Accessible summary
When sons and daughters with disabilities live with their parents all their lives, this can sometimes be difficult for the parents as well as the sons and daughters. We asked the parents what they like and dislike about having their sons and daughters living with them and what makes it easy and what makes it difficult. The parents who took part in this study told us that
They loved their sons and daughters very much and had much fun living together;
Sometimes they had difficulties getting help or services;
They worry a lot about the future and what will happen when they can no longer look after their sons and daughters with disabilities;
It is really important that families plan ahead so that everyone knows what will happen when parents get older and can no longer look after their sons and daughters with disabilities.
Summary
Research‐informed policy and practice is needed for older caregivers of adult sons/daughters with disabilities. These caregivers are often under tremendous stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Twenty‐nine older parents/caregivers of 27 adults with intellectual and/or developmental disabilities were interviewed to explore their views and experiences regarding long‐term care and service arrangements, health and psychological needs and ‘future planning’. Findings show a severe lack of support, respite care and future planning which causes high stress levels for caregivers. Policy makers and researchers working in this field need to take into consideration the needs of older caregivers when making future plans for adults with disabilities.