The social process of everyday decision-making by people with dementia and their spouses.

Lead Research Organisation: University of Bradford
Department Name: Sch of Health Studies

Abstract

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.

Publications

10 25 50
 
Title Decide for yourself! 
Description A film about making decisions when you have memory problems or dementia. 
Type Of Art Film/Video/Animation 
Year Produced 2012 
Impact The film has had over 900 views on YouTube. A link to the film was also provided on the Canadian website of the voluntary organization 'I Can I Will'. Within the UK, the film was also broadcast at dementia cafes, support groups, via professional networks, via the Open University website. Additionally, it was disseminated in dvd format to older people's groups, community/voluntary organisations primary care, services, hospital services, memory assessment services, social care services and BME organisations. 
URL http://www.open.ac.uk/people/gb7939
 
Description Founding member of international research network on citizenship and dementia 
Organisation International Research Network on Citizenship and Dementia
Country Sweden 
Sector Charity/Non Profit 
PI Contribution Contributed to establishing the international research network on citizenship and dementia.
Collaborator Contribution Ceder Dementia Research Centre (University of Linkoping, Sweden) funded the inaugural meeting of this international network.
Impact International research network developed with plans for further activities (e.g. public, service user and carer engagement).
Start Year 2014
 
Description 2013: Written evidence to the House of Lords Mental Capacity Act 2005 Select Committee 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact My submission was included in the report by the House of Lords Mental Capacity Act 2005 Select Committee.

Raised recognition of the importance of considering decision-making capacity in domestic contexts.
Year(s) Of Engagement Activity 2013
URL http://www.parliament.uk/documents/Mental-Capacity-Act-2005/mental-capacity-act-2005-vol1.pdf
 
Description A meeting of the minds 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Participants in your research and patient groups
Results and Impact Webinar on supporting decision-making by people with dementia. The online participants were an international audience of people with dementia, carers, professionals and Alzheimer's Association staff from Canada, the United States and Mexico.

Participants viewed the film on decision-making on YouTube which had been produced as a study output (and a resource for people with dementia and carers).
Year(s) Of Engagement Activity 2013
URL http://www.alz.co.uk/icaniwill/library/supporting-decision-making-by-people-with-dementia
 
Description Bradford briefing : overview of study findings 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Briefing to academic and non-academic staff at University of Bradford, 10th May, 2012

Section not completed
Year(s) Of Engagement Activity 2012
 
Description Carers information and support event 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Speaker at information and support event for carers of people with dementia, organised by Lancashire Carers Forum.

Study resources (film and handbook) disseminated
Year(s) Of Engagement Activity 2013
 
Description Conference paper entitled: 'The creative agency of people with dementia'. 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact My paper sparked comments/questions, particularly re the relevance of my findings to other social (client) groups e.g. people with a learning disability or autism.

The paper contributed to the development of an interdisciplinary body of work and the setting up of an international symposium on relational agency, led by the Centre for Applied Social Research, University of Bradford.
Year(s) Of Engagement Activity 2013
URL http://www.britsoc.co.uk/media/54364/MedSoc13_Abstract_Summary.pdf
 
Description Conference paper: Dialoguing with self and others: multi-voiced dialogue in people with dementia 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Talk prompted questions and discussion re the relational self and maintaining social relationships when living with dementia.

Led to plans for organising subsequent conference on dementia with a focus on gender.
Year(s) Of Engagement Activity 2014
URL http://www.isv.liu.se/ceder/ett-liv-med-demenssjukdom-relationer-konferens/program/1.594043/konferen...
 
Description Conference presentation: Communicating via emotion: The emotional reflexivity of people with advanced dementia. Paper presented at 2016 Nordic Congress of Gerontology, University of Tampere, Finland. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Conference paper presented at international conference of gerontology.
Year(s) Of Engagement Activity 2016
URL http://23nkg.fi/
 
Description Decide for yourself! 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact The project film was screened at an arts and mental health dialogues seminar, followed by a presentation by the PI on decision-making in dementia.

Members of the public and carers asked for copies of the decision-making resources (and web address for the film) developed from the study.
Year(s) Of Engagement Activity 2012
URL http://loveartsleeds.co.uk/wp-content/uploads/2012/03/2241-LOVE-ARTS-PROGRAMME-2012.pdf
 
Description Decide for yourself! 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Information/dialogue event on supporting decision-making in dementia for carers and people with dementia An information event aimed at providing practical guidance on decision-making to family carers and people with dementia, disseminating project resources and promoting dialogue on how to support decision-making capacity in dementia.

An information event aimed at providing practical guidance on decision-making to family carers and people with dementia, disseminating project resources and promoting dialogue on how to support decision-making capacity in dementia.
Year(s) Of Engagement Activity 2013
 
Description Decision-making when people may lack capacity: Who decides and how do they decide? Paper presented at 2016 Conference of Nursing Homes Ireland Association, Dublin, Ireland. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Paper presented at 2016 Conference of Nursing Homes Ireland Association, Ireland and engagement in panel-audience debate.
Year(s) Of Engagement Activity 2016
URL http://www.nhi.ie/index.php?p=annual_conf_2016
 
Description Everyday decision-making by couples living with dementia : why gender matters 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Paper presented at public seminar organised by Centre for Applied Social Research, University of Bradford, entitled: 'Rethinking agency: from institutional power to the politics of everyday decisions'.

Led to the development of a strand of interdisciplinary work on agency.
Year(s) Of Engagement Activity 2011
 
Description Extended community radio interview for older audience 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Radio interview for 'Senior Moments' programme on community radio The Senior Moments programme is particularly aimed at older people.

The Senior Moments programme is particularly aimed at older people.
Year(s) Of Engagement Activity 2013
 
Description Gendered agency by people with dementia in everyday life 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Paper presented at research seminar organised by Center for Dementia Research, Linkoping University, Sweden.

Led to invite to attend 2014 conference hosted by Linkoping University and to join new international research network on dementia.
Year(s) Of Engagement Activity 2012
 
Description Having their say : everyday decision-making by people with dementia 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Public talk given at Otley Science Cafe, West Yorkshire, March 2013. Public talk and dialogue at Science Cafe.

Public talk and dialogue at Science Cafe.
Year(s) Of Engagement Activity 2013
 
Description Information event for carers in Preston 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Information event held for carers of people with dementia to show project film and handbook and discuss strategies for supporting and managng everyday decision-making.

Carers requested copies of the decision-making handbook developed from the study.
Year(s) Of Engagement Activity 2012
 
Description Information session and film screening at 'Still Alive and Kicking' community event for over 50s 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Showed project film, provided information on supporting decision-making by people with dementia and interviewed for community radio show. Community event - guests included older people, carers, health and social care staff, community and voluntary sector workers and police officers.

Community event - guests included older people, carers, health and social care staff, community and voluntary sector workers and police officers.
Year(s) Of Engagement Activity 2013
 
Description Information/dialogue event with dementia support group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Meeting with Forget-me-not dementia support group in Kirby-in-Ashfield, Nottingham, to discuss decision-making support strategies and the decision-making handbook

Section not completed
Year(s) Of Engagement Activity 2013
 
Description Information/dialogue event with people with dementia and carers in Harrogate 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Event organised to show project film and handbook and discuss experiences of, and strategies for, decision-making.

People with dementia and carers asked for copies of the decision-making handbook developed from the study.
Year(s) Of Engagement Activity 2012
 
Description Information/dialogue event with people with dementia and carers in Shipley 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Event organised in conjunction with Carers' Resource, Shipley to show project film and handbook and discuss experiences of everyday decision-making.

People with dementia and carers asked for copies of the decision-making handbook developed from the study.
Year(s) Of Engagement Activity 2012
 
Description Information/dialogue event with people with dementia and carers in Skipton 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact Event organised to show project film and handbook and discuss experiences of everyday decision-making.

People with dementia and carers asked for copies of the decision-making handbook developed from the study.
Year(s) Of Engagement Activity 2012
 
Description Information/dialogue event with people with dementia and carers in Wakefield 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Event organised to show project film and handbook and share findings re decision-making strategies.

Carers and people with dementia asked for copies of the decision-making handbook developed from the study.
Year(s) Of Engagement Activity 2012
 
Description Making decisions when you have dementia : what difference does a partner's support make? 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation and faciltation of discussion at workshop organised by Making Research Count network, University of York (attended by local authority and other social care staff).

Practitioners discussed how they could apply strategies for supporting decision-making by people with dementia.
Year(s) Of Engagement Activity 2011
URL http://www.york.ac.uk/media/spsw/documents/mrc/Annual%20Report%202011-12.pdf
 
Description Paper presented at 2015 Law Conference on Human Rights and Dementia Care 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presented paper entitled 'Human rights for people with dementia: Moving from care to equality' at 2015 Conference on Human Rights and Dementia Care, Department of Law and Criminology, Sheffield Hallam University.
Year(s) Of Engagement Activity 2006
URL http://www.shu.ac.uk/faculties/ds/dlc/events/HumanRightsandDementiaCareConference.html
 
Description Paper: Who's doing the dishes now? Gender (in)equality in couples living with dementia. 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Prompted discussion re the importance of an intersectionality perspective (gender, disability and age etc).

Led to further data analysis and publications on gender, disability and and agency.
Year(s) Of Engagement Activity 2014
URL http://bothsidesnowblog.com/2014/04/26/gender-equality-and-intimacy-uncomfortable-bedfellows/
 
Description Radio interview for Bradford Community Radio 'Afternoon Stretch' Show 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Interview on community radio Extended interview for afternoon radio show aimed at general, mixed-age audience. The interview aimed to further raise awareness about supporting people to live positively with dementia.

Extended interview for afternoon radio show aimed at general, mixed-age audience. The interview aimed to further raise awareness about supporting people to live positively with dementia.
Year(s) Of Engagement Activity 2013
URL http://www.podcast.canstream.co.uk/bcb/index.php?cat=Afternoon%20Stretch
 
Description Research briefing to Alzheimer's Society staff 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Briefing on research findings to Alzheimer's Society, Greater Manchester Disseminate research findings and project decision-making resources to Alzheimer's Society support staff

Disseminate research findings and project decision-making resources to Alzheimer's Society support staff
Year(s) Of Engagement Activity 2013
 
Description Supporting decision-making by people living with dementia 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact This end-of-study conference was organised by the PI and aimed at health and social care staff who work with people with dementia and their families, and also researchers and postgraduates working in this area.



The conference stimulated debate about strategies for supporting decision-making and assessing capacity in dementia.
Year(s) Of Engagement Activity 2012
URL http://www.applied-social-research.brad.ac.uk/media/appliedsocialresearch/Supporting-decision-making...
 
Description Symposium paper: From talk to body talk: the creative agency of people with dementia. 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Talk sparked comments re value of empirical research into dementia to theorising on agency.

Contributed to debate about value of empirical research (especially re disability) to theory on agency.
Year(s) Of Engagement Activity 2013
URL http://www.bradford.ac.uk/research/rkt-centres/applied-social-research/news/events/international-sym...
 
Description What's the story with making decisions when you have dementia? 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Seminar presentation to social work and social policy staff and students, University of Bradford, June 2011.

Prompted discussion about the role of social workers in supporting decision-making and assessing capacity.
Year(s) Of Engagement Activity 2011
 
Description Workshop on supporting decision-making by people with dementia and carers 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Workshop on supporting decision-making by people with dementia and carers, aimed at health and social care professionals and Alzheimers Society staff. Workshop on supporting decision-making by people with dementia and carers, attended by health and social care professionals and Alzheimers Society staff.

Workshop on supporting decision-making by people with dementia and carers, attended by health and social care professionals and Alzheimers Society staff.
Year(s) Of Engagement Activity 2013
 
Description Workshop with practioners re supporting decision-making by people with dementia: Decisions, decisionsFacilitating decision-making by people with dementia. Workshop for social work and social care staff at Warwickshire County Council, July 2016. 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Workshop re supporting decision-making in dementia, aimed at social workers and social care staff in large metropolitan Council.
Year(s) Of Engagement Activity 2016