Programme: Galway City
WHO Theme: Respect and Social Inclusion, Social Participation
Cost: 1000 – 5000
Status: Ongoing
Description
Dementia Ireland Empowering Communities has developed from the personal experience of caring for a loved one who received a late diagnosis for mixed dementia.
https://www.thejournal.ie/palliative-care-angela-home-help-3004400-Oct2016/
We talk to communities, employers, organisations but voluntary and professional to help them understand what the dementia is and how they can be involved at making society more inclusive.
Carmel Geoghegan was a former carer and now supports a person living with Alzheimer to advocate on a global level.
By highlighting the lived experience, attitudes can be transformed and the life experience within local communities can be enhanced. Staying connected with sports groups, leisure activities, hobbies, volunteering and intergenerational engagement.
Policy makers, clinicians and the general public can be influenced and change follows.
Aim of Initiative
The initiative is to build awareness, reduce stigma and build a more inclusive society
https://www.advertiser.ie/Galway/article/90032/galwaywoman-keen-to-heighten-awareness-about-dementia
Encourage conversations within families, friends, organisations, medical specialists and the wider communities.
Give those with a diagnosis and their family a voice.
Make people aware of the opportunities that exist by speaking about their diagnosis to others.
Being proactive and staying connected within their community is very important.
Seeing the opportunities available to get involved in research i.e. music therapy https://www.youtube.com/watch?v=94Iwfw5pI5A
or in a community initiative.
Using social media as a tool to get information into public domain
Twitter – Facebook – Instagram – LinkedIn
https://twitter.com/CarmelGeoghegan
Our campaign around driving:
https://www.tiktok.com/@dementiaireland/video/7200499889443278086
Sharing information and research that will benefit the wider communities.
Who is it aimed at
The initiative is aimed at increasing awareness across all sectors. Dementia has no boundaries and does not discriminate. All sectors of our society are vulnerable.
Initially the focus was on families and local supports but has developed to a national level of awareness campaign with support from international individuals and organisations.
A annually conference was run from 2016 – 2019 inclusive ‘Living with Dementia in Rural Ireland’, showcasing policy and practice at home and abroad. This is a clip (rte.ie) of the 2018 Dementia conference which took place in Galway. We hope to resume our conference next year 2024 as Rural Ireland is often forgotten and people do not get the same opportunities for information and access to the experts. https://www.rte.ie/news/player/2018/0528/21372761-dementia-conference-taking-place-in-galway/
Conference 2019
https://www.independent.ie/regionals/sligo/news/dementia-strikes-at-any-age/38167548.html
https://www.agriland.ie/farming-news/people-in-early-30s-being-diagnosed-with-dementia/
Conference 2017
https://www.clare.fm/podcasts/coping-dementia-rural-ireland/
https://www.advertiser.ie/Galway/article/91367/caring-for-the-carers
https://galwaybayfm.ie/galway-bay-fm-news-desk/connemara-host-conference-impact-dementia-rural-ireland/
Conference 2016
https://www.universityofgalway.ie/about-us/news-and-events/news-archive/2016/may2016/nui-galway-conference-to-focus-on-living-with-dementia-in-rural-ireland.html
Engaging with medical students and encouraging interdisciplinary collaboration https://www.ucc.ie/en/med-health/news/understanding-dementia-together.html
3 Steps critical to success
- Meeting with like minded people to improve the lives of those who were living with a diagnosis or who were afraid to get a diagnosis. The gap was there and needed to be addressed – Carmel found this as the primary carer for her Mum in 2010 Helen found this when she received her own diagnosis and needed to find her new path in life. It was about sharing their experiences with others and building on that to bring change and clarity to others starting out on their own experiences. Building relationships with communities, educators and researchers.
- Building self resilience, confidence and a wider network of collaborators. Both ladies have business backgrounds and both were involved in community development so that was a great foundation going forward. When they meet up in 2016 for the inaugural ‘Living with Dementia in Rural Ireland’ and joined forces in 2017 when Helen invited Carmel to support her in her role in Alzheimer Europe https://www.alzheimer-europe.org/
They both knew where the various gaps were and were determined to campaign for better supports, services and basic human rights for those living with Dementia, their families and wider communities - Getting access to funding is difficult but as public patient involvement is now a recognised part of research this has improved access to medical researchers. Carmel and Helen speak to students at various levels in various disciplines. Community groups are very open and willing to facilitate information events. Leader Companies have been very supportive and are a great link to communities.
https://galwaybayfm.ie/galway-bay-fm-news-desk/connemara-host-conference-impact-dementia-rural-ireland/
https://www.leitrimobserver.ie/news/home/416620/national-dementia-conference-in-boyle.html
3 Challenges in Planning / Delivery
- Building capacity within the organisation – as a small initiative the momentum grew with the life experience and opportunities that arose for the organisation.
Upskilling is important and one that is at the fore – this is achieved by attending online courses and involvement in Public Patient Involvement groups.
https://primarycaretrials.ie/wp-content/uploads/2021/04/PPI-Conference-2021-Programme.pdf - Covid 19 was a difficult time – Dementia Ireland concentrated on
family support, sharing information, being available for those who needed to speak and be listened too. While technology is an amazing support there is no substitution for human interaction. - Reaching those living in the most remote and isolated regions is a challenge.
The new Irish communities are not as engaged as they could and should be.
Language, literacy issues are often barriers for accessing information and supports.
3 Outcomes / Benefits
- Better understanding of dementia and what it means
How a diagnosis is not the end but in fact can be a new beginning
https://www.alzheimer-europe.org/news/after-recent-road-trip-helen-rochford-brennan-supporter-carmel-geoghegan-shares-her-thoughts
Disseminating information that is often not reaching the wider communities. Getting engagement through local radio and print media- very powerful. Speaking to students from primary to 3rd level will ensure change in attitude going forward - Building awareness in the workplace
Building awareness in health care setting i.e hospitals https://www.advertiser.ie/galway/article/87676/galway-university-hospitals-launches-irelands-first-dementia-awareness-program
Building awareness and capacity within local authorities https://www.independent.ie/regionals/sligo/localnotes/presentation-on-dementia-was-widely-commended/36315039.html
https://www.sligococo.ie/YourCouncil/CountyCouncil/Minutes/Minutes2017/MeetingMainBody,44908,en.html
https://www.galwaycountyppn.ie/events/living-with-dementia-in-rural-ireland/ - Promoting person centred care in residential care setting https://www.drugsandalcohol.ie/view/people/Geoghegan=3ACarmel=3A=3A.htmlPromoting the importance of technology which can support the person to remain in their own home for as long as possible
https://www.radar-ad.org/why-and-howHaving dementia recognised as a brain disease and that through there is no cure as yet a good quality of life is possible.