Attitudes Towards Changing Care Needs and Experiences of Social Care for People Aged 95 years and Older Living At Home: A Population-Based Study

Abstract Background: The ‘oldest old’ are amongst the largest recipients of social care services and informal care, yet they are under-represented in research and service-user experience surveys. The aim of this study was to understand experiences of receiving social care from formal services and informal carers amongst very old people living in the community. Method: Framework analysis of qualitative data from 36 interviews with community-dwelling people aged 95-101 (n=24) and/or their relatives/carers participating in the UK population-based Cambridge City over-75s Cohort (CC75C) study. Results: Fifty-eight percent lived alone, 75% were disabled, and 42% moderately or severely cognitively impaired. Sixty-seven percent had contact with formal care services and 85% with relatives at least weekly. Informal care mainly supported instrumental activities of daily living, though substituted for, and complemented, formal care at low and higher disability levels respectively. Impractical service delivery and lack of awareness of social care processes and entitlements caused unnecessary distress. Lack of meaningful social interaction, difficulties with bathing and management of continence were key areas of unmet need. Poor continuity of service and frequent changes of formal carers posed a threat to older people’s autonomy, dignity and safety. Conclusions: This study revealed a rich complexity of older old care recipients’ responses and attitudes not adequately captured in national surveys. As the urgent need to review social care provision receives more attention, there are valuable opportunities to incorporate the views of older old people into service design and delivery, honouring policy directives for person-centred care and improved quality of life.