Changes in caregiver burden and health-related quality of life of informal caregivers of older people with Dementia: Evidence from the European RightTimePlaceCare prospective cohort study

Journal of Advanced Nursing

Volumn 71, Issue 6, 2015, Pages 1378-1391

  Bleijlevens, Michel H C ^a   Stolt, Minna ^b,j   Stephan, Astrid ^c   Zabalegui, Adelaida ^d   Saks, Kai ^e   Sutcliffe, Caroline ^f   Lethin, Connie ^g,i   Soto, Maria E ^h   Zwakhalen, Sandra M G ^a   Hamers, Jan P H ^a   Afram, Basema ^a   Beerens, Hanneke C ^a   Verbeek, Hilde ^a   Ruwaard, Dirk ^a   Ambergen, Ton ^a   Hallberg, Ingalill Rahm ⁱ   Emilsson, Ulla Melin ⁱ   Karlsson, Staffan ^d   Bokberg, Christina ⁱ   Challis, David ^f   Jolley, David ^f   Tucker, Sue ^f   Bowns, Ian ^f   Roe, Brenda ^f   Burns, Alistair ^f   Leino Kilpi, Helena ^j   Koskenniemi, Jaana ^j   Suhonen, Riitta ^j   Viitanen, Matti ^j   Arve, Seija ^j   Hupli, Maija ^j   Tiit, Ene Margit ^e   Leibur, Jelena ^e   Raamat, Katrin ^e   Armolik, Angelika ^e   Toivari, Teija Tuula Marjatta ^e   Navarro, Montserrat ^d   Cabrera, Esther ^d   Risco, Ester ^d   Alvira, Carme ^d   Farre, Marta ^d   Miguel, Susana ^d   Soto, Maria ^k   Milhet, Agathe ^k   Sourdet, Sandrine ^k   Gillette, Sophie ^k   Vellas, Bruno ^k   more..

^a MAASTRICHT UNIVERSITY   (Netherlands)

^b UNIVERSITY OF TURKU   (Finland)

^c UNIVERSITY OF WITTEN HERDECKE   (Germany)

^d HOSPITAL CLÍNIC   (Spain)

^e UNIVERSITY OF TARTU   (Estonia)

^f UNIVERSITY OF MANCHESTER   (United Kingdom)

^g LUND UNIVERSITY   (Sweden)

^h TOULOUSE UNIVERSITY HOSPITAL   (France)

ⁱ LUND UNIVERSITY   (Sweden)

^j UNIVERSITY OF TURKU   (Finland)

^k UNIVERSITÉ DE TOULOUSE   (France)

more..

Author keywords

Burden; Dementia; Health related quality of life; Home care nursing; Informal caregivers; Institutional care; Older people

Indexed keywords

CAREGIVER; DEMENTIA; EUROPE; HUMAN; NURSING; PSYCHOLOGY; QUALITY OF LIFE;

CAREGIVERS; DEMENTIA; EUROPE; HUMANS; QUALITY OF LIFE;

EID: 84929317827     PISSN: 03092402     EISSN: 13652648     Source Type: Journal    
DOI: 10.1111/jan.12561     Document Type: Article

References (64)

1. Almberg B., Grafstrom M., Krichbaum K. & Winblad B. (2000) The interplay of institution and family caregiving: relations between patient hassles, nursing home hassles and care-givers' burnout. International Journal of Geriatric Psychiatry 15(10), 931-939.
2. Andren S. & Elmstahl S. (2007) Relationships between income, subjective health and caregiver burden in care-givers of people with dementia in group living care: a cross-sectional community-based study. International Journal of Nursing Studies 44(3), 435-446.
3. Argimon J.M., Limon E., Vila J. & Cabezas C. (2005) Health-related quality-of-life of care-givers as a predictor of nursing-home placement of patients with dementia. Alzheimer Disease and Associated Disorders 19(1), 41-44.
4. Bond M.J., Clark M.S. & Davies S. (2003) The quality of life of spouse dementia care-givers: changes associated with yielding to formal care and widowhood. Social Science & Medicine 57(12), 2385-2395.
5. Brazier J., Jones N. & Kind P. (1993) Testing the validity of the Euroqol and comparing it with the SF-36 health survey questionnaire. Quality of Life Research 2(3), 169-180.
6. Brodaty H. & Donkin M. (2009) Family care-givers of people with dementia. Dialogues in Clinical Neuroscience 11(2), 217-228.
7. Brouwer W.B., van Exel N.J., van de Berg B., Dinant H.J., Koopmanschap M.A. & van den Bos G.A. (2004) Burden of caregiving: evidence of objective burden, subjective burden and quality of life impacts on informal care-givers of patients with rheumatoid arthritis. Arthritis and Rheumatism 51(4), 570-577.
8. Bullock R. (2004) The needs of the caregiver in the long-term treatment of Alzheimer disease. Alzheimer Disease and Associated Disorders 18(Suppl 1), S17-S23.
9. Caron C.D., Ducharme F. & Griffith J. (2006) Deciding on institutionalization for a relative with dementia: the most difficult decision for care-givers. Canadian Journal on Aging = La revue canadienne du vieillissement 25(2), 193-205.
10. Davies C.H. & Nolan M.F. (2003) Making the best of things: relatives experiences of decisions about care-home entry. Ageing and Society 23, 429-450.
11. Elmstahl S., Ingvad B. & Annerstedt L. (1998) Family caregiving in dementia: prediction of caregiver burden 12 months after relocation to group-living care. International Psychogeriatrics 10(2), 127-146.
12. European Commission (2005) Long-term Care in the European Union. European Commission, Brussel, Belgium.
13. Gaugler J.E., Roth D.L., Haley W.E. & Mittelman M.S. (2008) Can counseling and support reduce burden and depressive symptoms in care-givers of people with Alzheimer's disease during the transition to institutionalization? Results from the New York University caregiver intervention study. Journal of the American Geriatrics Society 56(3), 421-428.
14. Gaugler J.E., Mittelman M.S., Hepburn K. & Newcomer R. (2009) Predictors of change in caregiver burden and depressive symptoms following nursing home admission. Psychology and Aging 24(2), 385-396.
15. Gaugler J.E., Mittelman M.S., Hepburn K. & Newcomer R. (2010) Clinically significant changes in burden and depression among dementia care-givers following nursing home admission. BMC Medicine 8, 85.
16. Given C.W., Given B., Stommel M., Collins C., King S. & Franklin S. (1992) The caregiver reaction assessment (CRA) for care-givers to persons with chronic physical and mental impairments. Research in Nursing & Health 15(4), 271-283.
17. Goldberg D.P., Gater R., Sartorius N., Ustun T.B., Piccinelli M., Gureje O. & Rutter C. (1997) The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychological Medicine 27(1), 191-197.
18. Grasel E. (2002) When home care ends - Changes in the physical health of informal care-givers caring for dementia patients: a longitudinal study. Journal of the American Geriatrics Society 50(5), 843-849.
19. Gustavsson A., Jonsson L., Rapp T., Reynish E., Ousset P.J., Andrieu S., Cantet C., Winblad B., Vellas B. & Wimo A. (2010) Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study. The Journal of Nutrition, Health & Aging, 14(8), 648-654.
20. Hallberg I., Leino-Kilpi H., Meyer G., Raamat K., Martin M., Sutcliffe C., Zabalegui A., Zwakhalen S. & Karlsson S. (2013) Dementia Care in eight European countries: developing a mapping system to explore systems. Journal of Nursing Scholarship 45(4), 412-424.
21. Hounsome N., Orrell M. & Edwards R.T. (2011) EQ-5D as a quality of life measure in people with dementia and their carers: evidence and key issues. Value in Health 14, 390e.
22. IMSERSO (2005) Cuidados a las personas mayores en los hogares españoles. El entorno familiar. Imserso, Madrid.
23. Jönsson L., Jönhagen M.E., Kilander L., Soininen H., Hallikainen M., Waldemar G., Nygaard H., Andreasen N., Winblad B. & Wimo A. (2006) Determinants of costs of care for patients with Alzheimer's disease. International Journal of Geriatric Psychiatry 21, 449-459.
24. Lieberman M.A. & Fisher L. (2001) The effects of nursing home placement on family care-givers of patients with Alzheimer's disease. The Gerontologist 41(6), 819-826.
25. Makowska Z., Merecz D., Moscicka A. & Kolasa W. (2002) The validity of general health questionnaires, GHQ-12 and GHQ-28, in mental health studies of working people. International Journal of Occupational Medicine and Environmental Health 15(4), 353-362.
26. Malhotra R., Chan A., Malhotra C. & Ostbye T. (2012) Validity and reliability of the Caregiver Reaction Assessment scale among primary informal care-givers for older persons in Singapore. Aging & Mental Health 16, 1004-1015.
27. Mapi Research Institute (2002) Linguistic Validation of a Patient Reported Outcomes Measure. Mapi Research Institute, Lyon.
28. Markowitz J.S., Gutterman E.M., Sadik K. & Papadopoulos G. (2003) Health-related quality of life for care-givers of patients with Alzheimer disease. Alzheimer Disease and Associated Disorders 17(4), 209-214.
29. Matsuda O., Hasebe N., Ikehara K., Futatsuya M. & Akahane N. (1997) Longitudinal study of the mental health of care-givers caring for elderly patients with dementia: effect of institutional placement on mental health. Psychiatry and Clinical Neurosciences 51(5), 289-293.
30. Mausbach B.T., Aschbacher K., von Patterson T.L., Kanel R., Dimsdale J.E., Mills P.J., Ancoli-Israel S. & Grant I. (2007) Effects of placement and bereavement on psychological well-being and cardiovascular risk in Alzheimer's care-givers: a longitudinal analysis. Journal of Psychosomatic Research 62(4), 439-445.
31. Meiland F.J., Danse J.A., Wendte J.F., Klazinga N.S. & Gunning-Schepers L.J. (2001) Caring for relatives with dementia-caregiver experiences of relatives of patients on the waiting list for admission to a psychogeriatric nursing home in The Netherlands. Scandinavian Journal of Public Health 29(2), 113-121.
32. Ministry of Health and Social Affairs (2007) Health and Medical Care in Sweden. Fact sheet no 16. Government Offices of Sweden, Stockholm.
33. Mioshi E., Foxe D., Leslie F., Savage S., Hsieh S., Miller L., Hodges J.R. & Piguet O. (2013) The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease. Alzheimer Disease and Associated Disorders 27(1), 68-73.
34. Nijboer C., Triemstra M., Tempelaar R., Sanderman R. & Van den Bos G. (1999) Measuring both negative and positive reactions to giving care to cancer patients: psychometric qualities of the Caregiver Reaction Assessment (CRA). Social Science and Medicine 48, 1259-1270.
35. Nikzad-Terhune K.A., Anderson K.A., Newcomer R. & Gaugler J.E. (2010) Do trajectories of at-home dementia caregiving account for burden after nursing home placement? A growth curve analysis. Social Work in Health Care 49(8), 734-752.
36. Paat G. & Merilain M. (2010) The Long-term Care System for the Elderly in Estonia. Retrieved from http://www.ancien-longtermcare.eu/sites/default/files/ENEPRI%20_ANCIEN_%20RR%20No%2075%20Estonia%20-%20Edited%20final.pdf on 8 March 2014.
37. 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(5), 583-594.
38. Piccinelli M., Bisoffi G., Bon M.G., Cunico L. & Tansella M. (1993) Validity and test-retest reliability of the Italian version of the 12-item General Health Questionnaire in general practice: a comparison between three scoring methods. Comprehensive Psychiatry 34(3), 198-205.
39. Riedel M. & Kraus M. (2011) Informal Care Provision in Europe: Regulations and Profile of Providers. ENEPRI Research Report. Retrieved from http://aei.pitt.edu/32970/1/RR_No_96__ANCIEN__Regulation_and_Profile_of_Providers_of_Informal_Care.pdf. on 8 March 2014.
40. 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 & Mental Health 10(2), 107-111.
41. Schulz R., Belle S.H., Czaja S.J., McGinnis K.A., Stevens A. & Zhang S. (2004) Long-term care placement of dementia patients and caregiver health and well-being. JAMA 292(8), 961-967.
42. Seng B.K., Luo N., Ng W.Y., Lim J., Chionh H.L., Goh J. & Yap P. (2010) Validity and reliability of the Zarit Burden interview in assessing caregiving burden. Annals Academy of Medicine Singapore 39, 758-763.
43. Serrano-Aguilar P.G., Lopez-Bastida J. & Yanes-Lopez V. (2006) Impact on health-related quality of life and perceived burden of informal care-givers of individuals with Alzheimer's disease. Neuroepidemiology 27(3), 136-142.
44. Slaughter S., Cole D., Jennings E. & Reimer M.A. (2007) Consent and assent to participate in research from people with dementia. Nursing Ethics 14, 27-40.
45. Stephan A., Mayer H., Renom Guiteras A. & Meyer G. (2013) Validity, reliability and feasibility of the German version of the Caregiver Reaction Assessment scale (G-CRA): a validation study. International Psychogeriatrics 25(10), 1621-1628.
46. Strang V.R., Koop P.M., Dupuis-Blanchard S., Nordstrom M. & Thompson B. (2006) Family care-givers and transition to long-term care. Clinical Nursing Research 15(1), 27-45.
47. Sury L., Burns K. & Brodaty H. (2013) Moving in: adjustment of people living with dementia going into a nursing home and their families. International Psychogeriatrics 25(6), 867-876.
48. The Organisation for Economic Co-operation and Development (2005) The OECD Health Project. Long-term Care for Older People. OECD Publishing, Paris. Retrieved from http://www.euro.centre.org/data/1216815268_61772.pdf on 8 March 2014.
49. Tornatore J.B. & Grant L.A. (2002) Burden among family care-givers of persons with Alzheimer's disease in nursing homes. The Gerontologist 42(4), 497-506.
50. Tornatore J.B. & Grant L.A. (2004) Family caregiver satisfaction with the nursing home after placement of a relative with dementia. Journals of Gerontology. Series B, Psychological Sciences and Social Sciences 59(2), S80-S88.
51. Torti F.M. Jr, Gwyther L.P., Reed S.D., Friedman J.Y. & Schulman K.A. (2004) A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Disease and Associated Disorders 18(2), 99-109.
52. Triantafillou J., Naiditch M., Repkova K., Stiehr K., Carretero S. & Emilsson T. (2010) Informal Care in the Long-term Care System: European Overview Paper. Interlinks, EU Report Seventh Framework Programme, Athens/Vienna. Retrieved from http://interlinks.euro.centre.org/sites/default/files/WP5_Overview_FINAL_04_11.pdf on 8 March 2014.
53. Varona R., Saito T., Takahashi M. & Kai I. (2007) Caregiving in the Philippines: a quantitative survey on adult-child care-givers' perceptions of burden, stressors and social support. Archives of Gerontology and Geriatrics 45(1), 27-41.
54. Vellas B., Hausner L., Frolich L., Cantet C., Gardette V., Reynish E., Gillette S., Aguera-Morales E., Auriacombe S., Boada M., Bullock R., Byrne J., Camus V., Cherubini A., Eriksdotter-Jonhagen M., Frisoni G.B., Hasselbalch S., Jones R.W., Martinez-Lage P., Rikkert M.O., Tsolaki M., Ousset P.J., Pasquier F., Ribera-Casado J.M., Rigaud A.S., Robert P., Rodriguez G., Salmon E., Salva A., Scheltens P., Schneider A., Sinclair A., Spiru L., Touchon J., Zekry D., Winblad B. & Andrieu S. (2012) Progression of Alzheimer disease in Europe: data from the European ICTUS study. Current Alzheimer Research 9(8), 902-912.
55. Verbeek H., Meyer G., Leino-Kilpi H., Zabalegui A., Hallberg I.R., Saks K., Soto M.E., Challis D., Sauerland D. & Hamers J.P. (2012) A European study investigating patterns of transition from home care towards institutional dementia care: the protocol of a RightTimePlaceCare study. BMC Public Health 12, 68.
56. Werneke U., Goldberg D.P., Yalcin I. & Üstün B.T. (2000) The stability of the factor structure of the General Health Questionnaire. Psychological Medicine 30, 823-829.
57. Wimo A., Wetterholm A.L., Mastey V. & Winblad B. (1998) Evaluation of the resource utilization and caregiver time in Anti-dementia drug trials-a quantitative battery. In The Health Economics of Dementia (Wimo A.J.B., Karlsson G. & Winblad B., eds), John Wiley and Sons, London, pp. 465-499.
58. Wimo A., Jonsson L. & Zbrozek A. (2010) The Resource Utilization in Dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. The Journal of Nutrition, Health & Aging 14(8), 685-690.
59. Wimo A., Gustavsson A., Jonsson L., Winblad B., Hsu M.A. & Gannon B. (2013) Application of Resource Utilization in Dementia (RUD) instrument in a global setting. Alzheimer's & Dementia: The Journal of the Alzheimer's Association, 9(4), 429-435 e17.
60. Wolfs C.A., Kessels A., Dirksen C.D., Severens J.L. & Verhey F.R. (2008) Integrated multidisciplinary diagnostic approach for dementia care: randomised controlled trial. British Journal of Psychiatry 192, 300-305.
61. Yeh S.H., Johnson M.A. & Wang S.T. (2002) The changes in caregiver burden following nursing home placement. International journal of nursing studies 39(6), 591-600.
62. Yurtsever S., Özge A., Kara A., Yandim A., Kalav S. & Yeşil P. (2013) The relationship between care burden and social support in Turkish Alzheimer patients family care-givers: cross-sectional study. Journal of Nursing Education and Practice 3(9), 1-12.
63. Zarit S.H. & Whitlatch C.J. (1992) Institutional placement - phases of the transition. The Gerontologist 32(5), 665-672.
64. Zarit S.H., Reever K.E. & Bach-Peterson J. (1980) Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist 20(6), 649-655.