Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

Caroline Sutcliffe; Clarissa Giebel; Michel Bleijlevens; Connie Lethin; Minna Stolt; Kai Saks; Maria E. Soto; Gabriele Meyer; Adelaida Zabalegui; Helen Chester; David Challis; RightTimePlaceCare Consortium

doi:10.1016/j.jamda.2017.06.004

Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

Caroline Sutcliffe^*, Clarissa Giebel, Michel Bleijlevens, Connie Lethin, Minna Stolt, Kai Saks, Maria E. Soto, Gabriele Meyer, Adelaida Zabalegui, Helen Chester, David Challis, RightTimePlaceCare Consortium

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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.

Original language	English
Pages (from-to)	967-973.e1
Number of pages	8
Journal	Journal of the American Medical Directors Association
Volume	18
Issue number	11
DOIs	https://doi.org/10.1016/j.jamda.2017.06.004
Publication status	Published - Nov 2017

Keywords

Dementia
informal care
carer burden
older people
MINI-MENTAL-STATE
QUALITY-OF-LIFE
ALZHEIMERS-DISEASE
CAREGIVER BURDEN
INFORMAL CAREGIVERS
NEUROPSYCHIATRIC INVENTORY
GENDER DIFFERENCES
PROBLEM BEHAVIORS
POSITIVE ASPECTS
OLDER-PEOPLE

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Sutcliffe, C., Giebel, C., Bleijlevens, M., Lethin, C., Stolt, M., Saks, K., Soto, M. E., Meyer, G., Zabalegui, A., Chester, H., Challis, D., & RightTimePlaceCare Consortium (2017). Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries. Journal of the American Medical Directors Association, 18(11), 967-973.e1. https://doi.org/10.1016/j.jamda.2017.06.004

@article{801b363ecde743759fc9ad9bbda63848,

title = "Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries",

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.",

keywords = "Dementia, informal care, carer burden, older people, MINI-MENTAL-STATE, QUALITY-OF-LIFE, ALZHEIMERS-DISEASE, CAREGIVER BURDEN, INFORMAL CAREGIVERS, NEUROPSYCHIATRIC INVENTORY, GENDER DIFFERENCES, PROBLEM BEHAVIORS, POSITIVE ASPECTS, OLDER-PEOPLE",

author = "Caroline Sutcliffe and Clarissa Giebel and Michel Bleijlevens and Connie Lethin and Minna Stolt and Kai Saks and Soto, {Maria E.} and Gabriele Meyer and Adelaida Zabalegui and Helen Chester and David Challis and {RightTimePlaceCare Consortium}",

year = "2017",

month = nov,

doi = "10.1016/j.jamda.2017.06.004",

language = "English",

volume = "18",

pages = "967--973.e1",

journal = "Journal of the American Medical Directors Association",

issn = "1525-8610",

publisher = "Elsevier Inc.",

number = "11",

}

Sutcliffe, C, Giebel, C, Bleijlevens, M, Lethin, C, Stolt, M, Saks, K, Soto, ME, Meyer, G, Zabalegui, A, Chester, H, Challis, D & RightTimePlaceCare Consortium 2017, 'Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries', Journal of the American Medical Directors Association, vol. 18, no. 11, pp. 967-973.e1. https://doi.org/10.1016/j.jamda.2017.06.004

TY - JOUR

T1 - Caring for a Person With Dementia on the Margins of Long-Term Care

T2 - A Perspective on Burden From 8 European Countries

AU - Sutcliffe, Caroline

AU - Giebel, Clarissa

AU - Bleijlevens, Michel

AU - Lethin, Connie

AU - Stolt, Minna

AU - Saks, Kai

AU - Soto, Maria E.

AU - Meyer, Gabriele

AU - Zabalegui, Adelaida

AU - Chester, Helen

AU - Challis, David

AU - RightTimePlaceCare Consortium

PY - 2017/11

Y1 - 2017/11

N2 - 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.

AB - 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.

KW - Dementia

KW - informal care

KW - carer burden

KW - older people

KW - MINI-MENTAL-STATE

KW - QUALITY-OF-LIFE

KW - ALZHEIMERS-DISEASE

KW - CAREGIVER BURDEN

KW - INFORMAL CAREGIVERS

KW - NEUROPSYCHIATRIC INVENTORY

KW - GENDER DIFFERENCES

KW - PROBLEM BEHAVIORS

KW - POSITIVE ASPECTS

KW - OLDER-PEOPLE

U2 - 10.1016/j.jamda.2017.06.004

DO - 10.1016/j.jamda.2017.06.004

M3 - Article

SN - 1525-8610

VL - 18

SP - 967-973.e1

JO - Journal of the American Medical Directors Association

JF - Journal of the American Medical Directors Association

IS - 11

ER -

Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

Abstract

Keywords

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