Abstract
Background: Heart failure is increasingly prevalent in the growing elderly population and commonly associated with cognitive impairment. This study compared trends in place of death (PoD) of heart failure patients with / without comorbid dementia over the period of implementation of the Mental Capacity Act (MCA) in October 2007, this legislation supporting patient-centred decision making for those with reduced agency.Methods: Analyses of death certification data for England between January 2001 and December 2018, describing the PoD and sociodemographic characteristics of all people ≥ 65 years registered with heart failure as the underlying cause of death, with / without a mention of comorbid dementia. Multiple Poisson regression modelling was used to determine the prevalence ratio (PR) of dying at home or in care homes compared to dying in hospital. Covariates included year of death, age, gender, marital status, comorbidity burden, index of multiple deprivation and urban / rural settings.Results:120,068 heart failure-related death records were included of which 8199 mentioned dementia as a contributory cause. The overall prevalence of dementia was 6.8%, the trend significantly increasing from 5.6% to 8.0% pre- and post-MCA (p<0.0001). Dementia was coded as unspecified (78.2%), Alzheimer’s disease (13.5%) and vascular (8.3%). Those with dementia were more commonly older, female, widowed, and had more comorbidities. Pre-MCA, PoD for heart failure patients without dementia was hospital 68.2%, care homes 20.2%, 10.7% dying at home. The corresponding figures for those with comorbid dementia were 47.6%, 48.0% and 4.2%, respectively. Following MCA enforcement, PoD for those without dementia shifted from hospital to home, PR: 1.026 [95%CI: 1.024-1.029]. This trend was not significant for those with dementia, PR: 1.001 [0.988-1.015], hospital deaths increasing. Care home deaths reduced for all, with or without dementia, PR: 0.959 [0.949-0.969], and PR: 0.996 [0.993-0.998], respectively. Hospice as PoD was rare for both groups (≤0.5%) with no appreciable change over the study period.Conclusions: Our analyses suggest the MCA did not materially affect the PoD of heart failure decedents with comorbid dementia, likely reflecting difficulties implementing this legislation in real-life clinical practice.