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

© 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine 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 nighttime 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

Care and services at home for persons with dementia. Structure, process, and outcomes.

The overall aim of this thesis was to investigate formal care and services at home, regarding structure, process, and outcomes, for persons with dementia (aged 65+ years) at risk of nursing home admission. Availability and utilization of formal care and services at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries was described in study I. A mapping form was used to collect data. The results revealed that availability was reported to be higher than utilization, and indicated more similarities than differences among the countries involved. Dementia-specific care and services were sparsely available and even more sparsely utilized. Study II investigated formal care providers’ views on conditions for best practice in terms of collaboration and improvement needs in the chain of care from early to end-of-life stage for persons with dementia in Sweden. Three focus group interviews were conducted to collect data. Data were analysed using content analysis. The results indicated that best practice in terms of collaboration was achieved to a higher degree during the early stage compared with the moderate and end-of-life stages of the disease. Lack of best practice strategies during these stages made it difficult to meet the needs of persons with dementia and reduce burden on informal caregivers. A cross-sectional study design was used in studies III and IV. Questionnaire-based interviews were conducted with 177 persons with dementia and their informal caregivers. Data were analysed using descriptive and comparative statistics. Study III compared persons with dementia with different levels of cognitive impairment, regarding utilization of formal and informal care and services at home. The results showed that needs relating to ADLs and supervision appear to be met first and foremost by the informal caregivers, since the utilization of formal care and services was lower than utilization of informal care. Study IV described self-reported quality of life, different aspects of quality of care and the significance of quality of care for quality of life . The results revealed that pain significantly lowered quality of life in the dimensions behavioural competence and psychological wellbeing, compared with absence of pain. Satisfaction with received care seemed to have a positive effect on quality of life . The overall quality of life was perceived to be high even though one-third of the persons with dementia had daily pain and had had a weight loss of ≥4% during the preceding year. Altogether 23% of the persons with dementia had fallen during the last month and 40% of them had sustained an injury when falling. The thesis is inspired by Lawton's press-competence model, which provided a deeper understanding of the results and the context of the research