Understanding discrepancy in perceptions of values: Individuals with mild to moderate dementia and their family caregivers

Gerontologist

Volumn 51, Issue 4, 2011, Pages 473-483

  Reamy, Allison M ^a   Kim, Kyungmin ^a   Zarit, Steven H ^a   Whitlatch, Carol J ^b  

^a PENNSYLVANIA STATE UNIVERSITY   (United States)

^b Benjamin Rose Institute   (United States)

Author keywords

Care preferences; Caregiving; Decision making

Indexed keywords

ADULT; AGED; ARTICLE; CAREGIVER; COMPREHENSION; DECISION MAKING; DEMENTIA; FEMALE; HUMAN; MALE; MIDDLE AGED; NURSING; PATIENT PREFERENCE; PERCEPTION; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; SOCIAL PSYCHOLOGY; SOCIOECONOMICS;

ADULT; AGED; AGED, 80 AND OVER; CAREGIVERS; COMPREHENSION; DECISION MAKING; DEMENTIA; FEMALE; HUMANS; MALE; MIDDLE AGED; PATIENT PREFERENCE; PERCEPTION; QUESTIONNAIRES; SOCIAL VALUES; SOCIOECONOMIC FACTORS;

EID: 80052989527     PISSN: 00169013     EISSN: 17585341     Source Type: Journal    
DOI: 10.1093/geront/gnr010     Document Type: Article

References (38)

1. Baldwin, C. (2005). Narrative, ethics and people with severe mental illness. Australian and New Zealand Journal of Psychiatry, 39, 1022-1029. (Pubitemid 43904441)
2. Bass, D. M., Tausig, M. B., & Noelker, L. S. (1989). Elder impairment, social support, and caregiver strain: A framework for understanding support's effects. Journal of Applied Social Sciences, 13, 80-115.
3. Berg, C. A., & Upchurch, R. (2007). A developmental-contextual model of couples coping with chronic illness across the adult life span. Psychological Bulletin, 133, 920-954. doi:10.1037/0033-2909.133.6.920.
4. Bodenmann, G. (1995). A systemic-transactional conceptualization of stress and coping in couples. Swiss Journal of Psychology, 54, 34-49.
5. Bryk, A. S., & Raudenbush, S. W. (1992). Hierarchical linear models. Newbury Park, CA: Sage.
6. Carpenter, B. D., Lee, M., Ruckdeschel, K., van Haitsma, K. S., & Feldman, P. H. (2006). Adult children as informants about parent's psychosocial preferences. Family Relations, 55, 552-563. (Pubitemid 44797763)
7. Clark, P. A., Tucke, S. S., & Whitlatch, C. J. (2008). Consistency of information from persons with dementia: An analysis of differences by question type. Dementia, 7, 341-358. doi:10.1177/1471301208093288.
8. Crespo, M., López, J., & Zarit, S. H. (2005). Depression and anxiety in primary caregivers: A comparative study of caregivers of demented and non-demented older persons. International Journal of Geriatric Psychiatry, 20, 591-592. doi:10.1002/gps.1321. (Pubitemid 40873353)
9. Ditto, P. H., Hanks, J. H., Smucker, W. D., Bookwala, J., Coppola, K. M., Dresser, R., et al. (2001). Advance directives as acts of communication. Archives of Internal Medicine, 161, 421-430.
10. Downs, M., Small, N., & Froggatt, K. (2006). Person-centered care for people with severe dementia. In A. Burns, & B. Winblad (Eds.), Severe dementia (pp. 193-204). West Sussex, UK: John Wiley & Sons, Ltd.
11. Elliott, B. A., Gessert, C. E., & Peden-McAlpine, C. (2009). Family decision-making in advanced dementia: Narrative and ethics. Scandinavian Journal of Caring Sciences, 23, 251-258. doi:10.1111/j.1471-6712.2008.00613.x.
12. Fagerlin, A., Ditto, P. H., Hawkins, N. A., Schnieder, C. E., & Smucker, W. D. (2002). The use of advance directives in end-of-life decision making: Problems and possibilities. American Behavioral Scientist, 46, 268-283. doi:10.1177/0002764202046002007.
13. Feinberg, L. F., & Whitlatch, C. J. (2001). Are persons with cognitive impairment able to state consistent choices? The Gerontologist, 41, 374-382. (Pubitemid 32525554)
14. Folstein, M. F., Folstein, S. E., & 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, 189-198.
15. Karel, M. J., Moye, J., Bank, A., & Azar, A. R. (2007). Three methods of assessing values for advance care planning: Comparing persons with and without dementia. Journal of Aging and Health, 19, 123-151. doi:10.1177/ 0898264306296394. (Pubitemid 46046176)
16. Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham, UK: Open University Press.
17. Ledermann, T., Bodenmann, G., Gagliardi, S., Charvos, L., Verardi, S., Rossier, J., et al. (2010). Psychometrics of the dyadic coping inventory in three language groups. Swiss Journal of Psychology, 69, 201-212. doi:10.1024/1421-0185/a000024.
18. Littell, R. C., Milliken, G. A., Stroup, W. W., & Wolfinger, R. D. (1996). SAS system for mixed models. Cary, NC: SAS Institute.
19. Lyons, K. S., Zarit, S. H., Sayer, A. G., & Whitlatch, C. J. (2002). Caregiving as a dyadic process: Perspectives from caregiver and receiver. Journal of Gerontology, 57B, 195-204.
20. Maguire, M. C. (1999). Treating the dyad as the unit of analysis: A primer on three analytic approaches. Journal of Marriage and the Family, 61, 213-223.
21. Martire, L. M., Schulz, R., Reynolds, C. F., Morse, J. Q., Butters, M. A., & Hinrichsen, G. A. (2008). Impact of close family members on older adults' early response to depression treatment. Psychology and Aging, 23, 447-452. doi:10.1037/0882-7974.23.2.447. (Pubitemid 351957900)
22. McCullough, L. B., Wilson, N. L., Teasdale, T. A., Kolpakchi, A. L., & Skelly, J. R. (1993). Mapping personal, familial, and professional values in long-term care decisions. The Gerontologist, 33, 324-332. (Pubitemid 23169970)
23. Menne, H. L., Tucke, S. S., Whitlatch, C. J., & Feinberg, L. F. (2008). Decision-making involvement scale for individuals with dementia and family caregivers. American Journal of Alzheimer's Disease and Other Dementias, 23, 23-29. doi:10.1177/1533317507308312.
24. Menne, H. L., & Whitlatch, C. J. (2007). Decision-making involvement of individuals with dementia. The Gerontologist, 47, 810-819. (Pubitemid 351171902)
25. Meyler, D., Stimpson, J. P., & Peek, M. K. (2007). Health concordance within couples: A systematic review. Social Science and Medicine, 64, 2297-2310. doi:10.1016/j.socscimed.2007.02.007. (Pubitemid 46678574)
26. New York State Department of Health. (2010). Medical orders for life sustaining treatment (MOLST). Retrieved from http://www.health.state.ny.us/ professionals/patients/patient-rights/molst/
27. Piiparinen, R. P., Tucke, S., & Whitlatch, C. J. (2008, April). Everyday care values and preferences within care dyads: Incongruence across time. Presented at the annual meeting of the Ohio Association for Gerontology and Education, Cleveland, OH.
28. Roth, D. L., Haley, W. E., Owen, J. E., Clay, O. J., & Goode, K. T. (2001). Latent growth models of the longitudinal effects of dementia caregiving: A comparison of African American and White family caregivers. Psychology and Aging, 16, 427-436. doi:10.1037/0882-7974.16.3.427. (Pubitemid 32816472)
29. Schmid, B., Allen, R. S., Haley, P. P., & DeCoster, J. (2010). Family matters: Dyadic agreement in end-of-life medical decision making. The Gerontologist, 50, 226-237. doi:10.1093/geront/gnp166.
30. Schreiner, A. S., Morimoto, T., Arai, Y., & Zarit, S. (2006). Assessing family caregiver's mental health using a statistically derived cut-off score for the Zarit Burden Interview. Aging and Mental Health, 10, 107-111. doi:10.1080/13607860500312142. (Pubitemid 43355120)
31. Sebern, M. D., & Whitlatch, C. J. (2007). Dyadic relationship scale: A measure of the impact of the provision and receipt of family care. The Gerontologist, 47, 741-751. (Pubitemid 351171896)
32. 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, 51-61.
33. Whitlatch, C. J., Feinberg, L. F., & Tucke, S. (2005a). Accuracy and consistency of responses from persons with cognitive impairment. Dementia, 4, 171-183. doi:10.1177/1471301205051091.
34. Whitlatch, C. J., Feinberg, L. F., & Tucke, S. S. (2005b). Measuring the values and preferences for everyday care of persons with cognitive impairment and their family caregivers. The Gerontologist, 45, 370-380. (Pubitemid 40770807)
35. Whitlatch, C. J., Piiparinen, R., & Feinberg, L. F. (2009). How well do family caregivers know their relatives' care values and preferences? Dementia, 8, 223-243. doi:10.1177/1471301209103259.
36. Zarit, S. H., & Braungart, E. R. (2007). Elders as care receivers: Autonomy in the context of frailty. In H-W Wahl, C. Tesch-Romer, & A. Hoff (Eds.), New dynamics in old age individual, environmental, and societal perspectives (pp. 85-104). Amityville, NY: Baywood Publishing Company.
37. Zarit, S. H., Femia, E. E., Kim, K., & Whitlatch, C. J. (2010). The structure of risk factors and outcomes for family caregivers: Implications for assessment and treatment. Aging and Mental Health, 14, 220-231.
38. Zweibel, N., & Lydens, L. A. (1990). Incongruent perceptions of older adult/caregiver dyads. Family Relations, 39, 63-67.