Background:Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care.Aims:To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia.Design:9-month prospective cohort study.Setting and participants:Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes.Main outcome measures:At study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale).Results:Of 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had ‘do not resuscitate’ statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common.Conclusion:People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.

The routes to psychiatric services for first onset patients are different to those for chronic patients. Variables associated with social support were more important than ethnicity in determining pathways to care. Police involvement and compulsory admissions were strongly associated with the absence of GP involvement and the absence of help-seeking by a friend or relative. It may be that ethnicity becomes an important variable after the patient has come into contact with psychiatric services.

For improved care in the community patients and their relatives need to be seen as partners in care rather than as passive recipients. The issue of information-giving by psychiatric services demands serious attention. Black patients and their relatives were not especially likely to be dissatisfied.

The nature and outcome of psychotic illness is similar in all ethnic groups but Black people experience more adverse contacts with services later in the course of illness.

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