The experience of dying with dementia: a retrospective study

To describe the last year of life of people with dementia, their symptoms, care needs, use of and satisfaction with health services and the bereavement state of the respondent.

The study is drawn from the Regional Study of Care for the Dying, a retrospective sample survey of the carers, family members or others who knew about the last year of life of a random sample of people age 15 and over dying in the last quarter of 1990. The samples were drawn in 20 English health districts which, although self-selected, were nationally representative. There was a total of 3696 patients (response rate of 69%) dying from all causes. Within this sample, 170 dementia patients were identified and compared with 1513 cancer patients.

The symptoms most commonly reported in the last year were mental confusion (83%), urinary incontinence (72%), pain (64%), low mood (61%), constipation (59%) and loss of appetite (57%). Dementia patients saw their GP less often than cancer patients and their respondents rated GP assistance less highly. Dementia patients needed more help at home compared with cancer patients, and received more social services; 78% of respondents for dementia patients and 64% for cancer said they had come to terms with the patient's death.

Patients dying from dementia have symptoms and health care needs comparable with cancer patients. Greater attention should be given to these needs.