How Does an Alzheimer’s Disease Patient’s Role in Medical Decision Making Change Over Time?

Abstract

As persons with Alzheimer’s disease (AD) lose their ability to make decisions, someone else has to make decisions for them. We performed a prospective cohort study of 77 AD patient-caregiver dyads to examine when this transition occurs. When dementia severity surpassed a threshold marked by a Mini-Mental State Examination (MMSE) score less than 20, the level of caregiver-reported patient involvement in the medical decision-making process declined (Moderate [MMSE = 19-12]: Odds Ratio [OR] = 2.35, 95% confidence interval [95% CI] = 1.01-5.49; P = .048; Severe [MMSE < 12]: OR = 29.38, 95% CI = 5.98-144.25, P < .001). Furthermore, older patients (OR = 1.06, 95% CI = 1.00-1.12, P = .049) and mounting caregiver burden (OR = 1.12, 95% CI = 1.04-1.26, P = .003) were significant independent predictors of transitions to the caregiver-dominated medical decision-making process. These results provide clinicians with prognostic information that can help caregivers understand how their role in decision making will change over the course of a patient’s dementing illness.

Keywords

Alzheimer’s disease dementia decision making caregiver burden aging

Get full access to this article

View all access options for this article.

References

1. Patient Self-Determination Act. Vol 1395cc, 1396a; 1994.

2. Lewis M , Hepburn K , Narayan S , et al. Decision-making by family caregivers of elders experiencing dementia. Am J Alzheimers Dis Other Demen 2000; 15(6):361-366.

3. Marson DC , Ingram KK , Cody HA , et al. Assessing the competency of patients with Alzheimer’s disease under different legal standards. A prototype instrument. Arch Neurol 1995; 52(10):949-954.

4. Marson D , Harrell L. Executive dysfunction and loss of capacity to consent to medical treatment in patients with Alzheimer’s disease. Semin Clin Neuropsychiatry 1999; 4(1):41-49.

5. Karlawish JH , Casarett D , Propert KJ , et al. Relationship between Alzheimer’s disease severity and patient participation in decisions about their medical care. J Geriatr Psychiatry Neurol 2002; 15(2):68-72.

6. Feinberg LF , Whitlatch CJ . Are persons with cognitive impairment able to state consistent choices? Gerontologist 2001; 41(3):374-382.

7. McKhann G , Drachman D , Folstein M , et al. Clinical diagnosis of Alzheimer’s disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer’s Disease. Neurology 1984; 34(7):939-944.

8. Degner LF , Kristjanson LJ , Bowman D , et al. Information needs and decisional preferences in women with breast cancer. JAMA 1997; 277(18):1485-1492.

9. Folstein MF , Folstein SE , McHugh PR . “Mini-Mental State.” A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12(3):189-198.

10.

10. Vitaliano PP , Russo J , Young HM , et al. The screen for caregiver burden. Gerontologist 1991; 31(1):76-83.

11.

11. Stokes ME , Davis CS , Koch GG . Categorical data analysis using the SAS system. 2nd ed. Cary, NC: SAS Institute, 2000.

12.

12. Diggle PJ , Liang K-Y , Zeger SL . Analysis of longitudinal data. New York: Oxford Science, 1994.

13.

13. Kleinbaum DG , Kupper LL , Muller KE . Applied regression analysis and other multivariable methods. 2nd ed. Boston: PWS-Kent, 1988.

14.

14. Puchalski CM , Zhong Z , Jacobs MM , et al. Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 2000; 48(5 Suppl):S84-S90.

15.

15. Danis M , Southerland LI , Garrett JM , et al. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991; 324(13):882-888.

16.

16. Sehgal A , Galbraith A , Chesney M , et al.

How strictly do dialysis patients want their advance directives followed?

JAMA 1992; 267(1):59-63.

17.

17. Karlawish JH , Casarett DJ , Kim SYH , et al. Can patents with Alzheimer’s disease make an AD treatment decision? [Abstract]. The Gerontologist 2003; 43(S):482.