This study examines the ability of persons with cognitive impairment (n = 111) to provide consistent and accurate responses to questions about demographic characteristics and basic preferences. Persons with cognitive impairment were interviewed twice within a week using a parallel interview to determine stability and accuracy of responses. Family caregivers were interviewed once within the same time period. In general persons with mild to moderate cognitive impairment (i.e. MMSE scores from 13-26) were accurate and reliable in their ability to respond to questions about demographics and basic preferences. These results add further support to past findings that persons with cognitive impairment can be active participants in both research and practice.
Aneshensel, C.S. , Pearlin, L.I. , Mullan, J.T. , Zarit, S.H. , & Whitlatch, C.J. (1995). Profiles in caregiving: The unexpected career. New York: Academic Press .
2.
Brod, M. , Stewart, A.L. , Sands, L. , & Walton, P. (1999). Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument . The Gerontologist, 39(1), 25-35 .
3.
Cohen, D. , & Eisdorfer, C. (1986). The loss of self. New York: Norton .
4.
Coriell, M. , & Cohen, S. (1995). Concordance in the face of a stressful life event: When do members of a dyad agree that one person supported the other?Journal of Personality & Social Psychology, 69(2), 289-299 .
5.
Downs, M. (1997). Progress report: The emergence of the person in dementia research . Aging and Society, 17(5), 597-604 .
6.
Dresser, R. , & Whitehouse, P.J. (1994). The incompetent patient on the slippery slope . Hastings Center Report, 24(4), 6-12 .
7.
Feinberg, L.F. , & Whitlatch, C.J. (2001). Are persons with cognitive impairment able to state consistent choices?The Gerontologist, 41(3), 1-9 .
8.
Feinberg, L.F. , & Whitlatch, C.J. (2002). Decision making for persons with cognitive impairment and their family caregivers . American Journal of Alzheimer’s Disease and Other Dementias, 17(4), 237-244 .
9.
Folstein, M.F. , Folstein, S. , & McHugh, P.R. (1975). Mini-mental state: A practical method for grading the cognitive state of patients for the clinician . Journal of Psychiatric Research, 12(3), 189-198 .
10.
Gerety, M.B. , Chiodo, L.K. , Kanten, D.N. , Tuley, M.R. , & Cornell, J.E. (1993). Medical treatment preferences of nursing home residents: Relationship to function and concordance with surrogate decision makers . Journal of the American Geriatrics Society, 41(9), 953-960 .
11.
Kitwood, T. (1997). The experience of dementia . Aging and Mental Health, 1(1), 13-22 .
12.
Kitwood, T. , & Benson, S. (1995). The new culture of dementia care. London: Hawker Publications .
13.
Landis, J. , & Koch, G. (1977). The measurement of observer agreement for categorical data . Biometrics, 33(1), 159-174 .
14.
Logsdon, R.G. , & Albert, S.M. (1999). Assessing quality of life in Alzheimer’s disease: Conceptual and methodological issues . Journal of Mental Health and Aging, 5, 3-6 .
15.
McHorney, C.A. (1996). Measuring and monitoring general health status in elderly persons: Practical and methodological issues using the SF-36 Health Survey . The Gerontologist, 36(5), 571-583 .
16.
Molloy, D.W. , Alernayehu, E. , & Roberts, R. (1991). A Standardized Mini-Mental State Examination (SMMSE): Its reliability compared to the traditional Mini-Mental State Examination (MMSE) . The American Journal of Psychiatry, 148, 102-105 .
17.
Mulgrew, C.L. , Morgenstern, N. , Shetterly, S.M. , Baxter, J. , Baron, A.E. , & Hamman, R.F. (1999). Cognitive functioning and impairment among rural elderly Hispanics and non-Hispanic whites as assessed by the Mini-Mental State Examination . Journal of Gerontology: Psychological Sciences, 54B(4), P233-P230 .
18.
Parmelee, P.A. , Lawton, M.P. , & Katz, I.R. (1989). Psychometric properties of the Geriatric Depression Scale among the institutionalized aged . Psychological Assessment, 1(4), 331-338 .
19.
Pett, M. (1997). Non parametric statistics for health care research. Thousand Oaks, CA: Sage .
20.
Pruchno, R.A. , Burant, C.J. , & Peters, N.D. (1997). Typologies of caregiving families: Family congruence and individual well-being . The Gerontologist, 37(2), 157-167 .
21.
Roberto, K.A. (1999). Making critical health care decisions for older adults: Consensus among family members . Family Relations, 48(2), 167-175 .
22.
Sansone, P. , Schmitt, R.L. , & Nichols, J.N. (1996). The right to choose: Capacity study of demented residents in nursing homes. New York: Francis Schervier Home and Hospital .
23.
Sansone, P. , Schmitt, L. , Nichols, J. , Phillips, M. , & Belisle, S. (1998). Determining the capacity of demented nursing home residents to name a health care proxy . Clinical Gerontologist, 19(4), 35-51 .
24.
Squillace, M.R. , Mahoney, K.J. , Loughlin, D.M. , Simon-Rusinowitz, L. , & Desmond, S.M. (2002). Personal assistance service choice and decision-making among persons with disabilities and surrogate representatives . Jounral of Mental Health and Aging, 8, 225-240 .
25.
Stewart, A. , Sherbourne, C. , & Brod, M. (1996). Measuring health-related quality of life in older and demented populations. In B. Spilker (Ed.), Quality of life and pharmaeconomics in clinical trials (2nd edn.). Philadelphia, PA: Lippincott Rasen .
26.
Tombaugh, T.N. , & McIntyre, N.J. (1992). The mini-mental state examination: A comprehensive review . Journal of the American Geriatrics Society, 40(9), 922-935 .
27.
Whitlatch, C.J. (2002). Respecting both voices in family care: Support for both the carer and person living with dementia . Invited colloquium presented at the University of Bradford, School of Health Studies, Bradford Dementia Group, Bradford, UK, July.
28.
Whitlatch, C.J. , & Feinberg, L.F. (2002). Respecting both voices in family care: Empowering family caregivers and persons with dementia . Paper presented at the 3rd International Conference on Family Care, Washington, DC, October.
29.
Whitlatch, C.J. , & Feinberg, L.F. (2003). Planning for the future together in culturally diverse families: Making everyday care decisions . Alzheimer’s Care Quarterly, 4(1), 49-60 .
30.
Woods, B. (1999). The person in dementia care . Generations, 23(3), 35-39 .
31.
Yale, R. (1999). Support groups and other services for individuals with early-stage Alzheimer’s disease . Generations, 23(3), 57-61 .
32.
Zarit, S.H. , Femia, E.E. , Watson, J. , Rice-Oeschger, L. , & Kakos, B. (in press). Memory club: A group intervention for people with early stage dementia and their care partners . The Gerontologist.
