More than 150 people with intellectual disabilities, their families and carers gathered in Trinity College Dublin this week for the official opening of the new Trinity Centre for Ageing and Intellectual Disability. They also celebrated ten years of their participation in a longitudinal study on ageing for people with intellectual disability and the impact of this research in improving health care, economic and social well-being.
The first of its kind worldwide, the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) has been researching ageing in Ireland among people with an intellectual disability aged 40 and over, for the past ten years. More than 700 people in Ireland have taken part in IDS-TILDA and remained with the study since its inception.
Also this week IDS-TILDA hosted an international conference on ageing with an intellectual disability. The event was attended by approximately 200 physicians, nurses, service providers, government representatives, researchers and students. At the conference held on Wednesday, September 20, new research examining the health, well-being, social participation and living circumstances of people with intellectual disabilities against the backdrop of the Government policy of deinstitutionalization.
The event heard from national and international experts in ageing and intellectual disability who will present research on housing transitions, medication management, loneliness, dementia, family caregiving and bone health. The findings highlight how much more work is needed to ensure supports and structures are in place to assist people with intellectual disabilities to live in and engage with their communities in a meaningful way, according to Professor Mary McCarron, Dean of the Faculty of Health Sciences at Trinity and Principal Investigator of IDS-TILDA.
Professor McCarron commented:
“People with an intellectual disability continue to present with greater and more complex health and social issues at much younger ages than their peers in the general population. Frequently, the health problems of people with an intellectual disability go unrecognised and, as a result, are unmet, especially in areas such as medication management, mental health, dementia, bone health and end-of-life care. Challenges also exist in health promotion involvement, access to primary health care, as well as in housing and other social policies.”
“Moving people from institutional settings to community-based alternatives presents both challenges and opportunities. It is a complex issue and progress has been slow to date. Significant challenges exist in the provision of health and social care in the community setting for some people with intellectual disabilities. But that should not stop the process of moving people to environments where they will have more choice and more engagement with their local community. Living in the community is not simply about geographical location. We need to have a real understanding of what community is. It is about friends, relationships and opportunities. To continue to support this policy of moving people with intellectual disabilities from institutional settings to community-based alternatives, we need to ensure the right supports and structures are there to help and assist them to truly engage in a meaningful way with their community.”
Key findings presented at the conference:
Housing transitions and choice:
- Of the 120 people tracked in the research who changed place of residence, 40% did not want to move;
- Only 30% were involved in the decision to move;
- Only 20% viewed alternative options before moving;
- 60% of moves were lateral moves to similar types of residences, 27% moved to community-based settings and 13% moved to more restrictive settings;
- Some of the participants had to return to their original service provider to access health care.
Family Care Giving:
- Love, devotion, and commitment between family carers and their family member with an intellectual disability underpins caregiving within the family home, however, this is difficult to quantify, cost and plan for;
- Most families feel that they represent the last remnant of family caregiving capacity existing within the family, this is particularly the case for sibling care givers;
- Future care plans were not discussed between family members and are mainly aspirational in nature;
- There is significant uncertainty regarding who is ‘responsible’ for caring in Irish society? Is it the state / the family / the person who requires care?
- Older people with an ID are nearly twice as likely to be consistently lonely when compared to the wider population
- Loneliness leads to sleep disruption and raised blood pressure
- Loneliness is caused by transport problems, pain, service changes and depression
Social and community participation:
- One-size-fits-all policy solutions or blanket approaches to provision are not suitable – people with intellectual disabilities are not a homogenous group;
- Community is about more than just geographical location and integrated housing; interdependent relationships that foster belonging (to people and/or to place) are more important;
- Many older people with intellectual disabilities live active social lives with family, friends and community; and this is beneficial to their positive mental health and overall quality of life;
- Social and community participation is complex and multi-factorial – it cannot be easily explained by looking at individual factors.
Provost, Dr Patrick Prendergast said: “The Trinity Centre for Ageing and Intellectual Disability is the first dedicated Centre to investigate key issues in ageing, intellectual disability and the life course. Underpinned by the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing, the Centre will advance world-leading research. Through a transdisciplinary and cross-sectoral approach, it will explore the individual and societal impacts associated with ageing, in order to address gaps in knowledge, inform clinical practice, improve service provision and evaluate the efficacy of policies over time. Here at Trinity, we are a beacon in research on ageing. IDS- TILDA and this new Centre play an important role in this as we aim to improve and make a real impact on people’s lives for the future.”
Speaking at the opening of the conference Finian McGrath TD, Minister of State for Disability Issues, added: “The IDS-TILDA study has been at the forefront of research on ageing and intellectual disability, recognised not only in Ireland but also internationally as leading the way in research about the lives of people with an intellectual disability. The increased life expectancy of people with an intellectual disability is an incredible and welcome success story and one to be celebrated, but, it also poses tremendous challenges. Good data is critical for guiding policy and also for evaluating the outcomes of policy decisions. The Department of Health and Health Research Board are committed to supporting research that improves health and well-being.”
“The Programme for Partnership Government contains a commitment to continue to move people with disabilities out of congregated settings, to enable them to live independently and to be included in the community. The objective is to reduce this figure by one-third by 2021 and ultimately, to eliminate all congregated settings. The implementation of the Transforming Lives Programme will result in a change in how disability services are funded and provided, shifting choice and control from professionals and administrators to where it rightfully belongs – with the individual with a disability and their family. In addition, services and supports for people with disabilities will be delivered with greater efficiency and transparency.”