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.
Kurz
Alexander
A
Munich University of Technology and Science, Munich, Germany.
Schulz
Mary
M
Reed
Peter
P
Wortmann
Marc
M
Rodrigo
Jesús
J
von Lützau Hohlbein
Heike
H
Grossberg
George
G
D000368:Aged; D000544:Alzheimer Disease / Q000188:drug therapy / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D003625:Data Collection; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D010349:Patient Compliance; D011788:Quality of Life