Abstract

BackgroundThe COVID‐19 public health crisis and introduction of strict regulations have presented new challenges for people with Down syndrome (DS) and dementia in the UK. Social and cognitive deprivation together with poor mental health are risk factors for dementia. This study aimed to explore the impact of lockdown on well‐being in a population with DS who are already at high‐risk for developing dementia.Method98 individuals with DS were interviewed over the phone about how COVID‐19 and restrictions have affected their daily life, mental and physical health as well as attitude to participating in research. 50 interviews were conducted for younger adults (YA) aged 18‐35 and 48 with older adults (OA) aged 36+ and basic statistics were calculated.ResultSince the start of the pandemic, two participants have been diagnosed with dementia and three are under investigation for dementia. Five were diagnosed with dementia prior to the pandemic, three of whom have experienced symptoms worsening. A third of the total cohort reported worsening of general health, although not directly caused by a COVID infection. 44% of YA and 32% of OA reported a negative psychological impact, while almost all experienced a significant change in their daily activities with only 47% returning to their physical or social activities at the end of the initial lockdown. Regarding outlook on research participation, over 80% of individuals stated they would still be happy to participate in research in person and 75% would also find research conducted over video call to be a feasible option.ConclusionThe pandemic has had a negative impact on physical and mental health of a large proportion of individuals with DS which in turn may potentially affect dementia risk in this already vulnerable group. Although no causal relationship can be established from this study, the aforementioned worsening in health may have partially resulted from the social isolation, reduced physical and cognitive stimulation recorded in this cohort.

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