Wellbeing of family carers of adults with intellectual disabilities during the COVID‐19 pandemic in the UK: longitudinal study

Background

Longitudinal studies of family carers of people with intellectual disabilities during the COVID-19 pandemic have been very rare. This study investigated trajectories of family-carer wellbeing and the impact of the caring role on carers' health over four time points measured during the COVID-19 pandemic and after all public health restrictions had been lifted (between December 2020 and late 2022) across the United Kingdom.

Methods

Family carers of adults with intellectual disabilities participated through a co-designed, online survey at four time points across the pandemic (2020–2022). Growth models were used to determine the change in family-carer wellbeing (n = 312) and the impact of the caring role on carers' health across the pandemic and what factors were associated with these outcomes. We explored associations between profound and multiple intellectual disabilities (PMID), the cared-for person's individual wellbeing, the cared-for person's age, whether the cared-for person lived with their family and family-carer wellbeing and impact of caring trajectories.

Results

Overall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period. If the cared-for person had PMID was associated with greater degrees of depression and stress for caregivers and thus increased the impact of the caring role on carers' health, but it was not associated with carer wellbeing. Similarly, the reduction in individual wellbeing of the cared-for person and the caregiver's perception of this person's wellbeing was also significantly associated with increased impact of the caring role on carers' health and carer wellbeing. There was no evidence that age of cared-for person was predictive of either outcome, and there were mixed findings on whether living at home was an associated factor for either outcome.

Conclusions

Overall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period, but the cared-for persons' poorer wellbeing and complex needs (indexed by the presence of PMID) were associated with negative impacts on family carers during the pandemic period.