Role Of Informal Caregivers Research Articles

The role of objects in negotiations in convoys of care: Addressing fundamental concerns of informal caregivers

Due to an increased policy focus on informal care in many Western countries, professionals and informal caregivers increasingly grow more interdependent. Increased involvement of informal caregivers in professional care has consequences for the work of professionals, the care that is received by care recipients, and the role of informal caregivers. Care needs to be negotiated between them within the dynamic networks of care recipients and caregivers (i.e., “care convoys”). Scant attention has been given to objects as part of these convoys and negotiations. Therefore, in this paper, we answer the question: How do objects become part of and what is their role in the negotiations between healthcare professionals and informal caregivers? We use interview data from 48 participants (care recipients, professionals, informal caregivers, and persons in managerial positions). In the results, we discuss how objects, in terms of their affordances and the values they embody, become important in the relationship between professionals and informal caregivers and how they become part of negotiations on quality of care. We find that seemingly mundane objects become topics of conversation to address more fundamental concerns in how healthcare is organized for and provided to individual care recipients. Our study helps to open the care convoys model to objects as important actors and further understand the politics within care convoys.

Polish adaptation and validation of a family appraisal of caregiving questionnaire for palliative care (FACQ-PC)

Increasing numbers of people are taking on the role of informal caregivers of oncology patients in the advanced stages of the disease. The outcomes of such a decision are both positive (e.g. strengthening of bonds) and negative (e.g. strain). Their assessment is necessary to customise appropriate interventions for caregivers and is made possible by the FACQ-PC (multi-dimensional Family Appraisal of Caregiving Questionnaire for Palliative Care) – a tool used to assess the functioning of informal caregivers of patients receiving home-based palliative care. The aim of this study was to determine the psychometric properties of the Polish adaptation of the FACQ-PC. The study involved 150 informal caregivers of patients receiving palliative care at home, including 106 women and 44 men aged between 22 and 77 years. Study participants completed the Polish version of the FACQ-PC and a series of questionnaires measuring positive and negative feelings (SUPIN), stress (PSS-10) and satisfaction with family life (SOR- H). The study did not confirm the four-factor structure of the questionnaire; instead, a three-factor structure was found to be more appropriate. The following factors were determined: negative outcomes, positive caregiving appraisals and family well-being. Based on a validation review, the high reliability of the individual scales was established, and internal relevance was confirmed. FACQ-PC-PL was adopted as the abbreviated name of the tool. This tool can be used in scientific research and for initial assessments conducted in a clinical setting.

A journey through transitional care-family members' experiences post a life-threatening situation: A qualitative study.

Being a family member to someone who suffers from a serious illness can change one's perspectives about life. A sudden and severe illness can result in a demanding journey that involves acute admission to hospital, intensive care, post-care, and finally, returning home. To describe the experience of staying beside a next of kin throughout the healthcare journey, from the onset of illness at home, to the intensive care unit, post-care, and returning home. The study employed a qualitative design, with data collected via semi-structured interviews and analysed using reflexive thematic analysis. A purposive sampling was used to recruit participants (n = 14), who had experiences of staying beside a next of kin throughout the healthcare journey from the onset of illness to discharge from the hospital. Family members' experiences were captured under the overarching theme Journey through an emotional turmoil and the themes Entering a new world, Continuing the journey towards something unknown, and Striving for the new normal at home. They described going through a non-linear process, characterised by transitions or changes in several aspects. The transitions included shifts in the roles that the family members played, in the various environments they found themselves in, and in the progression of the patient's illness or injury. The study suggested that family members with a next of kin who experienced life-threatening situations undergo challenging transitions. The informal caregiver role placed on family members of intensive care unit-survivors significantly impacts their lives and the healthcare systems should prioritise providing high-quality support to family members throughout the entire healthcare journey. Elevating the importance of nursing care within the healthcare system can contribute to delivering holistic care and facilitating transitions. Further research should focus on understanding the support that family members perceive as necessary to facilitate their transition and enhance their well-being.

Virtual Reality Combined With Psychoeducation to Improve Emotional Well-Being in Informal Caregivers of Alzheimer's Disease Patients: Rationale and Study Design of a Randomized Controlled Trial.

Care for community-dwelling people with dementia is frequently delegated to relatives, who find themselves in the role of informal caregivers with no practical management knowledge. This situation exposes caregivers to increased risk for emotional wellbeing. The current study aims to test whether the integration of the efficacy of an immersive virtual reality (VR) experience into an online psychoeducational program impacts caregiver empathy and therefore emotional wellbeing. One-hundred informal caregivers of mild-to-moderate Alzheimer's disease (AD) patients will be enrolled and randomly assigned to (i) an online psychoeducational program (control arm); or (ii) an online psychoeducational program integrated with VR (experimental arm). VR will consist of 360-degree videos involving the caregivers to an immersive experience of dementia symptoms from the patient's perspective. Before, after the intervention and after 2months, all participants will complete validated clinical scales for caregiver burden and anxiety (primary outcomes) and sense of competence and dispositional empathy (secondary outcomes). A subsample of 50 participants will also undergo MRI exam, including structural and functional (resting-state and task-functional MRI [fMRI]) sequences. The fMRI task paradigm will use emotional stimuli to evaluate the neural correlate of empathy, by stressing its cognitive and affective components. The main outcome will be the change in the clinical assessment; the secondary outcome will be the change in brain connectivity of networks subserving the empathic and emotional functioning. We expect that the psychoeducational program will decrease anxiety and stress, enabling caregivers to perceive themselves capable of managing AD patients at home, educating them on symptom handling and boosting their cognitive empathy. In the experimental intervention, the VR-based experience will act as an add-on to psychoeducation, leading to greater improvement in the assessed clinical dimensions. VR should, in fact, enable a deeper understanding of disease symptoms and improve caregivers' cognitive empathy. We expect that the experimental intervention will result in deeper comprehension of disease symptoms and further strengthen caregivers' cognitive empathy. At the neural level, we expect to observe increased activation in circuits subserving cognitive empathy and decreased activation in circuits underlying affective empathy. To the best of our knowledge, this will be the first randomized controlled trial assessing the effect of combining psychoeducational interventions with VR-based experience in caregivers, and assessing both clinical and imaging outcomes. Registered in ClinicalTrials.gov (NCT05780476).

The role of coping and positivity in shaping mental health among Portuguese informal caregivers

The role of informal caregivers is increasingly relevant in the current sociodemographic context, with Portugal having an estimated 1.3 million caregivers. This study explores the relationship between coping strategies, Positive Life Orientation (PLO), and mental health among 133 Portuguese informal caregivers. Using a quantitative, cross-sectional methodology, results show a significant association between specific coping strategies, PLO, and variables related to distress and well-being. PLO and instrumental support positively predict well-being, while duration of care and self-blame and PLO positively predict depression, and positive reappraisal and positivity negatively predict depression. Religion, self-blame, and seeking emotional support are positively associated with anxiety, while religion, self-blame, and seeking emotional support positively predict stress, and positivity negatively predicts stress. PLO emerges as the strongest predictor of well-being. These findings underscore the importance of coping strategies and PLO in understanding informal caregivers' mental health, informing the development of personalized interventions tailored to their unique needs.

Aging in Place

What Is the Issue? Canada is experiencing an important demographic transition toward an increasingly diverse aging population with an increased need for care and support during the later stages of life. Despite older adults’ strong preferences to live in their home or community for as long as possible, health systems are challenged to keep up with growing demands for home care, community care and support services to support conditions to age in place, when appropriate. What Did Canada’s Drug Agency Do? Canada’s Drug Agency prepared an Evidence Assessment report that identified and described the current context of aging and hinderances to aging in place in Canada, considerations relevant to aging in place for equity-deserving groups, strategies and initiatives intended to address unmet needs and improve outcomes, and systemic considerations related to implementing initiatives supporting aging in place. The Health Technology Expert Review Panel (HTERP) used the Canada’s Drug Agency Evidence Assessment report to inform deliberations and to develop objective, impartial, trusted pan-Canadian guidance for decision-makers when considering evidence-informed aging-in-place initiatives to support equitable aging in place in jurisdictions in Canada. What Is HTERP’s Position on Aging in Place? Everyone has the right to age with dignity. Aging is a normal part of life and may be accompanied by changes in health status and/or abilities to complete everyday self-care tasks. Older adults comprise a heterogenous population with a continuum of health care needs and risks, including people living with vitality, those with moderately complex care issues, and those with complex care issues. Health and social systems were originally designed to meet the less complex acute care needs of a younger population and operate largely in silos. They cannot adequately or proactively address the continuum of needs of many older adults and their caregivers. Aging in place is a dynamic and complex experience that occurs within a larger context that is not limited to health systems. Older adults’ autonomy and preferences for care are realized by the active role of informal unpaid caregivers. The population of older adults in Canada is diverse with varying needs, risks, and cultural norms and values related to aging in place. Barriers to aging in place may disproportionately affect members of equity-deserving groups that experience multiple and often intersecting historical, social, cultural, medical, structural, institutional, and environmental barriers to care and support. There must be equity in access to safe, appropriate, and ongoing care to support dignity in living in a place of one’s choosing for older adults as they age. What Is HTERP’s Guidance to Support Aging in Place? foster a system that prioritizes integrated models of care to address current and future unmet needs and bridge gaps in and between services identify interventions that are aligned within an integrated model of care and are responsive to the unique and complex needs of older adults and their unpaid caregivers ensure culturally appropriate and equitable opportunities for positive outcomes standardize core measures or indicators to guide data collection, analysis, use, and reporting that support robust evaluation and cross-jurisdictional comparisons of interventions.

Caregivers of Children with Autism Spectrum Disorders: The Role of Guilt Sensitivity and Support.

Background/Objectives: Burden Syndrome, also known as Caregiver Syndrome, particularly affects those who serve in the role of informal caregiver in the presence of family members with conditions. The ABCX dual model examines the impact on the caregiver of the diagnosis of autism spectrum disorder (ASD) on the family. This model considers the severity of the stressor (A), the additional demands of life stress (aA), the family's internal resources (B), the family's external resources (bB), the family's assessment of the situation (C), coping strategies (cC), and outcome (X). The purpose of the present study is to investigate the relationships between resilience, guilt, and burden of care in caregivers of children with ASD. Methods: Various assessment instruments were used, including the "Caregiver Burden Inventory" to measure burden, the "Brief Resilience Scale" to assess resilience, the "Guilt Sensitivity Questionnaire" to examine guilt sensitivity, and the "DA.L.I.A." to collect information on parent and child characteristics. A total of 80 parents/caregivers participated in the research, including 53 women (Age M = 41.72; SD = 7.8) and 27 men (Age M = 43.35; SD = 6.29). Results: The findings indicate that individuals' resilience to stressful events correlates negatively with burden, a developmental subtype. However, guilt seems not to play a significant role in the overall perception of burden. In contrast, it was found that the use of informal supports is associated with higher levels of guilt and emotional burden, whereas the use of formal supports is correlated with higher emotional burden, but not higher perceptions of guilt. Conclusions: This study provides important information about the support needed by caregivers and suggests how to address emotional burdens to prevent burnout and support families with children with ASD.

Providing and receiving support through a tailor-made mobile app: a qualitative study on experience of professionals and family caregivers to persons with dementia

BackgroundThe ageing population and the rise of persons with dementia (PWD) living at home have increased the need for support by family caregivers (FC). Research suggests that most FCs are unprepared for the complex role of informal caregiving. The use of mobile applications (apps) provide a cost-effective and efficient opportunity for community-based social care professionals to provide tailor-made support to FCs. The literature indicates that there are limited mobile apps available to meet the needs of the FCs to PWD living at home. The aim of this study was to explore how social care professionals and FCs to PWD living at home experience providing and receiving support through a tailor-made mobile app named STAV.MethodsA qualitative descriptive design was applied. Data were collected through semi-structured interviews with 11 community-based social care professionals and 19 FCs of PWD living at home. The data were analyzed inductively using thematic analysis.ResultsThe social care professionals and the FCs’ experience of providing and receiving support through a mobile app was represented by the following themes: Accessibility to support – Bridging the gap, Engaging from a distance, and Limitations of the support.ConclusionsThis study highlights the need for FCs to PWD to receive support that is tailor-made to their needs as caregivers. The findings from this study can help community-based social care providers plan and organize long-distance support for FCs to PWD living at home. The findings further support the use of a mobile app as a complement to traditional means of support for FCs to PWD which can facilitate their knowledge, awareness, and self-care management.

Impact of Residential Segregation on Healthcare Utilization and Perceived Quality of Care Among Informal Caregivers in the United States.

This study aimed to investigate the impact of racial residential segregation on healthcare utilization and perceived quality of care among informal caregivers in the US. It further assessed potential variations in the estimated impact across caregivers' race and socioeconomic status. We used data from the Health Information National Trends Survey Data Linkage Project (fielded in 2020) for a sample of 583 self-identified informal caregivers in the US. Fitting a series of regression models with the maximum likelihood estimation, we computed the beta coefficients (β) of interest and their associated Wald 95% confidence limits (CI). Caregivers who resided in areas with higher segregation, compared to those living in lower segregated areas, were less likely to visit a healthcare professional [β = - 2.08; Wald 95%CI - 2.093, - 2.067] (moderate); [β = - 2.53; Wald 95%CI - 2.549, - 2.523] (high)]. Further, caregivers residing in moderate [β = - 0.766; Wald 95%CI - 0.770, - 0.761] and high [β = - 0.936; Wald 95%CI - 0.941, - 0.932] segregation regions were less likely to perceive a better quality of care compared to those located in low segregation areas. Moreover, as segregation level increased, Black caregivers were less likely to see a health professional, less frequently used healthcare services, and had poorer perceived healthcare quality when compared to Whites. Our findings indicate that higher residential segregation is associated with lower healthcare utilization, such as visiting a healthcare professional, and poorer perceived healthcare quality among informal caregivers. Given the essential role of informal caregivers in the current healthcare system, it is vital to investigate and address challenges associated with access to and quality of essential healthcare services to improve caregivers' health and well-being, specifically for caregivers of minority backgrounds.

Electroconvulsive therapy: the perspective of the informal caregiver in the decision-making process

Introduction Despite the importance of electroconvulsive therapy (ECT) as treatment, it remains one of the most controversial and misunderstood treatments. Negative media representations, primitive practice in the past and fear for electricity results in fear that extends beyond other therapies. Research on the perspective and role of informal caregivers (IC) in the process of ECT is limited. Most research focuses on relatives’ attitude or knowledge of ECT measured with questionnaires. However, profound understanding of their perspective can facilitate the role of physicians (or psychiatrists) in guiding patients and their IC through the decision-making process of ECT.Objectives The aim of this study was to describe the perspective of informal caregivers in the decision-making process in ECT treatment.MethodsA qualitative phenomenological study was set up. Semi-structured interviews were held with IC of patients who are treated with ECT. Purposive sampling was based on maximum variation. All interviews were fully transcribed and thematic analyses took place. Trustworthiness was guaranteed by e.g. researcher triangulationResults In nine interviews were held with partners, children and parents of patients. The interviews had a mean duration of 102 minutes and interviewing proceeded until saturation of the most important themes was reached. During the interviews it became clear that the decision-making process of ECT is strongly influenced by the illness-trajectory and context of living with the mental health problems of the patient. IC describe their life and that of the patient as ‘trying to survive’. The proposal of ECT is seen as a way out of this unendurable situation. The perceived responsibility of the IC in the informed consent process to ECT adds to this burden. The IC worry, feel uncertain and fear to do wrong. Nonetheless ECT seems to be a beacon of hope. Trust in the psychiatrist as a competent professional who wants the best for the patient seems more important than having an answer to all of their questions. After the ECT has been started, IC establish a framework to evaluate the side-effects and effectiveness of ECT. This framework is based on how they experience the patient in daily life and on what they define as ‘the patient becoming a bit more himself again’. IC weigh the effects and side-effects to support the continuation of ECT. However, if patients clearly express that they experience side-effects that are too hindering, IC follow the patient if he or she wants to stop ECT.ConclusionsOur study gives an insight in the perspective of the IC of patients undergoing ECT. It could be helpful for IC if the psychiatric team repeats information stepwise and takes the burden of responsibility perceived by the IC into account. The framework used by IC to evaluate the effects of ECT could be a valuable addition to the clinical evaluation of the ECT treatment.Disclosure of InterestNone Declared

A qualitative exploration of the lived experience of informal caregivers of people with severe mental illness and co-existing long-term conditions

IntroductionPeople with severe mental illness (SMI), including schizophrenia and bipolar disorder, experience significant health inequalities and are more likely to develop long-term physical health conditions (LTCs), such as type 2 diabetes and cardiovascular disease. Many people with SMI rely on informal caregivers, typically friends and family, to support their health and enable them to live in the community. Informal caregivers of people with SMI experience high levels of caregiver burden, social isolation, and poor health outcomes. However, it is unclear how co-existing LTCs contribute to the caregiving experience.ObjectivesThe aim of this study was to explore the lived experience of informal caregivers of people with co-existing SMI and LTCs.MethodsWe conducted a qualitative study with informal caregivers of people with co-existing SMI and LTCs in England. We recruited 12 informal caregivers and conducted five semi-structured interviews and two focus groups between December 2018 and April 2019. The interviews and focus groups were audio recorded, transcribed verbatim and thematically analysed.ResultsSMI impacts profoundly on the health and well-being of both service users and their informal caregivers. Service users were described as too unwell with their SMI to engage in self-management of their mental and physical health, with the primary responsibility for these tasks falling to informal caregivers. There were significant barriers to adequate physical healthcare for service users, therefore informal caregivers needed to advocate extensively for their loved ones to ensure access to services. Informal caregivers felt significantly under-supported and struggled with the caregiver burden associated with SMI and LTCs. This burden included the constant monitoring of risk, anxiety around the vulnerability of their loved one, repeated hospitalisations, physical health concerns, lack of respite services, lack of recognition of their role, the guilt associated with paternalistic care, shame and stigma, and the difficulties managing the changeable nature of SMI.ConclusionsInformal caregivers of people with SMI face an additional caregiver burden resulting from co-existing LTCS. This adds substantially to their caring role, yet they do not receive the necessary support, and therefore their own health and wellbeing are negatively impacted. Improved recognition of the role of informal caregivers and additional support, including improved provision of respite services, are needed to improve the well-being of informal caregivers.Disclosure of InterestC. Carswell: None Declared, J. Brown: None Declared, D. Shiers Consultant of: DS is an expert adviser to the National Institute for Health and Care Excellence Centre for Guidelines; the views expressed are those of the authors and not those of National Institute for Health and Care Excellence., P. Coventry: None Declared, N. Siddiqi: None Declared

Enhancing Quality of Life for Caregivers of Adolescents with Emotional Disorders through Digital Skills

Enhancing Quality of Life for Caregivers of Adolescents with Emotional Disorders through Digital Skills

Informal Care Time and Costs of Dementia Care in Benin (West Africa)

Background: Dementia is a growing global health challenge, with significant socioeconomic implications. This study examined the informal care duration and related costs along with the total cost of care for older individuals with dementia in Benin, West Africa, providing insights into a region with limited dementia research. Methods: We conducted a cost-of-illness study in Benin. Both hospital and community recruitments were used to enroll adults aged ≥60 years and their primary caregivers. Structured questionnaire and validated tools were used to collect the demographic, clinical, healthcare resource utilization data as well as informal care duration. Replacement costs approach was performed to valuate informal care time. Official exchange rates from the World Bank were used to convert costs from local currency to purchasing power parities dollars (PPP$). Results: Data from 135 individuals with varying dementia stages revealed that dementia places substantial caregiving demands, predominantly on women who provide up to 8 h of daily care. In 2021, the mean annual cost of dementia care was estimated to be PPP$ 2,399.66 ± 2,057.07. Informal care represented a significant portion of dementia expenses, up to 92% of the total care costs in this study. Discussion: Policy interventions are urgently needed to address the dementia care challenges in Benin, especially because economic transitions and educational advancements may reduce the availability of informal caregivers. This emphasizes the vital role of informal caregivers and underscores the need of implementing dementia policies to support families facing the evolving challenges of dementia care.

Aging and Caring: Exploring Older Adults' Motivation for Informal Caregiving to Other Aging Individuals in Nigeria.

Because of the global population aging, more informal carers become older adults. In Nigeria, the African country with the largest population of adults aged 60 years and older, self-construal rooted in the African collectivist philosophy generally shapes informal caregiving for older adults. However, there is a general paucity of studies on older adults' informal caregiving roles, particularly about their motivations for caregiving. This study explored older adults' motives for informal caregiving to their care recipients in urban Southeast Nigeria. This study adopted a hermeneutic phenomenological research design. In-depth interviews were conducted with 30 purposively selected older adults aged 54-88 who were the primary carers of other older adults in the family and community. The collected data were analyzed using van Manen's thematic analysis method, using QSR NVivo 12 software. A total of 4 main themes emerged from the participants' responses: reciprocity of kindness, altruism, a sense of moral responsibility, and eagerness for peaceful longevity. The findings generally showed that religion and culture were the latent factors ingrained in these motivations for informal caregiving. Although the African philosophy emphasizes altruism, reciprocity seems more prominent in specific traditional African communities, as observed in Southeast Nigeria. It serves as a means to prioritize family members' needs. The findings indicate the need for the government to establish sustainable programs and policies that support older people in their caregiving role. Doing so will enable carers to derive psychosocial gains from informal caregiving and sustain the caregiving culture of Nigeria.

Support matters: How formal and informal institutions shape young Indians' work‐family preferences

AbstractObjectiveThis study examines the extent to which young people's future employment preferences in India are influenced concurrently by formal workplace policies and informal caregivers' support.BackgroundScholars have focused on how young individuals' work‐family ideals are shaped by workplace institutions to better understand the persistence of gender inequalities in the labor market. Yet the literature on work‐family policy examines primarily the effects of formal policies, overlooking the role of informal caregivers. Consequently, we know little about the relative influence of formal and informal support on young individuals' work‐family preferences and why one system may be preferred over another.MethodThe study used an original survey‐experimental data from an online sample of young, highly educated and unmarried respondents in India (N = 482) to assess their employment preferences when they have a family and a young child, while conditioning them to formal and informal work‐family support. Logistic regressions examined the relationship between different support types and respondents' employment preferences.ResultsWhen not conditioned to any support, most women preferred part‐time and most men preferred full‐time employment. Women were twice as likely to prefer full‐time employment with informal support compared to formal support, but men's preferences were not sensitive to either type of support.ConclusionThe effectiveness of work‐family policies in challenging gendered behaviors depends on the credibility of formal as opposed to informal institutions.

COMPARISON OF LONELINESS AND SOCIAL NETWORK BETWEEN OLDER ADULT CAREGIVERS AND NONCAREGIVERS

Abstract In ageing societies, more older adults are taking up informal caregiving roles. Caregivers, compared to non-caregivers, are found to have poorer psychosocial outcomes such as loneliness and social isolation in various studies. However, most of this research is not specific to older adult caregivers and does not account for selection bias into caregiving. We compare loneliness and social network between older adult caregivers and older adult non-caregivers in Singapore, applying inverse probability weighted regression adjustment (IPWRA), to address selection bias into caregiving, on data from a nationally representative longitudinal study of older adults. Those providing unpaid assistance to any person because of their health condition were considered as caregivers. Loneliness (score: 0-12; higher score=lonelier) and social network (0-60; higher score=greater network) were measured using validated scales. The relationship of caregiving status with loneliness and social network was estimated using IPWRA, controlling for multiple demographic and health characteristics. Of the 2639 respondents, 7.2% were caregivers. Older adult caregivers, versus non-caregivers, were more likely to experience loneliness (average treatment effect [ATE] β-coefficient for loneliness score: 0.328 (95% confidence interval: 0.011-0.645; p-value: 0.042); and odds ratio for being lonely: 1.080 (1.001-1.165); p-value: 0.047). However, they did not differ in terms of their social network (ATE β-coefficient for social network score: 1.456 (-0.405-3.316); p-value: 0.125). Our findings suggest that even with a similar extent of social network, older adult caregivers are at a higher risk of loneliness, i.e., perceived social isolation or relational deficits, compared to non-caregivers.

“I can’t imagine having to do it on your own”: a qualitative study on postoperative transitions in care from the perspectives of older adults with frailty

BackgroundAdults aged 65 and older have surgery more often than younger people and often live with frailty. The postoperative transition in care from hospital to home after surgey is a challenging time for older adults with frailty as they often experience negative outcomes. Improving postoperative transitions in care for older adults with frailty is a priority. However, little knowledge from the perspective of older adults with frailty is available to support meaningful improvements in postoperative transitions in care.ObjectiveTo explore what is important to older adults with frailty during a postoperative transition in care.MethodsThis qualitative study used an interpretive description methodology. Twelve adults aged ≥ 65 years with frailty (Clinical Frailty Scale score ≥ 4) who had an inpatient elective surgery and could speak in English participated in a telephone-based, semi-structured interview. Audio files were transcribed and analyzed using thematic analysis.ResultsFive themes were constructed: 1) valuing going home after surgery; 2) feeling empowered through knowledge and resources; 3) focusing on medical and functional recovery; 4) informal caregivers and family members play multiple integral roles; and 5) feeling supported by healthcare providers through continuity of care. Each theme had 3 sub-themes.ConclusionFuture programs should focus on supporting patients to return home by empowering patients with resources and clear communication, ensuring continuity of care, creating access to homecare and virtual support, focusing on functional and medical recovery, and recognizing the invaluable role of informal caregivers.

Experiences in coping with dementia and the role of support; a qualitative study of the COGNISANCE project

Objective:People with dementia and informal caregivers utilize a variety of coping strategies to deal with the consequences of a dementia diagnosis. In the beginning they often rely on informal support, but research shows that they could benefit from formal support. The societal and cultural context may also influence how people deal with dementia. Yet, most research that takes place across countries or cultures provides little detail about cross-country differences or similarities. The purpose of this qualitative study is firstly to describe experiences of receiving a diagnosis and experiences, barriers and facilitators towards post-diagnostic support and secondly, and to examine differences and similarities between countriesMethods:A cross-country qualitative study with people with dementia recently diagnosed and their informal caregivers was carried out in Australia, Canada, the Netherlands and Poland between March 2020 and September 2020. A wide range of recruitment strategies and methods was adopted to aid recruitment and participation during the covid pandemic. Participants could participate in (online) Individual and dyadic interviews as well as online focus groups. To examine experiences after diagnosis and support, methods utilized ‘projective techniques’ whereby participants could project their experiences onto two fictional characters (a person with dementia, and her informal caregiver). A multi-step iterative inductive qualitative content analysis was carried out.Results:23 people with dementia and 53 informal caregivers participated. The following themes were identified; ‘getting a diagnosis, ‘coming to terms with dementia’, ‘support from friends and family’, ‘formal support’, ‘adapting to the role of informal caregiver’ and ‘living well with dementia’. ‘Formal support’ and ‘support from friends and family’ could serve as a barrier, facilitator or both in relation to ‘coming to terms with dementia’ and ‘adapting to the role of informal caregiver’. Coming to terms was a necessity for living well with dementia. ‘Adapting to the role of informal caregiver’ was an ongoing adaption process that was part of ‘coming to terms with dementia’ and extended into ‘living well with dementia’. Similarities of the themes across countries were larger than the differences.Conclusion:Support should enable the process of coming to terms with dementia in a culturally appropriate manner.

Technology in the service of caregiver well‐being: an online psycho‐educational intervention combined with virtual reality

AbstractBackgroundCare for community‐dwelling people with dementia (PwD) is frequently delegated to relatives, who find themselves in the role of informal caregivers (iCGs) with no practical knowledge to manage their loved ones. This situation puts iCGs at high risk for emotional distress. We will assess the efficacy of an online psycho‐educational program combined with an immersive virtual reality (VR) experience to reduce iCGs perceived stress by acting on the cognitive and affective components of empathy.MethodUsing covariate‐adaptive (by sex and baseline level of perceived stress) randomization, 100 iCGs of mild‐to‐moderate Alzheimer’s disease patients will be assigned to i) an online 6‐week psycho‐educational program (control arm); or ii) the same psycho‐educational program integrated with VR (experimental arm). VR consists of 360‐degree videos and allows caregivers to experience dementia symptoms from the patient’s perspective. The primary outcome will be a change in emotional distress, assessed with the Zarit Burden Inventory and the State‐Trait Anxiety Inventory. In addition, changes in brain activity while reading emotional stories (protocol modified from Ashar, 2017) will be assessed as a secondary outcome in a subsample of 50 participants who will undergo magnetic resonance imaging. Primary and secondary outcomes will be measured before and after the intervention. A 2‐month clinical follow‐up is also scheduled.ResultTo date, 20 iCGs (mean age: 58; range 30‐79; female: 75%; children: 55%) have been randomized to the 2 arms. The psycho‐educational program provides support for the home management of PwD, by offering knowledge on symptom management and enhancing strategies based on the cognitive component of empathy. During each session, iCGs are exposed to 30 minutes of empathy training with i) imagery exercises or ii) VR. The experimental intervention is expected to result in deeper disease comprehension and strengthen empathy’s cognitive component. At the network level, we expect to observe a greater activation of cognitive empathy circuits and a lower activation of affective empathy circuits in the experimental group.ConclusionTo our knowledge, this will be the first randomized controlled trial assessing the synergistic effect of combining traditional psycho‐educational intervention with VR in iCGs and measuring both clinical and imaging markers.

Roles and experiences of informal caregivers of older adults in community and healthcare system navigation: a scoping review

ObjectiveInformal caregivers are playing a vital role in improving the degree to which older adults access community and healthcare systems in a more seamless and timely manner, thereby fulfilling their...