Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study

Background: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (>= 65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease. Methods: A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole. Results: There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree. Conclusions: Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making

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

Evaluating person-centredness for frail older persons in nursing homes before and after implementing a palliative care intervention

Aim: To evaluate person-centeredness in nursing homes from the perspective of frail older persons, before and after implementing an educational intervention about palliative care. Design: A crossover design. Methods: Forty-four older persons living in nursing homes were interviewed. A convergent mixed-method was used to analyse data. Results: The older persons expressed feelings of unsafety related to shortcomings in staff. These shortcomings implied that the responsibilities of everyday activities and making the residents’ existence more bearable were transferred to the next of kin. The dropout rate related to death and not enough energy was considerably high (51%) even though one of the inclusion criteria was to have enough energy to manage a 1-hr interview. This result supports previous research describing the difficulties in retaining older persons in research and indicated that the dose of the intervention was not sufficient to improve person-centred care

Quality of Life and Quality of Care for People With Dementia Receiving Long Term Institutional Care or Professional Home Care: The European RightTimePlaceCare Study

Objectives: To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD)vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements;and to assess the association between QoL and QoC.Design: Cross-sectional survey.Setting: Institutional long term care and home care in 8 European countries (England, Estonia, Finland,France, Germany, the Netherlands, Spain, and Sweden).Participants: PwD receiving formal home care but at risk for admission to an institutional setting, andPwD who were recently admitted.Measurements: QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer’s Disease scale (QoL-AD) (range 13e52). QoC was measured using quality of care indicators(eg, the presence of depressive symptoms, the presence of pressure ulcers).Results: A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutionalcare (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden andEnglandandlowest in Estonia andSpain.No differences inQoLwere detectedamong the settings. For theQoCindicators, no consistent patternswere visible in such away that certain countries or settings scored "higher"or "lower." The presence of depressive symptomswasmost consistently associated with lower QoL (P.001).Conclusion: There is great variation in QoL and QoC scores among European countries and settings. Togain insight into the underlying causes of these differences, more knowledge is needed about the effectof different national health care systems and dementia strategies on QoL and QoC indicators. Depressivesymptoms were associated with QoL, and executing longitudinal studies investigating which factors areassociated with change in QoL is highly recommended

Quality of Life and Quality of Care for People With Dementia Receiving Long Term Institutional Care or Professional Home Care: The European RightTimePlaceCare Study

Objectives: To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD) vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements; and to assess the association between QoL and QoC. Design: Cross-sectional survey. Setting: Institutional long term care and home care in 8 European countries (England, Estonia, Finland, France, Germany, the Netherlands, Spain, and Sweden). Participants: PwD receiving formal home care but at risk for admission to an institutional setting, and PwD who were recently admitted. Measurements: QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer's Disease scale (QoL-AD) (range 13-52). QoC was measured using quality of care indicators (eg, the presence of depressive symptoms, the presence of pressure ulcers). Results: A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutional care (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. No differences in QoL were detected among the settings. For the QoC indicators, no consistent patterns were visible in such away that certain countries or settings scored "higher" or "lower." The presence of depressive symptoms was most consistently associated with lower QoL (P <= .001). Conclusion: There is great variation in QoL and QoC scores among European countries and settings. To gain insight into the underlying causes of these differences, more knowledge is needed about the effect of different national health care systems and dementia strategies on QoL and QoC indicators. Depressive symptoms were associated with QoL, and executing longitudinal studies investigating which factors are associated with change in QoL is highly recommended. Copyright (C) 2014 - American Medical Directors Association, Inc

Change in quality of life of people with dementia recently admitted to long-term care facilities

Aim To assess which factors are associated with change in quality of life of people with dementia who have recently been admitted to long-term care facilities. BackgroundMany people with dementia will be admitted to long-term care facilities at some point during their disease. It is currently unknown which factors are associated with improvement and/or deterioration of quality of life immediately following admission. DesignAn observational and longitudinal survey. MethodsData on 343 people with dementia who have been recently admitted to long-term care facilities across eight European countries were collected between November 2010-April 2012. Quality of life was assessed by people with dementia and their proxies using the Quality of Life-Alzheimer's Disease scale'. Explanatory variables included cognitive status, comorbidities, activities of daily living, depressive symptoms and neuropsychiatric symptoms. Descriptive and multilevel regression analyses were performed. ResultsBetter cognitive abilities at baseline were associated with a decrease in self-reported quality of life. Greater dependency and more depressive symptoms at baseline were associated with declined proxy-reported quality of life. Furthermore, an increased dependency and an increase of depressive symptoms between baseline and follow-up were associated with a decreased proxy-reported quality of life. On an individual level, three groups were identified, namely people whose quality of life: (1) decreased; (2) stayed the same; and (3) increased. ConclusionCognitive functioning, functional rehabilitation and treatment of depressive symptoms should receive special attention. However, quality of life of people with dementia does not necessarily decrease after institutionalization

Change in quality of life of people with dementia recently admitted to long-term care facilities

Aim To assess which factors are associated with change in quality of life of people with dementia who have recently been admitted to long-term care facilities. BackgroundMany people with dementia will be admitted to long-term care facilities at some point during their disease. It is currently unknown which factors are associated with improvement and/or deterioration of quality of life immediately following admission. DesignAn observational and longitudinal survey. MethodsData on 343 people with dementia who have been recently admitted to long-term care facilities across eight European countries were collected between November 2010-April 2012. Quality of life was assessed by people with dementia and their proxies using the Quality of Life-Alzheimer's Disease scale'. Explanatory variables included cognitive status, comorbidities, activities of daily living, depressive symptoms and neuropsychiatric symptoms. Descriptive and multilevel regression analyses were performed. ResultsBetter cognitive abilities at baseline were associated with a decrease in self-reported quality of life. Greater dependency and more depressive symptoms at baseline were associated with declined proxy-reported quality of life. Furthermore, an increased dependency and an increase of depressive symptoms between baseline and follow-up were associated with a decreased proxy-reported quality of life. On an individual level, three groups were identified, namely people whose quality of life: (1) decreased; (2) stayed the same; and (3) increased. ConclusionCognitive functioning, functional rehabilitation and treatment of depressive symptoms should receive special attention. However, quality of life of people with dementia does not necessarily decrease after institutionalization

Prospects and constraints of nursing home-based integrated adult day care : Viewpoints of experts

Hämel K, Röhnsch G. Möglichkeiten und Grenzen integrierter Tagespflege in Pflegeheimen: Sichtweisen von ExpertInnen. Zeitschrift fur Gerontologie und Geriatrie. 2019;52(2): 148–156.BACKGROUND: Even when they are in need of care, old people prefer to stay in their community. An appropriate design of nonresidential and residential care services close to people's home is crucial for supporting them. In the model project "Pflege stationar-Weiterdenken!" (Nursing home care-think ahead!) nursing homes offer extended services to old people in the community. This includes integrated day care (ITP), which entails day guests spending the day with residents of the facilities. This article examines the opportunities and challenges arising when designing and implementing this type of cross-sectoral care model.; METHOD: Guided interviews were carried out with 20experts who were either professionals working at the model institutions or involved in the project at the planning and cooperation levels. The data collected were evaluated using thematic coding.; RESULTS: The opportunities and challenges lie at two levels. (1)At the institutional level advantages are greater individual and flexible timeframes of usage and better accessibility of day care for care-dependent people through the integration into residential care settings. The challenges involve administrative and management issues as well as apprehensions among the employees concerning the increased workload. (2)At the level of interaction and social integration experts emphasized the importance of making allowances for the interests and needs of day guests and residents. Furthermore, they confirmed that if this is achieved then integrated day care can improve the social participation of both user groups.; CONCLUSION: From the experts' point of view, the ITP holds the potential for cross-sectoral care for old people in need of care close to their homes. Afinal assessment will require further analysis, especially on users' views