scholarly journals Motivation for people living with dementia to engage in research advisory boards

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 151-151
Author(s):  
Dianne Gove ◽  
Ana Diaz ◽  
Martina Roes
Keyword(s):  
Working Group ◽  
Public Involvement ◽  
Research Projects ◽  
Strategic Research ◽  
Advisory Boards ◽  
Research Activities ◽  
People With Dementia ◽  
European Working ◽  
Dementia Research ◽  
Set Up

Abstract The importance of Public Involvement (PI) is increasingly being recognized in the field of dementia research. In 2012, Alzheimer Europe set up the European Working Group of People with Dementia (EWGPWD) which provides advice and input for all activities of the organization including several large European-funded research projects. The German Center for Neurodegenerative Diseases (DZNE) created a research advisory patient board in 2020 with the intention of supporting the board in strategic research decisions. Both groups are composed of people with dementia and act independently. With the aim of finding out whether PI in research is mutually rewarding and beneficial, members of both groups were asked about their motivation to be involved in PI research activities and the value this had for them. This was collected either through narrative interviews or during meetings. People with dementia described several reasons for being involved in PI activities in dementia research.

Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia

Dementia ◽  
2019 ◽  
Vol 19 (1) ◽  
pp. 10-17 ◽  
Author(s):  
Chris Roberts ◽  
Helen Rochford-Brennan ◽  
Jayne Goodrick ◽  
Dianne Gove ◽  
Ana Diaz-Ponce ◽  
...  
Keyword(s):  
Working Group ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
European Working Group ◽  
People With Dementia ◽  
European Working

scholarly journals Home care in dementia: The views of informal carers from a co-designed consultation

Dementia ◽  
2021 ◽  
pp. 147130122199050
Author(s):  
Elizabeth L Dalgarno ◽  
Vincent Gillan ◽  
Amy Roberts ◽  
Jean Tottie ◽  
David Britt ◽  
...  
Keyword(s):  
Home Care ◽  
Working Conditions ◽  
Public Involvement ◽  
Framework Analysis ◽  
Electronic Survey ◽  
The United Kingdom ◽  
People With Dementia ◽  
Dementia Research ◽  
Informal Carers ◽  
A Current

Background In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.

scholarly journals Travel associated legionnaires’disease in Europe: 1997 and 1998

1999 ◽  
Vol 4 (11) ◽  
pp. 120-124 ◽  
Author(s):  
E Slaymaker ◽  
C Joseph ◽  
C L R Bartlett
Keyword(s):  
Working Group ◽  
European Working Group ◽  
European Working ◽  
Returning Travellers ◽  
Legionnaires Disease ◽  
Set Up ◽  
Surveillance Scheme

The European Surveillance Scheme for Travel Associated Legionnaires’ Disease was set up by the European Working Group on Legionella Infections (EWGLI) in 1987 to identify cases of legionella infection in returning travellers and to detect outbreaks and cl

scholarly journals EWGLI: a European surveillance scheme for travel associated legionnaire’s disease

1996 ◽  
Vol 1 (5) ◽  
pp. 37-39 ◽  
Author(s):  
E. J. Hutchinson ◽  
C Joseph ◽  
C L R Bartlett
Keyword(s):  
Working Group ◽  
European Working Group ◽  
European Working ◽  
Legionnaires Disease ◽  
Legionnaire's Disease ◽  
Set Up ◽  
Surveillance Scheme ◽  
Legionnaire’S Disease

The European Working Group for Legionella Infections (EWGLI) was set up in 1986 and introduced the European Surveillance Scheme for Travel Associated Legionnaires’ Disease in 1987. The microbiologists working in reference laborat-ories and the epidemiolog

scholarly journals Impact of involving people with dementia and their care partners in research: a qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e039321
Author(s):  
Jahanara Miah ◽  
Suzanne Parsons ◽  
Karina Lovell ◽  
Bella Starling ◽  
Iracema Leroi ◽  
...  
Keyword(s):  
Public Involvement ◽  
Qualitative Interviews ◽  
Research Programme ◽  
Patient And Public Involvement ◽  
Substantial Impact ◽  
People With Dementia ◽  
Care Partners ◽  
Dementia Research ◽  
Research User ◽  
The Impact

ObjectivesWe aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme.DesignWe used monitoring forms to record the impact of the research programme’s PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI.SettingWe evaluated Research User Groups (RUGs—older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites.ParticipantsWe purposively sampled RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent; (b) researchers who involved RUGs in their work.ResultsImpact on the research: changes to the study conduct were made as a result of the feedback from RUGs. These included prioritisation of clinical recommendations, the wording of study information and recruitment materials, the content and layout of the user interface for a computerised memory test, interpretation of intervention results and advice on dissemination avenues. Impact on RUG members: they reported that involvement had given them a sense of purpose and satisfaction. Their perception of health research changed from being an exclusive activity to one, which lay people, could have meaningful involvement. Impact on researchers: PPI was a new way of working and interacting with PPI members had given them insight into the impact of their work on people living with dementia.ConclusionsPPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.

scholarly journals Conducting Research in Persons With Dementia During the COVID-19 Pandemic: Challenges and Strategies

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 310-310
Author(s):  
Ying-Ling Jao ◽  
Diane Berish ◽  
Ann Kolanowski
Keyword(s):  
Older Adults ◽  
Nursing Homes ◽  
Assisted Living ◽  
Ongoing Research ◽  
Health Crisis ◽  
Emergency Situations ◽  
Research Activities ◽  
People With Dementia ◽  
Dementia Research ◽  
Challenges And Strategies

Abstract The COVID-19 pandemic has caused a health crisis for vulnerable older adults, physically and psychologically. Despite the urgent demand for clinical research for people with dementia, research activities are restricted due to the pandemic. This symposium will share the experiences of researchers conducting studies with older persons with dementia during the COVID-19 pandemic. The presenters share their strategies to overcome challenges at different stages of the study process during the pandemic. The research projects include work conducted in acute care, assisted living, nursing homes, and the community. The presentations include perspectives from different geographic areas and across countries in North America. The first presenter reports the challenges in continuing an ongoing research project, and shares strategies to engage stakeholders and plan a new protocol for recruitment and in-person data collection with residents with dementia in nursing homes. The second presenter reports on the barriers and facilitators of conducting an ongoing clinical trial with older adults with dementia across hospital and community settings and discusses strategies to meet project goals which include modifications to the protocol and analytic plan. The third presenter describes adaptations made to a study intervention designed to promote quality resident-staff interactions in assisted living and alterations to stakeholder engagement. The fourth presenter describes challenges and strategies to engage older adults with dementia via technology. The discussant will synthesize the findings across studies and highlight policy and research implications for the COVID-19 pandemic as well as other emergency situations.

scholarly journals 52 Involvement of People with Dementia and Caregivers in Irish Dementia Research: Experiences, Challenges and Opportunities

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Laura O Philbin ◽  
Kevin Quaid
Keyword(s):  
Capacity Building ◽  
Public Involvement ◽  
Lessons Learned ◽  
Team Members ◽  
People With Dementia ◽  
Development Capacity ◽  
Challenges And Opportunities ◽  
Dementia Research ◽  
The Right ◽  
The Impact

Abstract Background People with dementia and caregivers of people with dementia have the right to inclusion and involvement in research that pertains to them. They can bring unique insights that add significant value to research. Person/Patient Public Involvement (PPI) occurs when the public/patients work in partnership with researchers in setting priorities, planning and managing research studies, as well as in disseminating findings and putting results into practice. In line with Alzheimer Europe’s position, a dementia charity is working hard to support and build capacity for PPI in Irish dementia research. Methods The Dementia Research Advisory Team was established in April 2019 and is supported by the charity. It is a group of Experts by Experience (5 caregivers and 5 people living with dementia) who influence, advise and work with researchers across Ireland in a PPI capacity. Team members collectively developed terms of reference detailing their expectations of researchers, the charity, and their role in all PPI activities. Team members will focus on becoming active stakeholders in Irish dementia research, and the charity will support them to build their capacity to be involved through capacity-building workshops and continuous evaluation. Results This joint presentation will discuss the development, capacity building, and experiences of the Dementia Research Advisory Team. A person with dementia, will discuss the progress of the team and report on members’ experiences of being involved in Irish dementia research. They will also discuss the impact of involvement on team members, and on the research they have been involved in. Practical ‘lessons learned’ on what did and did not work well will be presented, in addition to how the Dementia Research Advisory Team has navigated challenges and opportunities for involvement of people living with dementia and caregivers in research. Conclusion Members of the Dementia Research Advisory Team represent key stakeholders in Irish dementia research.

Legionellose, ein Tourismusproblem?

Praxis ◽  
2002 ◽  
Vol 91 (31) ◽  
pp. 1241-1245
Author(s):  
Kistler ◽  
Fleisch ◽  
Reinhart ◽  
Wieland
Keyword(s):  
Working Group ◽  
European Working Group ◽  
European Working

La légionellose, un problème de tourisme? La légionellose est une maladie assez rare, mais elle suit souvent un cours prolongé et compliqué, même chez des patients immunocompétents. Le diagnostic est important pour des raisons thérapeutiques et épidémiologiques. De 1998 à 2001 on a observé à l'hôpital cantonal de Coire six cas de légionellose, dont quatre étaient associés aux voyages et un autre concernait un employé d'un hôtel local. Par suite de l'augmentation de la mobilité internationale les recherches épidémiologiques sur la localisation de la source infectieuse et les procédés hygiéniques deviennent plus difficiles. Une organisation européenne, le «European Working Group for Legionella Infections» (EWGLI/www.ewgli.org) a étudié ce problème. La question de la forme sous laquelle le public doit être informé des sources de légionelles fait l'object d'une discussion.

scholarly journals Reflective insights from developing a palliative care children and young people’s advisory group

2021 ◽  
pp. 026921632097603
Author(s):  
Anna Roach ◽  
Debbie Braybrook ◽  
Steve Marshall
Keyword(s):  
Palliative Care ◽  
Young People ◽  
Health Research ◽  
School Health ◽  
Public Involvement ◽  
After School ◽  
Advisory Group ◽  
Research Projects ◽  
Children And Young People ◽  
Care Research

Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.

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