People with young-onset dementia and their families experience distinctive impacts of the COVID-19 pandemic and associated restrictions

Evidence is emerging to describe the impacts of the COVID-19 pandemic and associated restrictions for older people with dementia, who are at high risk of contracting the virus (Hariyanto et al., 2021) and experience rapid worsening of behavioral and psychological symptoms (Cagnin et al., 2020). People with dementia report reduced psychological wellbeing and increased anxiety associated with COVID-related social service closures (Giebel et al., 2021). Family members of people with dementia have reported increased levels of stress and caregiving load during lockdown measures (Cohen et al., 2020), especially where they reported anxiety about the virus itself (Savla et al., 2020) and where they withdrew from support services for the safety of the person with dementia (Giebel et al., 2020). Research has yet to specifically examine the COVID-related experiences of thosewith young-onset dementia (YOD) (with symptom onset prior to 65 years), which represents 8% of all dementias and 5 million cases in theUS, 42,000 in theUK, and 27,000 in Australia (Brown et al., 2017). People with YOD report higher rates of distress and carer burden than their older counterparts, partly related to their higher financial, familial, and occupational responsibilities (Cations et al., 2017; Ryan et al., 2021). In Australia, YOD care is funded and delivered in the disability system (rather than aged care). People with YOD and their families may therefore have distinct experiences with COVID-19 and support needs that require a tailored response. We invited Australians living with YOD or providing informal care to a person with YOD to complete a cross-sectional, mixed-methods survey about how the COVID-19 pandemic and associated restrictions have impacted their care. Participants were diagnosed with YOD or currently providing informal support to a person with YOD and were re-contacted after participating in an earlier survey study (Cations et al., 2021). Surveys were completed in May–June 2020, 3 months after the first recorded Australian case of COVID-19. Strict lockdown restrictions, including the closure of non-essential services, were gradually being eased across the country (Lupton, 2020). The survey was granted ethical approval by the Flinders University Social and Behavioural Research Ethics Committee (Project 8331). Participants were 12 people living with YOD and 41 unpaid carers of a person with YOD. Most respondents (or those they care for) were diagnosed with Alzheimer’s disease (n=29) or frontotemporal dementia (n=11), withmedian onset age of 56 years. Twenty-five percent of informal carers provided care for a person living in residential care. Quantitative data were summarised using descriptive statistics (e.g. means and percentages), and openended qualitative responses were transcribed verbatim and examined for themes using a thematic analysis approach with open coding to generate themes (Cavanagh, 1997). Particular attention was paid to data indicating unique impacts for young people with dementia (i.e. those that may be less relevant for older people with dementia or those without dementia). Illustrative quotations are included here as representative examples of the themes identified. Most participants reported that the pandemic negatively impacted on their care in some way (Table 1). Many reported similar barriers to service access as have been reported by older people with dementia (Giebel et al., 2021), including service shutdowns and restrictions on visitation to residential care. However responses weremarked by a sense of urgency about access to physical and social activity for maintaining otherwise good physical health. As one survey respondent living with YOD noted, “My body is healthy and regular social interaction helps to regulate my symptoms, so lack of contact is making things terrible for me. ” Many noted difficulties managing the behavioral and psychological responses to the stress, isolation, and boredom caused by COVID-19 restrictions, especially for those with frontotemporal dementias. Carers noted that their already high caring responsibilities for the person with YOD, young children, and sometimes also aging parents were each simultaneously increased by the pandemic. Carers with young children affected by school closures were faced with what one described as “an excruciating caring load” with little opportunity for respite. Residual impacts of working from home, losing work, and/or interrupting work to suit strict facility visitation times were noted to reduce tolerance and empathy such that the quality of care was negatively affected. International Psychogeriatrics: page 1 of 3 © International Psychogeriatric Association 2021