The Cicely Saunders Institute is a WHO Collaborating Centre for Palliative Care and Older People.
Living and dying in extreme old age – a qualitative and quantitative study
By Morag Farquhar - In collaboration with Department of Public Health & Primary Care, University of Cambridge
The fastest growing section of the population is the "oldest old" and this trend is forecast to continue, but little research to date has focused on the needs, attitudes or the experience of this group. As preventive healthcare reduces disease-related death at a younger age, more people can expect to die eventually in old age, but data are scarce on the patterns of decline due to age-related causes of death. Disability, frailty and dementia are all increasingly common in advanced old age, and there is evidence of steeper cognitive decline preceding death.
This study aims to gain a fuller understanding of what it means to live so long and die so old. The long-running study of ageing, the Cambridge City over-75s Cohort, provides a unique opportunity to explore these issues by re-interviewing the survivors (now all aged 94-100), their family and other carers. The research will both take account of personal experiences, attitudes and preferences using qualitative methods, and quantify patterns of health, cognition, social networks and service support at the end of life, building on 20 years’ quantitative data.
This research is much needed for planning social and health care at the end of life for our ageing population. This BUPA Foundation funded study consists of three linked projects to examine living and dying in extreme old age within the framework of an on-going longitudinal observational study, the Cambridge City over-75s Cohort (baseline n=2609). King’s is a co-applicant on this phase of the study, providing expertise in qualitative methods, interviewing older people and quality of life measurement.
- Project 1 - A follow-up survey (Year 20) of a population-based study of ageing: Re-interviewing the survivors (n~60), now all aged 94-100, over half with moderate/severe cognitive impairment, will complete a rare collection of 20 years’ data on cognition, function, health, social networks and service use of the very old. Interviews with carers (n~60) will supplement this quantitative data. Both respondent and informant interviews will also, for the first time with this age-group, provide important qualitative information on attitudes and preferences concerning living to be so old and end-of-life care.
- Project 2 - Interviews with deceased participants’ close informants: (n~50) about any functional/cognitive changes, terminal illness and perceptions of support needed and provided for older people and their carers.
- Project 3 - New analyses of the existing datasets:
from respondents last interviewed <1year before dying aged over 90 (n=135)
This cohort provides a unique opportunity to explore quality of life and supportive end-of-life care in advanced old age by combining prospective and retrospective methods using both first-hand and proxy accounts. The research has important policy and resource-use implications.