Family caring of older adults with intellectual disability and coping according to loci of responsibility.
Carers who think "no one else can do it" feel worse—check their locus of responsibility before you offer respite.
01Research in Context
What this study did
Tavassoli et al. (2016) talked with family carers of older adults with intellectual disability. They asked how carers decide who is responsible for care tasks.
The team recorded long interviews. They looked for patterns in the answers. They wanted to know why some carers feel calm while others feel burned out.
What they found
Three mindsets showed up. Some carers say "only I can do this." Others share the load with siblings or staff. A third group trust outside services to lead.
Carers who feel "only I can do it" report the worst mood and health. Carers who share responsibility cope better.
How this fits with other research
Huang et al. (2014) found that poor sleep in the adult with ID raises carer depression. Teresa adds a new layer: the carer’s own beliefs also shape stress.
McConkey (2005) showed that services often ignore carer needs unless the client is very dependent. Teresa explains why: planners rarely ask carers where they place responsibility.
de Jonge et al. (2025) link caregiver depression to care-recipient grip strength. Teresa’s work says the story inside the carer’s head matters just as much as physical signs.
Why it matters
Before you book respite or plan transition, ask the carer one quick question: "Who do you believe should be in charge of care?" If the answer is "no one but me," provide extra support and gradual hand-over trials. Shifting this belief can open the door to services that actually get used.
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02At a glance
03Original abstract
BACKGROUND: A complex interplay of factors is evident in the response of family caring for older adults with intellectual disability (ID). The aim of this study was to explore the interaction of these factors. METHODS: Quantitative data on health and wellbeing, and coping strategies were obtained for carers and their adult children with ID. Qualitative data were from three focus groups conducted with 19 main family carers. RESULTS: Carers varied in their health and wellbeing. Four overarching themes emerged from an initial interpretative phenomenological analysis of the qualitative data: loci of responsibility, impacts of caring and responses to it on health and wellbeing, transitioning care responsibilities, and interrelationships around the caring role. Further interrogation of data according to carers' coping strategies revealed three loci of responsibility, providing a point of convergence that related to carer experiences, plans for transition, and relationships within families. These loci of responsibility were having sole responsibility because there was no-one else, having sole responsibility because no-one could do it better, and sharing responsibility. CONCLUSION: The loci of responsibility provide a means to understand carers' appraisal of their role and the degree of control they have over it, and may account for varied coping strategies adopted.
Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2016.07.004