Dementia Caregiver Burden: a Research Update and Critical Analysis

Current Psychiatry Reports

Volumn 19, Issue 9, 2017, Pages

  Cheng, Sheung Tak ^a,b  

^a THE EDUCATION UNIVERSITY OF HONG KONG   (Hong Kong)

^b UNIVERSITY OF EAST ANGLIA   (United Kingdom)

Author keywords

Behavioral and psychological symptoms of dementia; Burden; Dementia caregiving; Depression; Functional impairments; Neuropsychiatric symptoms

Indexed keywords

HYDROCORTISONE;

ADL DISABILITY; ALZHEIMER DISEASE; CAREGIVER; CAREGIVER BURDEN; COGNITIVE DEFECT; DAILY LIFE ACTIVITY; DELUSION; DEMENTIA; DEPRESSION; DIFFUSE LEWY BODY DISEASE; DISEASE SEVERITY; DISRUPTIVE BEHAVIOR; EMOTION; FRONTAL VARIANT FRONTOTEMPORAL DEMENTIA; FUNCTIONAL DISEASE; HEALTH; HEALTH CARE NEED; HUMAN; HUMAN RELATION; HYDROCORTISONE BLOOD LEVEL; MOOD DISORDER; PARKINSON DISEASE; PSYCHOSIS; REVIEW; SALIVA LEVEL; SOCIAL ISOLATION; VISUAL HALLUCINATION; AGED; COPING BEHAVIOR; COST OF ILLNESS; FEMALE; MALE; PSYCHOLOGY;

ADAPTATION, PSYCHOLOGICAL; AGED; CAREGIVERS; COST OF ILLNESS; DEMENTIA; DEPRESSION; FEMALE; HUMANS; MALE;

EID: 85027581749     PISSN: 15233812     EISSN: 15351645     Source Type: Journal    
DOI: 10.1007/s11920-017-0818-2     Document Type: Review

References (76)

1. Alzheimer’s Disease International. World Alzheimer report 2015—the global impact of dementia: an analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International; 2015.
2. World Health Organization. Dementia: a public health priority. Geneva: World Health Organization; 2012.
3. Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18(2):250–67.
4. Roepke SK, Allison M, Von Känel R, Mausbach BT, Chattillion EA, Harmell AL, et al. Relationship between chronic stress and carotid intima-media thickness (IMT) in elderly Alzheimer’s disease caregivers. Stress. 2012;15(2):121–9.
5. Richardson TJ, Lee SJ, Berg-Weger M, Grossberg GT. Caregiver health: health of caregivers of Alzheimer’s and other dementia patients. Curr Psychiatry Rep. 2013;15(7):367.
6. Patterson TL, Grant I. Interventions for caregiving in dementia: physical outcomes. Curr Opin Psychiatry. 2003;16(6):629–33.
7. Sallim AB, Sayampanathan AA, Cuttilan A, Chun-Man HR. Prevalence of mental health disorders among caregivers of patients with Alzheimer disease. J Am Med Dir Assoc. 2015;16(12):1034–41.
8. • Joling KJ, van Marwijk HW, Veldhuijzen AE, van der Horst HE, Scheltens P, Smit F, et al. The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk? Am J Geriatr Psychiatry. 2015;23(3):293–303. This is one of the few studies examining the incidence of anxiety and major depressive disorders in a relatively large sample of caregivers, who were undiagnosable or symptoms free at baseline and were followed for 24 months. Results showed a high cumulative incidence of comorbid anxiety and depressive disorders (one third) and 60% having either disorder. Moreover, those having subthreshold symptoms at baseline were at the highest risk of developing full-blown syndromes later
9. Gaugler JE, Wall MM, Kane RL, Menk JS, Sarsour K, Johnston JA, et al. Does caregiver burden mediate the effects of behavioral disturbances on nursing home admission? Am J Geriatr Psychiatry. 2011;19(6):497–506.
10. Eska K, Graessel E, Donath C, Schwarzkopf L, Lauterberg J, Holle R. Predictors of institutionalization of dementia patients in mild and moderate stages: a 4-year prospective analysis. Dement Geriatr Cogn Dis Extra. 2013;3(1):426–45.
11. Gaugler JE, Mittelman MS, Hepburn K, Newcomer R. Predictors of change in caregiver burden and depressive symptoms following nursing home admission. Psychol Aging. 2009;24(2):385–96.
12. McClendon MJ, Smyth KA, Neundorfer MM. Long-term-care placement and survival of persons with Alzheimer’s disease. J Gerontol B Psychol Sci Soc Sci 2006;61B(4):P220-P227.
13. Zhu CW, Scarmeas N, Ornstein K, Albert M, Brandt J, Blacker D, et al. Health-care use and cost in dementia caregivers: longitudinal results from the Predictors Caregiver Study. Alzheimers Dement. 2015;11(4):444–54.
14. Cheng S-T, Lam LCW, Kwok T, Ng NSS, Fung AWT. Self-efficacy is associated with less burden and more gains from behavioral problems of Alzheimer’s disease in Hong Kong Chinese caregivers. Gerontologist. 2013;53(1):71–80.
15. Pinquart M, Sörensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2003;58B(2):P112–28.
16. Cheng S-T, Lam LCW, Kwok T. Neuropsychiatric symptom clusters of Alzheimer’s disease in Hong Kong Chinese: correlates with caregiver burden and depression. Am J Geriatr Psychiatry. 2013;21(10):1029–37.
17. Givens JL, Mezzacappa C, Heeren T, Yaffe K, Fredman L. Depressive symptoms among dementia caregivers: role of mediating factors. Am J Geriatr Psychiatry. 2014;22(5):481–8.
18. Hughes TB, Black BS, Albert M, Gitlin LN, Johnson DM, Lyketsos CG, et al. Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs. Int Psychogeriatr. 2014;26(11):1875–83.
19. Dauphinot V, Delphin-Combe F, Mouchoux C, Dorey A, Bathsavanis A, Makaroff Z, et al. Risk factors of caregiver burden among patients with Alzheimer’s disease or related disorders: a cross-sectional study. J Alzheimers Dis. 2015;44(3):907–16.
20. Hasegawa N, Hashimoto M, Koyama A, Ishikawa T, Yatabe Y, Honda K, et al. Patient-related factors associated with depressive state in caregivers of patients with dementia at home. J Am Med Dir Assoc. 2014;15(5):371.e15–8.
21. Mausbach BT, Chattillion EA, Roepke SK, Patterson TL, Grant I. A comparison of psychosocial outcomes in elderly Alzheimer caregivers and noncaregivers. Am J Geriatr Psychiatry. 2013;21(1):5–13.
22. Gaugler JE, Kane RL, Kane RA, Newcomer R. The longitudinal effects of early behavior problems in the dementia caregiving career. Psychol Aging. 2005;20(1):100–16.
23. Gaugler JE, Davey A, Pearlin LI, Zarit SH. Modeling caregiver adaptation over time: the longitudinal impact of behavior problems. Psychol Aging. 2000;15(3):437–50.
24. Gaugler JE, Wall MM, Kane RL, Menk JS, Sarsour K, Johnston JA, et al. The effects of incident and persistent behavioral problems on change in caregiver burden and nursing home admission of persons with dementia. Med Care. 2010;48(10):875–83.
25. Shim SH, Kang HS, Kim JH, Kim DK. Factors associated with caregiver burden in dementia: 1-year follow-up study. Psychiatry Investig. 2016;13(1):43–9.
26. Bang J, Spina S, Miller BL. Frontotemporal dementia. Lancet. 2015;386(10004):1672–82.
27. Wong C, Merrilees J, Ketelle R, Barton C, Wallhagen M, Miller B. The experience of caregiving: differences between behavioral variant of frontotemporal dementia and Alzheimer disease. Am J Geriatr Psychiatry. 2012;20(8):724–8.
28. Mioshi E, Foxe D, Leslie F, Savage S, Hsieh S, Miller L, et al. The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease. Alzheimer Dis Assoc Disord. 2013;27(1):68–73.
29. Boutoleau-Bretonnière C, Vercelletto M, Volteau C, Renou P, Lamy E. Zarit Burden Inventory and activities of daily living in the behavioral variant of frontotemporal dementia. Dement Geriatr Cogn Disord. 2008;25(3):272–7.
30. de Vugt ME, Riedijk SR, Aalten P, Tibben A, van Swieten JC, Verhey FRJ. Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer’s disease and frontotemporal dementia. Dement Geriatr Cogn Disord. 2006;22(1):35–41.
31. de Vugt ME, Nicolson NA, Aalten P, Lousberg R, Jolle J, Verhey FRJ. Behavioral problems in dementia patients and salivary cortisol patterns in caregivers. J Neuropsychiatry Clin Neurosci. 2005;17(2):201–7.
32. Savla J, Roberto KA, Blieszner R, Cox M, Gwazdauskas F. Effects of daily stressors on the psychological and biological well-being of spouses of persons with mild cognitive impairment. J Gerontol B Psychol Sci Soc Sci. 2011;66B(6):653–64.
33. Savla J, Granger DA, Roberto KA, Davey A, Blieszner R, Gwazdauskas F. Cortisol, alpha amylase, and daily stressors in spouses of persons with mild cognitive impairment. Psychol Aging. 2013;28(3):666–79.
34. National Alliance for Caregiving and AARP. Caregiving in the U.S. 2015. Bethesda, MD: National Alliance for Caregiving and AARP; 2015.
35. Gauthier S, Cummings J, Ballard O, Brodaty H, Grossberg G, Robert P, et al. Management of behavioral problems in Alzheimer’s disease. Int Psychogeriatr. 2010;22(3):346–72.
36. Craig D, Mirakhur A, Hart DJ, Mcllroy SP, Passmore AP. A cross-sectional study of neuropsychiatric symptoms in 435 patients with Alzheimer’s disease. Am J Geriatr Psychiatry. 2005;13(6):460–8.
37. Garre-Olmo J, Vilalta-Franch J, Calvó-Perxas L, Turró-Garriga O, Conde-Sala L, López-Pousa S. A path analysis of patient dependence and caregiver burden in Alzheimer’s disease. Int Psychogeriatr. 2016;28(7):1133–41.
38. Haro JM, Kahle-Wrobleski K, Bruno G, Belger M, Dell’Agnello G, Dodel R, et al. Analysis of burden in caregivers of people with Alzheimer’s disease using self-report and supervision hours. J Nutr Health Aging. 2014;18(7):677–84.
39. Liu J, Wang L, Tan J, Ji P, Gauthier S, Zhang Y, et al. Burden, anxiety and depression in caregivers of veterans with dementia in Beijing. Arch Gerontol Geriatr. 2012;55(3):560–3.
40. Georges J, Jansen S, Jackson J, Meyrieux A, Sadowska A, Selmes M. Alzheimer’s disease in real life—the dementia carer’s survey. Int J Geriatr Psychiatry. 2008;23(5):546–51.
41. Park M, Sung M, Kim SK, Kim S, Lee DY. Multidimensional determinants of family caregiver burden in Alzheimer’s disease. Int Psychogeriatr. 2015;27(8):1355–64.
42. D’Onofrio G, Sancarlo D, Addante F, Ciccone F, Cascavilla L, Paris F, et al. Caregiver burden characterization in patients with Alzheimer’s disease or vascular dementia. Int J Geriatr Psychiatry. 2015;30(9):891–9.
43. Walker Z, Possin KL, Boeve BF, Aarsland D. Lewy body dementias. Lancet. 2015;386(10004):1683–97.
44. Svendsboe E, Terum T, Testad I, Aarsland D, Ulstein I, Corbett A, et al. Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer’s disease. Int J Geriatr Psychiatry. 2016;31(9):1075–83.
45. Leggett AN, Zarit S, Taylor A, Galvin JE. Stress and burden among caregivers of patients with Lewy body dementia. Gerontologist. 2011;51(1):76–85.
46. • Fauth EB, Femia EE, Zarit SH. Resistiveness to care during assistance with activities of daily living in non-institutionalized persons with dementia: associations with informal caregivers’ stress and well-being. Aging Ment Health. 2016;20(9):888–98. An innovative aspect of this study was the measure of behavior problems in the context of receiving assistance in eating, bathing, and dressing. Results showed that such behavior problems that resist caregiver’s attempts to provide assistance explained the association between the levels of impairments in these three ADL areas and caregiver burden and depression
47. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–55.
48. • Bass DM, Judge KS, Snow AL, Wilson NL, Looman WJ, Mc Carthy C, et al. Negative caregiving effects among caregivers of veterans with dementia. Am J Geriatr Psychiatry. 2012;20(3):239–47. This well-crafted study provided a rather comprehensive analysis of the antecedent factors and outcomes in the caregiving stress process, showing how different care demands (i.e., functional/cognitive/behavioral symptoms and comorbid chronic conditions) and contextual factors are related to different aspects of caregiver burden (i.e., emotional strain, physical strain, social isolation, and strained relationship with the care-recipient) as well as depressive symptoms
49. Fauth EB, Gibbons A. Which behavioral and psychological symptoms of dementia are the most problematic? Variability by prevalence, intensity, distress ratings, and associations with caregiver depressive symptoms. Int J Geriatr Psychiatry. 2014;29(3):263–71.
50. Huang S, Lee M, Liao Y, Wang W, Lai T. Caregiver burden associated with behavioral and psychological symptoms of dementia (BPSD) in Taiwanese elderly. Arch Gerontol Geriatr. 2012;55(1):55–9.
51. Kaufer DI, Cummings JL, Christine D, Bray T, Castellon S, Masterman D, et al. Assessing the impact of neuropsychiatric symptoms in Alzheimer’s disease: the Neuropsychiatric Inventory Caregiver Distress Scale. J Am Geriatr Soc. 1998;46(2):210–5.
52. Teri L, Truax P, Logsdon R, Uomoto J, Zarit S, Vitaliano PP. Assessment of behavioral problems in dementia: the Revised Memory and Behavior Problems Checklist. Psychol Aging. 1992;7(4):622–31.
53. Garre-Olmo J, López-Pousa S, Vilalta-Franch J, de Gracia Blanco M, Vilarrasa AB. Grouping and trajectories of the neuropsychiatric symptoms in patients with Alzheimer’s disease, part I: symptom clusters. J Alzheimers Dis. 2010;22(4):1157–67.
54. Kang HS, Ahn IS, Kim JH, Kim DK. Neuropsychiatric symptoms in Korean patients with Alzheimer’s disease: exploratory factor analysis and confirmatory factor analysis of the Neuropsychiatric Inventory. Dement Geriatr Cogn Disord. 2010;29(1):82–7.
55. Spalletta G, Musicco M, Padovani A, Rozzini L, Perri R, Fadda L, et al. Neuropsychiatric symptoms and syndromes in a large cohort of newly diagnosed, untreated patients with Alzheimer disease. Am J Geriatr Psychiatry. 2010;18(11):1026–35.
56. Vilalta-Franch J, López-Pousa S, Turon-Estrada A, Lozano-Gallego M, Hernàndez-Ferràndiz M, Pericot-Nierga I, et al. Syndromic association of behavioral and psychological symptoms of dementia in Alzheimer disease and patient classification. Am J Geriatr Psychiatry. 2010;18(5):421–32.
57. Cheng S-T, Kwok T, Lam LCW. Neuropsychiatric symptom clusters of Alzheimer’s disease in Hong Kong Chinese: prevalence and confirmatory factor analysis of the Neuropsychiatric Inventory. Int Psychogeriatr. 2012;24(9):1465–73.
58. Ornstein K, Gaugler JE, Devanand DP, Scarmeas N, Zhu C, Stern Y. The differential impact of unique behavioral and psychological symptoms for the dementia caregiver: how and why do patients’ individual symptom clusters impact caregiver depressive symptoms? Am J Geriatr Psychiatry. 2013;21(12):1277–86.
59. Ornstein KA, Gaugler JE, Devanand DP, Scarmeas N, Zhu CW, Stern Y. Are there sensitive time periods for dementia caregivers? The occurrence of behavioral and psychological symptoms in the early stages of dementia. Int Psychogeriatr. 2013;25(9):1453–62.
60. Aarsland D, Brønnick K, Ehrt U, De Deyn PP, Tekin S, Emre M, et al. Neuropsychiatric symptoms in patients with Parkinson’s disease and dementia: frequency, profile and associated care giver stress. J Neurol Neurosurg Psychiatry. 2007;78(1):36–42.
61. Oh Y, Lee JE, Lee PH, Kim J. Neuropsychiatric symptoms in Parkinson’s disease dementia are associated with increased caregiver burden. J Mov Disord. 2015;8(1):26–32.
62. Hsieh S, Irish M, Daveson N, Hodges JR, Piguet O. When one loses empathy: its effect on carers of patients with dementia. J Geriatr Psychiatry Neurol. 2013;26(3):174–84.
63. Merrilees J, Dowling GA, Hubbard E, Mastick J, Ketelle R, Miller BL. Characterization of apathy in persons with frontotemporal dementia and the impact on family caregivers. Alzheimer Dis Assoc Disord. 2013;27(1):62–7.
64. Brioschi Guevara A, Knutson KM, Wassermann EM, Pulaski S, Grafman J, Krueger F. Theory of mind impairment in patients with behavioural variant fronto-temporal dementia (bv-FTD) increases caregiver burden. Age Ageing. 2015;44(5):891–5.
65. Wong CC, Wallhagen MI. Frontotemporal dementia: the impact of patient behavioral symptoms on the physical and mental health of family caregivers. Dement Geriatr Cogn Dis Extra. 2012;2(1):516–28.
66. Massimo L, Powers C, Moore P, Vesely L, Avants B, Gee J, et al. Neuroanatomy of apathy and disinhibition in frontotemporal lobar degeneration. Dement Geriatr Cogn Disord. 2009;27(1):96–104.
67. Perry RJ, Miller BL. Behavior and treatment in frontotemporal dementia. Neurology. 2001;56(11):S46–51.
68. Mourik JC, Rosso SM, Niermeijer MF, Duivenvoorden HJ, Van Swieten JC, Tibben A. Frontotemporal dementia: behavioral symptoms and caregiver distress. Dement Geriatr Cogn Disord. 2004;18(3–4):299–306.
69. Khoo SA, Chen TY, Ang YH, Yap P. The impact of neuropsychiatric symptoms on caregiver distress and quality of life in persons with dementia in an Asian tertiary hospital memory clinic. Int Psychogeriatr. 2013;25(12):1991–9.
70. Robert PH, Verhey FRJ, Byrne EJ, Hurt C, De Deyn PP, Nobili F, et al. Grouping for behavioral and psychological symptoms in dementia: clinical and biological aspects. Consensus paper of the European Alzheimer disease consortium. Eur Psychiatry. 2005;20(7):490–6.
71. Lyketsos CG, Steinberg M, Tschanz JT, Norton MC, Steffens DC, Breitner JCS. Mental and behavioral disturbances in dementia: findings from the Cache County study on memory in aging. Am J Psychiatry. 2000;157(5):708–14.
72. Lee DR, McKeith I, Mosimann U, Ghosh-Nodyal A, Thomas AJ. Examining carer stress in dementia: the role of subtype diagnosis and neuropsychiatric symptoms. Int J Geriatr Psychiatry. 2013;28(2):135–41.
73. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30(5):583–94.
74. Harmell AL, Chattillion EA, Roepke SK, Mausbach BT. A review of the psychobiology of dementia caregiving: a focus on resilience factors. Curr Psychiatry Rep. 2011;13(3):219–24.
75. •• Cheng S-T, Fung HH, Chan WC, LCW L. Short-term effects of a gain-focused reappraisal intervention for dementia caregivers: a double-blind cluster-randomized controlled trial. Am J Geriatr Psychiatry. 2016;24(9):740–50. This is a randomized controlled trial of an innovative approach to promote positive aspects of caregiving and self-efficacy, thereby reducing burden and depressive symptoms, through thought modification and alternative thinking styles. The results suggest that the way caregivers think about their situations is as important as care-recipient symptoms in generating stress, and offers a perspective that is complementary to the focus of this review on care demands
76. Cheng S-T, Mak EPM, Fung HH, Kwok T, Lee DTF, Lam LCW. Benefit-finding and effect on caregiver depression: a double-blind randomized controlled trial. J Consult Clin Psychol. 2017;85(5):521–9.