Launch of ‘Hear Our Voice!’ by The Irish Dementia Working Group

Campaigner and advocate Kevin Quaid said having the opportunity to influence dementia policy had given him "hope" following his Lewy Body Dementia diagnosis in 2017, at the age of just 57.

Kevin was speaking ahead of a launch of best practice guidelines ‘Hear Our Voice!’ which has been developed by The Irish Dementia Working Group (IDWG), supported by The Alzheimer Society of Ireland, and the Centre for Economic and Social Research on Dementia (CESRD) at NUIG.

This ground-breaking document provides 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 is unique. It was co-produced by people living with dementia and was written by people living with dementia, not for them.  

Vice-Chair of the IDWG Kevin Quaid, believed the publication gave him "a lot of hope to ensure people with dementia can, in an effective way, influence policy groups, conferences and research in the future."

He said: "I was in a dark place after my diagnosis in 2017, I felt useless and I struggled to motivate myself. I know this is a progressive illness without a cure, but I also know that I need hope to live.

"Being an advocate and working to influence policy gives me great hope and this ‘Hear Our Voice!’ document shows that people with dementia can have their voices heard in society.

"I think about people with dementia who struggle to be heard, especially in these past couple of devastating months during Covid-19, and I keep them in my thoughts as I try to change things for the better for all of us.

"People with dementia, like myself, are experts by experience and our voice is critical in the planning of dementia supports and services. It 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," said Kevin.

The scope of the guidance included the involvement of people with dementia in activities such as: membership of policy groups, advisory groups and similar committees; involvement of people with dementia in consultation processes, either individually or as members of a group; and the involvement of people with dementia in meetings and conferences as presenters, panel members or other roles.

The cover image of the document was designed by IDWG member Marguerite Keating. Marguerite used the forget-me-not flower and worker bees; the bees symbolise the members of the IDWG.

The Virtual Launch of Hear Our Voice! Guidelines for involving people with dementia in policy, advisory, consultation and conference activities took place on Friday, June 5th.

The document can be down loaded HERE.

 The Alzheimer Society of Ireland CEO, Pat McLoughlin 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 of Ireland and people living with dementia inform everything we do and are at the core of the organisation. If we listen to people living with dementia, they can support us to create a better and more inclusive network of dementia supports.”

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.”