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

Alexander Kurz, Mary Schulz, Peter Reed, Marc Wortmann, Jesús Rodrigo, Heike von Lützau Hohlbein, George Grossberg

Research output: Contribution to journalArticle

11 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)345-352
Number of pages8
JournalAlzheimer's and Dementia
Volume4
Issue number5
DOIs
StatePublished - Sep 2008
Externally publishedYes

Keywords

  • Alzheimer's disease
  • Carers
  • Patients
  • Quality of life
  • Survey

ASJC Scopus subject areas

  • Health Policy
  • Epidemiology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health
  • Cellular and Molecular Neuroscience
  • Developmental Neuroscience
  • Clinical Neurology

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  • Cite this

    Kurz, A., Schulz, M., Reed, P., Wortmann, M., Rodrigo, J., von Lützau Hohlbein, H., & Grossberg, G. (2008). Personal perspectives of persons with Alzheimer's disease and their carers: A global survey. Alzheimer's and Dementia, 4(5), 345-352. https://doi.org/10.1016/j.jalz.2008.06.002