Projects focusing on Advocacy and Awareness
National Dementia Strategy: Department of Health
Providing advocacy to people with dementia recognises they have the same rights as other citizens. The lead organisation in the field of advocacy in Ireland is the Alzheimer Society of Ireland (ASI), which was supported by Atlantic investment to focus on its Voice and Advocacy in Dementia programme.
One of the key achievements of the ASI has been in mobilising people to support government action and timely engagement on dementia, in particular advocacy to ensure the development of the National Dementia Strategy.
The ASI formed a group consisting of people with dementia called the Dementia Working Group and a group for dementia carers called the Dementia Carers’ Campaign Network. Members of the Dementia Working Group have become strong public advocates in relation to dementia. Their profile and visibility in media and as advocators has had a significant impact on political positions and policies. It has also had a practical and positive influence on the lives of people with dementia, helping to raise awareness of the impact of stigma attached to the disease.
Dementia Friendly Communities (DFC) is also run by the ASI across seven sites nationally, providing opportunities and activities for people with dementia and helping to raise awareness and understanding where people live, work and socialise about dementia.
Sage is a support and advocacy service for older people, including people with dementia, in nursing homes, acute hospitals, community settings, hospices and hostels. Sage has identified six areas as key to developing a more inclusive and supportive environment for vulnerable older people: respect, social justice, competence and compassion, accessibility, independence and accountability. Through Sage, which is operated under the auspices of the Third Age Foundation, advocacy is now increasingly seen as a national issue in Ireland.
The Think Ahead Programme, commissioned as part of the Changing Minds Programme at the Irish Hospice Foundation, was originally aimed at the general public to encourage people to think about care and supports at the end of life. As part of the Atlantic programme, however, Think Ahead will be adapted for use with vulnerable adults such as people with dementia. Its main objective is to increase public awareness and interest in end of life care and advance planning by providing a service that is available when people want to engage with it.
Atlantic also supported the development of an advance care directive education programme at the Centre for Gerontology and Rehabilitation called Let Me Decide Advance Directive (LMDAD), empowering people to make explicit their healthcare preferences.
Advocacy in Action
Now I Have Hope
A leading example of the success and impact of the Dementia Working Group is Helen Rochford-Brennan, who was diagnosed with early-onset Alzheimer’s disease in her late fifties. Through the ASI, Helen and others have become teachers and agents of change dedicated to telling the world the importance of not letting the disease define who and what you are. Helen believes that the silence surrounding dementia needs to be broken and argues that:
“this can only happen when people with dementia are given a voice; a platform and put at the heart of that change. I thought my days of activism were over. I had packed away my hopes alongside my dreams, but as Desmond Tutu said: “Hope is being able to see that there is light despite all the darkness.” Now I have hope; a small budding flower that will continue to grow so long as I have a voice, as long as I am still Helen.”
“It’s just another disease, like so many others: it just needs to be seen for what it is, and not feared”
Ronan Smith, Irish Dementia Working Group
The Five Pillars