Inequalities in dementia care across Europe: key findings of the Facing Dementia Survey.

ABSTRACT

The Facing Dementia Survey was undertaken to assess the awareness of and behaviours surrounding Alzheimer's disease (AD) and dementia among all key stakeholders in Europe. Interviews were conducted with more than 2500 persons, including caregivers, members of the general population, physicians, persons with AD and influencers of health care policy. Four key messages emerged from the results. First, AD often remains undiagnosed until symptoms become moderate or severe. This delay may be because of the difficulty of recognising the symptoms of early AD and the attribution of symptoms to so-called normal ageing, the fear of AD common among older people, inadequate screening tools for use by physicians and/or a delay in the confirmation of the diagnosis once suspicion is raised. Second, a majority of respondents perceive their governments as indifferent to the economic, social and treatment burdens associated with AD. Third, a substantial majority of caregivers, physicians and the general population appreciate the wide-ranging impact that AD can have on the quality of life of people who suffer from it and their informal caregivers. While most caregivers reported life-changing negative effects, a few also noted some positive aspects to their experience. Finally, survey results revealed that most caregivers and members of the general public do not have sufficient information about the benefits of treatment and care. The findings of the Facing Dementia Survey support the development of an agenda for change in dementia care across Europe.