Informal caregivers of older persons with dementia in eight European countries. Experiences, support, well-being and burden.

The overall aim was to investigate informal caregivers providing care for older persons with dementia (≥ 65 years of age) in eight European countries. Focus was on their experiences of formal care, access to support and factors that were associated with caregivers’ psychological well-being and burden. Caregivers’ experiences of formal care were investigated in a qualitative study with four focus groups interviews with 23 caregivers of older person with dementia living at home or in a nursing home in Sweden (Study I). The interviews were analysed with content analysis. The result of the caregivers’ experiences of formal care when caring for a person with dementia was captured in the theme ‘Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia’. Access, i.e. availability and utilization of support including providers of the support was a quantitative, cross-sectional study conducted in eight European countries (Study II). A mapping system was used to estimate availability, utilization, and professional providers of support to caregivers caring for a person with dementia. Data was collected for each country nationally. The findings showed that counselling, caregiver support, and education were highly available in six of the participating European countries but were rarely utilized. Countries with national guidelines for dementia care seemed to be more aware of the importance of professionals specialized in dementia. In Study III and IV, factors associated with caregiver well-being and burden was investigated, prospectively with 1223 caregivers, caring for an older person with dementia living at home. The caregivers were interviewed based on questionnaires, at baseline and follow-up after three months. Logistic regression analysis was performed of factors associated with caregivers’ psychological well-being and burden at baseline and 3 months later. Factors associated with presence of psychological well-being and burden and over time were the caregivers’ experience of caregiving, the quality of care and amount of caregiving for the person with dementia.This thesis emphasize that formal care needs to be proactive and deliver available care and support early in the course of the dementia disease. Mapping the health care and social service systems is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making. Professionals should be aware about factors associated with caregivers’ well-being and burden to provide proper care and support and promote a healthy transition in the caregiving role and through the course of the dementia disease

Organizational Support Experiences of Care Home and Home Care Staff in Sweden, Italy, Germany and the United Kingdom during the COVID-19 Pandemic

The COVID-19 pandemic has affected care workers all over the globe, as older and more vulnerable people face a high risk of developing severe symptoms and dying from the virus infection. The aim of this study was to compare staff experiences of stress and anxiety as well as internal and external organizational support in Sweden, Italy, Germany, and the United Kingdom (UK) in order to determine how care staff were affected by the pandemic. A 29-item online questionnaire was used to collect data from care staff respondents: management (n = 136), nurses (n = 132), nursing assistants (n = 195), and other healthcare staff working in these organizations (n = 132). Stress and anxiety levels were highest in the UK and Germany, with Swedish staff showing the least stress. Internal and external support only partially explain the outcomes. Striking discrepancies between different staff groups’ assessment of organizational support as well as a lack of staff voice in the UK and Germany could be key factors in understanding staff’s stress levels during the pandemic. Structural, political, cultural, and economic factors play a significant role, not only factors within the care organization or in the immediate context

Care home and home care staff’s learning during the COVID-19 pandemic and beliefs about subsequent changes in the future: A survey study in Sweden, Italy, Germany and the United Kingdom

The aim of this study was to compare perceptions of learning from the COVID-19 pandemic and beliefs in subsequent changes for the future, among care home and home care staff, in four European countries. A 29-item on-line questionnaire was designed in English and later translated into Swedish, Italian, and German on the impact of the pandemic on stress and anxiety. Anonymous data from care staff respondents was collected in four countries between 07.10.2020 and the 17.12.2020: Sweden (n = 212), Italy (n = 103), Germany (n = 120), and the United Kingdom (n = 167). While care staff in all countries reported learning in multiple areas of care practice, Italy reported the highest levels of learning and the most agreement that changes will occur in the future due to the pandemic. Conversely, care staff in Germany reported low levels of learning and reported the least agreement for change in the future. While the pandemic has strained care home and home care staff practices, our study indicates that much learning of new skills and knowledge has taken place within the workforce. Our study has demonstrated the potential of cross-border collaborations and experiences for enhancing knowledge acquisition in relation to societal challenges and needs. The results could be built upon to improve future health care and care service practices

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

Demensvård i primärvården

Demens är den fjärde största folksjukdomen i Sverige och cirka 148 000 människor har någon form av demenssjukdom. Med stigande ålder hos befolkningen ökar antalet stadigt och varje år insjuknar cirka 25 000 personer. Alzheimers sjukdom och vaskulär demens samt blandformer av dessa är de vanligaste demensdiagnoserna och de utgör tillsammans 50–75 procent av all demenssjukdom. Personer med demenssjukdom möter vi överallt i vårt samhälle och framför allt inom hälso- och sjukvården. Personer med minnesproblem kan i flera år ha haft en odiagnostiserad demenssjukdom eller varit ofullständigt utredda och söker ofta primärvården på grund av andra åkommor. Hos yngre personer med demens misstas ibland symtomen för tillstånd som depression och utmattningsdepression. Tidig utredning och diagnos av demenssjukdom bör oftast utföras i primärvården och i särskilda fall inom specialistsjukvården. Detta skulle underlätta personcentrerad omvårdnad genom vårdkedjan för patienten och för de närstående. Detta kapitel beskriver basal demensutredning, utvidgad demensutredning, demenssjuksköterskan i primärvården, personcentrerad omvårdnad, samt närstående som informella vårdare. Det behandlar även övergrepp och våld mot äldre

Evidence of the importance of dietary habits regarding depressive symptoms and depression

Background: Mental illness is one of the fastest rising threats to public health, of which depression and anxiety disorders are increasing the most. Research shows that diet is associated with depressive symptoms or depression (depression). Aim: This study aimed to investigate the diets impact on depression, by reviewing the scientific evidence for prevention and treatment interventions. Method: A systematic review was conducted, and narrative synthesis analysis was performed. Result: Twenty scientific articles were included in this review. The result showed that high adherence to dietary recommendations; avoiding processed foods; intake of anti-inflammatory diet; magnesium and folic acid; various fatty acids; and fish consumption had a depression. Public health professionals that work to support and motivate healthy eating habits may help prevent and treat depression based on the evidence presented in the results of this study. Further research is needed to strengthen a causal relationship and define evidence-based strategies to implement in prevention and treatment by public healthcare