Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems.
When intellectual disability is paired with severe behaviour or mental-health problems, family caregiving burden jumps sharply.
01Research in Context
What this study did
The team asked families about the load of caring for a relative with intellectual disability.
Some relatives also had severe behaviour or mental-health problems.
The survey compared burden between the two groups.
What they found
Families caring for relatives with both ID and severe behaviour or mental-health problems felt a much heavier load.
The burden was clearly higher than for families dealing with ID alone.
How this fits with other research
Martorell et al. (2011) asked the same question with adults and got the same answer: dual diagnosis equals highest burden.
Reeve et al. (2016) zoomed in and showed autism is the extra diagnosis that most spikes carer stress.
Scheithauer et al. (2025) listed the concrete harms behind the numbers: 73% of caregivers faced physical harm and 64% saw property damage.
Together the papers form a clear line: behaviour plus ID equals heavier, and sometimes dangerous, caregiving load.
Why it matters
If your client has ID plus severe behaviour or mental illness, expect the family to carry a double load. Build in respite, teach safety plans, and link to mental-health services early. Document the extra burden when you write for funding; reviewers already have data that backs you up.
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02At a glance
03Original abstract
BACKGROUND: During the last decade, there has been a growing interest in outpatient support services for persons with intellectual disability (ID) and psychiatric and/or behavioural problems and their families. In this study, we explore the family burden that is associated with children or adults with ID and behavioural or psychiatric problems living at home. METHOD: The research group consisted of 66 clients of In Casa, a project of outpatient treatment. Their average age is 18.97 years and their average IQ 55.37. The Reiss Screen for Maladaptive Behaviour (adults) or Reiss Scales for Children's Dual Diagnosis (children) and the Nijmegen Family Situation Questionnaire have been administered. RESULTS: About 62% of the children and 86% of the adults living at home and referred to In Casa have severe psychiatric or behavioural problems as measured by the Reiss scales. The dual diagnosis has a more negative impact on the family situation than the condition of ID only. CONCLUSION: Parents consider the psychiatric or behavioural problems of their child to be an extra burden and feel it more difficult to raise and manage such a child. This impels them to change the situation and to call on the help of external services. Some methodological questions and the implications of the findings in terms of support needs are discussed.
Journal of intellectual disability research : JIDR, 2003 · doi:10.1046/j.1365-2788.2003.00513.x