Project Involvement Group
Project Involvement Group
People with dementia and carers play a key role in the development of the project. They will influence the research and how we share our findings. Hear about the Project from members of the ALWAYs network in the video below.
The ALWAYS network
The ALWAYS network (Action on Living Well: Asking You) are people with dementia and carers of people with dementia who advise on different aspects of the project based on their personal experience, skills and expertise. The network, recruited through their links with Innovations in Dementia and Alzheimer’s Society, is at present around 12 people.
Membership
- All members of the ALWAYS network are people with dementia or family carers of people with dementia.
- The members are volunteers and the network is typically made up of 6 people with dementia and 6 family carers, although this number may vary.
- Membership is currently on a 12-month rolling basis and members are asked if they would like to continue each year.
- Face-to-face meetings are held annually, but attendance is not compulsory.
- In order to involve people in different circumstances, members may also be asked to contribute via telephone, letter, email or a one-to-one meeting.
- Other opportunities for involvement of ALWAYS members in the IDEAL project will also be given when they arise.
How the views of the network will be fed into the project
Alzheimer's Society and Innovations in Dementia will represent the views of the network at management group meetings. Additionally, individual members of the project team may be asked to attend project team meetings, directly feedback to individual project team members or may be part of the Project Advisory Group.
How the ALWAYS network has helped the project so far
- Helped convert the Living with Dementia Toolkit website into printed or printable resources, and with how to market the toolkit through the innovative use of postcard-sized fridge magnets.
- Members represented IDEAL at the 35th Global ADI Conference and Dementia Congress 2022
- Contributed to edited 'The World Turned Upside Down' documentary film and sharing this resource
- Contributed to the development of a successful bid to the Arts Council of Wales
- Meeting regularly to discuss further dissemination
- Co-developed the Living with Dementia Toolkit for people with dementia and carers
- Launched the Toolkit at the ESRC Festival of Social Science in Exeter, November 2021
- Helped create 'The World Turned Upside Down', a play about dementia and communication, by selecting scenarios and sharing lived experience with the Director and actors.
- Kept in touch via Zoom meetings during Covid-19
- Reviewed the telephone interview processes for INCLUDE, a Covid-19 related project with IDEAL participants, and added some questions to the survey
- Made recommendations for the best ways of engaging with people with dementia on the telephone
- Contributed to the recommendations arising from the IDEAL COVID-19 Dementia Initiative to be submitted to the Department of Health and Social Care
- Contributed to a document for commissioners (developed by Alzheimer’s Society) – putting IDEAL findings into practice
- Reviewed the IDEAL-2 questionnaires and advised on wording changes
- Worked with the DEAR group of people with dementia to comment on a new measure of living well with dementia being developed for IDEAL-2: a summary written by one of the participants can be found here.
- Interviewed for an article about ALWAYs for Alzheimer’s Society’s "Dementia Together" magazine which can be read here
- Became authors - lead authors of the publication https://doi.org/10.1177/1471301218789309
- Presented at the UK Dementia Congress 2018
- Created a film about their experience of involvement
- Helped develop a masterclass of good PPI practice in research
- Met with the new IDEAL-2 team members
- Reviewed study progress.
- Represented IDEAL at the British Gerontology Society Conference in Swansea, July 2017.
- Consulted about the continuation of IDEAL with the funding application for IDEAL-2.
- Reviewed analysis from the IDEAL T1 data.
- Contributed to the ESRC Festival of Social Science, Exeter Nov. 7th 2017.
- Reviewed study progress.
- Members took part in piloting of the qualitative interview for IDEAL.
- Consulted about the research process and contributed to training.
- Discussed of a new measure to look at how people with dementia think about their condition.
- Represented IDEAL at UK Dementia Congress 2016 in Brighton.
- Consulted on the questions we ask.
- Advised us on the introduction of data linkage to IDEAL.
- Provided feedback that was used in researcher training.
- Met with the photographer to discuss the linked project 'A Life More Ordinary'
- ALWAYS network members have been involved in piloting of the IDEAL interviews