Decision making for participation in dementia research

American Journal of Geriatric Psychiatry

Volumn 21, Issue 4, 2013, Pages 355-363

  Black, Betty S ^a,b   Wechsler, Malory ^a   Fogarty, Linda ^c  

^a JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b JOHNS HOPKINS UNIVERSITY   (United States)

^c JHPIEGO   (United States)

Author keywords

Clinical research; Decision making; Dementia; Qualitative research

Indexed keywords

ADULT; AGED; ARTICLE; CLINICAL ARTICLE; COGNITIVE DEFECT; CROSS-SECTIONAL STUDY; DECISION MAKING; DEMENTIA; FAMILY DECISION MAKING; FEMALE; HUMAN; MALE; MEDICAL RESEARCH; PATIENT PARTICIPATION;

AGED; DECISION MAKING; DEMENTIA; FEMALE; HUMANS; MALE; MIDDLE AGED; PROXY; RESEARCH SUBJECTS; THIRD-PARTY CONSENT;

EID: 84880112453     PISSN: 10647481     EISSN: 15457214     Source Type: Journal    
DOI: 10.1016/j.jagp.2012.11.009     Document Type: Article

References (22)

1. Alzheimer's Association: 2011 Alzheimer's disease facts and figures. Alzheimer Dement 2011; 7:208-244
2. Karlawish JHT, Kim SYH, Knopman D, et al: Interpreting the clinical significance of capacity scores for informed consent in Alzheimer disease clinical trials. Am J Geriatr Psychiatry 2008; 16:568-574
3. WendlerD, PrasadK:Core safeguards for clinical research with adults who are unable to consent. Ann Intern Med 2001; 135:514-523 (Pubitemid 32923569)
4. Beauchamp TL, Childress JF: Principles of Biomedical Ethics. New York, NY, Oxford University Press, 2009
5. Berger JT, DeRenzo EG, Schwartz J: Surrogate decision making: reconciling ethical theory and clinical practice. Ann Intern Med 2008; 149:48-53
6. Black BS, Kasper J, Brandt J, et al: Identifying dementia in high risk community samples: the Memory and Medical Care Study. Alzheimer Dis Assoc Disord 2003; 17:9-18 (Pubitemid 36288241)
7. Schneider LS, Ismail MS, Dagerman KS, et al: Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE): Alzheimer's disease trail. Schizophrenia Bull 2003; 29:57-72 (Pubitemid 36871057)
8. Zimmerman S, Sloane PD, Williams CS, et al: Dementia care and quality of life in assisted living and nursing home. Gerontologist 2005; 45:133-146 (Pubitemid 41606933)
9. Karlawish JHT, Rubright J, Casarett D, et al: Older adults' attitudes toward enrollment of non-competent subjects participating in Alzheimer's research. Am J Psychiatry 2009; 166:182-188
10. Kim SYH, Cox C, Caine ED: Impaired decision-making ability in subjects with Alzheimer's disease and willingness to participate in research. Am J Psychiatry 2002; 159:797-802 (Pubitemid 34465054)
11. Karlawish JHT, Casarett DJ, James BD: Alzheimer's disease patients' and caregivers' capacity, competency and reasons to enroll in an early-phase Alzheimer's disease clinical trial. Am J Geriatr Psychiatry 2002; 50:2019-2024 (Pubitemid 35462449)
12. Stocking CB, Hougham GW, Danner DD, et al: Speaking of research advance directives: planning for future research participation. Neurology 2006; 66:1361-1366 (Pubitemid 43739645)
13. Karlawish JHT, Casarett DJ, Klocinsky J, et al: How do AD patients and their caregivers decide whether to enroll in a clinical trial? Neurology 2001; 56:789-792 (Pubitemid 32240104)
14. Sugarman J, Cain C, Wallace R, et al: How proxies make decisions about research for patients with Alzheimer's disease. J Am Geriatr Soc 2001; 49:1110-1119 (Pubitemid 32801152)
15. Lynöe N, Sandlund M, Jacobsson L: When others decide: reasons for allowing patients with Alzheimer's disease to participate in nontherapeutic research. Int Psychogeriatr 1998; 10:435-436 (Pubitemid 29054739)
16. Black BS, Kass NE, Fogarty LA, et al: Informed consent for dementia research: the study enrollment encounter. IRB 2007; 29:7-14
17. 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; 12:189-198
18. Corbin J, Strauss A: Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Los Angeles, CA, Sage Publications, 2008
19. Patton MQ: Qualitative Research and Evaluation Methods. 3rd ed. Thousand Oaks, CA, Sage Publications, 2002
20. Miles MB, Huberman AM: Qualitative Data Analysis: An Expanded Sourcebook. Thousand Oaks, CA, Sage Publications, 1994
21. Karlawish J, Kim SYH, Knopman D, et al: The views of Alzheimer disease patients and their study partners on proxy consent for clinical trial enrollment. AmJ Geriatr Psychiatry 2008; 16:240-247
22. Kim SYH, Karlawish JH, Kim M, et al: Preservation of the capacity to appoint a proxy decision maker. Arch Gen Psychiatry 2011; 68:214-220