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American Journal of Alzheimer's Disease and Other Dementias logoLink to American Journal of Alzheimer's Disease and Other Dementias
. 2010 May;25(3):239–247. doi: 10.1177/1533317509356690

A Qualitative Assessment of the Concept of Dependence in Alzheimer’s Disease

Lori Frank 1, Kellee Howard 2, Roy Jones 3, Loretto Lacey 4, Chris Leibman 5, Alberto Lleo 6, Sally Mannix 7, Lisa Mucha 8, Trent McLaughlin 9, Steve Zarit 10
PMCID: PMC10845656  PMID: 20147602

Abstract

Background: The Dependence Scale (DS) was designed to assess levels of patient need for care due to deficits typical of Alzheimer’s disease (AD). This study examined content validity of the DS based on input from patients, caregivers, and clinicians. Methods: Qualitative interviews with experts, patients, and caregivers were used to collect information on the concept of dependence and to assess content validity. Results: Nine clinicians rated item relevance ‘‘high’’ with consensus on the primacy of functional abilities and dependence in the measurement of AD progression. Twenty-two US, 11 UK, and 14 informal caregivers from Spain participated in focus groups; 18 patients participated in 3 separate focus groups. Discussion supported DS hierarchy of dependence, capture of mild-to-severe dependence, suitability of response options, and short recall time frame. Conclusions: Clinicians, caregivers, and patients support content validity of the DS in mild-to-moderate AD. The DS may be valuable to capture dependence within future clinical dementia trials.

Keywords: Alzheimer’s disease, memory loss, dependence, qualitative research, Dependence Scale

Full Text

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Contributor Information

Lori Frank, Center for Health Outcomes Research, Health Care Analytics Group, United BioSource Corporation, Bethesda, MD, USA.

Kellee Howard, Center for Health Outcomes Research, Health Care Analytics Group, United BioSource Corporation, Bethesda, MD, USA.

Roy Jones, The Research Institute for the Care of the Elderly, Bath, United Kingdom.

Loretto Lacey, Elan Pharmaceuticals, South San Francisco, CA, USA.

Chris Leibman, Elan Pharmaceuticals, South San Francisco, CA, USA.

Alberto Lleo, Hospital de Sant Pau, Barcelona, Spain.

Sally Mannix, Center for Health Outcomes Research, Health Care Analytics Group, United BioSource Corporation, Bethesda, MD, USA.

Lisa Mucha, Wyeth Pharmaceuticals, Collegeville, PA, USA.

Trent McLaughlin, Elan Pharmaceuticals, South San Francisco, CA, USA.

Steve Zarit, Department of Human Development and Family Studies, Pennsylvania State University, University Park, PA, USA.

References

  1. Atchison TB, Massman PJ, Doody RS Baseline cognitive function predicts rate of decline in basic-care abilities of individuals with dementia of the Alzheimer’s type. Arch Clin Neuropsychol. 2007;22(1):99-107. [DOI] [PubMed] [Google Scholar]
  2. Potki SG, Anand R., Hartman R., Veach J., Grossberg G. Impact of Alzheimer’s disease and rivastigmine treatment on activities of daily living over the course of mild to moderately severe disease . Prog Neuropsychopharmacol Biol Psychiatry. 2002;26(4):713-720. [DOI] [PubMed] [Google Scholar]
  3. Centers for Disease Control, National Center for Chronic Disease Prevention and Health Promotion. Unrealized Prevention Opportunities: Reducing the Health and Economic Burden of Chronic Illness; November 2000. [Google Scholar]
  4. Frytak JR, Henk HJ, Zhao Y., et al. Health service utilization among Alzheimer’s disease patients: evidence from managed care. Alzheimer’s Dementia. 2008;4(5):361-367. [DOI] [PubMed] [Google Scholar]
  5. Jonsson L., Andreasen N., Kilander L., et al. Patient- and proxy-reported utility in Alzheimer disease using the EuroQoL. Alzheimer Dis Assoc Disord. 2006. ;20(1):49-55. [DOI] [PubMed] [Google Scholar]
  6. Stern Y., Albert SM, Sano M., et al. Assessing patient dependence in Alzheimer’s disease. J Gerontol. 1994;49(5):M216-M222. [DOI] [PubMed] [Google Scholar]
  7. Gurland B. Dependency in the Elderly of New York City: Policy and Services Implications of the US-UK Cross-National Geriatric Community Study. New York, NY: Community Council of Greater New York; ; 1978. [Google Scholar]
  8. Brickman AM, Riba A., Bell K., et al. Longitudinal assessment of patient dependence in Alzheimer disease . Arch Neurol. 2002;59(8):1304-1308. [DOI] [PubMed] [Google Scholar]
  9. Zhu CW, Leibman C., McLaughlin T., et al. Patient Dependence and Longitudinal Changes in Costs of Care in Alzheimer’s Disease. Dement Geriatr Cogn Disord. 2008;26(5):416-423. [DOI] [PMC free article] [PubMed] [Google Scholar]
  10. Zhu CW, Leibman C., McLaughlin T., et al. The effects of patient function and dependence on costs of care in Alzheimer’s disease. J Am Geriatr Soc. 2008;56(8):1497-1503. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Scherer RK, Scarmeas N., Brandt J., et al. The relation of patient dependence to home health aide use in Alzheimer’s disease. J Gerontol A Biol Sci Med Sci. 2008;63(9):1005-1009. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. FDA. Draft guidance for industry on patient-reported outcome measures: use in medical product development to support labeling claim. Federal Register. 2006;71(23):5862-5863. [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Galasko D., Bennett D., Sano M., et al. An inventory to assess activities of daily living for clinical trials in Alzheimer’s disease. The Alzheimer’s Disease Cooperative Study. Alzheimer Dis Assoc Disord. 1997. ;11(suppl 2):S33-S39. [PubMed] [Google Scholar]
  14. Ferris SH, Mackell JA, Mohs R., et al. A multicenter evaluation of new treatment efficacy instruments for Alzheimer’s disease clinical trials: overview and general results . The Alzheimer’s Disease Cooperative Study. Alzheimer Dis Assoc Disord. 1997;11(suppl 2):S1-S12. [PubMed] [Google Scholar]
  15. Woolf N. Best practices: a little structure in your codes Atlas. Ti Newsletter, March 2007. http://www.atlasti.com/downloads/ATLASti_Newsletter_2007_01.pdf. Accessed June 2009. [Google Scholar]
  16. Polit DF, Hungler BP Nursing Research: Principles and Methods. Philadelphia: : Lippincott; 1995. [Google Scholar]
  17. McColl E. Developing questionnaires. In: Fayers PM., Hays RD., eds. Assessing Quality of Life in Clinical Trials: Methods and Practice. Oxford: Oxford University Press; 2005:9-23. [Google Scholar]
  18. Wackerbarth SB, Streams ME, Smith MK Capturing the insights of family caregivers: survey item generation with a coupled interview/focus group process. Qual Health Res. 2002;12(8): 1141-1154. [DOI] [PubMed] [Google Scholar]
  19. Zhu CW, Leibman C., Townsend R., et al. Bridging from clinical endpoints to estimates of treatment value for external decision makers. J Nutr Health Aging. 2009;13(3):256-259. [DOI] [PMC free article] [PubMed] [Google Scholar]
  20. Clare L. Managing threats to self: awareness in early stage Alzheimer’s disease . Soc Sci Med. 2003;57(6):1017-1029. [DOI] [PubMed] [Google Scholar]
  21. McRae H. ‘Making the best you can of it’: living with early-stage Alzheimer’s disease. Soc Health Illn. 2008;30(3):396-412. [DOI] [PubMed] [Google Scholar]

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