Accuracy of death certification of dementia in population-based samples of older people: analysis over time.

BACKGROUND: death certification data are routinely collected in most developed countries. Coded causes of death are a readily accessible source and have the potential advantage of providing complete follow-up, but with limitations. OBJECTIVE: to investigate the reliability of using death certificates for surveillance of dementia, the time trend of recording dementia on death certificates and predictive factors of recording of dementia. SUBJECTS: individuals aged 65 and over in six areas across England and Wales were randomly selected for the Medical Research Council Cognitive Function and Ageing Study (CFAS) and CFAS II with mortality follow-up. METHODS: prevalence of dementia recorded on death certificates were calculated by year. Reporting of dementia on death certificates compared with the study diagnosis of dementia, with sensitivity, specificity and Cohen's κ were estimated. Multivariable logistic regression models explored the impact of potential factors on the reporting of dementia on the death certificate. RESULTS: the overall unadjusted prevalence of dementia on death certificates rose from 5.3% to 25.9% over the last 26 years. Dementia reported on death certificates was poor with sensitivity 21.0% in earlier cohort CFAS, but it had increased to 45.2% in CFAS II. Dementia was more likely to be recorded on death certificates in individuals with severe dementia, or those living in an institution, yet less likely reported if individuals died in hospital. CONCLUSION: recording dementia on death certificate has improved significantly in the England and Wales. However, such information is still an underestimate and should be used alongside epidemiological estimations.

Dying comfortably in very old age with or without dementia in different care settings - a representative "older old" population study.

BACKGROUND: Comfort is frequently ranked important for a good death. Although rising numbers of people are dying in very old age, many with dementia, little is known about symptom control for "older old" people or whether care in different settings enables them to die comfortably. This study aims to examine, in a population-representative sample, associations between factors potentially related to reported comfort during very old people's final illness: physical and cognitive disability, place of care and transitions in their final illness, and place of death. METHODS: Retrospective analyses linked three data sources for n = 180 deceased study participants (68% women) aged 79-107 in a representative population-based UK study, the Cambridge City over-75s Cohort (CC75C): i) prospective in-vivo dementia diagnoses and cognitive assessments, ii) certified place of death records, iii) data from interviews with relatives/close carers including symptoms and "How comfortable was he/she in his/her final illness?" RESULTS: In the last year of life 83% were disabled in basic activities, 37% had moderate/severe dementia and 45% minimal/mild dementia or cognitive impairment. Regardless of dementia/cognitive status, three-quarters died following a final illness lasting a week or longer. 37%, 44%, 13% and 7% of the deceased were described as having been "very comfortable", "comfortable", "fairly comfortable" or "uncomfortable" respectively during their final illness, but reported symptoms were common: distress, pain, depression and delirium or confusion each affected 40-50%. For only 10% were no symptoms reported. There were ≥4-fold increased odds of dying comfortably associated with being in a care home during the final illness, dying in a care home, and with staying in place (dying at what death certificates record as "usual address"), whether home or care home, compared with hospital, but no significant association with disability or dementia/cognitive status, regardless of adjustment. CONCLUSIONS: These findings are consistent with reports that care homes can provide care akin to hospice for the very old and support an approach of supporting residents to stay in their care home or own home if possible. Findings on reported high prevalence of multiple symptoms can inform policy and training to improve older old people's end-of-life care in all settings.