Many families that provide care to a loved one with intellectual disabilities (ID) have not discussed or agreed on future care plans for that person, a new study has found.

According to researchers in Trinity College Dublin's School of Nursing and Midwifery, people with ID are now living longer than ever before, with many outliving their parents who are often their main carers.

Despite this, there is very little research in this area so they decided to look at it more closely, particularly in relation to supporting families with an older person with ID.

The study found that many families felt that their family member with ID would require residential services in the future. However, many families had not discussed or agreed on future care plans.

It also found that ID services, such as day services and training centres, played a crucial role in allowing families to continue to provide care.

Not surprisingly, the ‘love, labour and care' provided by family members was found to be essential, but very difficult to measure, cost and replace.

Meanwhile, sibling carers in particular felt physically, psychologically and intellectually unsupported in their role.

"Fifty per cent of those interviewed (for the research) 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," noted Prof Mary McCarron, professor of ageing and intellectual disability at TCD.

She highlighted the ‘triple decker sandwich generation', which refers to those people who are having to take care of their own children, their ageing parents and an ageing family member with ID.

The researchers called on affected families to consider their long-term care needs as they age. They also noted that social policy ‘must anticipate and meet these needs so as to ensure that old age for people with ID 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," commented TCD's School of Nursing and Midwifery assistant professor Damien Brennan.

The research was funded by the National Disability Authority and the findings were released as part of National Carers' Week, which runs until June 19.