Safeguarding concerns, practices, and resources in COVID-19 mutual aid groups

Community mutual aid groups that sprang up during the COVID-19 pandemic were characterized by a lack of formal regulation and therefore potential issues around safeguarding. In this study, eight organizers of COVID mutual aid groups in the UK describe their group’s concerns, and existing safeguarding resources, and resources they would find useful in the future. Groups often created their own policies, training, reference materials, and safeguarding roles as a way of implementing safeguarding measures. Interviewees expressed three types of concerns around safeguarding: protection from harm (of both volunteers and members of the public), retaining the character of mutual aid, and making appropriate referrals. Solutions suggested by interviewees included educational materials, training, funding, consultation, a signposting database, and a forum for COVID mutual aid groups. Some of these needs could be provided by developing relationships with formal community groups. We suggest some of the mechanisms whereby informal community support groups can retain their grassroots identity and yet protect the health, wellbeing, and rights of volunteers and those they work with.</p

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers

Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic. Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.</p

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers

Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic. Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.</p