Sally Stapley’s research while affiliated with University of Hertfordshire and other places

Understanding how to improve the physical and cognitive accessibility of visitor economy businesses and organisations wanting to offer nature-based outdoor pursuits for people with dementia is key to supporting their inclusion and agency. The aim of this qualitative study was to understand the experiences, needs and preferences of people with dementia participating in nature-based outdoor pursuits in their leisure time. Semi-structured interviews were conducted with 15 people with dementia and 15 family members and subjected to thematic analysis. Four themes related to inclusion for people with dementia and their family members reflected diversity in individual needs and preferences for engaging with nature-based outdoor pursuits, their own adaptations to maintain access including accommodating risk, how cognitive and physical accessibility can be supported by businesses, and which practical and psychosocial barriers prevent inclusion. Learning from people with dementia and their family members has helped bridge the gap to their inclusion in nature-based outdoor pursuits. Their insights will inform the development of such pursuits by businesses and organisations as well as future work into risk decision-making.

We explored carers’ experiences during the COVID-19 pandemic in England to identify long-term impacts and implications, and to suggest future support for caregivers. Data were collected during COVID-19 rapid response studies from carers participating in a British longitudinal cohort study. Semi-structured interview data were compared to accounts from previous interviews conducted during the first 18 months of the pandemic. There was indication of some return to pre-pandemic lifestyles, but without appropriate support, carers risked reaching crisis point. Evidence points to a requirement for assessment and management of support needs to ensure well-being and sustainable dementia caregiving.

Family carers of people with dementia have reported increased caring demands during the COVID-19 pandemic. The aim of this qualitative study is to explore seven family carers’ accounts of dementia caregiving one year into the COVID-19 pandemic in England in relation to carer resilience. Themes describe the complex challenges of caring during the pandemic, with interviewees burned out and ‘caring beyond capacity’ due to unmet needs within the caring role, therein highlighting the limitations of building individual resilience only. Timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.

Background and objectives: People with dementia have been affected in unique ways during the COVID-19 pandemic. It is not known whether the impact of the pandemic has changed with time or with the changes in social restrictions. This study explored how experiences of coping with the effects of the pandemic in the UK changed over time. Research design and methods: We conducted semi-structured interviews with people with dementia living in the community in England and Wales who had taken part in a qualitative interview at an earlier stage of the pandemic. We applied framework analysis to identify themes and compared these with interviewees' previous accounts. Findings: Nine people aged between 51 and 89 years were interviewed; four were female and five had early onset dementia. We identified three themes: 1. Navigating a changing world: Living with coronavirus; 2. A 'downward spiral': Managing advancing dementia; and 3. Availability, accessibility, and suitability of support. Findings reflect participants' ongoing caution about re-emerging from social restrictions to resume valued activities, and how this led to coping behaviours to minimise the impact on wellbeing in the absence of formal support and services. Discussion and implications: Despite easing of restrictions across the UK, the negative impact of the coronavirus pandemic on people with dementia continues. Whilst individuals and services have adapted to some of the challenges, there is now an opportunity to rebuild support networks and services to ensure people with dementia are suitably advised, supported and socially engaged to allow them to live as well as possible.

The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE (Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life Under Physical Distancing on People with Dementia and Carers) component of the IDEAL (Improving the Experience of Dementia and Enhancing Active Life) cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic within the context of the ‘post-vaccine’ period and the national lockdowns in England and Wales; and to determine perceived challenges to and facilitators of ‘living well’ during the COVID-19 pandemic and beyond as restrictions were eased. In addition, the study findings are considered in relation to understandings of identity in dementia which the broader accounts of living through the pandemic have highlighted. Seven people with mild-to-moderate dementia were interviewed and themes were derived using framework analysis. Themes suggest interviewees' stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world. Interviewees managed threats to social identity by striving to maintain social and emotional connections, where the importance of a shared, social identity, particularly for people with young-onset dementia, was also apparent. Unlike in previous studies during the pandemic, the relevance of occupation for identity was observed, where maintaining previous or new activities or occupations was important to facilitate identity as well as to keep a sense of purpose. Therefore, as well as supporting people with dementia as the pandemic eases, future research into occupation and identity in dementia is of potential value.

This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community in England and Wales during a period of social restrictions before the COVID‐19 vaccination roll‐out. We conducted 12 semi‐structured interviews with people with dementia aged 50–88 years, living alone or with a partner, and 10 carers aged 61–78 years, all living with the person with dementia. Three of the interviews were with dyads. Participants were recruited during November and December 2020. We used framework analysis to identify themes and elicit suggestions for potential solutions. We identified three interrelated themes. People with dementia experienced a fear of decline in capabilities or mood and attempted to mitigate this. Carers noticed changes in the person with dementia and increased caring responsibilities, and for some, a change in the relationship. Subsequently, reduced confidence in capabilities to navigate a new and hostile environment created a cyclical dilemma of re‐engaging where an inability to access usual activities made things worse. People with dementia and carers experienced neglect and being alone in their struggle, alongside feeling socially excluded during the pandemic, and there was little optimism associated with the upcoming vaccine programme. People found their own solutions to reduce the effects of isolation by keeping busy and being socially active, and practising skills deemed to help reduce the progression of dementia. This and some limited local public initiatives for the general public facilitated feelings of social inclusion. This study adds understanding to existing evidence about the longer‐term experience of social isolation several months into the pandemic. It highlights the importance of health and community groups and suggests how services can find ways to support, include, and interact with people with dementia and carers during and after social restrictions.

Some carers of people with dementia have reported increased caring demands and carer stress during the COVID-19 pandemic. Carers’ experiences during this time may also have implications for resilience. As part of the INCLUDE component of the IDEAL cohort study, the overall aim of this subtle realist qualitative study was to explore family carer experiences of caring for someone with dementia one year into the COVID-19 pandemic in England, and to consider the study findings in relation to resilience frameworks in dementia caregiving. Seven family carers of people living with mild-to-moderate dementia were interviewed, and themes derived using framework analysis. Themes described the complex challenges of caring during the pandemic, with interviewees burned out and ‘caring beyond capacity’ due to unmet needs within the caring role and caring in isolation from family and professional support. Findings provide evidence that trait resilience approaches fail to account for important aspects of carers’ experiences, highlighting the range of contextual factors which influence experiences of the caregiving role, lending support to transactional resilience frameworks. More importantly than building individual resilience, timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.

This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community during a period of ongoing restrictions before the COVID-19 vaccination roll-out in England and Wales. We conducted semi-structured interviews with 11 people with dementia and 10 carers (including 3 dyads) living in the community in England and Wales. Participants were recruited during November and December 2020. We used framework analysis to identify issues and elicit suggestions for potential solutions. We identified three interrelated themes. People with dementia experienced a fear of decline in capabilities or mood and attempted to mitigate this. Carers were aware of changes in the person with dementia and an increase in caring responsibilities and for some, there was a change in the relationship. Subsequently, reduced confidence in capabilities to navigate a new and hostile environment created a cyclical dilemma of returning to ‘normal’ where not returning to usual activities made things worse. People with dementia and carers had feelings of neglect and being alone in their struggle, alongside feeling socially excluded during the pandemic when comparing themselves to others in society, and there was little optimism associated with the upcoming vaccine programme. People found their own solutions to reduce the effects of isolation by keeping busy and socially active and practising skills deemed to help reduce the progression of dementia. This and some limited local public initiatives for the general public facilitated feelings of social inclusion. This study adds understanding to existing evidence about the longer-term experience of social isolation several months into the pandemic highlighting the importance of health and community groups and how services can find ways to support, include and interact with people with dementia and carers during and after social restrictions.

The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE component of the IDEAL cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic in England and Wales during the post-vaccine time period; also with focus on the study findings in relation to understandings of identity in dementia. Seven people with mild-to-moderate dementia were interviewed, and themes derived using framework analysis. Themes suggest interviewees’ stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world, and loss of social connections. Under threat due to lack of access to dementia groups, the importance of a shared, social identity, particularly for people with young-onset dementia, was apparent. With valued activities also prevented or reinvented during the pandemic, the relevance of occupation for identity is discussed. Although under continued pressure, services must consider how people with dementia and their family caregivers can best be supported during the ongoing pandemic.