This book focuses on theoretical, policy and practice issues which are predicted to become fundamental priorities in the near future, and how dementia care works across the globe. It explores the theory underpinning dementia care, the applications of theory in dementia care research, and how this research is influencing and shaping practice. The contributors are practitioners, policy influencers...
This book focuses on theoretical, policy and practice issues which are predicted to become fundamental priorities in the near future, and how dementia care works across the globe. It explores the theory underpinning dementia care, the applications of theory in dementia care research, and how this research is influencing and shaping practice. The contributors are practitioners, policy influencers and researchers who analyse case studies from the UK, the USA, Canada, Australia, India, France and Malta with the aim of encouraging a dialogue and exchange of interdisciplinary initiatives and ideas. Their insights into how policy and national dementia strategies are developed, and the range of approaches that can be taken in practice, will provide a positive step towards ensuring that the needs of those with dementia are met, both now and in the future. This book is designed for practitioners, researchers, policy makers and students in the field of dementia care.
Subject terms:
older people, policy, social care provision, dementia, health care;
University of Stirling. Dementia Services Development Centre
Publication year:
2010
Pagination:
47p., bibliog.
Place of publication:
Stirling
This guide highlights the contribution staff can make in ensuring that the palliative and end of life care of people with dementia fits their needs and preferences. The resource begins by setting the scene, discussing the principles of palliative care and making the distinction between generalist and specialist palliative care. It tackles issues such as the discomfort people may feel when talking...
This guide highlights the contribution staff can make in ensuring that the palliative and end of life care of people with dementia fits their needs and preferences. The resource begins by setting the scene, discussing the principles of palliative care and making the distinction between generalist and specialist palliative care. It tackles issues such as the discomfort people may feel when talking about death and dying. The writers then turn to the different care contexts looking at; the issues for people with dementia and family carers at home, transition between care settings, and care in residential or nursing homes, pain control, the concept of a good death and support for staff following the death of a resident. The final section considers specific issues such as cultural diversity, spiritual care, decision making, dilemmas in care, artificial nutrition, and advance directives. The resource includes practice examples, practitioner tips, references to research literature, a summary of policy developments and web links.
Subject terms:
palliative care, decision making, dementia, end of life care, good practice;
Background: Living with dementia has been described as a process of continual change and adjustment, with people with dementia and their families adopting informal strategies to help manage everyday life. As dementia progresses, families increasingly rely on help from the wider community and formal support. Methods: This article reports on a secondary analysis of qualitative data from focus...
(Publisher abstract)
Background: Living with dementia has been described as a process of continual change and adjustment, with people with dementia and their families adopting informal strategies to help manage everyday life. As dementia progresses, families increasingly rely on help from the wider community and formal support. Methods: This article reports on a secondary analysis of qualitative data from focus groups and individual interviews with people with dementia and their carers in the North of England. In total, 65 people with dementia and 82 carers took part in the research: 26 in interviews and 121 in focus groups. Focus group and interview audio recordings were transcribed verbatim. A qualitative, inductive, thematic approach was taken for data analysis. Findings: The article applies the metaphor of scaffolding to deepen understanding of the strategies used by families. Processes of scaffolding were evident across the data where families, communities, professionals and services worked together to support everyday life for people with dementia. Within this broad theme of scaffolding were three sub-themes characterising the experiences of families living with dementia: doing things together; evolving strategies; and fragility and fear of the future. Conclusions: Families with dementia are resourceful but do need increasing support (scaffolding) to continue to live as well as possible as dementia progresses. More integrated, proactive work is required from services that recognises existing scaffolds and provides appropriate support before informal strategies become unsustainable; thus enabling people with dementia to live well for longer.
(Publisher abstract)
Subject terms:
informal care, dementia, community care, activities of daily living, carers, families, user views;
This paper draws on two data sources (Kelly's ethnographic study and a British Broadcasting Corporation television programme) to explore the practice of bodywork in the care of frail people with dementia in institutional settings. It explores the complexity of engaging in bodywork, particularly work that is distasteful to the care-worker, and shows how non-recognition of the selfhood...
(Publisher abstract)
This paper draws on two data sources (Kelly's ethnographic study and a British Broadcasting Corporation television programme) to explore the practice of bodywork in the care of frail people with dementia in institutional settings. It explores the complexity of engaging in bodywork, particularly work that is distasteful to the care-worker, and shows how non-recognition of the selfhood of the person with dementia can result in practices that are demeaning and potentially abusive to those in receipt of such work. In contrast to a person-centred approach that urges practitioners to acknowledge people with dementia as unique individuals, with unique needs, wishes, abilities and desires, this paper argues for the use of Sabat's Selfs 1–3 construct to look for commonalities of selfhood, enabling care workers to recognise aspects of themselves in their patients as they carry out care, thereby facilitating care that empathically respects their patients' dignity and potential for vulnerability. Thus, it aims to advance theory and improve practice by arguing for the necessity of putting selfhood at the forefront of bodywork in order to facilitate respectful care that dignifies rather than objectifies the person.
(Publisher abstract)
Subject terms:
older people, dementia, residential care, dignity, staff, vulnerable adults;
Journal of Care Services Management, 5(3), July 2011, pp.147-155.
Publisher:
Taylor and Francis
There are an increasing number of people with dementia living in care homes in the UK, with up to 70% of the care home population possibly having some form of dementia. It is therefore important that the building design of care homes should be enabling and maximise the person’s ability to engage with the environment. This paper reports on one part of a study to evaluate the reliability...
There are an increasing number of people with dementia living in care homes in the UK, with up to 70% of the care home population possibly having some form of dementia. It is therefore important that the building design of care homes should be enabling and maximise the person’s ability to engage with the environment. This paper reports on one part of a study to evaluate the reliability and validity of 2 audit tools, the Design Audit Tool and the Environmental Audit Tool, developed to audit how dementia-friendly internal and external environments are for people with dementia. Thirty care homes were audited using both audit tools. Following the audit, the care homes each received a home report detailing up to 5 design strengths and 5 limitations. Analysis of these 30 home reports identified variability in meeting dementia-friendly principles as specified by both tools. Areas of variability included: wayfinding; the use of colour and contrast; access to outside spaces; individualisation of personal and communal spaces; and lighting and opportunities to engage with the environment. These results provide insight into variability in care home design and identify where care homes need to focus in order to become better places for people to live.
Subject terms:
instruments, lighting, quality assurance, building design, care homes, dementia;
Aging and Mental Health, 15(5), July 2011, pp.548-556.
Publisher:
Taylor and Francis
This study investigated the views of people with dementia in care homes, and their family carers, on aspects of building design that are important to them. Two focus groups were held in Northern Ireland, and four in Scotland, with a total of 40 participants – 29 with dementia, and 11 family carers. Carers, in general, discussed the features of a building they took into account when selecting...
This study investigated the views of people with dementia in care homes, and their family carers, on aspects of building design that are important to them. Two focus groups were held in Northern Ireland, and four in Scotland, with a total of 40 participants – 29 with dementia, and 11 family carers. Carers, in general, discussed the features of a building they took into account when selecting a care home. Key themes reported by people with dementia and their family carers included how the space in the environment is used, including the presence or absence of certain design features. Outside space and way-finding aids were identified as positive features of the home, along with a general lack of concern about en-suite provision. The findings illustrated the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The authors concluded that the findings should be considered by care home teams involved in the building or redevelopment of a care homes.
Subject terms:
older people, user views, carers, building design, care homes, dementia, environment;
Dementia: the International Journal of Social Research and Practice, 15(2), 2016, pp.162-180.
Publisher:
Sage
Providing support in the form of information, advice and access to services or social events is promoted as beneficial for people newly diagnosed with dementia and their families. This paper reports on key findings from an evaluation of a post-diagnostic support pilot project in Scotland addressing local service gaps, namely information provision, emotional and practical support and maintaining...
(Edited publisher abstract)
Providing support in the form of information, advice and access to services or social events is promoted as beneficial for people newly diagnosed with dementia and their families. This paper reports on key findings from an evaluation of a post-diagnostic support pilot project in Scotland addressing local service gaps, namely information provision, emotional and practical support and maintaining community links. Twenty-seven participants (14 people newly diagnosed with dementia and 13 family carers) were interviewed at two time points: T1 shortly after joining the pilot project and T2 approximately six months later, to ascertain their views on existing services and the support offered by the pilot project. A comparative thematic analysis revealed that the project facilitated increased independence (associated with increased motivation and self-confidence) of people with dementia. The project illustrates what can be achieved if resources are targeted at providing individualised post-diagnostic support, particularly where there are service delivery gaps.
(Edited publisher abstract)
Subject terms:
independence, diagnosis, access to services, access to information, service provision, service users, user views, dementia, evaluation;
Social Policy and Society, 9(2), April 2010, pp.267-277.
Publisher:
Cambridge University Press
This paper, presenting data from field notes and video footage, reports on a study of 14 consenting older people with dementia, from three locked psycho-geriatric wards of a hospital allowing ethnographic exploration into the everyday social worlds and behaviour of the study group. The author attempted to: identify abusive practice through observation of staff interactions with their patients
This paper, presenting data from field notes and video footage, reports on a study of 14 consenting older people with dementia, from three locked psycho-geriatric wards of a hospital allowing ethnographic exploration into the everyday social worlds and behaviour of the study group. The author attempted to: identify abusive practice through observation of staff interactions with their patients; explain abusive practice in relation to staffs’ conceptualisation of the selfhood of their patients; explore the transactional and institutional drivers for abusive practice and their impact on those perpetrating and experiencing it; and explore the nature of resistance, defeat and resilience within a conceptualised selfhood. Results indicated abusive practice in the wards and showed that participants in receipt of such practice responded with self-defence and resistance, but were eventually defeated. In a development of Sabat’s (2001) Selfs 1–3 framework, the author identifies how abusive practice arose due to staffs’ inability to recognise different aspects of the patients’ self. Recommendations for practice include integrating a developed Selfs 1–3 framework into staff training and evaluating its impact on practice.
Subject terms:
hospitals, long term care, nurses, older people, prevention, training, vulnerable adults, safeguarding adults, dementia, elder abuse;
Ageing and Society, 30(1), January 2010, pp.103-124.
Publisher:
Cambridge University Press
This paper reports findings from a three-year study which integrated Kitwood's (1997) person-centred and Sabat's (2001) selfhood approaches in the design, fieldwork and analysis of a multi-method observational study that explored the social worlds of 14 people with dementia in long term care. The types of interactions that participants experienced in everyday ward life and during creative...
This paper reports findings from a three-year study which integrated Kitwood's (1997) person-centred and Sabat's (2001) selfhood approaches in the design, fieldwork and analysis of a multi-method observational study that explored the social worlds of 14 people with dementia in long term care. The types of interactions that participants experienced in everyday ward life and during creative sessions were identified by observing, video-recording and engaging with them and by Dementia Care Mapping. The participants' responses to such interactions in terms of their well- or ill-being and expressions of self were identified and documented. The findings indicate that in the wards, staff interactions were often limited and sometimes abusive and that participants experienced ill-being, whereas during creative sessions, interactions were generally facilitatory and celebratory with the participants experiencing wellbeing. By developing the selfhood approach and integrating it with the person-centred approach, the author argues that recognising and supporting selfhood (or not) during interactions can lead to qualitatively different staff behaviours, with consequences for the well- or ill-being of people with dementia. There is scope for incorporating this developed selfhood framework into staff training.
Subject terms:
long term care, older people, person-centred care, quality of life, staff-user relationships, training, arts, dementia, emotional abuse;