Alzheimer's & Dementia: The Journal of the Alzheimer's Association
Volume 4, Issue 5 , Pages 345-352, September 2008

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

  • Alexander Kurz

      Affiliations

    • Munich University of Technology and Science, Munich, Germany
    • ,
  • Mary Schulz

      Affiliations

    • Alzheimer Society of Canada, Toronto, Ontario, Canada
    • ,
  • Peter Reed

      Affiliations

    • Alzheimer's Association, Chicago, IL, USA
    • ,
  • Marc Wortmann

      Affiliations

    • Alzheimer's Disease International, London, UK
    • Corresponding Author InformationCorresponding author. Tel.: 44-20-7981-0880; Fax: 44-20-7928-2357
    • ,
  • Jesús Rodrigo

      Affiliations

    • La Confederación Española de Familiares de Enfermos de Alzheimer y otras Demencias, Pamplona, Spain
    • ,
  • Heike von Lützau Hohlbein

      Affiliations

    • Deutsche Alzheimer Gesellschaft, Berlin, Germany
    • ,
  • George Grossberg

      Affiliations

    • St Louis University School of Medicine, St Louis, MO, USA

Abstract 

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.

Keywords: Alzheimer's disease, Carers, Patients, Quality of life, Survey

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PII: S1552-5260(08)02836-7

doi:10.1016/j.jalz.2008.06.002

Alzheimer's & Dementia: The Journal of the Alzheimer's Association
Volume 4, Issue 5 , Pages 345-352, September 2008

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