Formal Caregivers Research Articles

ISupport Swiss: a community based participatory approach to culturally adapt the WHO online intervention for family caregivers of people with dementia

Objective:Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based online program developed by the World Health Organization (WHO) to provide education and support to informal everyday care. The study aims to describe the process and results of iSupport cultural adaptation in Switzerland.Methods:We used a mixed-methods design, with a community based participatory research approach. The adaptation of iSupport followed WHO adaptation guidelines and developed into five steps: content translation, linguistic and cultural revision by the members of the Community Advisory Board, validation with health professions faculty, validation with formal and informal caregivers, and fidelity check appraisal by members of the WHO.Results:Findings from each phase showed and consolidated the adjustments needed for a culturally adapted Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (e.g., from lesson to chapter; from suffering from dementia to affected by dementia); graphics and illustrations (e.g. from generalized objects’ illustrations to featured humans’ illustrations); exercises and case studies (e.g., from general, non-familiar scenarios to local and verisimilar examples); and extra features to add to the online version (e.g., short tailoring assessment questionnaire, interactive forum section, glossary). Additionally, based on the suggestions from the interviews with health professions faculty, we also created a training of trainers (ToT) version of iSupport for health care professionals.Conclusion:Our results show that adopting a community based participatory approach and collecting lived experiences from the final users and stakeholders is essential to meet local needs and to inform the further development, testing and implementation of an online evidence-based intervention to a specific cultural context.

S13: Technology enabled care for neuropsychiatric symptoms of dementia: implementation at the point of care

Symposium OverviewNeuropsychiatric symptoms of dementia (NPSD) are diverse and prevalent group of symptoms that impose significant challenge for people living with dementia (PLWD), their caregivers, and the system of care. Quality standards in all jurisdictions stipulate that individualized, non-pharmacological intervention for NPSD needs to be provided to PLWD before pharmacological interventions are used due to modest effect size and the risks involved in using the latter. Implementation of individualized non-pharmacological plan of care face many challenges including limited staffing, issues with skill development in formal and informal caregivers, difficulty in achieving individualization of behavioral plans with precision, issues with environmental design to name few. To that end, technology has been proposed to address some of these challenges with significant promise at the proof-of-concept level but real-life implementation remains limited.At the Ontario Shores Centre for Mental Health Sciences in Whitby, Ontario, in collaboration with Ontario Tech University, we have established the “Advancement for Dementia Care Centre”, whereby technological solutions are tested at the point of care considering implementation challenges and engaging formal and informal caregivers in the co-design and implementation of these interventions.In this symposium, we aim to provide a framework for the successful implementation of different technological solutions for PLWD and NPSD and present the design and preliminary data from four projects that use technology to facilitate standardized, individualized non-pharmacological care for PLWD and their caregivers. The symposium will have 4 talks: 1-Rationale and review of technological solutions to detect emotional distress in PLWD2-virtual reality to provide reminiscence therapy for PLWD3-virtual reality to provide caregiver skill development and problem solving4-the use of simulation platform to provide microcredentialing of health care providersThe objectives of this symposium are: 1-discuss opportunities and challenges related to implementing technological solutions for NPSD at the point of care2-discuss a framework for co-designing technological solutions with caregivers at the point of care3-discuss rationale and preliminary findings of 4 projects implemented at the point of care for PLWD presenting with NPSDThis symposium is presented by a multi-ethnic, interprofessional panel including earlier career knowledge mobilization caregiver intervention scientist, a mid career nurse PhD scientist, and a senior clinician investigator geriatric psychiatrist representing a large collaboration team including technology developers, caregivers, engineers, knowledge users and clinicians.

Location Dynamics in Northern Rural Minnesota: Barriers and Facilitators for ADRD Diagnosis and Care

AbstractBackgroundThe location dynamics of rural northern Minnesota involve shifting economic structures, demographic transitions, and diverse physical environments that affect access to Alzheimer’s Disease and Related Dementias (ADRD) diagnosis, care and health services.MethodWe conducted semi‐structured interviews with 56 key informants including health care providers (n = 7), health leaders and administrators (n = 10), social workers (n = 12), formal and informal caregivers (n = 19), and healthy older adults (n = 8) across northern Minnesota concerning the unique protective and risk factors and the socio‐cultural context of ADRD in the region. Interviews were transcribed and thematically coded in QSR NVivo using a lived experience framework.ResultOur analysis reveals that winter weather, depopulation trends, and lack of healthcare facilities and services and aspects of rural culture create multi‐faceted challenges to healthy aging and ADRD diagnosis and care. Rural residents often rely on social capital, community institutions, volunteerism, and families to compensate for the lack of medical services. Rural people without social or financial resources may have to relocate to different communities to receive care and services. This lack of access to local care influences stigma and fear of dementia diagnoses in rural areas. These experiences shape cultural understandings of ADRD, and health seeking behaviors, which can be characterized as hesitant and dismissive, creating additional challenges for community interventions.ConclusionThe location dynamics of rural northern Minnesota shape unique cultural understandings around ADRD diagnosis and care that limits the effectiveness of existing interventions and demands tailored approaches to overcome the lack of local resources, geographic distance, and winter weather constraints. Dense social networks, a culture of volunteerism, and community capacity to develop medical infrastructure are key assets used to overcome these challenges to ADRD care.

Workshop 3: Develop, implement and evaluate technology for social health in dementia: lessons in best practice from the European DISTINCT network

Objective:DISTINCT is a Marie Sklodowska-Curie Innovative Training Network. Supported by the INTERDEM network and European Association of Geriatric Psychiatry, DISTINCT aimed to establish a multi-disciplinary, multi-professional and intersectorial European research framework, for assistive technologies to support social health in dementia. In this symposium, we present research associated with the maturity lifecycle (development to evaluation) of four technologies: the ROADMAP online self-management intervention; online peer support for people with young onset dementia; online acceptance and commitment therapy for caregivers (ACT); and the FindMyApps tablet-based intervention for people with dementia and their caregiver.Method:In 2019, 15 ESRs were recruited to 13 research organizations across 8 European countries. Research projects were launched in collaboration with people living with dementia and caregivers, and industry partners. Projects were adapted to meet challenges and opportunities due to the COVID-19 pandemic. The projects presented in this symposium employed a variety of research paradigms (user-centred design, feasibility and implementation studies, randomized controlled trials). Key insights from each project were combined into best practice guidance for developers, researchers, healthcare professionals and people living with dementia, covering the full innovation lifecycle.Results:All DISTINCT research projects are now in the final stages, having so far resulted in more than 35 peer reviewed publications and many contributions to international conferences. Insights were incorporated into the Best Practice Guidance for Human Interaction with Technology in Dementia, published in December 2022, which will be updated by the end of 2023 with further insights from completed projects. Key findings presented in this symposium concern: development of ROAD MAP online; best practices for, and barriers to, online peer support; acceptability and preliminary effectiveness of online ACT; effectiveness and cost effectiveness of FindMyApps.Conclusion:There is growing evidence that assistive technologies are feasible and effective for supporting social health of people with dementia and caregivers. People living with dementia, formal and informal caregivers, policymakers, designers, and researchers can refer to the DISTINCT Best Practice Guidance to inform their approach to assistive technology. Future research can build on these results, to further understand and improve usability, (cost-)effectiveness, and implementation of assistive technology in dementia.

The impacts of COVID-19 restrictions on care-givers of people with cognitive impairment and their support needs: a mixed-methods systematic review

Abstract The COVID-19 pandemic and ensuing restrictions/lockdowns have caused significant physical and psychological consequences for people with cognitive impairment who are heavily dependent on their care-givers. However, little is known about the impact on care-givers, the factors that exacerbate their situation and what supports they need. The aims of this paper are threefold: (a) to examine the impact of COVID-19 physical restrictions on both formal and informal care-givers of people with cognitive impairment; (b) to identify attributing factors influencing this impact; and (c) to recognise their support needs. Further, this paper informs future research, policy and practice. Guided by the Joanna Briggs Institute framework, a systematic review was conducted using a mixed-methods convergent integrated approach. Eight databases were searched using keywords related to COVID-19 restriction, dementia care-givers, impacts and care settings, followed by a manual search. The study was limited to primary research published in English between January 2020 and December 2021. Of the 840 records identified, 30 met the inclusion criteria. Service withdrawal and social distancing has effectively led to the reprivatisation of care to the family, particularly women. Care-givers experienced negative impacts including reduced psychological wellbeing and physical health, increased care burden and financial difficulties. A number of clinical attributes and socio-demographic factors influenced the COVID-19 impact on care-givers. Consequently, counselling services, assistance with care and financial support were identified as support needs. Implementation of new support and the strengthening of existing services are recommended to enhance resilience, build capacity to support care-givers in any given situation and mitigate the effects of future outbreaks.

The impact of need-based care on formal caregivers' wellbeing in nursing homes: A cluster randomized controlled trial

BackgroundNeed-based care is a structured and standardized model that supports formal caregivers in nursing homes in delivering person-centered care by responding with tailored non-pharmacological interventions on residents' unmet needs as well as having positive effects on behavioral and psychological symptoms on residents with dementia. However, limited resources as well as the shortage of caregivers in nursing homes make the implementation of need-based care challenging, especially when it comes to finding ways to spend more time with residents. The aim of this study is to evaluate the impact of the implementation of need-based care in nursing homes on formal caregivers' wellbeing. MethodsA three-arm cluster randomized controlled trial was set up in 24 Belgian nursing homes: formal caregivers in the ‘need-based care’ group (intervention; n = 195) spent time twice a week with residents who had behavioral and psychological symptoms according to the principles of need-based care while formal caregivers in the ‘time’ group (n = 257) filled in the way they spent time twice a week; a third group delivered standard care (n = 299). An implementation strategy was built upon the Implementation Quality Framework and used in the ‘need-based care group’. A total of 741 formal caregivers completed the digital questionnaire at one or more of the five time points (every nine weeks) between November 2021 and July 2022; they rated their sense of competence in dementia care, level of burnout, and, level of engagement. Moments of time were registered in a printed registration book. ResultsOnly formal caregivers from the ‘need-based care’ group experienced a higher sense of competence in dementia care at time points three (p = 0.010) and four (p = 0.001) compared with baseline with an increase of respectively 1.5 (95 % confidence interval [0.25, 2.84]) and 2.4 (95 % confidence interval [0.77, 4.04]) points. No differences in scores on burnout and engagement were found. ConclusionDespite challenging workforce circumstances in nursing homes, caregivers in the need-based care group as well as in the time group were able to spend time twice a week with residents with behavioral and psychological symptoms. No negative effects were found on formal caregivers' wellbeing after the implementation of need-based care in nursing homes. However, it requires strong leadership and the use of well-considered implementation strategies including reflective practice. Trial registryTrial registration number ISRCTN56768265 (10/08/2023).

Person-centred caregiver singing for people living with dementia in South Africa: A mixed methods evaluation of acceptability, feasibility, and professional caregivers' experiences.

Dementia care in South Africa faces challenges including a paucity of published research, a prevalent medical model in healthcare, and inadequate caregiver training. Music is a meaningful psychosocial intervention in dementia care, yet its application is not always safe and effective. A training protocol was codesigned to enhance caregivers' delivery of person-centred care through attuned, live singing. This study explored the acceptability and caregivers' experiences of a person-centred caregiver singing (PCCS) protocol in South Africa. A PCCS workshop was applied at seven aged care homes in Cape Town, South Africa. Forty-one formal caregivers adhered to inclusion criteria and consented to attend one workshop on PCCS. Mixed methods data collection was obtained from questionnaires containing a Likert scale and written reflections. Quantitative data were analysed through nonparametric tests and narrative descriptions, and qualitative data through thematic content analysis. Findings were integrated deductively using seven components of acceptability. Findings converged to show caregivers' positive experiences, highlighting observed improvements in residents' wellbeing, caregivers' capabilities, empathic connection, and person-centred care beyond the one-on-one. Caregivers' limited song repertoire and residents' unpredictability hindered implementation, however, the skills acquired appeared useful and applicable. Integration of findings suggests the acceptability of PCCS as caregivers experienced PCCS as a helpful, easy-to-implement intervention that contributes to their delivery of person-centred care. Further research focused on caregiver self-efficacy, empathy, and caregivers' own personhood is needed as well as determining the most effective strategies to ensure maximum uptake and sustainability in the sector. Formal caregivers participated in this study, both attending the training and implementing the singing protocol with residents in their care at their respective care homes. The people living with dementia residing at the care home were recipients of the singing protocol but not included as participants in the research.

Economic Burden of Alzheimer’s Disease: A Systematic Review

ObjectivesAlzheimer’s disease (AD) has become one of the most prevalent neurodegenerative disorders among the elderly. The global cost of dementia is expected to reach US $2 trillion in 2030. In this systematic review, existing evidence on the cost of dementia specific to AD is appraised. MethodsA comprehensive search was done on 3 databases, namely PubMed, ScienceDirect, and Web of Science, to identify original cost-of-illness studies that only evaluate the economic burden of AD up to August 2022. The risk of bias in the studies was assessed using Consolidated Health Economic Evaluation Reporting Standards 2022 criteria. Cost articles without specifying etiology of AD or those in non-English were excluded. ResultsTwelve of 5536 studies met the inclusion criteria. The total annual cost of AD per capita ranged from US $468.28 in mild AD to US $171 283.80 in severe AD. The cost of care raised nonlinearly with disease severity. Indirect caregiving cost represented the main contributor to societal cost in community-dwelling patients. When special caregiving accommodation was opted in daily care, it results in cost shifting from indirect cost to direct nonmedical cost. Formal caregiving accommodation caused increase in direct cost up to 67.3% of overall economic burden of the disease. ConclusionsAD exerts a huge economic burden on patients and caregivers. Overall rise of each cost component could be anticipated with disease deterioration. Choice of special caregiving accommodation could reduce caregiver’s productivity loss but increase the direct nonmedical expenditure of the disease from societal perspective.

Factors Affecting Physical Activity in People with Dementia: A Systematic Review and Narrative Synthesis.

Physical activity (PA) has positive effects on the physical and cognitive functioning of people with dementia. Knowledge about what limits and stimulates people with dementia to participate in PA is essential to promote effective PA implementation and enhance PA levels. Previous reviews primarily included opinion-based studies, using data from interviews, focus groups or dyads. By including implementation studies, we aimed to elaborate on previous reviews by identifying new barriers to PA and new facilitators and motivators for PA. We conducted systematic searches in Pubmed, PsychInfo and Web of Science for studies published up to the 21st of September 2021. Search terms were related to the population of people with dementia, PA interventions and implementation outcomes. Studies were included if PA participation was investigated during actual PA implementation. No restrictions were made regarding study design, date of publication, PA type or outcome measures. Studies not implementing PA or not evaluating the implementation were excluded. Based on 13 empirical studies, we identified 35 barriers, 19 facilitators and 12 motivators. Of these, 21 barriers, 11 facilitators and 4 motivators were not identified by previous reviews. New factors are related to the support for people with dementia from informal and formal caregivers, e.g., revealing the importance of a trusting relationship. Furthermore, support for staff from the institution or an external party is needed to overcome doubts about PA, for example, related to safety and effects. New factors also suggested specific recommendations for the content and organization of the PA intervention, for instance, related to how to give instructions. Overall, factors affecting PA identified with opinion-based or implementation studies are complementary. Our extended overview shows the complexity of PA implementation and may help to personalize PA, develop implementation strategies, facilitate actual PA implementation and free up resources needed for effective implementation.

Exploring Experiences of Pain Management Among Family Caregivers of Community-Dwelling Older Adults With Dementia.

Pain is often underreported and under-treated in older adults with dementia. The role of family caregivers (FCGs) in managing pain for their loved ones with dementia living in community has been significantly burdensome. Surprisingly, research has not delved into the experiences of FCGs' concerning pain management in this context. A qualitative descriptive study was conducted to gain a deep understanding of FCGs' experiences in managing pain for their loved ones. Family caregivers participated in semi-structured face-to-face or telephone interviews. Inclusion criterion included being an adult providing care to community-dwelling older adults with dementia. Recruitment stopped upon reaching thematic saturation. Basic demographic characteristics was also collected. Constant comparison analytic method was employed. The study included 25 FCGs in central Virginia, spanning ages from 29 to 95. Participants were predominantly white, female, married, and had a minimum high school education. Most of them were adult children (52%) or the spouses (28%) of the care recipients. Four thematic categories emerged around exploring FCGs' pain management experiences: (1) Values; (2) Barriers; (3) Support; and (4) Adaptation. Each theme included sub-themes. Family caregivers follow their values to make decisions in pain management. Barriers existed for effective pain management. Adaptation and support from professional or formal caregivers greatly improved FCGs' perception of their competence in pain management. The finding underscores the need for further research and the development of interventions aimed at enhancing FCGs' perception of self-efficacy in this crucial aspect of caregiving.

Intellectual disabilities and dementia: New tasks and experiences of Austrian formal caregivers.

In Austria, due to its history, only relatively little research on the topic of intellectual disabilities and dementia has been conducted to date. The present study thus aims to explore the challenges and tasks currently facing formal caregivers, together with assessing their wishes for further development. Ten semi-structured interviews were held with formal caregivers. Interviews were transcribed and analysed by means of structured qualitative content analysis. Caregivers must deal with conflicts between residents, and with increasing demands for care and emotional support. Education and training on dementia and intellectual disability are mostly of high quality, but still remain insufficient. Caregivers would like to see suitable adaptation of care premises, smaller groups, more staff and better training on dementia and intellectual disability. To ensure quality care and 'ageing in place', caregivers and providers need to pay greater attention to dementia-related changes when planning and adapting services.

Needs Assessment and the Identification of Palliative Care Dimensions of the Essential Service Package for the Elderly with Alzheimer's Disease: A Mixed Exploratory Study.

This study was conducted with the aim of assessing the needs and determining the care dimensions of the essential palliative care service package for the elderly with Alzheimer's disease. The mixed exploratory study was conducted in three phases. The first phase of the study was conducted in the form of a qualitative study and a literature review. This qualitative research was done through in-depth and semi-structured interviews with 19 qualified caregivers (11 informal caregivers and 8 formal caregivers) The samples were selected using the purposive sampling method by referring to hospitals, nursing homes, and active branches of the Alzheimer's Association in some provinces. In the second phase, the dimensions of palliative care were codified, and in the third phase, the prioritization and the validation of the dimensions of palliative care were performed in the form of two Delphi rounds. Based on the results of the first phase of the study, the care dimensions of the service package were placed in eight categories based on National Consensus Project. In the second phase, the needs of Alzheimer's patients were arranged in the form of a questionnaire consisting of 8 parts, with 180 indicators. Then, in the third phase, the dimensions of the palliative care essential package were designed with 74 items in the form of 4 dimensions. The dimensions of the essential service package of palliative care included a series of interventions as well as physical, psychological, cognitive, and spiritual support.

Social Isolation of Older Adults, Family, and Formal Caregivers During the COVID-19 Pandemic: Stories and Solutions Through Participatory Action Research.

This participatory action research (PAR) aimed to understand the health implications of guidelines impacting social isolation among frail community-dwelling older adults and their family and formal caregivers during the coronavirus disease (COVID-19) pandemic. Reflexive thematic analysis (RTA) of data collected from 10 policy/procedural documents revealed four themes: valuing principles, identifying problem(s), setting priorities, and making recommendations. Interviews with 31 participants from Peterborough, Ontario, also revealed four themes: sacrificing social health, diminishing physical health, draining mental health, and defining supports. Recommendations to decision makers were finalized at a knowledge exchange event involving participants and members of Age-friendly Peterborough. Key findings demonstrate the need for Canadian governments and health and social service agencies to enhance access to technology-based interventions, and educational and financial resources for caregivers. Meaningful communication and collaboration between older adults, caregivers, and decision makers are also needed to reduce the gap between policy and practice when addressing social isolation.

A theory of cultural translation in healthcare for multilingual older adults living with dementia and their caregivers

Objective: The United States is a multicultural, multilingual country; as a recognized feature of the American population, the challenges of caregivers seeking services for multilingual older adults still need to be better understood. This study aims to understand the experience of caregivers who sought healthcare services for a multilingual older adult living with dementia.Methods: Using Constructivist Grounded Theory, formal and informal caregivers participated in semi-structured interviews to ascertain their experiences seeking health services for multilingual older adults with dementia.Results: Several themes emerged, including Cultural Translator, Mitigating Relationships, Leaning, Seeking Help, Meeting them where they are, and a Rigid Healthcare System. Lastly, the participants’ descriptions unveiled a phenomenon identified as cultural translator stress. Cultural Translator stress may occur due to the added responsibilities of advocacy, healthcare system navigation, language interpretation, and explanations of culturally based idioms on behalf of the multilingual older adult with dementia for the healthcare provider.Conclusions: As our understanding of care for multilingual older adults with dementia improves, awareness of their caregiver's needs and mechanisms to support this unique population should emerge. Factors such as culture, access to culturally appropriate services, and services needed to support family caregivers are needed. Further studies are needed to understand the stressors related to caring for a multilingual adult living with dementia or the phenomenon of cultural translator stress.

A virtual reality intervention to improve formal caregivers’ understanding of community-dwelling people with dementia: a pilot study

Background: The optimum approach to enhance the understanding toward dementia is to experience how patients feel as they experience the manifestations of the disease. The application of virtual reality (VR) and relevant innovative technologies for developing caregiver training programs allows caregivers to better understand dementia and empathize with patients. Objectives: To develop a VR-based experiential training course on individualized care for the behavioral and psychological symptoms of dementia (BPSD). Methods: The participants were caregivers of patients with dementia. They assessed the usability of the VR product after the intervention and the VR experience as a preliminary measure of the effectiveness of the intervention using a usability scale and a self-reported appraisal scale, respectively. Results and Conclusion: Ten in-service and in-home caregivers completed the VR training course. The course yielded a usability score of 74.06 points, indicating excellent usability. The content validity index (CVI) of the self-reported VR experience appraisal scale ranged from 0.8–1, scale-level CVI was 0.81, and reliability (Cronbach’s α) was 0.929. The mean score of the overall scale was 4.67 ± 0.33. These findings suggest that the VR-based experiential training course enabled the home caregivers to deepen their understanding of the BPSD shown by community-dwelling patients and, therefore, to provide better care services. The course developed in this study is the first VR course directed toward dementia care in Taiwan. Given its excellent usability, as well as the effectiveness of the VR experience appraisal scale for deepening the caregivers’ skills in managing patients’ BPSD symptoms, the course can be promoted and applied in caregiver training programs for dementia in the future.

Urgent needs of caregiving in ageing populations with Alzheimer's disease and other chronic conditions: Support our loved ones.

The ageing process begins at birth. It is a life-long process, and its exact origins are still unknown. Several hypotheses attempt to describe the normal ageing process, including hormonal imbalance, formation of reactive oxygen species, DNA methylation & DNA damage accumulation, loss of proteostasis, epigenetic alterations, mitochondrial dysfunction, senescence, inflammation, and stem cell depletion. With increased lifespan in elderly individuals, the prevalence of age-related diseases including, cancer, diabetes, obesity, hypertension, Alzheimer's, Alzheimer's disease and related dementias, Parkinson's, and other mental illnesses are increased. These increased age-related illnesses, put tremendous pressure & burden on caregivers, family members, and friends who are living with patients with age-related diseases. As medical needs evolve, the caregiver is expected to experience an increase in duties and challenges, which may result in stress on themselves, and impact their own family life. In the current article, we assess the biological mechanisms of ageing and its effect on body systems, exploring lifestyle and ageing, with a specific focus on age-related disorders. We also discussed the history of caregiving and specific challenges faced by caregivers in the presence of multiple comorbidities. We also assessed innovative approaches to funding caregiving, and efforts to improve the medical system to better organize chronic care efforts, while improving the skill and efficiency of both informal and formal caregivers. We also discussed the role of caregiving in end-of-life care. Our critical analysis strongly suggests that there is an urgent need for caregiving in aged populations and support from local, state, and federal agencies.

Patients’ and next of kin’s expectations and experiences of a mobile integrated care model with a home health care physician – a qualitative thematic study

BackgroundThe organizational principle of remaining at home has offset care from the hospital to the home of the older person where care from formal and informal caregivers is needed. Globally, formal care is often organized to handle singular and sporadic health problems, leading to the need for several health care providers. The need for an integrated care model was therefore recognized by health care authorities in one county in Sweden, who created a cross-organisational integrated care model to meet these challenges. The Mobile integrated care model with a home health care physician (MICM) is a collaboration between regional and municipal health care. Descriptions of patients’ and next of kin’s experiences of integrated care is however lacking, motivating exploration.MethodA qualitative thematic study. Data collection was done before the patients met the MICM physician, and again six months later.ResultsThe participants expected a sense of relief when admitted to MICM, and hoped for shared responsibility, building a personal contact and continuity but experienced lack of information about what MICM was. At the follow-up interview, participants described having an easier daily life. The increased access to the health care personnel (HCP) allowed participants to let go of responsibility, and created a sense of safety through the personalised contact and continuity. However, some felt ignored and that the personnel teamed up against the patient. The MICM structure was experienced as hierarchical, which influenced the possibility to participate. However, the home visits opened up the possibility for shared decision making.ConclusionParticipants had an expectation of receiving safe and coherent health care, to share responsibility, personal contact and continuity. After six months, the participants expressed that MICM had provided an easier daily life. The direct access to HCP reduced their responsibility and they had created a personalised contact with the HCP and that the individual HCP mattered to them, which could be perceived as in line with the goals in the shift to local health care. The MICM was experienced as a hierarchic structure with impact on participation, indicating that all dimensions of person-centred care were not fulfilled.

Well-Being of Parents of Children with Disabilities—Does Employment Status Matter?

Being a parent of a child with a disability brings with it special burdens, e.g. extraordinary caregiving responsibilities, which can have a negative impact on other areas of life and the well-being of parents in general. The aim of this study is to examine the differences in various aspects of well-being and social support between parents who are employed in addition to having caregiving responsibilities, unemployed parents, and parents who are formal caregivers (they receive financial support to care for their child). The online survey included 165 unemployed parents, 467 employed parents (273 full-time and 194 part-time), and 182 formal caregivers. Multivariate analyses of covariance (MANCOVAs) showed that both full-time and part-time employed parents had higher levels of life satisfaction, global health, and social support than unemployed parents, when controlled for the child’s level of disability and the parents’ level of education. Formal caregivers and unemployed parents did not differ significantly in the variables of well-being or social support. Our results suggest that a social measure introduced in Croatia to facilitate parents of children with disabilities to work have a positive impact on parental well-being, and that social support from society for unemployed parents and formal caregivers needs to be improved.

Development of a person-centered caregiver singing model for formal caregivers of people living with dementia in South Africa

This action research study explored the co-design of a person-centered caregiver singing (PCCS) protocol and caregivers’ experiences of applying the PCCS intervention with people living with dementia. Eight caregivers across two care homes participated in four iterative cycles aimed at refining the training. Qualitative data collected from semi-structed group interviews, individual interactions and researcher reflections were analysed via thematic analysis which informed the refinements to the training protocol. A Person-Centered Caregiver Singing Model was developed from the thematic findings relating to caregivers’ experiences of applying the PCCS intervention: enhanced caregiver capabilities, resident's wellbeing, improved relationship, the positive ecological shift, and ease of caregiving. PCCS fostered caregivers’ empathy and self-efficacy, helping them better attune to and meet the needs of people with dementia. Findings suggest music therapists could share music therapy-informed skills with caregivers for use in daily care. Further research would be beneficial to understand the relationship between live music interventions and caregivers’ self-efficacy and empathy, and to explore the training barriers in South Africa.

Developing a comprehensive model of home-based formal care for elderly adults in Iran: A study protocol.

Due to the increasing Iran's aging population, designing a home care model is necessary. However, the data on designing the home care model for elderly adults among developing countries are limited. This study will be carried out to develop a formal home-based care model for elderly adults in Iran. This multi-method study will include three phases: First, Mixed-methods sequential explanatory study including two steps: One, survey to determine the prevalence of dependence on formal and informal caregivers among people aged ≥ 60 years living in Tabriz metropolis; and two, content analysis approach includes face-to-face, semi-structured interviews with the older adults receiving formal care at home, their caregivers and relevant key informants on the characteristics of care and caregiver, challenges and expectations of standard care. In phase 2, a scoping review will be used to find out the components of home care in other countries, such as care provider organization, caregivers training, and financing. PubMed, Scopus, Web of Science, EMBASE, Google scholar databases and grey literature will be run to retrieve relevant evidence using proper MeSH terms. In phase3, the triangulation method (using the results of the previous phases, reviewing national upstream documents and the focus group discussion) will be done to reach consensus and design the initial model for the Iranian context. In the following, a Delphi study will be conducted on the validation and feasibility of the developed model. The current health infrastructure in Iran is focused on caring for younger people, despite the near future population aging. Most studies have addressed the challenges of geriatric care, but no study has addressed the various dimensions of home care in Iran and how to provide this service to elderly adults. Providing a comprehensive model of home care for the elderly can improve the quality of life and satisfaction of the elderly and their caregivers.