People with dementia are not provided with high-quality care at the end of their lives, because the illness is not considered 'terminal', a report by the Alzheimer's Society and Marie Curie Cancer Care has said.
The report, Living and dying with dementia in England: Barriers to care states that the percentage of deaths from dementia and Alzheimer's disease rose from 4.7 per cent to 12.2 per cent for women and from two per cent to 6.2 per cent for men between 2003 and 2013. Approximately 815,827 people in the UK are thought to be living with dementia.
'Dementia is frequently overlooked as being a terminal illness and as a consequence, there are unacceptable failures to prepare and plan for end of life care,' said Jeremy Hughes, chief executive at Alzheimer's Society. 'Despite much attention on dementia in recent years, many people with dementia are not dying where they had hoped; others face meeting the end of their life in pain or without dignity.
The report also emphasised the importance of quality care when treating dementia patients. It stated that 39.6 per cent of dementia patients died in hospitals, but were often inappropriately admitted, which can lead to distress and poor continuity of care for the patient.
'A lot needs to happen to improve care. Improving staff training and awareness is vital in order to help make people's final days as good as they can be. Mapping this journey is difficult but considerations for end-of-life care for people with dementia are essential to meet the needs and dignity of each individual and their loved ones,' Mr Hughes added.
The report identifies three key factors which bar access to adequate care: identification and planning, inequality of access and the quality of care experienced by people with dementia.
The identification and planning section highlights barriers such as the failure to identify dementia as a cause of death. This means it is not recorded on death certificates and therefore not included in official statistics. Another factor in this is the lack of recognition that it is a terminal condition, preventing access to palliative care.
The section detailing inequality of access to hospice and palliative care services highlights the discrimination that younger people with dementia face. An estimated 17,000 people in the UK are living with early onset dementia, it said. The charities suggest there is a distinct lack of specialist services for these patients, who may not be accepted by dementia services targeted at the elderly. One of the report's conclusions is that services must be expanded to allow those with early-onset dementia to access high-quality care. Early-onset dementia is defined as dementia in those under 65.