WORLD HEALTH ORGANIZATION. Regional Office for Europe
Publisher:
World Health Organization. Regional Office for Europe
Publication year:
2022
Pagination:
22
Place of publication:
Copenhagen
The pandemic of coronavirus disease 2019 has revealed and accentuated important gaps in the provision of appropriate, community-based, long-term care services for a rapidly growing number of people experiencing decline in functional ability, across the WHO European Region. As countries work to rebuild and strengthen health and long-term care systems, it is essential to support broad dialogue, a common vision for change and focused interventions to bridge existing divides. This policy brief proposes a conceptual framework that maps long-term care actions within the health and social policy landscape and highlights the need and potential for deeper integration and coordination across systems.
(Edited publisher abstract)
The pandemic of coronavirus disease 2019 has revealed and accentuated important gaps in the provision of appropriate, community-based, long-term care services for a rapidly growing number of people experiencing decline in functional ability, across the WHO European Region. As countries work to rebuild and strengthen health and long-term care systems, it is essential to support broad dialogue, a common vision for change and focused interventions to bridge existing divides. This policy brief proposes a conceptual framework that maps long-term care actions within the health and social policy landscape and highlights the need and potential for deeper integration and coordination across systems.
(Edited publisher abstract)
Subject terms:
long term care, policy, ageing, service provision, community care, social policy, models, older people, dementia;
Health and Social Care in the Community, 30(4), 2022, pp.e1255-e1267.
Publisher:
Wiley
The importance of supporting unpaid carers for people living with dementia (PLWD) is recognised in adult social care policy both nationally and internationally. In the UK, social care legislation emphasises care and support should help people achieve the outcomes that matter to them in their life; this includes the opportunity to take a break from caring routines and responsibilities. Accordingly...
(Edited publisher abstract)
The importance of supporting unpaid carers for people living with dementia (PLWD) is recognised in adult social care policy both nationally and internationally. In the UK, social care legislation emphasises care and support should help people achieve the outcomes that matter to them in their life; this includes the opportunity to take a break from caring routines and responsibilities. Accordingly, there is growing policy and practice interest in short breaks provision to address the diversity of carer break needs and preferences and deliver meaningful outcomes for carers and those they support. This paper reports findings from qualitative staff interviews that offered strategic and operational insights into short breaks provision. It presents a dynamic model of the short break landscape in a region of Wales, describing factors shaping local and regional decision-making. The model identifies key challenges (barriers) and opportunities (enablers) that shape the planning, commissioning and delivery of bespoke short breaks for spousal carers and their partner living with dementia. Through highlighting the interplay between complex context-specific processes and contingences, the model informs initial theory development in short breaks provision.
(Edited publisher abstract)
Subject terms:
short break care, commissioning, dementia, carers, partners, staff views, service provision, models;
Objectives: Anticipatory grief (AG) is the process of experiencing loss prior to the death of a significant person. Coping with this multifaceted experience in the context of dementia caregiving is a relatively novel, yet significant area in caregiving literature. The Marwit-Meuser Caregiver Grief Inventory (MM-CGI) and its abbreviated MM-CGI-Short-Form (MM-CGI-SF) is the most widely used scale...
(Edited publisher abstract)
Objectives: Anticipatory grief (AG) is the process of experiencing loss prior to the death of a significant person. Coping with this multifaceted experience in the context of dementia caregiving is a relatively novel, yet significant area in caregiving literature. The Marwit-Meuser Caregiver Grief Inventory (MM-CGI) and its abbreviated MM-CGI-Short-Form (MM-CGI-SF) is the most widely used scale measuring AG. However, limited research has employed robust analytical strategies to assess its dimensional structure. This study employed contemporary factor analytical techniques to assess the dimensional structure of the MM-CGI/SF. Method: Caregivers of persons with dementia (n = 508) completed a survey containing MM-CGI/SF and other associated psychological measures. Exploratory factor analysis was employed to compare eight alternative factor analytical models to determine the optimal model. Internal-consistency reliability was assessed by Cronbach’s α and construct validity was assessed by Spearman’s correlation-coefficient. Results: The best fitting model was the MM-CGI-SF three factor model (Personal Sacrifice and Burden, Heartfelt Sadness and Longing and Worry and Felt Isolation). The MM-CGI-SF three factor model demonstrated internal consistency reliability and factor correlations with associated psychological measures indicated construct validity. Conclusion: The MM-CGI-SF three factor model demonstrated adequate fit and utility, however, the Worry and Felt Isolation subscale needs further replication and revision to assess its dimensionality. The MM-CGI-SF is the more useful tool due to its brevity and better model fit.
(Edited publisher abstract)
Subject terms:
grief, carers, dementia, models, family members, instruments;
Background: most people living with dementia (PLWD) will develop incontinence problems with associated harmful consequences. Well-contained incontinence is often the main treatment goal. It would therefore be expected that poorly contained incontinence would have a negative impact. Aim: to investigate differences in how well-contained or poorly contained incontinence impacts on the experience...
(Edited publisher abstract)
Background: most people living with dementia (PLWD) will develop incontinence problems with associated harmful consequences. Well-contained incontinence is often the main treatment goal. It would therefore be expected that poorly contained incontinence would have a negative impact. Aim: to investigate differences in how well-contained or poorly contained incontinence impacts on the experience of living with incontinence for PLWD at home and their carers. Design: secondary analysis of a qualitative study. Methods: semi-structured interviews were undertaken with PLWD, carers and healthcare professionals (continence or dementia nurses). PLWD and carers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Interviews were recorded and transcribed verbatim. Framework analysis was used. Results: forty-five people (twenty-six carers, two PLWD, nine continence nurses and eight dementia nurses) participated. Despite poorly contained incontinence, some PLWD/carer dyads appeared relatively unaffected by incontinence. Conversely, one or both members of some dyads who achieved good containment found incontinence care highly challenging. Four themes were identified, together forming a preliminary model of incontinence containment and impact, as follows: Well-contained incontinence, lower negative impact; Well-contained incontinence, higher negative impact; Poorly contained incontinence, higher negative impact; and Poorly contained incontinence, lower negative impact. Conclusion: reliable containment is an important goal for PLWD living at home and their carers, but it is not the only goal. Other factors, such as behaviours that challenge or carer coping strategies, can mean that even well-contained incontinence can have a negative impact. This paper proposes a preliminary model for evaluation.
(Edited publisher abstract)
Subject terms:
qualitative research, dementia, incontinence, home care, models, independent living, older people;
Health and Social Care in the Community, 30(2), 2022, pp.622-630.
Publisher:
Wiley
This study set out to investigate whether there were disparities in service provision for people from Black, Asian and Minority Ethnic (BAME) communities compared to White British (WB) communities within a primary care led dementia service in the UK. Data were extracted from 30 cases from three BAME (African-Caribbean, South Asian and Chinese) communities who had been referred to a dementia...
(Edited publisher abstract)
This study set out to investigate whether there were disparities in service provision for people from Black, Asian and Minority Ethnic (BAME) communities compared to White British (WB) communities within a primary care led dementia service in the UK. Data were extracted from 30 cases from three BAME (African-Caribbean, South Asian and Chinese) communities who had been referred to a dementia service between April 2016 and December 2017. The researchers extracted data from 30 WB cases matched for gender, age (within 5 years) and General Practitioner surgery. This study compared service provision for both samples around assessment, diagnosis and post-diagnostic support. The primary source of information in the BAME sample was less likely to be recorded as being the main carer and more likely to be an adult child. Cases from both samples were equally likely to have a CT scan. People from BAME communities were less likely to receive a cognitive assessment, and when they did they scored at a lower level. There was no difference between samples for the diagnoses that cases received, but BAME cases were more likely to be assessed as being low rather than medium or high risk. While cases from both samples were equally likely to receive medication, BAME cases were more likely to be seen by a psychiatrist. Significantly more people from the WB sample were recorded as using or being offered more than one form of community support. This study of a primary care-based dementia service suggests that while many areas of service provision showed no evidence of inequality, important differences remain including the time at which people present for assessment and the range of post-diagnostic services which are discussed. Further research is required to establish the likely causes of these disparities.
(Edited publisher abstract)
Subject terms:
dementia, service provision, black and minority ethnic people, primary care, models, racial equality, ethnicity, access to services;
Health and Social Care in the Community, 30(1), 2022, pp.389-399.
Publisher:
Wiley
The service utilisation of persons with dementia (PwD) and their caregivers is subject to lively debate. The reasons for non-utilisation are manifold and heterogeneous. Conceptual models and explanatory frameworks may help identify predictors of the usage of health services. Literature examining the utilisation of home care services for PwD is scarce. This study explored predictors of home care
(Edited publisher abstract)
The service utilisation of persons with dementia (PwD) and their caregivers is subject to lively debate. The reasons for non-utilisation are manifold and heterogeneous. Conceptual models and explanatory frameworks may help identify predictors of the usage of health services. Literature examining the utilisation of home care services for PwD is scarce. This study explored predictors of home care nursing utilisation of PwD and their informal caregivers in a rural setting, according to the Andersen Behavioural Model of Health Care Use. A mixed-methods study was conducted in a rural area of Austria. In using non-random multistage sampling, anonymous questionnaires were distributed to collect data on family caregivers of PwD. Data were analysed using sequential binary logistic regression to characterise home care service users. To reflect the complexity of the Andersen model, a regression tree model was used. In total, 107 family caregivers completed the survey. Predisposing factors for home care nursing utilisation were higher age of the caregiver, female gender of PwD and kinship of the PwD and caregiver. Disruptive behaviour and independence in activities of daily living of PwD were associated with need factors for service use. According to the Andersen model, the predisposing and need factors contributed most to the explanation of home care nursing utilisation. The enabling factors employment, education and income tend to predict service use. Our findings indicate that higher age of the family caregiver and female gender of PwD are the main predictors for utilisation of home care nursing in a rural setting. To improve utilisation, the advantages of professional care services should be promoted, and the awareness about the variety of services available should be increased. To ensure a better understanding of the barriers to accessing home care, PwD should more often be included in healthcare service research.
(Edited publisher abstract)
Subject terms:
home care, carer views, nursing, dementia, service uptake, models;
Context: Interventions aimed at increasing the provision of person-centred care in long-term care (LTC) homes, that do not address contextual and system issues, most often fail. Promoting positive change in LTC homes requires requires a multilevel, systems approach. Objectives: Evaluate the effectiveness of the Feasible and Sustainable Culture Change Initiative (FASCCI) model for improving the provision of person-centred mealtime practices in a LTC home. Methods: A single-group, time series design was used to assess the impact of the FASCCI model for change on outcome measures across four time periods (pre-intervention, 2-month, 4-month and 6-month follow-up). Differences in scores from baseline were assessed utilizing Wilcoxon signed-rank tests. Interviews (n = 21) were also conducted to examine treatment fidelity and to ascertain the study participants’ perceptions of the process for making improvements using the FASCCI model. Findings: This study observed increases in care staff’s capacity to consistently provide relational and person-centred care during mealtimes. Mealtime environment scores started increasing immediately following the intervention, with statistically significant improvements in all mealtime environment scales by six-months, including: the physical environment (W = 55.00, p = 0.008); social environment (W = 55.00, p = 0.008); relationship-centred care (W = 45.00, p = 0.014); and overall quality of dining environment (W = 55.00, p = 0.010). Analysis of data from qualitative interviews demonstrated that use of the FASCCI model resulted in improved team leadership, communication, and collaborative decision-making. Limitations: Generalizability is limited due to the small sample size and use of convenience sampling methods. Implications: Outcomes indicate that the FASCCI model seems promising in its ability to improve PCC mealtime practices in LTC homes and is worthy of a larger scale study. The results further demonstrate the value of supportive team environments in quality dementia care.
(Edited publisher abstract)
...concludes that each approach involves trade-offs and that the ‘family’ model may be more suitable for people with advanced dementia, given its emphasis on relationships. While the presence of a range of diverse approaches to personalising care in a care home market may be desirable as a matter of choice, access to care homes in England is likely to be constrained by availability and cost.
(Edited publisher abstract)
This paper examines how care home managers in England conceptualised the approach to delivering personalised care in the homes they managed. The researchers conducted interviews with care home managers and mapped the approaches they described on two distinct characterisations of personalised care prominent in the research and practitioner literature: the importance of close care relationships and the degree of resident choice and decision-making promoted by the care home. The researchers derived three ‘types’ of personalised care in care homes. These conceptualise the care home as an ‘institution’, a ‘family’ and a ‘hotel’. This study adds a fourth type, the ‘co-operative’, to propose a type that merges proximate care relationships with an emphasis on resident choice and decision-making. This study concludes that each approach involves trade-offs and that the ‘family’ model may be more suitable for people with advanced dementia, given its emphasis on relationships. While the presence of a range of diverse approaches to personalising care in a care home market may be desirable as a matter of choice, access to care homes in England is likely to be constrained by availability and cost.
(Edited publisher abstract)
Subject terms:
care homes, housing, models, choice, person-centred care, personalisation, residential care;
International Journal of Geriatric Psychiatry, 35(1), 2020, pp.45-52.
Publisher:
Wiley
Objectives: In the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia‐specific formal care services. Results can identify which specific factors should be a target to improve access. Methods: A total of 451 People with middle‐stage...
(Publisher abstract)
Objectives: In the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia‐specific formal care services. Results can identify which specific factors should be a target to improve access. Methods: A total of 451 People with middle‐stage dementia and their informal carers from eight European countries were included. At baseline, there was no use of formal care yet, but people were expected to start using formal care within the next year. Logistic regressions were carried out with one of four clusters of service use as dependent variables (home social care, home personal care, day care, admission). The independent variables (predisposing, enabling, and need variables) were added to the regression in blocks. Results: The most significant predictors for the different care clusters are disease severity, a higher sum of (un)met needs, hours spent on informal care, living alone, age, region of residence, and gender. Conclusion: The Andersen model provided for this cohort the insight that (besides need factors) the predisposing variables region of residence, gender, and age do play a role in finding access to care. In addition, it showed us that the numbers of hours spent on informal care, living alone, needs, and disease severity are also important predictors within the model's framework. Health care professionals should pay attention to these predisposing factors to ensure that they do not become barriers for those in need for care.
(Publisher abstract)
Subject terms:
access to services, dementia, service uptake, models, home care, day services;
Dementia: the International Journal of Social Research and Practice, 18(3), 2019, p.951–969.
Publisher:
Sage
Case management is generally seen as a way to provide efficient, cost-saving person-centred care for people with dementia by connecting together fragmented services, but the available evidence in favour of its merits is often considered inconclusive, unclear and sketchy. This discussion paper investigates the evidence of the benefit of case management for people with dementia and explores
(Edited publisher abstract)
Case management is generally seen as a way to provide efficient, cost-saving person-centred care for people with dementia by connecting together fragmented services, but the available evidence in favour of its merits is often considered inconclusive, unclear and sketchy. This discussion paper investigates the evidence of the benefit of case management for people with dementia and explores the complexity of the concept and the experiences of its implementation. It offers a comprehensive framework for conceptualising various types of case management and asks the question: who can be a case manager? Building on examples from three European countries it addresses the problem of the expansion and adoption of the case management method. It compares the conventional model of diffusion of innovation with the ideas of interessement and co-constitution and envisions a successful model of case management as a fluid technology that is both friendly and flexible, allowing it to adapt to different settings and systems.
(Edited publisher abstract)
Subject terms:
case management, dementia, person-centred care, models, policy implementation, digital technology, case studies;