First Report on Growing Older with an Intellectual Disability in Ireland Launched at Conference
Sep 09, 2011
The report: Growing Older with an Intellectual Disability: The First Results of The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA), was launched (September 9th 2011) by the Minister of State with responsibility for Disability, Equality, Mental Health and Older People, Ms Kathleen Lynch at Trinity College Dublin. The report, which was funded by the Health Research Board and Department of Health and Children, was launched at the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing Conference 2011.
These are the first results from The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA)*, a national representative study of 753 people with an intellectual disability (ID) aged 40 and over, and the most comprehensive study ever conducted on ageing in persons with an intellectual disability in Ireland. It is the only study of its kind able to directly compare findings for people with ID with findings on ageing in the general population.
Prof Philip McCallion, Co-Prinicipal of IDS-TILDA; Paul Alford, Self-Advocate; Prof Mary McCarron, Principal Investigator of IDS-TILDA; Minister Kathleen Lynch, with responsibility for Disability, Equality, Mental Health and Older People; and Dr Patrick Prendergast, Provost Trinity College Dublin.
Between 2010 and 2011, adults with an intellectual disability were interviewed from all across Ireland about their health, social, psychological, economic and environmental circumstances. Similar to The Irish Longitudinal Study On Ageing (TILDA), this same group of people is to be interviewed every two years until 2018. Commenting on the significance of the findings, Principal Investigator of IDS-TILDA and Head of the School of Nursing & Midwifery, Professor Mary McCarron said:
“IDS-TILDA is a hugely important study for people with intellectual disability in Ireland. Over time, IDS-TILDA will provide a comprehensive picture of the lives of this population group as they age in Ireland, and it will identify through in-depth comparative analyses, the similarities or differences within the intellectual disability population group, and compare its findings directly to the general ageing population.”
“This baseline and future Waves of IDS-TILDA have the potential to inform policy and practice for decades to come. However none of this would have been possible without the participation, support and enthusiasm of people with intellectual disability, families, staff and services throughout Ireland.”
The findings in the report cover many areas:
• People with ID enjoy life as they get older. Most had a hobby, went on holidays or day trips, engaged in regular leisure pursuits and had social contacts with others. But they seldom engaged in social activities with friends outside their home and that families had limited roles in their lives.
• Over three quarters of adults with an ID reported that they never wrote, texted, emailed or used social media tools such as Facebook to contact their family or friends. Moreover, less than 60% used the telephone to make such contacts. Adults with an ID were less likely to own a mobile phone than other adults in the Irish population.
• Adults with an ID in Ireland were not actively engaged with their communities and community ‘presence’ was not actually equated with ‘living’ in the community.
• For most older adults, family and friends are their primary contacts and supports. It is a concern that the opportunities for such support is more limited for people with ID; few have spouses or children and they seem excluded from the digital age.
• Many in the IDS-TILDA sample, particularly those in the younger age cohorts, reported experiencing good health but there were significant concerns in terms of cardiac issues (including risk factors), epilepsy, constipation, arthritis, osteoporosis, urinary incontinence, falls, cancer, and thyroid disease. • Younger adults with an ID had a much higher incidence of disease and identifiable risk factors for conditions such as coronary artery disease and stroke, than same age and older cohorts in the general population. Women with ID had higher risks for many diseases.
• There was good access to physicians and dentists but one in three adults with an ID reported that they found it difficult to make themselves understood when speaking with health professionals.
• The prevalence of diabetics in those age 50-64 years was double that found for the general population. Women within the mild to moderate range of ID were at the greatest risk.
• Sixty one percent of Irish adults with ID are overweight or obese
• Older age and more severe levels of ID often meant having fewer members in one’s social network and this appeared to be associated with greater risk for social isolation. Where people lived also influenced the size of social networks, with those living in residential centres at greater risk of isolation. • Fifty percent of those self-reporting stated that they sometimes felt lonely and one in three people who reported experiencing loneliness found it difficult to make friends
• Prevalence of depressive symptomatology was higher among women. It also increased with age, level of ID, sensory loss, reported experience of loneliness and living in a residential centre. But of those who reported a mental health diagnosis, over 90% were in receipt of psychiatric support.• The levels of income secured through wages and disability allowances by people with an ID would be equated with poverty by other Irish citizens. Many people with an ID did not know how much money they had available, did not collect those funds for themselves and relied upon service providers’ central funds to manage the dispersing and use of these resources.
• Happiness was often linked to family relationships and valued simple aspects of life. Respondents reported being able to choose the food they ate, the clothes they wore, and what they did in their free time but little choice in where they lived, who they lived with and when they went to bed.
• People with ID had a positive outlook on ageing. Respondents equally had a realistic understanding of the ageing process and associated losses.
• Of particular concern was evidence in so many aspects of the lives of adults with ID that the majority were dependent upon others for transportation and other assistance to access the community, jobs and programmes. Participants saw their need for such assistance as a critical barrier. There is concern that funding cuts will mean staffing cuts, which in turn will mean less opportunities for people with ID to be part of the communities where they live.
Having established rates of disease it will be of interest, in further waves of IDS-TILDA data collection, to identify factors that pre-dispose and protect people with ID from particular conditions.
It will also be possible to explore how well screenings, treatments, exercise, nutrition and physician/dentist access prevent and manage conditions, as well as the impact of disease conditions on the quality of life and longevity of people with ID.
The results of this study further endorse the criticalness of longitudinal research and the importance of hearing the voices of this population group as they age. It is hoped that the data here will further influence the development of inclusive ageing policies and planning for the ageing population of Ireland. Securing funding for the subsequent waves of data collection is now underway.
As one participant noted:
“If I was an elderly person maybe if I was, I’d go into a home..., I know my mother wouldn’t but I would, Mam wouldn’t like to go into a home but if it was me I would because I’d have nobody to look after me.’”
Funding for Wave One was provided by the Health Research Board and the Department of Health and Children.
The Intellectual Disability Supplement to The Irish LongituDinal Study on Ageing (IDS-TILDA) was launched by Mr. John Moloney, Minister for Equality, Disability and Mental Health in September 2008 to study a representative cohort of people with intellectual disability, aged 40 and over in Ireland, charting their health, social and economic circumstances over a 10-year period. The study is being carried out by Trinity College Dublin and led by Professor Mary McCarron, Head of School of Nursing and Midwifery at TCD. Funding for Wave One was provided by the Health Research Board and the Department of Health and Children.