First Longitudinal Study on Ageing in Persons with Intellectual Disability in Ireland

by Kathy O’Grady

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Mr John Moloney, TD and Minister of State for Equality, Disability and Mental Health, visited the School of Nursing and Midwifery in Trinity College, Dublin, on 3 December 2008 to launch the largest study on Ageing in Persons with Intellectual Disability (ID) ever undertaken in Ireland. At the launch, on the International Day of Persons with Disabilities, Minister Moloney said, ‘It is very fitting in my view that we here in Ireland can mark the day in such a special way with the announcement of this significant endeavour.’ He also said that he would fight to ensure that funding for the Trinity study on ageing in persons with intellectual disability was continued.

Welcoming the Minister, Professor Mary McCarron described the historic occasion by saying that not alone was it the first longitudinal study of ageing in persons with ID in Ireland, but also for a longitudinal study of its kind within the EU, and the only study to date with the potential to compare the ageing process in people with ID with other groups. Professor McCarron reflected that ageing in persons with ID is a relatively new phenomenon- In the 1930s, the average life expectancy for a person with Down Syndrome was estimated at nine years. Today most people with Down Syndrome survive into their 50s and 60s, and beyond. Further to this, almost half the people with a moderate, severe or profound intellectual disability living in Ireland are aged 35 or over- In the next five to ten years the biggest proportion of people with ID in Ireland will, in fact, be over 50 years of age.

Celebration

Professor McCarron emphasised that the fact that this is the first time in history that we have a sizeable population of older persons with intellectual disability is an incredible success story that we should celebrate. She stated that as Irish society celebrates, and seeks to understand the challenges, of a growing population, with increased life expectancy, it was timely that Trinity College Dublin launched Ireland’s first Longitudinal Study on Ageing (TILDA) in the general population. Previous international longitudinal studies on generic ageing (such as ELSA—English Longitudinal Study onAgeing—in the United Kingdom, or HRS—Health and Retirement Study—in the United States) have not reported the inclusion of people with intellectual disability. The Intellectual Disability Supplement to TILDA is therefore most welcomed.

Professor McCarron thanked Janet Swinburne, Project Manager, for the outstanding contribution she has made to the project, as well as Professor Rose-Anne Kenny, Principal Investigator of TILDA, and the TILDA study team for their support. She expressed gratitude to the Health Research Board for their funding of the pilot phase and the first wave of data collection of the Intellectual Disability Supplement and she also thanked the Scientific Advisory Committee and the National Intellectual Disability Database committee for their help in identifying the sample of 800 persons with intellectual disability who are to be followed in the study over the next 10 years. She also marked the contributions of the National Federation of Voluntary Bodies, Inclusion Ireland and the Health Service Executive, acknowledging their help and encouragement with this very important study.

Finula Garrahy, a board member of Inclusion Ireland, presented a parent’s perspective, welcoming the fact that good health is not just an absence of illness, but a capacity to live life to the full. She anticipates that the study will demonstrate the necessity for preventative medicine for people ageing with intellectual disability, whether living at home or in service settings. Finula referred to an interest in dental care—a survey carried out in 2004 found that adults aged 55 and over living in residential care were twice as likely to have no teeth compared with the general population. Finula spoke of the steep learning curve her family faced recently when their family member Susan, who has Down Syndrome, was diagnosed with an under-active thyroid (which responded well to prescribed medication), insulin-dependent diabetes and coeliac disease. Finula said ‘all parents worry about the welfare of their family member as they themselves age.’ Given that the vast majority of people with intellectual disability live at home, parents’ concerns are very real, and they worry constantly about what will happen when they die. She emphasised that ‘given that people are living longer, adequate provision must be made for their appropriate care in their latter years.’

After Finula’s thought-provoking presentation, Marie Therese Corbett spoke as a self-advocate. Marie Therese, who had resided in residential centres for most of her life, is currently living in a community residence in Trim, County Meath, under the auspices of the Sisters of Charity. She spoke eloquently about her busy lifestyle, despite a visual impairment and arthritis, and she emphasised the importance of diet, exercise, massage, physiotherapy, and prayer in staying physically and mentally well.

Professor Philip McCallion from the Centre of Excellence in Ageing Services in New York State University (Albany) and visiting Professor to the School of Nursing and Midwifery at Trinity College, also spoke at the launch. He said that the inclusion of the Intellectual Disability Supplement to TILDA represents a major step towards building an evidence base on which to develop robust national health and social-care policies and services in areas concerning older people with intellectual disabilities.

As well as input from the above speakers, those who attended the launch of the Intellectual Disability Supplement to TILDA also enjoyed a marvellous exhibition of over 200 photographs taken by 130 people with intellectual disability around the country. The study logo design competition winners Enda Hegarty, Mary Ellen McHugh, Tom Wilson, Gerard Moran, Martin Quinn, Mary Walsh, Brian Slevin, Patricia Maloney, Mark Duffy, and Bernie Fox from Áras Attracta, Swinford, Co. Mayo, were also present. The people whose images comprise the Intellectual Disability Supplement to TILDA study banner include Christine Patterson, William Collins, Fintan Walsh (R.I.P.) and Margaret Gahan.

Commencement of the Pilot Study

The pilot study has commenced at the end April 2009; it involves approximately 80 people with intellectual disability aged 40 years and over, from three different services in urban and rural locations around Ireland. The services participating in the pilot are the Daughters of Charity Service in Dublin, and Áras Attracta and Western Care Association in Co. Mayo. The pilot study will test the logistics and gather the critical information needed to improve the quality and efficiency of the research design, prior to the main national study commencing in October 2009.

The Intellectual Disability Supplement to TILDA will be one of the most comprehensive studies of its kind undertaken to date, not only in Ireland, but across Europe. Frontline readers will look forward to following the progress of the study which over time will involve approximately 800 people with intellectual disability aged 40 and over from across Ireland, charting their health, social, economic, environmental and psychological status as they age over a ten-year period.

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