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Abstract
BackgroundThe impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them.MethodsWe recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis.ResultsPeople living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement.ConclusionsStructuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.
Highlights
There are an estimated 50 million people living with dementia globally, and this is expected to increase to over 152 million by 2050 [1]
Awareness of restrictions People living with dementia discussed the restrictions imposed due to COVID-19, such as the lockdown or social distancing, and most showed some awareness and understanding of them in general terms
Restructuring caring relationships to manage COVID-19 risk People living with dementia and their carers both acknowledged the risks regarding COVID-19 and the subsequent adjustments many made to address this
Summary
There are an estimated 50 million people living with dementia globally, and this is expected to increase to over 152 million by 2050 [1]. Most people living with dementia were included in the age-related risk group, dementia itself was not listed as an increased risk factor for COVID-19 at the time [5]. Subsequent findings that having a diagnosis of dementia is the largest independent risk factor for hospitalisation due to COVID-19 for adults over the age of 65 [6], should encourage a more disease targeted approach to protecting those at increased risk in any future outbreaks. The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them
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