Implications of the Facing Dementia Survey for the general population, patients and caregivers across Europe: Implications for Populations, Patients and Caregivers

Abstract

The Facing Dementia Survey included interviews with approximately 1200 members of the general public, 600 persons who served as primary caregivers for a person with Alzheimer's disease (AD) and 96 persons with AD. Members of the general public and the caregivers indicated level of agreement on a 5-point scale to a series of attitudinal statements about the disease as well as other diagnostic questions. Persons with AD underwent a qualitative interview. Results indicate that Europeans are acutely aware of the potentially devastating consequences of AD, but few are familiar with the early-stage symptoms. Most members of the general population accept that early intervention and therapy are key to slowing the effects of the disease. Caregivers often delayed consulting a physician about a loved one's behaviour, partly because of uncertainty about early signs of AD. They also expressed doubt about the ability of physicians to make the diagnosis. Caregivers experience profound effects of AD in every area of their life--emotional, physical, social and financial. Persons with AD responded to their diagnosis in one of three ways: a fatalistic attitude, a belief that their problems are linked to old age or a lack of acceptance. Survey respondents from three populations were critical of the level of government investment in and support of AD.