International Psychogeriatrics

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

Lori Frank a1c1, Andrew Lloyd a1, Jennifer A. Flynn a2, Leah Kleinman a1, Louis S. Matza a1, Mary Kay Margolis a1, Lee Bowman a2 and Roger Bullock a3
a1 The MEDTAP Institute at UBC, Bethesda, MD, U.S.A.
a2 Eli Lilly and Company, Indianapolis, IN, U.S.A.
a3 Kingshill Research Centre, Victoria Hospital, Swindon, U.K.

Article author query
frank l   [PubMed][Google Scholar] 
lloyd a   [PubMed][Google Scholar] 
flynn ja   [PubMed][Google Scholar] 
kleinman l   [PubMed][Google Scholar] 
matza ls   [PubMed][Google Scholar] 
margolis mk   [PubMed][Google Scholar] 
bowman l   [PubMed][Google Scholar] 
bullock r   [PubMed][Google Scholar] 


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.

(Received January 4 2005)
(returned for revision February 21 2005)
(revised version received April 22 2005)
(Accepted April 27 2005)
(Published Online January 11 2006)

Key Words: caregiver burden; patient burden; qualitative analysis; informants for patients.

c1 Correspondence should be addressed to: Lori Frank, Center for Health Outcomes Research, The MEDTAP Institute at UBC, 7101 Wisconsin Avenue, Suite 600, Bethesda, MD 20814, U.S.A. Phone: +1 301 986 6762; Fax: +1 301 654 9864. Email: