Skip to main content
PMC home page
American Journal of Alzheimer's Disease and Other Dementias logoLink to American Journal of Alzheimer's Disease and Other Dementias
. 2011 May;26(3):212–217. doi: 10.1177/1533317511400306

Difficult Diagnoses: Family Caregivers’ Experiences During and Following the Diagnostic Process for Dementia

Allison K Gibson 1, Keith A Anderson 2
PMCID: PMC10845443  PMID: 21362754

Abstract

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.

Keywords: Alzheimer’s disease, dementia, diagnosis, family caregivers

Full Text

The Full Text of this article is available as a PDF (120.1 KB).

Contributor Information

Allison K. Gibson, The Ohio State University, Columbus, OH, USA.

Keith A. Anderson, The Ohio State University, Columbus, OH, USA, gibson.422@buckeyemail.osu.edu .

References

  1. Boise L., Camicioli R., Morgan D., Rose JH, Congleton L. Diagnosing dementia: perspectives of primary care physicians. Gerontologist. 1999;39(4):457-464. [DOI] [PubMed] [Google Scholar]
  2. Laakkonen ML , Raivio MM, Eloniemi-Sulkava U., et al. How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care? J Med Ethics. 2008;34(6):427-430. [DOI] [PubMed] [Google Scholar]
  3. Cody M., Beck C., Shue VM, Pope S. Reported practices of primary care physicians in the diagnosis and management of dementia. Aging Ment Health. 2002;6(1):72-76. [DOI] [PubMed] [Google Scholar]
  4. Fortinsky RH , Leighton A., Wasson JH Primary care physicians’ diagnostic, management, and referral practices for older persons and families affected by dementia. Res Aging. 1995;17(2):124-148. [Google Scholar]
  5. Iliffe S., Manthorpe J. Dementia in the community: challenges for primary care development . Rev Clin Gerontol. 2002;12(3):243-252. [Google Scholar]
  6. National Institute on Aging. Alzheimer’s disease education and referral center diagnosis . http://www.nia.nih.gov/Alzheimers/AlzheimersInformation/Diagnosis/ . Accessed August 1, 2009. [Google Scholar]
  7. Teel CS Rural practitioners’ experience in dementia diagnosis and treatment . Aging & Ment Health. 2004;8(5):422-429. [DOI] [PubMed] [Google Scholar]
  8. Connell CM, Gallant MP Spouse caregivers’ attitudes toward obtaining a diagnosis of a dementing illness. J Am Geriatrics Soc. 1996;44(8):1003-1009. [DOI] [PubMed] [Google Scholar]
  9. Fortinsky RH How linked are physicians to community support services for their patients with dementia? J Appl Gerontol . 1998;17(4):480-498. [Google Scholar]
  10. Fortinsky RH , Zlateva I., Delaney C., Kleppinger A. Primary care physicians’ dementia care practices: evidence of geographic variation. Gerontologist . 2010;50(2):179-191. [DOI] [PubMed] [Google Scholar]
  11. Reuben D., Levin J., Frank J., et al. Closing the dementia care gap: can referral to Alzheimer’s Association chapters help? . Alzheimers Dementia 200. 9;5(6):498-502. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Bass DM, Clark PA, Looman WJ, McCarthy CA, Eckert S. The Cleveland Alzheimer’s care demonstration: outcomes after 12 months of implementation. Gerontologist. 2003;43(1): 73-85. [DOI] [PubMed] [Google Scholar]
  13. Vickrey BG, Mittman BS, Connor KI, et al. The effect of a disease management intervention on quality and outcomes of dementia care: a randomized controlled trial. Ann Intern Med. 2006;145(10): 713-726. [DOI] [PubMed] [Google Scholar]
  14. De Meyer G. , Shapiro F., Vanderstichele H., et al. Diagnosis-independent Alzheimer disease biomarker signature in cognitively normal elderly people . Arch Neurol. 2010;67(8): 949-956. [DOI] [PMC free article] [PubMed] [Google Scholar]
  15. Fortinsky RH Diagnosis and early support. In: Downs M, Bowers B, eds. Excellence in Dementia Care: Principles and Practices. Maidenhead: , UK: Open University Press/McGraw-Hill; 2008:267-284. [Google Scholar]
  16. Johnson H., Bouman WP, Pinner G. On telling the truth in Alzheimer’s disease: a pilot study of current practice and attitudes. Int Psychoger. 2000. ;12(2):221-229. [DOI] [PubMed] [Google Scholar]
  17. Hinton L., Franz CE, Reddy G., Flores Y., Kravitz RL, Barker C. Practice constraints, behavioral problems, and dementia care: primary care physicians’ perspectives. J Gen Intern Med. 2007;22(11):1487-1492. [DOI] [PMC free article] [PubMed] [Google Scholar]
  18. Ploeg J., Denton M., Tindale J., et al. Canadian Older adults’ awareness of community health and support services for dementia care. J Aging. 2009;28(4):359-370. [DOI] [PubMed] [Google Scholar]
  19. Callahan CM , Hendrie HC, Tierney WM Documentation and evaluation of cognitive impairment in elderly primary care patients. Ann Intern Med . 1995;122(6):422-429. [DOI] [PubMed] [Google Scholar]
  20. Schoenmakers B., Buntinx F., Delepeleire J. What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative? Scand J Prim Health Care. 2009;27(1):31-40. [DOI] [PMC free article] [PubMed] [Google Scholar]
  21. Cherry DL, Hahn C., Vickery BG Educating primary care physicians in the management of Alzheimer’s disease: using practice guidelines to set quality benchmarks. Int Pyschogeriatr. 2009;21(suppl 1):S44-S52. [DOI] [PubMed] [Google Scholar]
  22. Derksen E., Vernooij-Dassen M., Scheltens P., Olde-Rikkert M. A model for disclosure of the diagnosis of dementia. Dementia . 2006;3:462-468. [Google Scholar]
  23. Lakkonen ML , Raivio MM, Elonieni-Sulkava U., Tilvis RS, Pitkala KH Disclosure of the dementia diagnosis and the need for advanced care planning in individuals with Alzheimer’s disease. J Am Geriatr Soc. 2008;56(11):2156-2157. [DOI] [PubMed] [Google Scholar]
  24. Cherry DL, Vickery BG, Schwankovsky L., Heck E., Plauche M., Yep R. Interventions to improve quality of care: THE Kaiser Permanente-Alzheimer’s Association Dementia Care Project. Am J Manag Care. 2004;10(8):553-560. [PubMed] [Google Scholar]
  25. Fortinsky RH , Kulldorff M., Kleppinger A., Kenyon-Pesce L. Dementia care consultation for family caregivers: Collaborative model linking an Alzheimer’s Association chapter with primary care physicians. Aging Ment Health. 2009;13(2):162-170. [DOI] [PubMed] [Google Scholar]

Articles from American Journal of Alzheimer's Disease and Other Dementias are provided here courtesy of SAGE Publications

RESOURCES