Personal perspectives of persons with Alzheimer's disease and their carers: a global survey.

Background: Alzheimer's disease (AD) impacts on persons with AD as well their families. This survey aimed to identify information/communication gaps, and quality of life and other issues, from both perspectives.

Methods: Persons with AD and their families or other carers from Europe, Brazil, and North America completed telephone interviews. Responses were analyzed by country.

Results: Five hundred two persons with AD and 614 carers were included. Issues important to persons with AD were treatment that helps control symptoms; feeling safe and supported at home; and ability to enjoy life. Most felt well-respected by family members. Families/carers considered a wider range of issues important, including detailed information about AD, regimens that are easier to comply with, and medication in a form that is easier to take. This reflects the fact that carers very often manage medications.

Conclusions: This is the first global survey to include persons with AD themselves. Differences between responses from persons with AD and their caregivers highlight the importance of considering both viewpoints.