The impact of caring for an adult with intellectual disability and psychiatric comorbidity on carer stress and psychological distress.
Autism on top of ID is a red flag for carer stress, so build extra caregiver support into the behaviour plan.
01Research in Context
What this study did
Reeve et al. (2016) asked carers to fill out two short surveys. One measured stress. The other measured general distress.
All carers looked after adults with intellectual disability. Some adults also had mental health issues. The team compared the two groups.
What they found
Carers of adults with both ID and mental health problems scored higher on both stress and distress. The jump was sharpest when the adult also had autism.
In plain words, autism plus ID packs a double punch for carers.
How this fits with other research
Martorell et al. (2011) and Burford et al. (2003) saw the same pattern earlier. They found that any mental health add-on raises carer burden. F et al. pinpoints autism as the key driver.
Gaynor et al. (2008) looked at epilepsy instead of autism. After matching for skill level, epilepsy added no extra carer strain. This shows that not all diagnoses are equal.
Adams et al. (2021) pooled 32 studies and confirmed that mothers of people with ID have worse mental health across the board. F et al. fills in the detail that autism makes the gap even wider.
Why it matters
If your client has both ID and autism, expect carer fatigue to be high. Offer respite vouchers, sibling support nights, or tele-health check-ins. A five-minute carer mood screen at the start of each month can catch burnout early.
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02At a glance
03Original abstract
BACKGROUND: Given that carers of individuals with intellectual disability (ID) and carers of individuals with psychiatric disorders experience elevated levels of stress and psychological distress, carers of individuals with both ID and a comorbid psychiatric disorder are potentially at even greater risk for psychological difficulties. The aim of the present study was to investigate the psychological well-being of carers of adults with a dual diagnosis compared with carers of adults with intellectual disability alone. METHOD: Four-hundred and forty-two questionnaires were sent to four community services and seventy-five family carers of adults with intellectual disability responded. Psychological well-being of carers was assessed using the Questionnaire on Resources and Stress - Friedrich edition (QRS-F) and the General Health Questionnaire (GHQ). Comorbid psychopathology for their family member with ID was assessed using the Reiss Screen for Maladaptive Behaviour (RSMB). RESULTS: Twenty-four percent of the individuals with ID were reported to have comorbid psychopathology. Between-group analyses compared carers of people with ID and comorbid psychopathology to carers of people with ID alone. Regression analyses examined the relationship between psychopathology and other care-related variables to carer stress and psychological distress. Carers of people with ID and comorbid psychopathology were found to have significantly higher levels of stress and psychological distress than carers of people with ID alone. Autism was found to be the only significant predictor of both stress and psychological distress among measures of psychopathology. CONCLUSIONS: Additional comorbid psychopathology in individuals with intellectual disability has a significant impact on their carers' psychological well-being.
Journal of intellectual disability research : JIDR, 2016 · doi:10.1111/jir.12269