural values and cultural practices in raising awareness and building understanding of dementia. These include collective rather than individual responsibility for knowledge transfer and the pan-national nature of knowledge transfer among Deaf people(s). The discussion demonstrates how these specific features of effective information access and awareness building have universal implications relevant to public engagement and the promotion of general knowledge consistent with the National Dementia Strategy (England).
(Publisher abstract)
Subject terms:
dementia, deafness, access to information, health education;
Objectives: This study concerns culturally Deaf people in the United Kingdom who use British Sign Language (BSL). Its objective was to explore how Deaf people's knowledge about dementia and access to services is mediated by their minoritised cultural–linguistic status.Methods: Twenty-six members of the Deaf community participated in one of three Deaf-led focus groups in BSL corresponding...
(Publisher abstract)
Objectives: This study concerns culturally Deaf people in the United Kingdom who use British Sign Language (BSL). Its objective was to explore how Deaf people's knowledge about dementia and access to services is mediated by their minoritised cultural–linguistic status.Methods: Twenty-six members of the Deaf community participated in one of three Deaf-led focus groups in BSL corresponding with the sample of: Deaf people over the age of 60 without dementia; Deaf people aged 18–60 working professional roles unconnected with dementia services; ordinary members of the Deaf community aged 18–60. Data were subjected to a thematic content analysis.Results: Participants’ concerns about their poor levels of knowledge and understanding of dementia were augmented by their awareness that without sustained social contact in BSL opportunities for earlier recognition of dementia would be lost. Although primary care services were identified as the first port of call for dementia-related concerns, there was widespread mistrust of their effectiveness because of failures in communication and cultural competence. Confirmed diagnosis of dementia was not viewed as a gateway to services and support because Deaf organisations, dementia-related organisations and mainstream adult services were perceived to be ill-equipped to respond to the needs of Deaf people with dementia.Conclusions: Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.
(Publisher abstract)
Subject terms:
dementia, hearing impairment, access to services, communication, access to information, non-verbal communication;
...psychoses; neurosis; dementia; alcohol and dual diagnosis; and later life liaison services. Case studies are used to illustrate current practice. Part 3 looks at the way forward and the final chapter distils key messages from the book and sets a number of key challenges.
Taking an interdisciplinary approach, this publication looks at different practice contexts in the United Kingdom and the increasingly important role played by social care in addressing the mental health needs of older people. Part 1 covers caring, practice and community contexts and social care approaches. Part 2, focuses on the clinical topics of: depression and anxiety; mood disorders; psychoses; neurosis; dementia; alcohol and dual diagnosis; and later life liaison services. Case studies are used to illustrate current practice. Part 3 looks at the way forward and the final chapter distils key messages from the book and sets a number of key challenges.
Subject terms:
holistic care, intervention, mental health problems, older people, social work, social care provision, anxiety, dementia, depression, dual diagnosis;