Co-research with older people with dementia: Experience and reflections
Journal of Mental HealthPublished 10 May 2012
Denise Tanner
Citations122
SJR quartileQ1
SJR score1.21
SNIP1.24
Generate an AI Snapshot to get a quick, structured summary of this paper.
Study Snapshot
ObjectiveStudy objective
MethodsResearch methodology
PopulationPopulation studied
Sample sizeSample sizes
OutcomesStudy outcomes here
ResultsStudy results comes here
LimitationsResearch study limitations comes here
A concise AI-generated summary of the paper will appear here once you click Generate AI Snapshot.
TL;DR
It is found that it is possible to involve older people with dementia in a meaningful way in research processes and that both co-researchers and participants can benefit significantly from their participation.
Abstract
The project has wider implications for the development of participatory research with people with dementia and for interventions based on peer support.
Keywords
MedicineHealth Professions
Ageing and SocietyThe living dead? The construction of people with Alzheimer's disease as zombies
344 Citations2010Susan M. Behuniak
It is argued here that the AD stigma is of a specific sort – it is dehumanisation based on disgust and terror, and strong negative emotional responses to AD are also buttressed by the social construction of people with AD as zombies.
Journal of Aging StudiesFrom personhood to citizenship: Broadening the lens for dementia practice and research
303 Citations2007Ruth Bartlett, Deborah O’Connor
This article reviews the relevance of personhood and citizenship for dementia practice and research, and argues for a broader lens that incorporates citizenship and sociological ideas about agency and structure.
Aging & Mental HealthIncluding older people with dementia in research: Challenges and strategies
257 Citations2003Gill Hubbard, Murna Downs +1 more
It is concluded that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.
DementiaFrom Ritual to Relationship
252 Citations2002Jan Dewing
It is suggested that dementia-friendly methods must be more rigorously tested and reported and that a revisionist person-centred inclusionary approach to consent, which values the interests of all parties involved, including the person with dementia, is a way forward in person- Centred research.
Ageing and SocietyA different story: exploring patterns of communication in residential dementia care
203 Citations2008Richard Ward, Antony A. Vass +3 more
The project found that people with dementia are both capable of communication, and invest much effort in seeking to engage those around them, but are excluded from the monitoring, planning and provision of care in ways that are discriminatory.
Journal of Aging StudiesIn their voices: Identity preservation and experiences of Alzheimer's disease
196 Citations2004Renée L. Beard
Examination of the impact of being diagnosed with early AD on identity construction suggests that understanding how to identify memory deficits, the context of diagnosis, and the techniques employed for managing illness are crucial to subjective experiences.
DementiaManaging Sense of Self
168 Citations2002Alison Pearce, Linda Clare +1 more
Qualitative methodology uses qualitative methodology to examine the appraisals and coping processes of 20 men diagnosed with early-stage Alzheimer’s disease and ways in which services can assist men in the process of managing their sense of self are explored.
Social Science & MedicineMaking sense of dementia in the social world: A qualitative study
157 Citations2006Shani A. Langdon, Andrew L. Eagle +1 more
12 men and women aged 66-87 with early stage dementia were interviewed to elicit their views on others' reactions to them since receiving the diagnosis and what they thought others understood by the terms 'dementia' and 'Alzheimer's Disease'.
The British Journal of Social WorkA Code of Ethics for Social Work and Social Care Research
144 Citations2002Ian Butler
This Critical Commentary is the final product of the Economic and Social Research Council sponsored seminar series, Theorising Social Work Research to appear in the BJSW and has no particular status and is reproduced in the Journal as a prompt to further discussion.
Nursing Science QuarterlyGiving Voice to Persons Living With Dementia: The Researcher’s Opportunities and Challenges
131 Citations2003Theresa Moore, Jane Hollett
Methodological challenges which may be encountered by qualitative researchers are outlined and specific strategies for addressing these challenges are described including: modifying consent/assent procedures, adjusting sample size, facilitating communication, and making the most of the data.
Journal of Social WorkService Users’ Knowledges and the Social Construction of Social Work
124 Citations2001Peter Beresford, Suzy Croft
Journal of Psychiatric and Mental Health NursingPeople with dementia and their relatives: personal experiences of Alzheimer's and of the provision of care
117 Citations2003Neeru Aggarwal, Antony A. Vass +4 more
Findings and issues arising from the study on eliciting the views and feelings of people in all stages of dementia, as well as those of their relatives, on care services and on experiences of dementia are reported.
Communication and the Care of People with Dementia
108 Citations2001John Killick, Kate Allan
Converstaions with Jane - "My mind, mywhole sphere of life is full."
DementiaMake it Easy on Yourself!
107 Citations2004James H. McKillop, Heather Wilkinson
The reflections of a person with dementia are outlined about how it felt and what was useful in taking part in an interview, to add to the established understanding that people with dementia can be included in research.
The perspectives of people with dementia : research methods and motivations
104 Citations2002Heather Wilkinson
This chapter discusses the ethical and practical issues of involvement, and the views of people with dementia, as well as methods and motivations for including them in research.
The British Journal of Social WorkKeeping Service User Involvement in Research Honest
95 Citations2009Hugh McLaughlin
Aging & Mental HealthRemaining hopeful in early-stage dementia: A qualitative study
91 Citations2010Emma Wolverson, Christopher Clarke +1 more
Insight is offered into the existence, nature, and relevance of hope in the lives of people with early-stage dementia and these findings provide a useful framework for developing hope-fostering strategies in early interventions that aim to assist individuals with dementia to maintain their quality of life.
Qualitative Health ResearchManaging Identity While Living With Alzheimer’s Disease
89 Citations2009Hazel MacRae
Findings indicate that, given the necessary resources, persons with Alzheimer’s can live meaningful, purposeful lives and creatively manage to protect and preserve identity.
Disability & SocietyListening to Older Women with Dementia: Relationships, voices and power
88 Citations2001Gillian Proctor
Four older women with dementia were interviewed about their experiences of their services and the methodology for analysis, Brown and Gilligan's Voice Relational Method, was used, developed to listen to adolescent girls and has been used toListen to the voices of others who are disempowered in society.
Journal of Clinical NursingLost in the present but confident of the past: experiences of being in a psycho‐geriatric unit as narrated by persons with dementia
74 Citations2007David Edvardsson, Karin Nordvall
Experiences of care narrated by persons with dementia present meaningful and useful information that can provide feedback to inform care practice and points towards an understanding of being lost in the present but confident of the past.
DementiaEthical issues in social research involving people with dementia
72 Citations2007Chris Sherratt, Tony Soteriou +1 more
Issues and concerns, including accessing data to identify potential participants, assessing mental capacity, obtaining consent and the role of gatekeepers, are explored in the context of emerging governance in social care research and current and new legislation in the UK, the rest of Europe and beyond.
DementiaPerceptions of change over time in early-stage Alzheimer's disease
64 Citations2005Linda Clare, Ilona Roth +1 more
It is suggested that expression of awareness interacts with coping style, illustrating the need to consider both factors in combination in order to better understand individual expressions of awareness of change.
e-space (Manchester Metropolitan University)Partnership research: a review of approaches and challenges in conducting research in partnership with service users
64 Citations2009Jo Frankham
International Journal of Older People NursingEngaging older people with dementia in research: myth or possibility
41 Citations2008Fiona Cowdell
It is demonstrated that it is possible to actively engage older people with dementia, even those in the more advanced stages of the disease, in research and it is essential that researchers understand ethical principles and are able to apply these sensitively and flexibly.
Ageing and SocietySharing stories: a meta-ethnographic analysis of 12 autobiographies written by people with dementia between 1989 and 2007
36 Citations2009Sean Page, John Keady
Meta-ethnographic analysis of the contents of 12 books written by people with dementia and published between 1989 and 2007 inductively generated five themes that linked each story and the importance of reconstructing identity appeared a pivotal process in living with the onset and progression of dementia.
Journal of Mental HealthPeople with dementia and their family carers' satisfaction with a memory service: A qualitative evaluation generating quality indicators for dementia care
35 Citations2008R. F. Willis, Jeni Chan +3 more
Queen Margaret University Publications Repository (Queen Margaret University)Challenges and Strategies in Collaborative Working with Service User Researchers: Reflections from the Academic Researcher
26 Citations2006Emma Miller, Ailsa Cook +5 more