1. Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries
- Author
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Caroline Sutcliffe, Clarissa Giebel, Michel Bleijlevens, Connie Lethin, Minna Stolt, Kai Saks, Maria E. Soto, Gabriele Meyer, Adelaida Zabalegui, Helen Chester, David Challis, Astrid Stephan, Anna Renom-Guiteras, Dirk Sauerland, Ansgar Wübker, Patrick Bremer, Jan P.H. Hamers, Basema Afram, Hanneke C. Beerens, Michel H.C. Bleijlevens, Hilde Verbeek, Sandra M.G. Zwakhalen, Dirk Ruwaard, Ton Ambergen, Ingalill Rahm Hallberg, Ulla Melin Emilsson, Staffan Karlsson, Christina Bökberg, David Jolley, Sue Tucker, Ian Bowns, Brenda Roe, Alistair Burns, Helena Leino-Kilpi, Jaana Koskenniemi, Riitta Suhonen, Matti Viitanen, Seija Arve, Maija Hupli, Ene-Margit Tiit, Jelena Leibur, Katrin Raamat, Angelika Armolik, Teija Tuula Marjatta Toivari, Montserrat Navarro, Esther Cabrera, Ester Risco, Carme Alvira, Marta Farre, Susana Miguel, Maria Soto, Agathe Milhet, Sandrine Sourdet, Sophie Gillette, Bruno Vellas, Health Services Research, and RS: CAPHRI - R1 - Ageing and Long-Term Care
- Subjects
Male ,Activities of daily living ,Nursing(all) ,Day care ,Peer support ,Carer burden ,older people ,0302 clinical medicine ,Cost of Illness ,NEUROPSYCHIATRIC INVENTORY ,QUALITY-OF-LIFE ,Germany ,Activities of Daily Living ,Adaptation, Psychological ,INFORMAL CAREGIVERS ,POSITIVE ASPECTS ,Community Health Services ,030212 general & internal medicine ,Finland ,General Nursing ,Netherlands ,ta316 ,Aged, 80 and over ,Medicine(all) ,Health Policy ,General Medicine ,Caregiver burden ,GENDER DIFFERENCES ,CAREGIVER BURDEN ,humanities ,Informal care ,informal care ,Europe ,ALZHEIMERS-DISEASE ,Caregivers ,Female ,France ,Needs Assessment ,medicine.medical_specialty ,MINI-MENTAL-STATE ,Risk Assessment ,03 medical and health sciences ,Quality of life (healthcare) ,Respite care ,medicine ,Humans ,Dementia ,OLDER-PEOPLE ,Psychiatry ,Aged ,Sweden ,business.industry ,Social Support ,medicine.disease ,Long-Term Care ,United Kingdom ,Long-term care ,Cross-Sectional Studies ,Spain ,PROBLEM BEHAVIORS ,carer burden ,Geriatrics and Gerontology ,Older people ,business ,human activities ,030217 neurology & neurosurgery - Abstract
Objectives: To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries.Design: Cross-sectional study.Setting: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom).Participants: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers.Measurements: Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden.Results: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular night time behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence.Conclusion: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer. (C) 2017 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
- Published
- 2017