Compound caregiving: when lifelong caregivers undertake additional caregiving roles

Lifetime parental caregivers of adults with intellectual disabilities (ID) may also become caregivers to other family members. This study investigated caregiver experiences of compound caregiving (i.e. additional caregiving roles) and its association with caregiver quality of life.

Ninety-one older caregivers living with their adult son/daughter with ID were interviewed. Mean age of the caregivers was 60 years and their sons'/daughters' mean age was 29 years.

Compound caregiving status, physical and mental health, life satisfaction, depressive symptomatology, and desire for alternative residential placement for their co-residing son/daughter.

Thirty-four (37%) reported being current compound caregivers to an additional care recipient, predominantly a mother, father, or spouse. Caregivers averaged 39 hours per week fulfilling their primary caregiving tasks, an additional 12 hours per week on the compound caregiving role, and the median duration of compound caregiving was 3 years. Compared with the non-compound caregivers, the compound caregivers had increased desire to place their son/daughter into residential care, though no group differences were apparent in life satisfaction, depressive symptomatology, physical health, or mental health. The most problematic issues reported by compound caregivers were having little personal time and a lack of adequate help from others.

Compound caregiving was often experienced, and may galvanize these lifetime caregivers to start making future plans for their sons/daughters. Future research is warranted to refine more homogeneous groupings of compound caregivers, who may be at greater risk for adverse outcomes.