The Irish Dementia Working Group (IDWG) hosted a Virtual Launch of the document “Hear Our Voice! Guidelines for Involving People Living with Dementia in Policy, Advisory, Consultations and Conference activities”. This project is a collaboration between the Centre for Economic and Social Research on Dementia, The Alzheimer Society of Ireland (ASI) and the IDWG. The documentprovides practical guidance in a user-friendly format for individuals and organisations that wish to involve people with dementia in their work or gain their views in a formal way. This publication was co-produced by people living with dementia - writtenbythem, notforthem.
Senior Research Fellow, Centre for Economic and Social Research on Dementia at NUIG, Dr Fiona Keogh said: “We have been working with the members of the Irish Dementia Working Group and The Alzheimer Society of Ireland for many years now and have learned so much about what works best in terms of involving people with dementia as equal partners in our work. Co-producing the guidelines was a wonderful opportunity to bring all of that learning and experience together so that it can be shared more widely to increase the ways in which people with dementia are involved in policy and providing advice and expertise to a wide range of other organisations.”
Speaking at the launch, Pat McLoughlin, CEO of The ASI said: “Authentic participation of people living with dementia does not just happen; it takes planning, capacity building and robust support. I know policy makers want to involve people living with dementia and I believe this document can support them to do so. I have learned so much from people living with dementia during my time with The Alzheimer Society and if we listen to them they can support us to create a better and more inclusive network of dementia supports.”
Over 150 people attended the virtual launch. The interest within the dementia community to support involvement of people living with dementia was palpable. Vice Chair of the IDWG Kevin Quaid, commenting on this interest, reminded those in attendance of the benefits of involving people with dementia, in particular as we live through a pandemic: “People with dementia, like myself, are experts by experience and our voice is critical in the planning of dementia supports and services. Covid19 has been such a devastating time for people with dementia and their family carers with so much anxiety, anguish and confusion. But this document has reminded me that there is hope for the future. Our voices can be heard loud once more. We will prevail. I hope you enjoy reading it and more importantly I hope you use it!” The document is available here https://alzheimer.ie/wp-content/uploads/2020/06/FINAL-Hear-our-voice.pdf
The development of the document was funded through a Knowledge Exchange and Dissemination grant #KEDS-2018-017 from the Health Research Board in Ireland.
