Difficult diagnoses: Family caregivers' experiences during and following the diagnostic process for dementia

Allison K. Gibson, Keith A. Anderson

Research output: Contribution to journalArticlepeer-review

15 Scopus citations


Diagnosing Alzheimer's disease and related dementias (ADRD) and adequately connecting families with information and supportive services continue to be challenging processes. Definitive diagnoses can take months and there is often little in place to systematically link families with community organizations. In this brief descriptive study, the researchers examined family caregivers' (N = 106) experiences with these processes. While specialists and sophisticated tests were often used, 58% of caregivers reported that a definitive diagnosis still took 3 months or longer, with 12% waiting more than 1 year. Caregivers also indicated that they were not provided with adequate information about the disease or about community resources both at the time of diagnosis and 1-year following the diagnosis. These findings suggest that there is ample opportunity to improve services offered to families affected by ADRD and that additional training, coordination, and cooperation may enhance our ability to help during and following the diagnosis.

Original languageEnglish
Pages (from-to)212-217
Number of pages6
JournalAmerican Journal of Alzheimer's Disease and other Dementias
Issue number3
StatePublished - May 2011

Bibliographical note

Copyright 2018 Elsevier B.V., All rights reserved.


  • Alzheimer's disease
  • dementia
  • diagnosis
  • family caregivers

ASJC Scopus subject areas

  • General Neuroscience
  • Clinical Psychology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health


Dive into the research topics of 'Difficult diagnoses: Family caregivers' experiences during and following the diagnostic process for dementia'. Together they form a unique fingerprint.

Cite this