Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

Journal of the American Medical Directors Association

Volumn 15, Issue 2, 2014, Pages 108-116

  Afram, Basema ^a   Stephan, Astrid ^b   Verbeek, Hilde ^a   Bleijlevens, Michel H C ^a   Suhonen, Riitta ^c   Sutcliffe, Caroline ^d   Raamat, Katrin ^e   Cabrera, Esther ^f   Soto, Maria E ^g   Hallberg, Ingalill R ^h   Meyer, Gabriele ^b,i   Hamers, Jan P H ^a  

^a MAASTRICHT UNIVERSITY   (Netherlands)

^b UNIVERSITY OF WITTEN HERDECKE   (Germany)

^c UNIVERSITY OF TURKU   (Finland)

^d UNIVERSITY OF MANCHESTER   (United Kingdom)

^e UNIVERSITY OF TARTU   (Estonia)

^f School of Health Science   (Spain)

^g TOULOUSE UNIVERSITY HOSPITAL   (France)

^h LUND UNIVERSITY   (Sweden)

ⁱ MARTIN LUTHER UNIVERSITY HALLE WITTENBERG   (Germany)

Author keywords

Dementia; Family caregivers; Informal caregivers; Reasons for institutionalization

Indexed keywords

ADULT; ARTICLE; CAREGIVER; CAREGIVER BURDEN; COGNITION; CROSS-SECTIONAL STUDY; DEMENTIA; ESTONIA; FEMALE; FINLAND; FRANCE; GERMANY; HUMAN; INSTITUTIONALIZATION; LONG TERM CARE; MALE; MIDDLE AGED; NETHERLANDS; OPEN ENDED QUESTIONNAIRE; SEMI STRUCTURED INTERVIEW; SPOUSE; SWEDEN; UNITED KINGDOM;

DEMENTIA; FAMILY CAREGIVERS; INFORMAL CAREGIVERS; REASONS FOR INSTITUTIONALIZATION;

ACCIDENTAL FALLS; ADULT CHILDREN; BEHAVIOR; CAREGIVERS; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; DEMENTIA; DISABLED PERSONS; EUROPE; FEMALE; HUMANS; INSTITUTIONALIZATION; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; NURSING HOMES; SOCIAL SUPPORT; SPOUSES;

EID: 84893017603     PISSN: 15258610     EISSN: 15389375     Source Type: Journal    
DOI: 10.1016/j.jamda.2013.09.012     Document Type: Article

References (39)

1. Caron C.D., Ducharme F., Griffith J. Deciding on institutionalization for a relative with dementia: The most difficult decision for caregivers. Can J Aging 2006, 25:193-205.
2. Gaugler J.E., Pearlin L.I., Leitsch S.A., Davey A. Relinquishing in-home dementia care: Difficulties and perceived helpfulness during the nursing home transition. Am J Alzheimers Dis Other Demen 2001, 16:32-42.
3. Wendler D., Rid A. Systematic review: The effect on surrogates of making treatment decisions for others. Ann Intern Med 2011, 154:336-346.
4. Tilse C. Meaning as outcome: Understanding the complexity of decision-making around residential placement in aged care. Australian Social Work 2000, 53:15-19.
5. Dellasega C., Nolan M. Admission to care: Facilitating role transition amongst family carers. J Clin Nurs 1997, 6:443-451.
6. Nolan M., Dellasega C. 'I really feel I've let him down': Supporting family carers during long-term care placement for elders. J Adv Nurs 2000, 31:759-767.
7. Thomson S., Foubister T., Mossialos E. Financing health care in the European Union: Challenges and policy responses 2009, World Health Organization, Copenhagen.
8. Vellas B., Hausner L., Frolich L., et al. Progression of Alzheimer Disease in Europe: Data from the European ICTUS Study. Curr Alzheimer Res 2012, 9:902-912.
9. Alzheimer Europe. Country comparisons. Available at. Accessed March 26th, 2013. http://www.alzheimer-europe.org/EN/Policy-in-Practice2/Country-comparisons.
10. World Alzheimer Report 2009 2009, Alzheimer 's Disease International, Alzheimer 's Disease International, London.
11. Caron C.D., Bowers B.J. Deciding whether to continue, share, or relinquish caregiving: Caregiver views. Qual Health Res 2003, 13:1252-1271.
12. Buhr G.T., Kuchibhatla M., Clipp E.C. Caregivers' reasons for nursing home placement: Clues for improving discussions with families prior to the transition. Gerontologist 2006, 46:52-61.
13. Luppa M., Luck T., Braehler E., et al. Prediction of institutionalisation in dementia: A systematic review. Dement Geriatr Cogn Disord 2008, 26:65-78.
14. Gaugler J.E., Yu F., Krichbaum K., Wyman J.F. Predictors of nursing home admission for persons with dementia. Med Care 2009, 47:191-198.
15. Yaffe K., Fox P., Newcomer R., et al. Patient and Caregiver characteristics and nursing home placement in patients with dementia. JAMA 2002, 287:2090-2097.
16. Drame M., Lang P.O., Jolly D., et al. Nursing home admission in elderly subjects with dementia: Predictive factors and future challenges. J Am Med Dir Assoc 2012, 13:83.e17-83.e20.
17. Thomas P., Ingrand P., Lalloue F., et al. Reasons of informal caregivers for institutionalising dementia patients previously living at home: The Pixel study. Int J Geriatr Psychiatry 2004, 19:127-135.
18. RightTimePlaceCare. Accessed May 1, 2013. http://www.righttimeplacecare.eu/.
19. Verbeek H., Meyer G., Leino-Kilpi H., et al. A European study investigating patterns of transition from home care towards institutional dementia care: The protocol of a RightTimePlaceCare study. BMC Public Health 2012, 12:68.
20. The OECD Health Project Long term care for older people 2005, OECD, Organisation for Economic Cooperation and Development, Paris.
21. Health Statistics: Key Data on Health 2002; Data 1970-2001 2003, Statistical Office of the European Communities, Office for Official Publications of the European Communities, Luxembourg.
22. Twinn S. An exploratory study examining the influence of translation on the validity and reliability of qualitative data in nursing research. J Adv Nurs 1997, 26:418-423.
23. Hsieh H.F., Shannon S.E. Three approaches to qualitative content analysis. Qual Health Res 2005, 15:1277-1288.
24. Graneheim U.H., Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004, 24:105-112.
25. Popping R. Traces of agreement: On the DOT-product as a coefficient of agreement. Qual Quant 1983, 17:1-18.
26. Landis J.R., Koch G.G. The measurement of observer agreement for categorical data. Biometrics 1977, 33:159-174.
27. Polit D.F., Beck C.T. Nursing Research: Generating and Assessing Evidence for Nursing Practice 2011, Lippincott Williams & Wilkins, Philadelphia, PA. 9th ed.
28. Wolfs C., Kessels A., Severens J., et al. Predictive factors for the objective burden of informal care in people with dementia: A systematic review. Int Psychogeriatr 2011, 23:S185-S186.
29. Rozzini L., Cornali C., Chilovi B.V., et al. Predictors of institutionalization in demented patients discharged from a rehabilitation unit. J Am Med Dir Assoc 2006, 7:345-349.
30. Etters L., Goodall D., Harrison B.E. Caregiver burden among dementia patient caregivers: A review of the literature. J Am Acad Nurse Pract 2008, 20:423-428.
31. Torti F., Gwyther L., Reed S., et al. A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord 2004, 18:99.
32. Merrilees J., Ketelle R. Advanced practice nursing: Meeting the caregiving challenges for families of persons with frontotemporal dementia. Clin Nurse Spec 2010, 24:245-251.
33. Brodaty H., Thomson C., Thompson C., Fine M. Why caregivers of people with dementia and memory loss don't use services. Int J Geriatr Psychiatry 2005, 20:537-546.
34. Alzheimer Europe. Home care in Europe. Available at. Accessed May 13, 2013. http://www.alzheimer-europe.org/Policy-in-Practice2/Country-comparisons/Home-care/Role-of-families/(language)/eng-GB.
35. Pot A.M., Deeg D.J., Knipscheer C.P. Institutionalization of demented elderly: The role of caregiver characteristics. Int J Geriatr Psychiatry 2001, 16:273-280.
36. Hassan E. Recall bias can be a threat to retrospective and prospective research designs. The Internet Journal of Epidemiology 2006, 3:339-412. Available at: http://www.ispub.com/journal/the_internet_journal_of_epidemiology/archive/volume_3_number_2_12.html.
37. Wolfs C.A., de Vugt M.E., Verkaaik M., et al. Empowered or overpoweredα Service use, needs, wants and demands in elderly patients with cognitive impairments. Int J Geriatr Psychiatry 2010, 25:1006-1012.
38. Moïse P., Schwarzinger M., Um M. Dementia Care in 9 OECD Countries: A Comparative Analysis 2004, OECD Health Working Papers, Paris.
39. Couture M., Ducharme F., Lamontagne J. The role of health care professionals in the decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Management & Practice 2012, 31:197-218.