This study examined the impact of social distancing during the COVID-19 pandemic on loneliness, wellbeing, and social activity, including social support, in Scottish older adults. A mixed methods online survey was used to examine these factors during social distancing mid-lockdown, July 2020. Participants were asked to state whether loneliness, wellbeing, social activity, and social support had changed since pre-social distancing, and to provide details of strategies used to keep socially active. A total of 1429 adults (84% aged 60+ years) living in Scotland took part. The majority reported that social distancing regulations made them experience more loneliness and less social contact and support. Loneliness during lockdown was higher than reported norms for this age group before the pandemic. A larger social network, more social contact, and better perceived social support seemed to be protective against loneliness and poor wellbeing. Positive coping strategies reported included increasing online social contact with both existing social networks and reconnecting with previous networks, as well as increasing contact with neighbours and people in the community. This underlines the importance of addressing loneliness and social support in older adults but particularly during situations where risk of isolation is high.
Adults with Down syndrome are at increased risk of dementia at a significantly younger age and remain under-represented as participants in dementia-related research. Because little is known about their personal experiences either immediately postdiagnosis or as dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy this omission, the author examined methodological and ethical challenges identified as part of a research study that included people with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant observation and an adapted narrative research method were used as part of a three-year longitudinal study to help better understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants, the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and practice issues, with a call for both to be recognized and addressed in terms of future policy and practice. First is a lack of awareness of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather than individual preference or need. Second is the lack of information postdiagnosis about dementia being shared with people who have Down syndrome
The author interviewed a small group of practitioners working in intellectual disability and palliative care settings about their perceptions of a number of end-of-life issues related to people with Down syndrome who were affected by dementia. The study, which took place in Scotland, identified a number of issues and perceptions expressed by the subjects as well as gaps in services and practice. Key among the findings were the need for people with Down syndrome to be more involved in planning for their own endof-life care; a lack of communication between those persons working in palliative care and intellectual disability settings; identification of a "care culture clash;" deficits in training programs for staff involving dying, death, and bereavement; and that end-of-life care for people with Down syndrome and dementia is a neglected area of research. The author highlights the lack of uniform practice when working with people with Down syndrome in the end stages of dementia and provides some recommendations for further discourse and research.
The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.
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