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Feeding and dementia: a systematic literature review
- Authors:
- WATSON Roger, GREEN Sue M.
- Journal article citation:
- Journal of Advanced Nursing, 54(1), 2006, pp.86-93.
- Publisher:
- Blackwells Publishing
This review of 13 interventions from the USA, UK, Sweden and Belgium updates an earlier one published by the first author in 1993, which found little evidence on ways of alleviating feeding problems in people with dementia. Since then, more studies have been published but most are of relatively poor quality. Most examined the use of music, but there were no standardised interventions or outcomes across the studies and none reported the use of power analysis to decide on sample size. There were also problems in some studies with confounding variables. Further, more rigorous, research is needed although there are some promising lines of inquiry.
The lifegrid method of collection retrospective information from people at older ages
- Authors:
- BERNEY Lee, BLANE David
- Journal article citation:
- Research Policy and Planning, 21(2), 2003, pp.13-22.
- Publisher:
- Social Services Research Group
Details the development of the lifegrid research method which has been adapted for use with older people. This research method has been shown to enhance long-term recall, is sensitive to the circumstances of individual subjects and modifiable to meet the research needs of different studies. The article shows how the method was informed by findings from a variety of academic disciplines. Illustrates use of the lifegrid method step by step and describes its application in several studies. Ends with suggested guidelines for using the lifegrid method when researching people with dementia.
Methodological issues for population-based research into dementia in developing countries
- Author:
- -
- Journal article citation:
- International Journal of Geriatric Psychiatry, 15(1), January 2000, pp.21-30.
- Publisher:
- Wiley
The 10/66 Dementia Research Group has been formed to promote good-quality, internationally comparable research into dementia in developing countries through active research collaboration. This article reviews existing research into dementia prevalence in developing regions of the world and briefly discusses the scope for the future of harmonization of research methodologies.
Worldwide hunt for clues
- Author:
- INEICHEN Bernard
- Journal article citation:
- Journal of Dementia Care, 5(1), January 1997, p.28.
- Publisher:
- Hawker
The prevalence of dementia varies between different countries. The author reports on findings of very low rates in part of Africa, which if confirmed could hold vital clues for research.
A processural consent methodology with people diagnosed with dementia
- Authors:
- HUGHES Tessa, ROMERO Maria Castro
- Journal article citation:
- Quality in Ageing and Older Adults, 16(4), 2015, pp.222-234.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to develop an approach within the guidance of the Mental Capacity Act (2005) to meaningfully include people diagnosed with dementia (PDwD) in research endeavours. Design/methodology/approach: As part of a broader study of self-authored narratives of care experiences, PDwD were involved in the development and implementation of a process method of consent, in which consent conversations were contextual, responsive and ongoing, and were audited with the use of field diaries. Findings: Working within people’s relational contexts (i.e. care staff and family), eight participants with a range of dementia diagnoses and care needs made and verbally communicated research-related decisions. A desire to participate was consistently conveyed across research encounters, regardless of the extent of memory problems. Participants also demonstrated keen awareness of the links between memory problems, rights and inclusion, alongside a sense of personal identity and the capacities to clearly communicate this. Research limitations/implications: A process model of consent encouraged formal reflection upon ethical and pragmatic complexities, and is relevant to persons diagnosed with dementia making both care- and research-related decisions. Further work is needed to include people with a broader range of communication support needs. Originality/value: This research demonstrates substantial possibilities for eliciting and responding to the views of people with dementia diagnoses (previously excluded from research). Results open opportunities for genuine long-term research and care partnerships with PDwD for practice, service and policy development. (Publisher abstract)
A guide to research with care homes
- Authors:
- LUFF Rebekah, et al
- Journal article citation:
- Quality in Ageing and Older Adults, 16(4), 2015, pp.186-194.
- Publisher:
- Emerald
Purpose: A growing older population with complex care needs, including dementia, are living in care homes. It is important to support researchers in conducting ethical and appropriate work in this complex research environment. The purpose of this paper is to discuss key issues in care homes research including examples of best practice. The intention is to inform researchers across disciplines, leading to more sensitive and meaningful care home research practice. Design/methodology/approach: Experienced care homes researchers were invited to provide methodological insights and details not already reported in their publications. These have been analysed, creating key themes and linked to project publications. Findings: The need for reflexivity was a key finding. In particular, researchers need to: appreciate that the work is complex; see participants as potential research partners; and consider how cognitive and physical frailty of residents, staffing pressures and the unique environments of care homes might impact upon their research. Other challenges include recruitment and consenting people who lack mental capacity. Research limitations/implications: As the care homes research landscape continues to develop and grow, there still remains limited reflection and discussion of methodological issues with a need for a “safe space” for researchers to discuss challenges. Originality/value: This review is an updated methodological guide for care homes researchers, also highlighting current gaps in the mechanisms for continuing to share best research practice. (Publisher abstract)
Culture, consent, costs and care homes: enabling older people with dementia to participate in research
- Authors:
- GOODMAN Claire, et al
- Journal article citation:
- Aging and Mental Health, 15(4), May 2011, pp.475-481.
- Publisher:
- Taylor and Francis
This paper examines factors that support and inhibit recruitment of research subjects living in care homes. It describes the methods used to recruit people with dementia to a study that tracked events and care that older people with dementia experienced over two years in six care homes. Recruitment involved meetings with staff, residents and relatives. Data were collected on the frequency of meetings, issues raised by staff, consultees and people with dementia as well as the overall time taken to complete recruitment. One hundred and thirty three older people with dementia were recruited in five months. The recruitment process was supported or hindered by the number of individuals and organisations that needed to be consulted, the care home culture, staff's understanding of how people with dementia can be involved in research, and how they interpreted their role as mediators, protectors and gatekeepers. The paper concludes that there is a need to develop infrastructures of support that enable people with dementia to participate in research studies.
Invited commentary on Bigby and Frawley's reflections on the challenges of doing inclusive research as part of the “Making Life Good in the Community” study
- Author:
- ALM Norman
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 35(2), June 2010, pp.62-63.
- Publisher:
- Taylor and Francis
This paper discusses the paper by Bigby and Frawley in this journal issue on the involvement of a person with intellectual disability as a co-researcher in a large multimethod study. This commentary applauds the project for taking a leap into unknown territory, and then to be so honest in recognising that the intended aims were not met. It points out that the list of requirements normally needed for researchers may not be appropriate for someone with learning difficulties. An approach that might work in involving someone with learning difficulties as a research associate is to design a niche in the project which suits their specific capabilities. This paper goes on to describe some of their own research group’s attempts to involve people with a disability in research into developing a range of assistive technology systems intended to benefit them. In particular it describes the involvement of older users and older users with dementia in iterative design methods to continually comment on and test a series of hopefully improving prototypes.
Making observations: the potential of observation methods for gerontology
- Editors:
- CLARK Andrew, (ed.)
- Publisher:
- Centre for Policy on Ageing
- Publication year:
- 2007
- Pagination:
- 79p.
- Place of publication:
- London
In describing how observational methods have been used in their research projects the authors draw out the pros and cons of employing observation to collect data. The studies cover structured observation to conduct a comparative study of two residential care homes; using video to research communication and interaction amongst older people with dementia - practical, ethical and epistemological issues; theory and practice of observational research in the outdoor setting; and comparing data derived through observation alone and arising out of observation accompanied by discourse, in studies located at cemeteries.
Who cares?: information and support for the carers of people with dementia
- Author:
- GREAT BRITAIN. Department of Health
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2007
- Pagination:
- 96p.
- Place of publication:
- London
- Edition:
- Rev. ed.
This booklet for carers gives information about dementia, caring for someone with dementia and the help available to carers. This edition has been developed with the valuable assistance of Help the Aged, Age Concern (England), the Alzheimer's Society, The Princess Royal Trust for Carers, Dementia Voice and the South London and Maudsley NHS Trust.