Medical-ethical guidelines: Care and treatment of people with dementia.

The number of people with dementia in Switzerland is currently around 150,000. The prevalence of this condition rises steeply after the age of 65. As a result of demographic changes, the number of people affected in Switzerland is thus expected to increase markedly over the coming decades. The course of dementia – which frequently occurs in combination with chronic somatic and/or mental disorders (multimorbidity) – is often protracted and is difficult to predict. Cognitive impairments mean that self-determination and alleviation of symptoms are more difficult to achieve in everyday practice. People with severe dementia generally lack capacity, and decisions then have to be made by representatives on the basis of the patient’s previously expressed or presumed wishes. The management and care of patients may be complicated by disease-related behavioural disturbances. The public, as well as the individuals affected, are fearful of the loss of independence and possible changes in personality associated with progressive dementia; in addition, people are often afraid of becoming a burden on their relatives or society. Against this background, difficult decisions and significant ethical conflicts are not unusual – all the more so since life with dementia runs counter to guiding values, such as independence, productivity and rationality, which are central to our society. The aim of these guidelines is to offer practical guidance for dealing with ethical conflict situations relating to the care and treatment of people with dementia. Specific issues are addressed which may ultimately arise for all those involved in dementia care, irrespective of the setting (domestic, hospital, residential) and professional group. Which of these ethical issues is the most salient will depend largely on the stage of the condition. Once the condition has been diagnosed, management should be based on the principles that are also applicable, for example, in palliative care: a focus on quality of life, equality of care, interprofessional collaboration and continuity, open and appropriate communication, support for decision-making processes, anticipation, a multidimensional approach, and involvement of those close to the patient. These guidelines were prepared in cooperation with the Swiss Society of Gerontology (SGG SSG) as part of the National Dementia Strategy 2014–2019 (subproject 5.1: “Establishment of ethical guidelines”).