The impact of COVID-19 on family carers of people with profound and multiple learning disabilities

The UK and Ireland’s restrictions to contain the spread of COVID-19 have undoubtedly impacted on the lives of vulnerable populations. The arrival of a vaccine, while providing hope to caregivers, does not alter the detrimental impact of the pandemic on their lives. Research is urgently needed to provide future support to family carers who were already experiencing heightened stress and daily challenges as they cared for an individual with PMLD.   
During COVID-19 family carers have been placed under further stress due to increased care demands, additional anxieties, practical difficulties created by the pandemic, and diminished support. Whilst caregiver stress is often lessened through social support, the reduction of social support during lockdown may be particularly severe for family carers of people with PMLD because their access to professional support and services such as respite care will be significantly diminished.

Findings from a number of online surveys are now available which demonstrate higher levels of mental health problems, including severe anxiety, stress symptoms and depression among carers of people with learning disabilities. However, these studies do not give a complete picture of the lives of family carers which mean that we now need to explore their experiences of COVID-19 to suggest how they may be supported after the pandemic. All people with PMLD have high support needs and require 24-hour-a-day care. During the restrictions, families would have been under increased pressures to continue caring for their family member with PMLD with limited support. It is critical to recognise the impact of COVID-19 on family carers and document their lived experiences to determine how they could be better supported in the future. This work will allow for recommendations on the reconfiguration of services or other supports to enable the provision of more targeted and effective care. 

What we will do
This study aims to explore the experiences of family carers of people with PMLD and voluntary sector organisations (across the UK and Ireland) during the pandemic and suggest possible mechanisms of future support. 

This will involve establishing a co-design group of stakeholders with experience of PMLD during the pandemic who will help to develop a support programme.

We will test the acceptability of the programme among family carers and aim to implement the programme for use across the UK and Ireland. 

This is a collaborative project with researchers from the Scottish Learning Disabilities Observatory, Queen's University Belfast, the University of South Wales, the University of Sheffield and Trinity College Dublin, For more information about this project as it develops, please contact 

This page was last updated on 12th March 2021.