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TCAID: In Focus - Dr Maureen D'eath. Family Carer's; results from the IDS-TILDA study

IDS-TILDA is a longitudinal study researching ageing in Ireland among people with an intellectual disability aged 40 and over. The study started in 2010 and has completed four Waves of data collection. The seven hundred and fifty-three people with intellectual disability recruited at the start of the study constituted a nationally representative sample. 11% (83) of the sample lived with a family member and they were invited to take part in the IDS-TILDA Carer Study; 44 took part in Wave 3 and the data presented relates to these family carers.

75% of participant carers were siblings in Wave 3 up from 58% in Wave 1. In Wave 3, almost 64% were aged between 46 and 65 years, two carers were aged 85 or over. More than 40% of the family carers had been caring for more than 20 years including 23% who had been caring for more than 40 years.

Although the experiences of families caring for older people with intellectual disabilities will mirror the experiences of carers in other contexts, a number of features also distinguishes these carers including the longevity of the caring relationship (Mahon 2019, Taggart et al. 2012), the impact of ageing on both the caregiver and the care recipient and concerns about the future of the care recipient when the caregiver dies or is no longer in a position to continue caring. Caregivers of people with intellectual disability often care for a longer period of time, provide more intensive care and spend more hours per week caring than carers in other carer groups (Totsika et al. 2017).


D’eath, M. (2021) A Study of Family Carers of Older People with Intellectual Disability in Ireland and the Social Policy Context of their Caregiving. Trinity College Dublin.

Mahon A; Pappas I; Randhawa; Tilley E. & Vseteckova J. (2019) Ageing carers and intellectual disability: a scoping review of literature. Quality in Ageing and Older Adults (Early Access). doi:

Taggart L., Truesdale-Kennedy M., Ryan A. & McConkey R. (2012) Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. Journal of Intellectual Disabilities 16, 217-234.

Totsika V., Hastings R.P. & Vagenas D. (2017) Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring. Health & Social Care in the Community 25, 951-961.