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Key components of post-diagnostic support for people with dementia and their carers: a qualitative study
- Authors:
- BAMFORD Claire, et al
- Journal article citation:
- PLoS ONE, 16(12), 2021, p.e0260506. Online only
- Publisher:
- Plos Publications
- Place of publication:
- San Francisco, CA
Background: There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support. Methods: the researchers adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and the mixed stakeholder panel. Results: Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time. Conclusions: this study offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of the components identified here, to other sectors, countries and care systems. (Edited publisher abstract)
Equipping staff with the skills to maximise recovery of people with dementia after an injurious fall
- Authors:
- BAMFORD Claire, et al
- Journal article citation:
- Aging and Mental Health, 23(11), 2019, pp.1524-1532.
- Publisher:
- Taylor and Francis
Objectives: People with dementia are more likely to fall and less likely to recover well after a fall than cognitively intact older people. Little is known about how best to deliver services to this patient group. This paper explores the importance of compensating for cognitive impairment when working with people with dementia. Methods: Qualitative methods – interviews, focus groups and observation – were used to explore the views and experiences of people with dementia, family carers and professionals providing services to people with dementia following an injurious fall. A thematic, iterative analysis was undertaken in which emerging themes were identified from each individual dataset, prior to an integrative analysis. Results: A key theme across all datasets was the need to deliver services in ways that compensate for cognitive impairment, such as negotiating meaningful activities that can be embedded into the routines of people with dementia. Professionals varied in their ability to adapt their practice to meet the needs of people with dementia. Negative attitudes towards dementia, a lack of knowledge and understanding of dementia limited the ability of some professionals to work in person-centred ways. Conclusion: Improving outcomes for people with dementia following a fall requires the principles of person-centred care to be enacted by professionals with a generic role, as well as specialist staff. This requires additional training and support by specialist staff to address the wide variability in current practice. (Publisher abstract)
Person- and carer-centred respite care for people with dementia: developing methods of evaluating the effectiveness of different methods: report for the National Institute for Health Research Service Delivery and Organisation programme
- Authors:
- BAMFORD Claire, et al
- Publisher:
- National Institute for Health Research
- Publication year:
- 2009
- Pagination:
- 303p., bibliog.
- Place of publication:
- Southampton
Aiming to develop practical tools for evaluating person-centredness which could be used across a range of models of respite care and short breaks for people with dementia and their carers, the objectives of this project were to identify the range of models of respite care and short breaks and describe how these are implemented in practice, to develop an understanding of person-centred care and how it operates in different models of respite care and short breaks from the perspective of people with dementia, carers and service providers, and to develop and test practical tools for evaluating person-centred care. The study used literature reviews, telephone surveys, focus groups and interviews and comparative case studies. The report describes the development and preliminary testing tools to evaluate respite care and short breaks focusing on person-centred care, looking at models of respite care and short breaks, developing a framework of components of person-centred care, factors that facilitated or hindered the delivery of person-centred care, the process of reviewing existing measures and mapping them to the framework of components, development of tools relevant to people with dementia, carers and staff, and testing and tool refinement with 6 services providing respite care and short breaks. It discusses the main findings, further work required and implications for further research and policy.
Respite care for people with dementia: the range of models for getting a break
- Authors:
- ARKSEY Hilary, BAMFORD Claire
- Journal article citation:
- Journal of Dementia Care, 15(3), May 2007, pp.37-39.
- Publisher:
- Hawker
The authors report on the first stage of a two-year national study of respite care and short breaks for people with dementia and their carers, in which they identified the range of service models available in the UK. Models identified included: day care, host family day care, social events, interest and activity groups, home based support (including sitting services), adult placement schemes, specialist respite facilities, respite beds, short breaks and holidays.
Disclosing a diagnosis of dementia: a systematic review
- Authors:
- BAMFORD Claire, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 19(2), February 2004, pp.151-169.
- Publisher:
- Wiley
The issue of diagnostic disclosure in dementia has been debated extensively in professional journals, but empirical data concerning disclosure in dementia has not previously been systematically reviewed. Five electronic databases were searched up to September 2003 (Medline, Embase, Cinahl, Sociological Abstracts, Web of Science). Additional references were identified through hand searches of selected journals and bibliographies of relevant articles and books. The title and abstract of each identified paper were reviewed independently by two reviewers against pre-determined inclusion criteria: original data about disclosure were presented and the paper was in English. Any disagreements were resolved by discussion until consensus was reached. Data were extracted independently by two reviewers using a structured abstraction form. Data quality were not formally assessed although each study was critically reviewed in terms of methodology, sampling criteria, response rates and appropriateness of analysis. Fifty-nine papers met the inclusion criteria for detailed review. Many of the studies had methodological shortcomings. The studies reported wide variability in all areas of beliefs and attitudes to diagnostic disclosure and reported practice. Studies of the impact of disclosure indicate both negative and positive consequences of diagnostic disclosure for people with dementia and their carers. Existing evidence regarding diagnostic disclosure in dementia is both inconsistent and limited with the perspectives of people with dementia being largely neglected. This state of knowledge seems at variance with current guidance about disclosure.
The uphill struggle: services for deaf and hard of hearing people-issues of equality participation and access
- Authors:
- HARRIS Jennifer, BAMFORD Claire
- Journal article citation:
- Disability and Society, 16(7), December 2001, pp.969-979.
- Publisher:
- Taylor and Francis
This article focuses upon the ways in which deaf and hard of hearing people are excluded from participation in society. Focuses on ordinary expectations that members of society have in terms of participating as citizens and performing socially sanctioned, adult roles. The roles of 'citizens', 'employee', 'parent' and 'patient' are discussed. The data illustrate the organisation and delivery of services can undermine, rather than facilitate, the performance of these roles. Argues that despite policy emphasis on social inclusion, current services and legislation fail to provide a firm basis for the full participation of deaf and hard of hearing people in British society.
Assessing the outcomes of equipment and adaptations: issues and approaches
- Authors:
- HEATON Janet, BAMFORD Claire
- Journal article citation:
- British Journal of Occupational Therapy, 64(7), July 2001, pp.346-356.
- Publisher:
- Sage
Current government policy emphasises professional accountability, Best Value, evidence-based practice and outcomes for users and carers. In this context, being able to demonstrate the effectiveness of routine practice is increasingly important. This article considers the key issues in collecting information about the outcomes of equipment and adaptations. Three approaches to evaluating the outcomes of equipment and adaptations are distinguished: functional status measures; health status or quality of life measures; and indirect approaches. Examples of each approach are provided and their strengths and limitations discussed. Calls for further research on the perspectives of carers and the impact of service delivery to ensure that all the outcomes of equipment and adaptations are fully evaluated.
Defining the outcomes of community care: the perspectives of older people with dementia and their carers
- Authors:
- BAMFORD Claire, BRUCE Errollyn
- Journal article citation:
- Ageing and Society, 20(5), September 2000, pp.543-570.
- Publisher:
- Cambridge University Press
This paper reports a small consultation with people with dementia and their carers to identify the desired outcomes of community care. While there was considerable overlap in the outcomes identified by people with dementia and their carers, a number of limitations of relying solely on carers as proxy respondents were identified. A key outcome, which has been relatively neglected in previous work, was maximising a sense of autonomy. A range of outcomes related to the ways in which services are delivered were also identified. Future evaluative studies should encompass both quality-of-life outcomes and service-process outcomes (the impacts of the ways in which services are delivered) in addition to other outcome measures relevant to the aims and objectives of the service.
Outcomes of social care for disabled people and carers
- Authors:
- BAMFORD Claire, et al
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2000
- Pagination:
- 44p.,bibliog.
- Place of publication:
- York
This is number six in the series 'Outcomes in community care practice' from the Social Policy Research Unit at the University of York. It covers desired outcomes for people with physical and sensory impairments, and for their carers. It discusses routine collection and uses of outcomes information, and concludes by looking towards an outcomes focus in social care.
Outcomes into practice: focusing practice and information on the outcomes people value; a resource pack for managers and trainers
- Authors:
- NICHOLAS Elinor, QURESHI Hazel, BAMFORD Claire
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2003
- Pagination:
- I binder; 2 booklets.
- Place of publication:
- York
This resource aims to assist development of outcome-focused practice and information in social care for adults, with research based guidance exploring: the relevance of outcomes in social care policy and practice; the outcomes valued by users and carers – some frameworks; what’s involved in outcome-focused care management; outcomes information, its collection, interpretation and use; and the practicalities of introducing new ways of working.