New Research on Family Carers of Those with ID

Posted on: 16 June 2016

People with intellectual disability (ID) are now living longer than ever before – in many cases they are outliving their parents, who are often their primary care-giver.

However there is a deficit of research exploring family caregiving capacity in Ireland, particularly within the ID sector. Now new research from Trinity College Dublin’s School of Nursing and Midwifery, funded by the National Disability Authority and launched during Carer's Week (Jun13-19), aims to shed light on the subject and hopefully enable long-term and sustainable family environments for people with ID as they age.

The study, ‘Understanding Family Strategies that Enable Long Term and Sustainable Home Environments for Older People with an Intellectual Disability’, builds on the DoH and HRB-funded study IDS-TILDA, the intellectual disability supplement to Trinity’s longitudinal study on ageing in this country.

Of particular interest to the researchers was to illuminate barriers and enablers for families with an older person with ID and to identify best practice for supporting those families.

With regard to the sustainability of family caregiving, key findings were:

• The current ‘one size fits all’ approach to contemporary ID policy was deemed by families to be incongruous with the needs of older adults with ID.

• The ‘love labour and care’ provided by family caregivers is essential but very difficult to measure, cost and replace.

• Sibling caregivers in particular felt physically, psychologically and intellectually unsupported in their role.

• ID services such as day services and training centres were deemed by families to play a crucial role in maintaining their caregiving capacity.

• Many of the families’ had not discussed or agreed future care plans.

• Many of the families felt their family member with an ID would require residential services in the future.

Speaking on the findings, School of Nursing and Midwifery Assistant Professor Damien Brennan commented: “Now more than ever, it is important for people with an intellectual disability and their families to consider their long-term care needs as they age. Furthermore, Irish social policy must anticipate and meet these needs so as to ensure that old age for people with an intellectual disability is a positive and life-affirming time. Family carers are key to providing sustainable home environments for older people with an intellectual disability; they demonstrate outstanding love in their caring but feel very unsupported and undervalued in their role.”

Professor of Ageing and Intellectual Disability Mary McCarron further added: “IDS-TILDA interviewed a number of families who were supporting their ageing family member. Fifty per cent of those interviewed felt totally overwhelmed, with four out of every 10 suffering huge financial strain with many having to make work adjustments or give up work to take care of their family member. 

“Unlike the general population the majority of carers (68%) were sibling carers. The overwhelming majority of those who were ‘strained’ were actually sibling carers, despite being younger. ‘I am happy to take care of my sister. Just overwhelmed of having to take full responsibility on my own’ – this is a quote from a sibling carer.” 

Professor McCarron also highlighted this “triple decker sandwich generation”, with many taking care of their own children, their parents who were ageing, and on top of this their ageing family member with an intellectual disability.

• A summary of the report findings ‘Understanding Family Strategies that Enable Long Term and Sustainable Home Environments for Older People with an Intellectual Disability' is available here http://www.idstilda.tcd.ie/