The 4 annual “Living with Dementia in Rural Ireland” conference was held in Boyle, Co. Roscommon, Ireland on 27 May 2019. It sought to address the need for more awareness of dementia; to help people feel more comfortable talking about it, openly; and to examine what needs to be changed at local, national, European and global levels. It also looked at barriers, such as stigma, lack of access to care, and difficulty obtaining a timely diagnosis.
People of all ages (some, even, in their early thirties) and from all walks of life are being diagnosed with dementia – a fact that was highlighted at the day-long conference. The main theme of this year’s edition was enabling people with dementia to live in their communities for as long as possible, and ensuring they are afforded the same rights and opportunities as everyone else. Access to a range of live-in, residential and other community supports is vital, for this to be possible.
Participants included a number of people diagnosed with dementia, and the event was an opportunity to listen to them, to hear their experiences and their concerns. The importance of their voices being heard, without the presence of “gate keepers” to “filter their views” was raised, throughout the day.
The conference heard from Helen Rochford-Brennan from Tubbercurry, Co Sligo, Ireland. Almost 7 years ago, at the age of 62, Ms Rochford-Brennan was diagnosed, after having already spent 5 years struggling with early-onset Alzheimer’s disease. She has since written very personally about living with Alzheimer’s dementia and hopes her participation in research will, one day, help find a cure. Her advocacy work, at national level with the Irish Dementia Working Group and at European level, as Chairperson of the European Working Group of People with Dementia (EWGPWD) allows her to share her experience with the widest possible audience, which she also hopes will help highlight the importance of research into dementia care and cure, leading to more funding and more results.
Professor Eamon O’Shea of National University of Ireland Galway (NUI Galway) and Ms Rochford Brennan spoke about the need, in Ireland, for a continuum of care. Currently, there is nothing available between home care and nursing home care. They both stressed the importance of looking at other models of care, such as independent living and assisted living units, which allow people to move to a more manageable home, if needed.
Carol Hargreaves, a member of the Scottish Dementia Working Group (SDWG) and of the EWGPWD, shared some examples of good practice from Scotland. Delegates were told that, in Scotland, people diagnosed with dementia are entitled to one year of post-diagnostic support, provided by the NHS, often via Alzheimer Scotland “Dementia Link Workers”. These specialists help highlight the supports and services available to the person diagnosed, to help them adapt and live as well as possible with dementia. Appropriate and relevant services are not available, however, in many parts of Ireland.
Seán Canney, Minister of State at the Department of Rural and Community Development and the Department of Communications, Climate Action and Environment with special responsibility for natural resources, community affairs and digital development attended the conference. “Events like the conference offer a forum for stakeholders and all those interested in dementia to come together and share their knowledge and experience. It was an extremely informative afternoon”, he commented. The Living with Dementia in Rural Ireland conference is organised by Dementia Ireland, set up by Carmel Geoghegan. Ms Geoghegan was a primary carer for her late mother. She is now an advocate for, and supporter of, campaigns that focus on dementia and end-of-life care, and works on the development of practice and policies that respect people living with a dementia diagnosis.
Pictured (left): Speakers and partners, inlcuding Roscommon LEADER Partnership, Citizens Information Services, Brothers of Charity Services and Older People Council, with Minister Seán Canney in the centre. Picture (right): Carmel Geoghegan (left) and Helen Rochford-Brennan (right)