Support For Informal Caregivers Research Articles

Gender Differences in Social Support Received by Informal Caregivers: A Personal Network Analysis Approach.

Social support is an important predictor of the health of a population. Few studies have analyzed the influence of caregivers’ personal networks from a gender perspective. The aim of this study was to analyze the composition, structure, and function of informal caregiver support networks and to examine gender differences. It also aimed to explore the association between different network characteristics and self-perceived health among caregivers. We performed a social network analysis study using a convenience sample of 25 female and 25 male caregivers. A descriptive analysis of the caregivers and bivariate analyses for associations with self-perceived health were performed. The structural metrics analyzed were density; degree centrality mean; betweenness centrality mean; and number of cliques, components, and isolates. The variability observed in the structure of the networks was not explained by gender. Some significant differences between men and women were observed for network composition and function. Women received help mainly from women with a similar profile to them. Men’s networks were broader and more diverse and they had more help from outside family circles, although these outcomes were not statistically significant. Our results indicate the need to develop strategies that do not reinforce traditional gender roles, but rather encourage a greater sharing of responsibility among all parties.

Caregiver Communication About Cancer: Development of a mhealth resource to support family caregiver communication burden.

The aim of this study is to illustrate an evidence-based and theoretically informed mhealth resource (smartphone app) designed to provide communication support for informal cancer caregivers (friends or family members). An eight-step process was conducted: (a) review of existing print resources, (b) selection of theoretical framework for content development, (c) integration of stakeholder feedback and literacy assessment into an alpha print model, (d) review of existing mhealth resources, (e) development of prototype, (f) assessment of caregiver acceptability (n=5), (g) assessment of quality and perceived impact by cancer providers (n=26), and (h) acceptability testing with caregivers (n=6). Key stakeholders were integrated throughout development and user testing of this iOS smartphone app. The smartphone app consists of talking tips and resources for caregiver communication with the patient, family, far away family, and health care providers, as well as general information sharing features. This study demonstrates feasibility and development of an evidence-based and theory-driven mhealth resource to support caregiver communication about cancer. This is the first theory-driven mhealth application created to support the communication burden experienced by cancer caregivers. A larger study is needed to establish the efficacy of the app as an intervention for caregivers.

The effect of informal caregiver support on utilization of acute health services among home care clients: a prospective observational study

BackgroundEmergency department visits and hospitalizations (EDVH) place a large burden on patients and the health care system. The presence of informal caregivers may be beneficial for reducing EDVH among patients with specific diagnoses. Our objective was to determine whether the presence of an informal caregiver was associated with the occurrence of an EDVH among clients 50 years of age or older.MethodsUsing a database accessed through the Toronto Central Community Care Access Centre (CCAC), we identified 479 adults over 50 years of age who received home care in Toronto, Canada. Exposure variables were extracted from the interRAI health assessment form completed at the time of admission to the CCAC. EDVH data were linked to provincial records through the CCAC database. Data on emergency room visits were included for up to 6 months after time of admission to home care. Multiple logistic regression analysis was used to identify factors associated with the occurrence of an EDVH.ResultsApproximately half of all clients had an EDVH within 180 days of admission to CCAC home care. No significant association was found between the presence of an informal caregiver and the occurrence of an EDVH. Significant factors associated with an EDVH included: Participants having a poor perception of their health (adjusted OR = 1.68, 95% CI: 1.11–2.56), severe cardiac disorders (adjusted OR = 1.54, 95% CI: 1.04–2.29), and pulmonary diseases (adjusted OR = 1.99, 95% CI: 1.16–3.47).ConclusionsThe presence of an informal caregiver was not significantly associated with the occurrence of an EDVH. Future research should examine the potential associations between length of hospital stay or quality of life and the presence of an informal caregiver. In general, our work contributes to a growing body of literature that is increasingly concerned with the health of our aging population, and more specifically, health service use by elderly patients, which may have implications for health care providers.

Individualized support for informal caregivers of people with dementia \u2013 effectiveness of the German adaptation of REACH II

BackgroundIndividualized, outreach and structured multicomponent interventions are a promising intervention approach to relieve the burden of informal caregivers of people with dementia. In this study, we adapted and evaluated a multicomponent intervention (Resources for Enhancing Alzheimer’s Caregiver Health II, REACH II), which was developed in the USA, to the German health-care system. Therefore the project is called the German adaptation of REACH II (in German: Deutsche Adaptation der REACH II, DE-REACH).MethodsThe effectiveness of DE-REACH was examined in a randomized, controlled trial on 92 informal caregivers of people with dementia. The intervention comprised 12 individual two-weekly sessions (9 at home with the informal caregiver and 3 via telephone) and combined five modules. The reduction of the burden of the informal caregivers was chosen as the primary outcome.ResultsThe results showed a great stabilizing effect of the intervention on caregiver burden (effect size d = 0.91), that is, comparing pre- and post-measurements the burden decreased very slightly in the intervention group whereas it increased very strongly in the control group. After a three-month follow-up period this effect decreased from a great to a moderate effect. There were also improvements as a result of the intervention in somatization, health-related psychological quality of life and the reaction of the informal caregivers in response to challenging behaviors of the relative with dementia. Moreover, the frequency of challenging behaviors of the affected person itself was reduced in favor of the intervention.ConclusionThe findings of this study provide further evidence for the impact of multicomponent support interventions for informal caregivers of people with dementia.Clinical trial registrationNCT01690117. Registered September 17, 2012.

Self-management support and eHealth for patients and informal caregivers confronted with advanced cancer: an online focus group study among nurses

BackgroundSelf-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses’ perspectives on self-management support for people confronted with advanced cancer, and nurses’ experiences with eHealth in this context.MethodsSix online focus groups were organized, with a total of 45 Dutch nurses with different educational levels and working in different care settings. Nurses were asked how they support patients and informal caregivers facing advanced cancer in managing physical and psychosocial problems in their daily life. Questions were also asked regarding the nurses’ experiences with eHealth. Transcripts of the online focus group discussions were analyzed qualitatively following the principles of thematic analysis. The main themes derived from the analyses were ordered according to the elements in the 5 A’s Behavior Change Model.ResultsWithin the scope of self-management support, nurses reported that they discuss the background, personal situation, wishes, and needs of advanced cancer patients (‘Assess’ in the 5 A’s model), and they provide information about cancer and specifically the advanced type (‘Advise’). However, nurses hardly give any advice on how patients can manage physical and psychological problems themselves and/or pay any attention to collaborative goal-setting (‘Agree’). Neither do they explain how follow-up can be arranged (‘Arrange’). In addition, they do not appear to pay much attention to self-management support for informal caregivers.Nurses’ attitudes towards eHealth within the scope of self-management support are positive. They see many advantages, such as allowing advanced cancer patients to stay in charge of their own care and lives. However, nurses also explicitly stressed that eHealth can never be a substitute for personal contact between nurses and patients.ConclusionsNurses value self-management support and eHealth for advanced cancer patients and their informal caregivers. However, they seem to disregard important elements in the support of self-management, such as providing practical advice, collaborative goal-setting, and arrangement of follow-up. We recommend further promoting and clarifying the essence and importance of self-management support, including self-management support for informal caregivers.

Social Support and Self-Rated Health of African American Women Informal Caregivers: Urban and Rural Differences

ABSTRACTIn this study, we examined how geographic location might differently influence social support and self-rated health for rural and urban African American women caregivers. We used cross-sectional data from 253 urban and 263 rural women primary caregivers. Controlling for key demographic factors, we regressed caregivers’ self-rated health on social engagement, structural, and functional aspects of social support for urban and rural caregivers separately. The perception of family functioning was positively associated with urban and rural caregivers’ self-rated health. Urban caregivers reported having significantly more contact with their family and more informal helpers compared to rural caregivers. Furthermore, church attendance, a measure of social engagement, was significant for urban caregivers’ self-rated health, but not rural caregivers. Our findings affirmed the importance of foregrounding context and disaggregating social support, and point to the need for interventions targeting family functioning and paying attention to geographic location.

Know thy eHealth user: Development of biopsychosocial personas from a study of older adults with heart failure

BackgroundPersonas are a canonical user-centered design method increasingly used in health informatics research. Personas—empirically-derived user archetypes—can be used by eHealth designers to gain a robust understanding of their target end users such as patients. ObjectiveTo develop biopsychosocial personas of older patients with heart failure using quantitative analysis of survey data. MethodData were collected using standardized surveys and medical record abstraction from 32 older adults with heart failure recently hospitalized for acute heart failure exacerbation. Hierarchical cluster analysis was performed on a final dataset of n=30. Nonparametric analyses were used to identify differences between clusters on 30 clustering variables and seven outcome variables. ResultsSix clusters were produced, ranging in size from two to eight patients per cluster. Clusters differed significantly on these biopsychosocial domains and subdomains: demographics (age, sex); medical status (comorbid diabetes); functional status (exhaustion, household work ability, hygiene care ability, physical ability); psychological status (depression, health literacy, numeracy); technology (Internet availability); healthcare system (visit by home healthcare, trust in providers); social context (informal caregiver support, cohabitation, marital status); and economic context (employment status). Tabular and narrative persona descriptions provide an easy reference guide for informatics designers. DiscussionPersonas development using approaches such as clustering of structured survey data is an important tool for health informatics professionals. We describe insights from our study of patients with heart failure, then recommend a generic ten-step personas development process. Methods strengths and limitations of the study and of personas development generally are discussed.

The Informal Caregiver Engagement Framework

Background: In the United States, there were 42.6 million adults age 65+ in 2014 and that figure is expected to double by year 2060 to 98 million. According to the AARP, 90% of older adults would prefer to age in their homes, creating an ever growing need for informal caregiver (ICG) support. About 34 million Americans provided care to a person 50+ years old with an average of 24.2 hours of care per week in 2015. Caregiving comes in many forms and levels, from proving a ride to a grocery store to administering medications and help with bathing and dressing. High levels of caregiving can cause high strain on caregivers. Therefore it is important to understand informal caregiver (ICG) needs as caregivers engage in providing care at different levels. Objective: This work aims to map different ways informal caregivers engage in providing care to an elder care recipient (CR). We sought to define stages of an informal caregiver’s engagement journey to uncover their needs in a progressive fashion. Methods: Literature review, journey mapping and a commercial landscape of ICG solutions were conducted. Results: Five stages of engagement in caregiving process were identified including Noticing Changes, Making Adjustments, Shifting Responsibilities, Actively Helping and Running the Show. Categories of needs (e.g. communication and information), as well as tasks they may complete at each stage of engagement (e.g. share and gather information about care recipient condition in the communication need of Stage 3), were also mapped. The first two stages are the lowest level of engagement and are often hard to differentiate. The main distinction is that in Making Adjustments, caregivers have acknowledged that changes in the care recipient’s health and functional abilities require some level of engagement. The informal caregiver’s health and functional limitations start to limit their independence in Stage 3. Caregivers take over more responsibilities from the care recipient, mainly instrumental activities of daily living like shopping, transportation, and housework. The ICG is more deeply engaged with providing care in Stage 4. The care recipient is likely still living independently; however, doing so safely is becoming increasingly more difficult. Informal caregivers in this stage start to need deeper engagement in self-care as caregiver burden is a concern. In the final stage, the care recipient has lost their independence, relying on the ICG for most needs. The care recipient may collocate with the caregiver or alternative living arrangements like transfer to a skilled nursing facility are made. Caregivers are very familiar with the care recipient's disease and treatment options and are instead in need of emotional and decision-making support. Conclusions: As the number of people age 65 and older continues to grow, the need for informal caregiver support will increase. Consequently, informal caregivers themselves will also need support. This work focused on revealing different stages of engagement for informal caregivers and caregiver needs at each stage. This work shows the landscape of informal caregiver needs and engagement points for which solutions can be proposed. This will help academic, legislative, and commercial entities deliver the support informal caregivers need.

The elderly and falls: Factors associated with quality of life A cross-sectional study using large-scale national data in Korea

ObjectiveTo investigate the factors of fall injury and measuring the relationship between health-related quality of life in the elderly. MethodsWe analyzed the data on 38,627 persons of aged 65 years or older who have experienced falls drawn from the Korean Community Health Survey 2011. Binomial logistic regression analysis was performed with crude and adjusted odds ratios and 95% confidence intervals. ResultsIt was found that sex (OR: 1.187), types of household (OR: 1.134), employment status (OR: 0.941), stress (OR: 1.260), comorbidities (OR: 1.308), and health-related quality of life were significantly related to falls among the elderly. Specifically, elderly women, greater stress, comorbidities, and poor health-related quality of life were strongly related to higher odds of falls. ConclusionHealth-related quality of life was significantly related with the risk of fall injuries in elderly households. Providing support for informal caregivers (e.g., friends or neighbors), not only family members could expect to positive effect.

Low emotion-oriented coping and informal help-seeking behaviour as major predictive factors for improvement in major depression at 5-year follow-up in the adult community.

Given the broad range of biopsychosocial difficulties resulting from major depressive disorder (MDD), reliable evidence for predictors of improved mental health is essential, particularly from unbiased prospective community samples. Consequently, a broad spectrum of potential clinical and non-clinical predictors of improved mental health, defined as an absence of current major depressive episode (MDE) at follow-up, were examined over a 5-year period in an adult community sample. The longitudinal population-based PsyCoLaus study from the city of Lausanne, Switzerland, was used. Subjects having a lifetime MDD with a current MDE at baseline assessment were selected, resulting in a subsample of 210 subjects. Logistic regressions were applied to the data. Coping styles were the most important predictive factors in the present study. More specifically, low emotion-oriented coping and informal help-seeking behaviour at baseline were associated with the absence of an MDD diagnosis at follow-up. Surprisingly, neither formal help-seeking behaviour, nor psychopharmacological treatment, nor childhood adversities, nor depression subtypes turned out to be relevant predictors in the current study. The paramount role of coping styles as predictors of improvement in depression found in the present study might be a valuable target for resource-oriented therapeutic models. On the one hand, the positive impact of low emotion-oriented coping highlights the utility of clinical interventions interrupting excessive mental ruminations during MDE. On the other hand, the importance of informal social networks raises questions regarding how to enlarge the personal network of affected subjects and on how to best support informal caregivers.

REDUCING AND PREVENTING CAREGIVERS’ BURDEN: THE EFFICACY OF DEMENTIA CARE MANAGEMENT FOR INFORMAL DEMENTIA CAREGIVERS

The provision of appropriate support for informal caregivers is a major challenge for the healthcare system in Germany. To provide an optimal support for informal dementia caregivers, we conducted a cluster-randomized controlled trial of a comprehensive Dementia Care Management (DCM) for persons with dementia (PWD) and their informal caregivers in a primary care setting. The analyses are based on longitudinal data of the general practitioner-based, cluster-randomized DCM intervention trial DelpHi-MV (Dementia: life- and person-centered help) with baseline and 12-month follow-up assessment as well as two arms (intervention group versus care as usual). A sample of n = 317 community dwelling PWD screened positive for dementia (DemTect < 9) and their caregivers provided written informed consent to participate. Intervention caregivers reported significant improvements in caregiver burden, especially in caregivers’ subjective burden due to behavioral change and caregivers’ subjective burden due to perceived conflicts between needs and responsibilities to care. Post-hoc subgroup analyses revealed that especially caregivers living together with PWD benefit from DCM compared to caregivers not living together with PWD. DCM provided by specifically trained nurses at patients’ domesticity using an IMS resulted in significant improvement in caregivers’ burden. These improvements were achieved by reducing caregivers’ subjective burden due to behavioral change and perceived conflicts between needs and responsibilities to care.

Persona Development and Educational Needs to Support Informal Caregivers.

Informal caregivers are playing an increasing role in community based care delivery. Research is needed that looks at the educational needs of informal caregivers as a precursor to HIT design to support community care delivery. A challenge is informal caregivers have very diverse educational needs. Personas are an approach to describe user characteristics as part of systems design and this approach could be used to understand and categorize the various educational needs of informal caregivers. This paper addresses this research need and provides a method for persona development and the identification of educational needs for informal caregivers.

Feasibility and effectiveness of a telephone-based social support intervention for informal caregivers of people with dementia: Study protocol of the TALKING TIME project

BackgroundCaring for people with dementia at home requires a significant amount of time, organization, and commitment. Therefore, informal caregivers, mainly relatives, of people with dementia often feel a high burden. Although on-site support groups are known to have positive effects on the subjective well-being (SWB) and perceived social support of informal caregivers, there are cases in which relatives have either no time or no opportunity to leave the person alone or in which there are no support groups nearby. The TALKING TIME project aims to close this supply gap by providing structured telephone-based support groups in Germany for the first time. International studies have shown benefits for informal caregivers.MethodsThe TALKING TIME study is a randomized controlled trial. The effects of the 3-month TALKING TIME intervention will be compared with those of a control group without intervention at two time points (baseline = T0, after 3 months = T1). The control group will receive the TALKING TIME intervention after T1. With a planned sample size of 88 participants, the study is powered to detect an estimated effect size of 0.70 for psychological quality of life, considering an α of 0.05 (two-sided), a power of 80%. Caregivers are informal caregivers who are eligible if they are 18 years of age or older and have cared for a person with diagnosed dementia for at least four hours, four days per week, in the past six months. The exclusion criteria are psychiatric disorders of the informal caregiver. The primary outcome is the mental component summary of the SF-12 rated by informal caregivers. The secondary outcomes for informal caregivers are the physical component summary of the SF-12, the Perceived Social Support Caregiver Scale (SSCS) score, and the Caregiver Reaction Scale (CRS) score. The secondary outcome for care recipients is the Neuropsychiatric Inventory (NPI-Q). For the process evaluation, different quantitative and qualitative data sources will be collected to address reach, fidelity, dosage and context.DiscussionThe results will provide further information on the effectiveness and optimization of telephone-based support groups for informal caregivers of people with dementia, which can help guide the further development of effective telephone-based social support group interventions.Trial registrationClinical Trials: NCT02806583, June 9, 2016

Associations between having an informal caregiver, social support, and self-care among low-income adults with poorly controlled diabetes.

Objective To determine whether the presence of an informal caregiver and the patient's level of social support are associated with better diabetes self-care among adults with poorly controlled diabetes. Methods Cross-sectional study using baseline data from 253 adults of age 30-70 with poorly controlled diabetes. Participants who reported receiving assistance with their diabetes from a friend or family member in the past month were classified as having a caregiver. We used multivariate linear and logistic regression models to evaluate the associations between having a caregiver and level of social support with five self-reported diabetes self-care behaviors: diet, foot checks, blood glucose monitoring, medications, and physical activity. Results Compared to participants with no informal caregiver, those with an informal caregiver were significantly more likely to report moderate or high medication adherence (OR = 1.93, 95% CI: 1.07-3.49, p = 0.028). When we included social support in the model, having a caregiver was no longer significantly associated with medication adherence (OR = 1.50, 95% CI: 0.80-2.82), but social support score was (OR = 1.22, 95% CI: 1.03-1.45, p = 0.023). Discussion Among low-income adults with poorly controlled diabetes, having both an informal caregiver and high social support for diabetes may have a beneficial effect on medication adherence, a key self-care target to improve diabetes control.

Is care moving closer to home? A snapshot in England in 2014

Introduction: In view of the demographic change with its increasing demand for and cost of institutional care, current approaches to health care delivery are not sustainable. To meet future healthcare needs, the National Health Service (NHS) started an extensive transformation following the Health and Social Care Act 2012 in England, changing the structure, accountabilities, funding arrangements and working relationships within the care system. The goal is to improve the integration between different professions and in particular transitions between health and social care.The aim of this transformation is to shift the balance from hospital to the community setting, providing holistic and patient-centric care.The qualitative study described in this abstract examines if and how different stakeholders experience this transformation process.Methods: The study design involved qualitative methods including reflection exercises, individual and focus group interviews, mapping of care network and trigger cards. Patients with a present chronic condition using one or more social and/or community service(s), professionals and representatives from service providers and informal care giver (ICG), were enrolled for this study. Both patients with and without ICG support were included.Data collection and sample: The study involved semi-structured interviews in 22 subjects: six patients (age 70 ± 13; 4 female 4 COPD, 1 HF, 1 mental disorder), five ICG (age 55 ± 10; all female), eight NHS professionals (5 nurses, 1 service commissioner, 1 quality assurance and 1 rapid response team representative) and three representatives from care service (CS) providers.Patients and ICG were asked about the support they received, social and community services they are using and the associated motivation/obstacles, means of communication with different providers and their vision of future care. Professionals and CS providers explained their professional background, tasks and responsibilities, amount and means of interactions with patients and ICG, role in arranging services, coordination, collaboration and follow-up with service providers as well as expected changes in the future.Findings: Insights on integrated care.Community and social service providers lack access to patient information (e.g. health condition). Data sharing and collaboration between health and care organizations is essential to enable holistic care, but currently not sufficiently in place as trust and clear responsibilities need first to be established. As a result, no single care provider oversees the whole picture of a patient.Patients on the other hand interact with different providers, which causes a lot of dissatisfaction as the patient needs to repeat information from one care provider to the other.Shifting care from hospitals into the community: There is a strong incentive to shift care out-of-hospital, closer to the home environment as health professionals are challenged by rising caseloads and limited patient time windows. The coordination of care is therefore shifting to district nurses and community matrons, linking up social services and community resources. However, the landscape of available community health and social care services is region-specific, fragmented and dynamic. As the service offer differs per neighborhood and is rapidly changing, navigating through the service landscape becomes challenging without a currently available up-to-date information supply chain. Care providers rely on their experience and exchange of such information from peers.Empowering patients and ICG: The transformation of the NHS envisions patients to have far greater control of their own care (e.g. by means of shared budgets). However, patients and ICG lack awareness of available resources or benefits they are entitled to, and particularly mental services were mentioned to be lacking. Patients reported the obligation to be proactive and responsible in coordinating their care (e.g. paperwork). They raised concerns that not everybody is willing and/or capable to carry out these tasks. The selection of services should ideally be supported by a guiding professional.Conclusions: Despite the ambition for integrated care, health and social services are still disjoint. This is reflected by limited collaboration, coordination, communication and data exchange between health and care professions. As social and CS are disconnected from the NHS, no professional has the overall picture of which treatment and care a patient can receive and is receiving.Due to the strain on medical professionals, health and care services are increasingly shifted to the community. This process is supported by district and community nurses who coordinate care for patients with chronic conditions. However, these nurses lack information on what services are available.Similar problems were reported by patients, who appreciate having a say in their care, but still need guidance from a medical professional. Patients will be expected to engage more and more in their care, but this may not be suitable for all.

Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review.

Supporting informal caregivers of persons with dementia is considered to be an effective strategy for improving the well-being of caregivers and care recipients and for delaying nursing home placement. Although considerable research has been conducted to investigate the effectiveness of psychoeducational interventions, cognitive behavioral therapy, and occupational therapy, research into the effectiveness of respite care is rare. This systematic review aims to investigate the effectiveness of different types of respite care in supporting informal caregivers of persons with dementia. A systematic literature search was conducted using Web of Science and PubMed, and the Quality Assessment Tool for Quantitative Studies was used to assess the methodological quality. Randomized controlled trials, quasi-experimental studies, pretest-posttest studies without a control group, and cohort studies were included. Seventeen papers met the inclusion criteria. Day care services are effective in decreasing caregiver burden and behavioral problems in persons with dementia, but they also accelerate time to nursing home admission. The results of temporary residential admission are rather mixed and show unexpected adverse effects on both caregivers and care recipients. High-quality comparable evidence on community-based respite care is still lacking, although earlier qualitative evidence indicated promising results. Unlike in previous reviews, we were able to draw some conclusions about the effectiveness of some types of respite care. There is nonetheless still a need for new intervention studies measuring the impact of respite care, especially in-home respite care programs, on the caregiver, the care recipient, and health care resource utilization. Copyright © 2016 John Wiley & Sons, Ltd.

Effectiveness of Supporting Informal Caregivers of People with Dementia: A Systematic Review of Randomized and Non-Randomized Controlled Trials.

Dementia is known as a major public health problem affecting both patients and caregivers, and placing a high financial strain upon society. In community-dwelling patients, it is important to support informal caregivers in order to help them sustain their demanding role. Previous reviews about effectiveness of such supporting strategies often included a small number of studies, focused only on particular supportive types, particular outcomes, or solely on caregivers. A general systematic review was conducted investigating effectiveness of different supportive strategies on at least the well-being of the caregiver or the care-recipient. A systematic literature search was conducted in Web of Science and PubMed. An adapted version of the Downs and Black (1998) checklist was used to assess methodological quality. A new classification was developed to group different types of caregiver support. Fifty-three papers met the inclusion criteria. Although 87% of the interventions were to some extent effective, methods and findings were rather inconsistent. Psychoeducational interventions generally lead to positive outcomes for caregivers, and delay permanent institutionalization of care-recipients. Cognitive behavioral therapy decreases dysfunctional thoughts among caregivers. Occupational therapy decreases behavioral problems among patients and improves self-efficacy of caregivers. In general, those interventions tailored on individual level generate better outcomes. Comparative research on respite care was very rare. Despite methodological inconsistency, supporting caregivers appears to be an effective strategy often improving well-being of caregiver or care-recipient and resulting in additional benefits for society. However, there is a need for more research on the (cost)-effectiveness of respite care.

Effectiveness of interventions to indirectly support food and drink intake in people with dementia: Eating and Drinking Well IN dementiA (EDWINA) systematic review.

BackgroundRisks and prevalence of malnutrition and dehydration are high in older people but even higher in older people with dementia. In the EDWINA (Eating and Drinking Well IN dementiA) systematic review we aimed to assess effectiveness of interventions aiming to improve, maintain or facilitate food/drink intake indirectly, through food service or dining environment modification, education, exercise or behavioural interventions in people with cognitive impairment or dementia (across all settings, levels of care and support, types and degrees of dementia).MethodsWe comprehensively searched Medline and twelve further databases, plus bibliographies, for intervention studies with ≥3 cognitively impaired adult participants (any type/stage). The review was conducted with service user input in accordance with Cochrane Collaboration’s guidelines. We duplicated assessment of inclusion, data extraction, and validity assessment, tabulating data. Meta-analysis (statistical pooling) was not appropriate so data were tabulated and synthesised narratively.ResultsWe included 56 interventions (reported in 51 studies). Studies were small and there were no clearly effective, or clearly ineffective, interventions. Promising interventions included: eating meals with care-givers, family style meals, soothing mealtime music, constantly accessible snacks and longer mealtimes, education and support for formal and informal care-givers, spaced retrieval and Montessori activities, facilitated breakfast clubs, multisensory exercise and multicomponent interventions.ConclusionsWe found no definitive evidence on effectiveness, or lack of effectiveness, of specific interventions but studies were small and short term. A variety of promising indirect interventions need to be tested in large, high-quality RCTs, and may be approaches that people with dementia and their formal or informal care-givers would wish to try.Trial registrationThe systematic review protocol was registered (CRD42014007611) and is published, with the full MEDLINE search strategy, on Prospero (http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42014007611).Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-016-0256-8) contains supplementary material, which is available to authorized users.

Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal.

BackgroundThe European eHealthMonitor project (eHM) developed a user-sensitive and interactive Web portal for the dementia care setting called the eHM Dementia Portal (eHM-DP). It aims to provide targeted support for informal caregivers of persons with dementia and professionals.ObjectiveThe objective of this study was to assess the usefulness and impact of the eHM-DP service in the dementia care setting from two user perspectives: informal caregivers and professionals.MethodsThe evaluation study was conducted from June to September 2014 and followed a before-after, user-participatory, mixed-method design with questionnaires and interviews. The used intervention was the eHM-DP: an interactive Web portal for informal caregivers and professionals that was tested for a 12-week period. Primary outcomes for caregivers included empowerment, quality of life, caregiver burden, decision aid, as well as perceived usefulness and benefits of the eHM-DP. Primary outcomes for professionals involved decision aid, perceived usefulness, and benefits of the eHM-DP.ResultsA total of 25 informal caregivers and 6 professionals used the eHM-DP over the 12-week study period. Both professionals and informal caregivers indicated perceived benefits and support by the eHM-DP. In total, 65% (16/25) of informal caregivers would use the eHM-DP if they had access to it. Major perceived benefits were individualized information acquisition, improved interaction between informal caregivers and professionals, access to support from home, and empowerment in health-related decisions (PrepDM Score: 67.9). Professionals highlighted the improved treatment and care over the disease course (83%, 5/6) and improved health care access for people living in rural areas (67%, 4/6). However, there was no improvement in caregiver burden (Burden Scale for Family Caregivers) and quality of life (EuroQol-5D-5L) over the study period.ConclusionsOur study provides insight into the different user perspectives on an eHealth support service in the dementia treatment and care setting. These results are of importance for future developments and the uptake of eHealth solutions in the dementia domain and reinforce the importance of early user involvement. Turning to the primary target of the eHM-DP service, our findings suggest that the eHM-DP service proved to be a valuable post-diagnostic support service, in particular for the home-based care setting. Further research on a larger scale is needed to enhance the implementation in existing health care infrastructures.

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

BackgroundIn 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.MethodsA 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.ResultsThere 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.ConclusionsCounselling, 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.