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Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants

Published online by Cambridge University Press:  11 January 2006

Lori Frank ,
Andrew Lloyd ,
Jennifer A. Flynn ,
Leah Kleinman ,
Louis S. Matza ,
Mary Kay Margolis ,
Lee Bowman  and
Roger Bullock
Lori Frank
Affiliation:
The MEDTAP Institute at UBC, Bethesda, MD, U.S.A.
Andrew Lloyd
Affiliation:
The MEDTAP Institute at UBC, Bethesda, MD, U.S.A.
Jennifer A. Flynn
Affiliation:
Eli Lilly and Company, Indianapolis, IN, U.S.A.
Leah Kleinman
Affiliation:
The MEDTAP Institute at UBC, Bethesda, MD, U.S.A.
Louis S. Matza
Affiliation:
The MEDTAP Institute at UBC, Bethesda, MD, U.S.A.
Mary Kay Margolis
Affiliation:
The MEDTAP Institute at UBC, Bethesda, MD, U.S.A.
Lee Bowman
Affiliation:
Eli Lilly and Company, Indianapolis, IN, U.S.A.
Roger Bullock
Affiliation:
Kingshill Research Centre, Victoria Hospital, Swindon, U.K.
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Abstract

Background: The aim of this study was to identify key aspects of the impact of cognitive impairment on patients with mild cognitive impairment (MCI) and mild probable Alzheimer disease (AD) and their informants, and identify overlap and differences between the groups.

Methods: Structured focus group discussions were conducted with MCI patients, AD patients, MCI informants, and AD informants. Participants were recruited from memory clinics in the U.K. and the U.S.A. A total of 20 AD and 20 MCI patients and 16 AD and 11 MCI informants participated. Sessions were content reviewed to identify key impacts of cognitive impairment; results were compared across diagnostic groups and for patients and informants.

Results: Seven key themes emerged: uncertainty of diagnosis, skill loss, change in social and family roles, embarrassment and shame, emotionality, insight, and burden. Patients were able to discuss the impact of cognitive impairment on their lives and reported frustration with recognized memory problems, diminished self-confidence, fear of embarrassment, concerns about changing family roles due to cognitive impairment, and anxiety. Informants reported more symptoms and more impairment than did patients and indicated increased dependence on others among patients.

Conclusion: MCI and mild AD exert substantial burden on patients' lives and the lives of those close to them.

Keywords

caregiver burdenpatient burdenqualitative analysisinformants for patients
Type
Research Article
Information
International Psychogeriatrics , Volume 18 , Issue 1 , March 2006 , pp. 151 - 162
Copyright
© International Psychogeriatric Association 2006

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