The unacceptable reality of care for people living with dementia

Abstract

For the first time, dementia has overtaken ischaemic heart disease as the leading cause of death in England and Wales, according to new figures from the Office for National Statistics. Almost 62 000—11·6% of all deaths—were due to dementia in 2015, and the mortality rate has more than doubled since 2010. The causes for this change include an ageing population, improved recognition, diagnosis, and reporting, but also treatment and prevention successes for other diseases. These figures also mean that an increasing number of people will live with dementia. Worldwide, it is estimated that 48 million people live with dementia with an expected rise to 131 million by 2050. Although there have been several high-profile national efforts to accelerate research into treatments for dementia—so far with little success—people-centred, competent, and compassionate support and care for people living with dementia is what is really needed now. Survey findings, released by the UK-based charity Alzheimer's Society on Nov 16, paint a shocking picture about the quality of home care for people with dementia. Some people were going without food or water for extended times, left to sleep in wet beds and soiled clothing, were not given baths or showers for weeks, and were spoken to in unacceptable ways or not spoken to at all. There are about 520 000 home-care workers; 38% have no dementia training and of 43% who asked for training, more than 50% were turned down. Many countries are struggling with the increasing need for caring for the elderly with dementia. The best care is usually funded privately and out of reach for most. In Canada, one of two G7 countries without a national dementia strategy (Germany being the other), the Standing Senate Committee on Social Affairs, Science and Technology has just released a new report—Dementia in Canada: A National Strategy for Dementia-friendly Communities—with 29 recommendations. Strategies, however, are not enough. Dementia care is demanding and needs to be individualised, compassionate, and integrated into community efforts. An urgent first step in the UK is a dedicated, educated, adequately financed, and well respected home-care workforce.