Incongruent perceptions of the care values of hospitalized persons with dementia: a pilot study of patient-family caregiver dyads

Aging and Mental Health

Volumn 22, Issue 4, 2018, Pages 489-496

  Miller, Lyndsey M ^a   Whitlatch, Carol J ^b   Lee, Christopher S ^c   Lyons, Karen S ^c  

^a UNIVERSITY OF UTAH   (United States)

^b Benjamin Rose Institute   (United States)

^c OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

Author keywords

dyadic; family caregiving; hospitalization; Incongruence; interpersonal context

Indexed keywords

ADULT; AGED; CAREGIVER; COST OF ILLNESS; CROSS-SECTIONAL STUDY; DEMENTIA; FAMILY; FEMALE; HEALTH CARE QUALITY; HOSPITALIZATION; HUMAN; HUMAN RELATION; MALE; MIDDLE AGED; NURSING; PATIENT SAFETY; PILOT STUDY; PSYCHOLOGY; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; CAREGIVERS; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; DEMENTIA; FAMILY; FEMALE; HOSPITALIZATION; HUMANS; INTERPERSONAL RELATIONS; MALE; MIDDLE AGED; PATIENT SAFETY; PILOT PROJECTS; QUALITY OF HEALTH CARE;

EID: 85010670110     PISSN: 13607863     EISSN: 13646915     Source Type: Journal    
DOI: 10.1080/13607863.2017.1280766     Document Type: Article

References (49)

1. Aneshensel, C.S., Pearlin, L.I., Mullan, J.T., Zarit, S.H., & Whitlatch, C.J., (1995). Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press.
2. Bloomer, M., Digby, R., Tan, H., Crawford, K., & Williams, A., (2016). The experience of family carers of people with dementia who are hospitalised. Dementia (London), 15(5), 1234–1245. doi:10.1177/1471301214558308
3. Buckley, T., Fauth, E.B., Morrison, A., Tschanz, J., Rabins, P.V., Piercy, K.W., … Lyketsos, C.G., (2012). Predictors of quality of life ratings for persons with dementia simultaneously reported by patients and their caregivers: The Cache County (Utah) Study. International Psychogeriatrics, 24(7), 1094–1102. doi:10.1017/S1041610212000063
4. Cano, A., Johansen, A.B., & Franz, A., (2005). Multilevel analysis of couple congruence on pain, interference, and disability. Pain, 118(3), 369–379. doi:10.1016/j.pain.2005.09.003
5. Caplan, G.A., Meller, A., Squires, B., Chan, S., & Willett, W., (2006). Advance care planning and hospital in the nursing home. Age and Ageing, 35(6), 581–585. doi:10.1093/ageing/afl063
6. Carpenter, B.D., Kissel, E.C., & Lee, M.M., (2007). Preferences and life evaluations of older adults with and without dementia: Reliability, stability, and proxy knowledge. Psychology and Aging, 22(3), 650–655. doi:10.1037/0882-7974.22.3.650
7. Emmett, C., Poole, M., Bond, J., & Hughes, J.C., (2013). Homeward bound or bound for a home? Assessing the capacity of dementia patients to make decisions about hospital discharge: Comparing practice with legal standards. International Journal of Law and Psychiatry, 36(1), 73–82. doi:10.1016/j.ijlp.2012.11.009
8. Feinberg, L.F., & Whitlatch, C.J., (2001). Are persons with cognitive impairment able to state consistent choices? The Gerontologist, 41(3), 374–382.
9. Fillenbaum, G.G., Heyman, A., Wilkinson, W.E., & Haynes, C.S., (1987). Comparison of two screening tests in Alzheimer's disease. The correlation and reliability of the Mini-Mental State Examination and the modified Blessed test. Archives of Neurology, 44(9), 924–927.
10. 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(3), 189–198.
11. Greener, H., Poole, M., Emmett, C., Bond, J., Louw, S.J., & Hughes, J.C., (2012). Value judgements and conceptual tensions: Decision-making in relation to hospital discharge for people with dementia. Clinical Ethics, 7(4), 166–174. doi:10.1258/ce.2012.012028
12. Heid, A.R., Bangerter, L.R., Abbott, K.M., & Van Haitsma, K., (2015). Do family proxies get it right? Concordance in reports of nursing home residents' everyday preferences. Journal of Applied Gerontology. Advanced online publication. doi:10.1177/0733464815581485
13. Hirschman, K.B., Joyce, C.M., James, B.D., Xie, S.X., & Karlawish, J., (2005). Do Alzheimer's disease patients want to participate in a treatment decision, and would their caregivers let them? The Gerontologist, 45(3), 381–388.
14. Hirschman, K.B., Kapo, J.M., & Karlawish, J., (2006). Why doesn't a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? American Journal of Geriatric Psychiatry, 14(8), 659–667.
15. Judge, K.S., Menne, H.L., & Whitlatch, C.J., (2010). Stress process model for individuals with dementia. The Gerontologist, 50(3), 294–302. doi:10.1093/geront/gnp162
16. Karlawish, J., Casarett, D., Propert, K.J., James, B.D., & Clark, C.M., (2002). Relationship between Alzheimer's disease severity and patient participation in decisions about their medical care. Journal of Geriatric Psychiatry and Neurology, 15(2), 68–72. doi:10.1177/089198870201500203
17. Kensinger, E.A., (2009). Cognition in aging and age-related disease. In Squire L.R., (Ed.), Encyclopedia of neuroscience (pp. 1055–1061). Elsevier Science.
18. Koppelman, E.R., (2002). Dementia and dignity: Towards a new method of surrogate decision making. Journal of Medicine and Philosophy, 27(1), 65–85. doi:10.1076/jmep.27.1.65.2971
19. Logsdon, R.G., Gibbons, L.E., McCurry, S.M., & Teri, L., (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510–519.
20. 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: Psychological Sciences, 57B(3), 195–204.
21. Menne, H.L., Judge, K.S., & Whitlatch, C.J., (2009). Predictors of quality of life for individuals with dementia: Implications for intervention. Dementia, 8(4), 543–560. doi:10.1177/1471301209350288
22. Menne, H.L., & Whitlatch, C.J., (2007). Decision-making involvement of individuals with dementia. The Gerontologist, 47(6), 810–819.
23. Miller, L.M., Lyons, K.S., & Bennett, J.A., (2015). Incongruent perceptions of pain and physical function among families living with lung cancer. Supportive Care in Cancer, 23(9), 2755–2762. doi:10.1007/s00520-015-2640-x
24. Mitchell, A.J., (2009). A meta-analysis of the accuracy of the mini-mental state examination in the detection of dementia and mild cognitive impairment. Journal of Psychiatric Research, 43(4), 411–431. doi:10.1016/j.jpsychires.2008.04.014
25. Moon, H., Townsend, A., Whitlatch, C.J., & Dilworth-Anderson, P., (2016). Quality of life for dementia caregiving dyads: Effects of incongruent perceptions of everyday care and values. Gerontologist. Advanced online publication.
26. Moyle, W., Murfield, J.E., Griffiths, S.G., & Venturato, L., (2012). Assessing quality of life of older people with dementia: A comparison of quantitative self-report and proxy accounts. Journal of Advanced Nursing, 68(10), 2237–2246. doi:10.1111/j.1365-2648.2011.05912.x
27. Nelis, S.M., Clare, L., Martyr, A., Markova, I., Roth, I., Woods, R.T., … Morris, R.G., (2011). Awareness of social and emotional functioning in people with early-stage dementia and implications for carers. Aging & Mental Health, 15(8), 961–969. doi:10.1080/13607863.2011.575350
28. Nilsson, A., Rasmussen, B.H., & Edvardsson, D., (2013). Falling behind: A substantive theory of care for older people with cognitive impairment in acute settings. Journal of Clinical Nursing, 22(11–12), 1682–1691. doi:10.1111/jocn.12177
29. Parmelee, P.A., Lawton, M.P., & Katz, I.R., (1989). Psychometric properties of the Geriatric Depression Scale among the institutionalized aged. Psychological Assessment, 1, 331–338.
30. Pearlin, L.I., Mullan, J.T., Semple, S.J., & Skaff, M.M., (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–594.
31. Phelan, E.A., Borson, S., Grothaus, L., Balch, S., & Larson, E.B., (2012). Association of incident dementia with hospitalizations. JAMA: The Journal of the American Medical Association, 307(2), 165–172. doi:10.1001/jama.2011.1964
32. Pinquart, M., & Sorensen, S., (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. Journals of gerontology. Series B, Psychological Sciences and Social Sciences, 61(1), P33–45.
33. Poole, M., Bond, J., Emmett, C., Greener, H., Louw, S.J., Robinson, L., & Hughes, J.C., (2014). Going home? An ethnographic study of assessment of capacity and best interests in people with dementia being discharged from hospital. BMC Geriatrics, 14(56), 1–15.
34. Raudenbush, S.W., Bryk, A.S., & Congdon, R., (2011). HLM for windows (version 7). Skokie, IL: Scientific Software International.
35. Reamy, A.M., Kim, K., Zarit, S.H., & Whitlatch, C.J., (2011). Understanding discrepancy in perceptions of values: Individuals with mild to moderate dementia and their family caregivers. The Gerontologist, 51(4), 473–483. doi:10.1093/geront/gnr010
36. Sands, L.P., Ferreira, P., Stewart, A.L., Brod, M., & Yaffe, K., (2004). What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life? American Journal of Geriatric Psychiatry, 12(3), 272–280.
37. Sayer, A.G., & Klute, M.M., (2005). Analyzing couples and families: Multilevel methods. In V.L., Bengtson, A.C., Acock, K.R., Allen, P., Dilworth-Anderson, & D.M., Klein (Eds.), Sourcebook of family theory and research (pp. 289–313). Thousand Oaks, CA: Sage.
38. 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(2), 226–237. doi:10.1093/geront/gnp166
39. Schulz, R., & Sherwood, P.R., (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108(9), 23–27.
40. 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(6), 741–751.
41. Shalowitz, D.I., Garrett-Mayer, E., & Wendler, D., (2006). The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine, 166(5), 493–497. doi:10.1001/archinte.166.5.493
42. Sorensen, S., Mak, W., & Pinquart, M., (2011). Planning and decision making for care transitions. Annual Review of Gerontology & Geriatrics, 31(1), 111–142. doi:10.1891/0198-8794.31.111
43. Swidler, R.N., Seastrum, T., & Shelton, W., (2007). Difficult hospital inpatient discharge decisions: Ethical, legal and clinical practice issues. The American Journal of Bioethics, 7(3), 23–28. doi:10.1080/15265160601171739
44. Thies, W., & Bleiler, L., (2013). 2013 Alzheimer's disease facts and figures. Alzheimer's & Dementia, 9(2), 208–245.
45. Tombaugh, T.M., & McIntyre, N.J., (1992). The Mini-Mental State Examination: A comprehensive review. Journal of the American Geriatrics Society, 40, 922–935.
46. Vernooij-Dassen, M., & Moniz-Cook, E., (2016). Person-centred dementia care: Moving beyond caregiving. Aging Ment Health, 20(7), 667–668. doi:10.1080/13607863.2016.1154017
47. Whitlatch, C.J., Feinberg, L.F., & Tucke, S.S., (2005). Measuring the values and preferences for everyday care of persons with cognitive impairment and their families. The Gerontologist, 45(3), 370–380.
48. Whitlatch, C.J., Piiparinen, R., & Feinberg, L.F., (2009). How well do family caregivers know their relatives' care values and preferences? Dementia, 8(2), 223–243. doi:10.1177/1471301209103259
49. Winters-Stone, K.M., Lyons, K.S., Bennett, J.A., & Beer, T.M., (2014). Patterns and predictors of symptom incongruence in older couples coping with prostate cancer. Support Care Cancer, 22(5), 1341–1348. doi:10.1007/s00520-013-2092-0