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In-depth understanding of dementia carer experience can assist clinicians by providing insight into dementia onset, symptoms and management, and help conceptualize and understand the pattern of dementia progress over time and what help is needed. We undertook a qualitative study to understand dementia carers experiences of providing care and reasons for admission to a residential aged care facility (RACF). Three themes were identified: (1) Challenges in the path to diagnosis and care, leading to delays accessing support; (2) Carer role impacted by living circumstances; and (3) Variation in decision support prior to admission to a RACF. Identifying dementia carer experiences, reinforces the need for more timely diagnosis, referral for support and interventions to promote better quality of life for a people living with dementia and their carer and to delay premature RACF placement. [ABSTRACT FROM AUTHOR]

Background: Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers. Method: We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews. Results: Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted. Conclusion: Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones. Plain language summary: Understanding how loved ones feel about someone close to them donating their brain to research after their death from brain cancer The act of donating brain tissue after death from brain cancer is a huge gift to medical research and may have an impact on the ability of the scientific community to improve outcomes for people diagnosed with brain cancers. While we understand how valuable these donations are for research, we need more work to understand how these donations impact the people who donate and those who love and support them. This paper explores the experiences of people who have lost someone to brain cancer who then went on to donate their brain tissue after their death. Through the use of interviews, it explores the impact that the donation has on a loved one or next of kin from providing a source of comfort, empowerment, pride or an alternative to 'senseless' suffering and tragedy. It also provides areas that should be considered by people who are facilitating brain donations to ensure that any potential, harm or upset can be minimized. [ABSTRACT FROM AUTHOR]

Aims: (a) To investigate support for caregivers of people diagnosed with stroke, cancer, chronic obstructive pulmonary disease (COPD), dementia, or heart disease provided across healthcare settings in Denmark; (b) to assess differences in caregiver support across diagnoses and settings. Methods: A cross-sectional nationwide survey among professionals representing healthcare settings at municipalities (n = 479) and hospital wards and outpatient clinics (n = 425). The survey assessed identification of caregivers and support initiatives. Results: The response rate was 81% for municipalities and 49% for hospitals. Identification of caregivers was frequent in dementia care (81% and 100%) and less frequent in COPD care (58% and 64%) in municipalities and hospitals, respectively. Caregiver support differed significantly across diagnoses within municipalities (p = 0.009) and hospitals (p < 0.001). Systematic identification of vulnerable caregivers was <25% for all diagnoses except dementia. The most common support initiatives involving caregivers were primarily aimed at the ill person and included guidance about the disease and consequences for everyday life and lifestyle changes. Caregivers were least involved in support initiatives addressing physical training, work retention, sexuality, or cohabitation. Conclusions: Disparities and significant differences across diagnoses exist in the identification of caregivers and the provision of support initiatives. Support initiatives involving caregivers primarily targeted patients. Future studies should investigate how caregivers' needs can be met across different diagnoses and healthcare settings and investigate potential changes in caregivers' needs during disease trajectories. In clinical practice, identification of vulnerable caregivers should be a major focus, and disease-specific clinical guidelines may be required to ensure sufficient support for caregivers. [ABSTRACT FROM AUTHOR]

Critical realism is a framework that explains causations of observable events. It is useful in exploring and explaining complex nursing phenomena. It is grounded in the stratification of reality and the understanding that the world is complex, open, and has interactions that support or cancel each other whether we observe it or not. It can be used as a theoretical foundation of case study approach, an in-depth inquiry that seeks to understand a particular phenomenon within specific settings. This paper introduces the basic concepts of critical realism and how it can inform a qualitative case study methodology. To support this approach, we present a study on caregiving experiences for older people with dementia from culturally and linguistically diverse backgrounds which we believe highlights the value of combining critical realism and case study to inform future nursing research. [ABSTRACT FROM AUTHOR]

Objective: Preliminary evidence indicates that interventions designed to support family and friends ('carers') of young people with early-stage borderline personality disorder effectively improve carer outcomes. None of these interventions have been tested in a randomised controlled trial. Method: This clustered, partially nested, randomised controlled trial was conducted at Orygen, Melbourne, Australia. Carers of young people (aged 15–25 years) with borderline personality disorder features were randomly assigned as a unit in a 1:1 ratio, balanced for young person's sex and age, to receive a 15-day intervention comprising: (1) the three-session, in-person, Making Sense of BPD (MS-BPD) multi-family group programme, plus two self-directed online psychoeducational modules (MS-BPD + Online, n = 38), or (2) the two self-directed online psychoeducational modules alone (Online, n = 41). The primary outcome was 'negative experiences of care', measured with the Experience of Caregiving Inventory, at the 7-week endpoint. Results: A total of 79 carers were randomised (pool of 281, 197 excluded, 94 declined) and 73 carers (51 females [69.9%], Mage = 43.8 years [standard deviation, SD = 12.9], MS-BPD + Online n = 35 [47.9%], Online n = 38 [52.1%]) provided follow-up data and were included in the intent-to-treat analysis. The intent-to-treat (and per protocol) analyses did not find any significant differences between the groups on the primary (d = −0.32; 95% confidence interval = [−17.05, 3.97]) or secondary outcomes. Regardless of treatment group, caregivers improved significantly in their personality disorder knowledge. Conclusion: Delivering MS-BPD in conjunction with an online psychoeducational intervention was not found to provide additional benefit over and above access to an online intervention alone. In accordance with national guidelines, carer interventions should be routinely offered by youth mental health services as part of early intervention programmes for borderline personality disorder. Further research is warranted into which interventions work for whom, carers' preferences for support and barriers to care. [ABSTRACT FROM AUTHOR]

Few studies have investigated the experience of male carers of people with dementia and fewer specifically examined whether male and female carers of people with dementia differ in their approach to the caring role. As such, this research set-out to investigate whether male carers of people with dementia approach the caring role differently to female carers. Data from 167 survey participants (24 males and 143 females) were analysed using a mixed research methodology. Participants' demographics and scores on standardised burden and coping scales were analysed using linear regression. Participants' written responses to open-ended questions were analysed using thematic analysis anchored in theories of hegemonic masculinity. No significant gender differences were identified in carers' coping strategies or self-reported carer burden. However, qualitative analysis revealed strong thematic gender differences like: gendered barriers to help-seeking; gendered service preference; gendered considerations about residential care; gendered expression of burden; and themes of the absent son and exhausted daughter. This research identified that male carers of people with dementia approach help-seeking differently to female carers, typically focusing on addressing functional tasks and refraining from showing emotions, this despite reporting similar carer burden. Rapport building with male carers should start with conversations around functional issues rather than assessing the emotional impact of the caring role. The findings reinforce the need for more qualitative research into the unmet needs of male carers of people with dementia, to inform the design of male-friendly interventions which could facilitate timely access to services by male carers. [ABSTRACT FROM AUTHOR]

Introduction: Receiving a diagnosis of young onset dementia is particularly distressing; the person under 65 years is often in employment, with financial commitments, young children, and an active social life. Some of the stress experienced by younger people experiencing cognitive changes can be reduced by an early and accurate diagnosis, but this is contingent on the timing of disclosure and a process which is sensitive and appropriate to the person. The study aim was to explore experiences of giving and receiving a diagnosis of young onset dementia, by triangulating the perspectives of the key parties involved. Methods: A qualitative design was employed, using semi-structured interviews. Participants (N = 47) included people with young onset dementia (n = 10), family members (n = 12), and health and social care professionals (n = 25). Thematic analysis and triangulation enabled identification of overall themes across different participant groups. Results: All participant groups agreed on key aspects of good disclosure practice, with two overarching themes: The optimal conditions for disclosure, and how best to disclose a diagnosis. Positive experiences of disclosure were prefaced on having the appropriate space and time; having a support person present; clearly labelling the diagnosis; providing appropriate information at the right pace. Other findings include recommendations for longer appointment times, offering additional support for young families, and for carers of people with atypical presentations (e.g. frontotemporal dementia). Conclusion: Many people with young onset dementia had unsatisfactory disclosure experiences. Health and social care professionals should provide a 'pre-disclosure' appointment, elicit the amount of information the person may want at the point of disclosure of the diagnosis, balance truth and hope, provide contact details for follow-up, and overall be mindful of the individual in front of them. While young onset dementia may be a life-altering diagnosis, a disclosure meeting which is sensitively undertaken can increase the person's agency, coping ability, and ultimately empower them to live well with their diagnosis. [ABSTRACT FROM AUTHOR]

Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using 'positive' styles and the protective use of 'negative' disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support. [ABSTRACT FROM AUTHOR]

Objectives: Positive psychology outcome measures aim to quantitatively document the character strengths that people use to maintain their wellbeing. Positive aspects of caregiving including the use of character strengths is gaining credence in dementia carer literature but there remain few psychometrically robust tools by which to capture this. The current study evaluated the psychometric properties of a newly developed measure of hope and resilience for family carers of people living with dementia. Methods: An online study where family carers (n = 267) completed the newly adapted Positive Psychology Outcome Measure – Carer version (PPOM-C), the Hospital Anxiety and Depression Scale – Depression subscale (HADS-D), The Short Form Health Survey (SF-12), and The Multidimensional Scale of Perceived Social Support (MSPSS). Results: Psychometric analysis indicated strong properties for the PPOM-C in family carers, with two items dropped to improve the internal consistency. Convergent validity was established, with strong correlations between the hope, resilience, depression symptomology, quality of life and social support. A Confirmatory Factor Analysis indicated acceptable model fit. Discussion: The PPOM-C is a psychometrically robust tool that can be recommended for use in large scale psychosocial research. The use of this measure in research and practice will provide a more nuanced understanding of the caregiving role and how to support wellbeing in this population. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to explore carers' experiences of supporting a family member or friend with dementia through COVID-19 and experiences of hope and resilience during this time. Methods: Qualitative longitudinal research was undertaken in the UK, with 13 unpaid carers of people living with dementia who took part in two semi-structured interviews 8 weeks apart between June and October 2020. All transcripts were analysed using reflexive thematic analysis. Findings: Four themes were developed and included: COVID-19 impacted negatively upon everyday living; carer resilience: adapting to COVID-19; analysis of risk: safeguarding the person living with dementia; and thinking about the future with COVID-19. Conclusions: The results illustrated how the sudden changes which occurred during the pandemic negatively impacted on carers and people living with dementia in several ways, including additional responsibilities and taking away hope. The importance of continued formal and informal support for carers and people living with dementia during COVID-19 were highlighted. Formal services, care homes, and organisations need to be supported to implement procedures to ensure a safe environment during future lockdowns or periods of social restrictions. This will enable carers to remain visiting their family members and increase their confidence in accessing services and allowing paid carers to support their family member with dementia. These results have also illustrated the resilience of carers, who adapted to sudden changes which impacted negatively on their wellbeing and the wellbeing of the person living with dementia. [ABSTRACT FROM AUTHOR]

Objective: Improving dementia diagnosis rates are a key feature of dementia strategy and policy worldwide. This study aimed to explore the experience of carers of people diagnosed with dementia during or following a hospital admission in order to identify factors that had prevented them from seeking help beforehand. Semi-structured interviews were conducted with 12 informal carers including adults caring for a parent, a friend or a spouse diagnosed with dementia between 2010–2019, following an acute hospital admission for a physical health problem, having not sought help previously. Main Findings: Carers created a 'bubble of normalisation' around themselves and the person living with dementia (PLWD) to reject the label of dementia and protect the PLWD from a loss of independence, discrimination and prejudice they felt would be the result of a diagnosis. Carers struggled to talk to the PLWD about dementia reinforcing denial and stigma. Post-diagnosis carers felt unsupported and questioned the value of diagnosis. Principal Conclusions: Stigma related to images of dementia as a disease that takes away independence and identity prevented discussion about dementia between carers and the PLWD. A lack of open discussion about memory concerns between health care professionals and carers also served to delay diagnosis. [ABSTRACT FROM AUTHOR]

Background: With increasing focus on living well with dementia, technology has been identified as having potential benefits for safety, independence and wellbeing. Despite a large growth in specialised technology development, there has been limited uptake. There is a need to understand the current use and needs related to technology for people living with dementia and their care partners (informal carers). Methods: As part of a participatory design study, a qualitative inquiry into technology experiences and needs was undertaken within an interpretive description approach. A cross-disciplinary team including living experience experts (people living with dementia, unpaid care partners) was involved. Semi-structured interviews, including sharing technology locations and supports, were conducted, audio-recorded and transcribed. Key aspects of the technology use experience were constructed. Findings: Thirteen people living with dementia and 21 care partners participated in the study. Two core aspects of technology use were identified: Lots of moving parts: the complex context, and A technology cycle: the use and non-use. The findings indicated that the context involved an individual configuration of multiple factors including the user, their technology identity, their supporters, the technology and the environment. The experience is underpinned by shifting foundations created by constantly changing technologies and user characteristics. The cycle of use and non-use identified the processes required to maintain technology engagement. Conclusion: The use of technology for people living with dementia is complex and personal. Future technology development, policies and practices need to consider this complexity and the effort required to keep using technology to realise the benefits. [ABSTRACT FROM AUTHOR]

This study explores communication and retelling skills that are revealed after Mexican-American preschoolers engaged in culturally sensitive read alouds. Participants, highlighted in this article, included two four-year-old preschool children in a Spanish/English dual language classroom. The children selected culturally relevant texts and engaged in story retellings with their respective parent. The findings indicate that children co-constructed Zones of Proximal Development (ZPDs) in response to their parents' caring moves. Participants responded as cared-fors and carers as evident in their use of memorization skills and attention to detail to appropriate vocabulary and effectively retell a story. Additionally, preschoolers extended their ZPDs through imagination and inferencing by inserting events into the narrative and reading between the lines to expand and enrich the original stories. These findings have implications for reframing the way in which educators capitalize on young children's communication skills. [ABSTRACT FROM AUTHOR]

In India, more than 90% of the patient with chronic mental illness stayed with their family members. Approximately 77.4% of caregivers experience moderate to severe levels of aggression. The purpose of this study was to evaluate the effectiveness of caregiver-training program on knowledge in managing aggressive behavior of mentally ill at home. Research design was pre-experimental. Seventy two caregivers were recruited using purposive sampling technique. The caregivers knowledge was assessed at 3 time points with regard to training program; before, immediately (post-test 1), and after 1 month (±1 week; post-test 2). The baseline knowledge was reflective of the deficiencies existing in the management of aggression of the mentally ill by caregivers. The knowledge of caregivers regarding the management of aggressive behavior of mentally ill, increased after caregiver training program, from the pre-test score of 17.63 ± 3.3 to post-test 1 score of 23.26 ± 2.9, and slightly decreased post-test 2 score of 21.01 ± 3.3 at p <.05. Repeated measure analysis of variance (ANOVA) was done to compare the differences in knowledge score over time with Bonferroni adjustment. This home based caregiver training program helped caregivers to identify etiological factors of aggression, warning signs of aggression and use of de-escalation strategies to manage aggressive behavior of mentally ill. Training caregivers regarding aggression management will make caregiver proficient in practicing safe approach during handling of aggressive patient which will ensure the physical safety of the caregiver as well as of the patient and let the patient stay at home. [ABSTRACT FROM AUTHOR]

Research exploring the benefits of humor for caregivers is limited and, to date, no qualitative studies have explored the role of humor in brain cancer caregiving. To address this gap, we analyzed transcripts from twenty-one in-depth telephone interviews conducted with brain cancer caregivers from a strengths perspective. Thematic analysis using Braun and Clarke's method revealed that humor functions as (1) an innate element of the self and relationship, (2) an expression of mutual connection and understanding, (3) a way of managing difficult or awkward moments, (4) a form of avoidance or a welcome distraction, and may be (5) helpful, or unhelpful, depending on where someone is in the brain cancer trajectory. Findings suggest that humor represents an important yet complex individual and family strength for health service providers to identify and build upon. [ABSTRACT FROM AUTHOR]

This paper explores contemporary approaches to balancing truth with the provision of hope during the disclosure of a dementia diagnosis. We discuss the ethical significance of these practices as they relate to each member of the triad – the person, the carer and the clinician – at the point of diagnosis and beyond. The process of disclosing a diagnosis of dementia is complex. It encompasses breaking bad news while balancing hope, with truth about a progressive life-limiting condition. The process of receiving the diagnosis likewise challenges the person who may be unprepared for the diagnosis, while carers seek information and supports. The impact of receiving a diagnosis of dementia can be life-changing and harmful at the personal level – for both the person and carer. This risk of harm becomes a critical consideration for clinicians when deciding on the level of truth: what information should be relayed and to whom? That risk is also balanced against the ethical issue of patient autonomy, which includes the right to know (or not) and make informed decisions about therapeutic interventions. While the consensus is that the autonomy of the person living with dementia must be upheld, controversy exists regarding the extent to which this should occur. For instance, at diagnosis, it is common for clinicians to use euphemisms rather than the word dementia to maintain hope, even though people and carers prefer to know the diagnosis. This practice of therapeutic lying is a pervasive ethical issue in dementia care, made more acceptable by its roots in diagnosis disclosure. [ABSTRACT FROM AUTHOR]

This study examined mothers' (n = 9) mealtime experiences when caring for their son or daughter with anorexia nervosa through semi-structured interviews. Interpretative Phenomenological Analysis identified three themes: (1) managing mealtime combat through accommodation and acceptance; (2) feeling isolated, inauthentic and ill-equipped and (3) a need for understanding and to be understood. The overarching concepts of 'combat' and 'distortion' also underpin the analysis, uniquely outlining how mothers come to understand this daily situation. Mealtime-related interventions need to be developed which prioritise promoting skills and confidence in managing mealtimes and helping carers to address the emotional challenges of these occasions. [ABSTRACT FROM AUTHOR]

Background: People with chronic pain frequently have difficulties in completing everyday tasks to maintain independence and quality of life. Informal caregivers may provide support to these individuals. However, the effectiveness of interventions to train and support these individuals in caregiving remains unclear. The purpose of this study was to systematically review the evidence to determine the effectiveness of caregiver interventions to support informal caregivers of people with chronic pain. Methods: A systematic review of published and unpublished literature databases was undertaken (9 April 2021). Trials reporting clinical outcomes of caregiver interventions to train informal caregivers to support community-dwelling people with chronic pain were included. Meta-analysis was undertaken and each outcome was assessed using Grading of Recommendations, Assessment, Development and Evaluation. Results: Twenty-seven studies were eligible (N = 3427 patients). Twenty-four studies assessed patients with cancer pain and three with musculoskeletal pain. No other patient groups were identified. There was very low-quality evidence that caregiver interventions were beneficial for caregiver health-related quality of life (standardised mean difference = 0.26, 95% confidence interval = 0.01 to 0.52; N = 231). There was moderate-quality evidence that caregiving interventions were effective in reducing pain in the short-term (standardised mean difference = 0.16, 95% confidence interval = −0.29 to −0.03). There was low-quality evidence that caregiving interventions had no beneficial effect over usual care for psychological outcomes, fatigue, coping or physical function in the long-term. Conclusion: Caregiving interventions may be effective for patients and caregivers but only in the shorter-term and for a limited number of outcomes. There is insufficient evidence examining the effectiveness of caregiver interventions for people with non-cancer-related pain. [ABSTRACT FROM AUTHOR]

This article reports on findings of a scoping review aimed to map the published literature concerning the impact of Covid-19 on the care and quality of life of people living with dementia and their carers. Twenty-nine articles were included in the review. Three overarching themes were identified: (1) Impact on people with dementia – unmet and increased care needs; (2) Impact on carers – increased stress and burden and (3) Impact according to demographics. Overall, findings show that Covid-19 has led to a reduction in support from health and social services and to a move towards technology-based support. Furthermore, Covid-19 has had a negative impact on the care and quality of life of people living with dementia and their carers, and that this impact was influenced by the severity of dementia. [ABSTRACT FROM AUTHOR]

Introduction: Frontotemporal dementia (FTD) is one of the most common types of dementia in persons younger than 65 years of age. Diagnosis is often delayed due to slow, gradual decline and misinterpretation of 'non-typical' dementia symptoms. Informal carers of people with FTD experience greater levels of overall burden than carers of people with other forms of dementia. The aim of this systematic review was to describe the subjective experience of being an informal carer of a person with FTD and to identify the specific needs, coping strategies and helpful support resources of this carer population. Methods: Four electronic databases were used to search for published literature presenting experiences of carers of people with FTD between January 2003 and July 2019. Search strategy followed PRISMA guidelines. Findings were analysed using framework analysis, employing five stages of analysis to develop a coding index and thematic framework that included key aspects of the carer experience, which were grouped into themes and presented in a narrative format. Results: 1213 articles were identified in total. Twelve studies were included in the final synthesis of the review. Six themes were identified: 'Challenging road to and receipt of diagnosis', 'relationship change and loss', 'challenging experiences in caring', 'positive experiences and resilience', 'coping' and 'support needs'. Discussion: Findings highlight an increased need for carers of people with FTD to receive support during the pre-diagnostic stage, including support to manage symptoms. Further research should explore relationship changes and loss amongst carers to inform approaches for carer support. In conclusion, the lack of knowledge and unique needs of carers highlight the importance of public awareness campaigns and healthcare professional education to support carers with FTD symptom impact. [ABSTRACT FROM AUTHOR]

Background: Governments are being challenged to integrate at least part of dementia care into primary care. However, little is known about the current role of general practitioners (GPs) regarding dementia care, especially in countries that do not have dementia strategies in place. The aim of this study was to explore the experiences of GPs, persons with dementia and their family carers in Portuguese primary care settings, to better understand GPs' contribution to dementia care. Methods: A qualitative interview study of participants recruited from six practices in different social contexts within the Lisbon metropolitan area was carried out. Purposive sampling was used to recruit GPs, persons with dementia and carers. Interviews with GPs explored dementia care comprehensiveness, including satisfactory and challenging aspects. Interviews with patients and carers explored the experience of talking to GPs about cognitive impairments and related difficulties and the type of help received. Thematic analysis of interview transcripts was carried out using the framework approach. Results: Five major themes were identified: GPs have a limited contribution to dementia care, the case of advanced dementia, doctor–patient relationships, doctor–carer relationships and management of chronic conditions other than dementia. Conclusion: General practitioners seemed to contribute little to dementia care overall, particularly regarding symptom management. The exception was patients with advanced stages of dementia, given that specialists no longer followed them up. Remarkably, GPs seemed to be alone within primary care teams in providing dementia care. These findings strongly suggest that Portuguese primary care is not yet prepared to comply with policy expectations regarding the management of dementia. [ABSTRACT FROM AUTHOR]

Background: There is little evidence that outlines how family carers understand the person with dementia's perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim: This research aimed to explore and describe family carers' experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia's expectations for the future and what they believed was important for the person to whom they provided care. Method: Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings: Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion: This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers' perspectives of the changing nature of decision making during the dementia trajectory. Conclusion: Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is 'person centred' now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation. [ABSTRACT FROM AUTHOR]

Little is known about the training and support people with dementia and their carers need to use digital solutions. This paper shares learning from a bespoke programme that successfully trained people with dementia or mild cognitive impairment and their informal carers to use a social networking website. This work was undertaken as part of the European Horizon 2020 Caregiverspro-mmd trial (ISRCTN15654731). The training methods described offer an improved understanding of how best to deliver digital skills training that meets the needs of a diverse client group. The effectiveness of the programme is evidenced with qualitative and quantitative data. [ABSTRACT FROM AUTHOR]

This study investigates the relationship between social participation and health outcomes between caregivers and noncaregivers in Great Britain. Previous studies indicate that the impact of informal caregiving on the carer's health is complex, and the intensity of care provision has an adverse impact on the caregivers' health, while social participation could have a protective role in this respect. Using qualitative and quantitative data from Wave 8 of the 1958 National Child Development Study, the analysis shows that social participation has a positive effect on the carers' mental health and subjective well-being. Individuals who did not engage in social participation reported lower levels of mental health and control, autonomy, self-realization and pleasure (CASP) scores than those engaged in social participation. The qualitative results showed the barriers to social participation of caregivers to be time, energy, and finance. We discuss ways in which the government could address such barriers to improve the level of social participation among caregivers. [ABSTRACT FROM AUTHOR]

Informal carers are increasingly involved in supporting people with severe and enduring mental health problems, and carers' perceptions impact the wellbeing of both parties. However, there is little research on how carers actually make sense of what their loved one is experiencing. Ten carers were interviewed about how they understood a loved one's psychosis. Data were analysed using a hermeneutic-phenomenological approach. Three themes described the carers' effortful quest to understand their loved one's experiences while maintaining their relational bonds. Carers described psychosis as incomprehensible, seeing their loved one as incompatible with the shared world. To overcome this, carers developed hermeneutic 'mooring points', making sense of their loved one's unusual experiences through novel accounts that drew on material or spiritual explanations. The findings suggest that informal carers resist biomedical narratives and develop idiosyncratic understandings of psychosis, in an attempt to maintain relational closeness. We suggest that this process is effortful – it is hermeneutic labour – done in the service of maintaining the caring relationship. Findings imply that services should better acknowledge the bond between carers and care-receivers, and that more relationally oriented approaches should be used to support carers of people experiencing severe mental health problems. [ABSTRACT FROM AUTHOR]

Objectives: To demonstrate the power of integrating three theoretical perspectives (Mentalization Theory, Perceptual Control Theory and the Communicative Impact model), which jointly illuminate the communication challenges and opportunities faced by family carers of people with dementia. To point the way to how this framework informs the design and delivery of carer communication and interaction training. Method: Conceptual synthesis based on a narrative review of relevant literature, supported by examples of family carers. Results: We use the conceptual models to show how the capacity to mentalize ("holding mind in mind") offers a greater sense of control over internal and external conflicts, with the result that they can be deescalated in pursuit of mutual goals. Conclusions: The integrative conceptual framework presented here highlights specific psychological and relational mechanisms that can be targeted through carer training to enhance communication with a person living with dementia. [ABSTRACT FROM AUTHOR]

Although one writer has called dementia 'the theological disease', there has been remarkably little research on how people with dementia and their carers find spiritual meaning and significance in their experience. While there is a significant body of literature examining the role of existing spiritual or religious beliefs and practices in supporting the carer of a person with dementia, there is very little research which offers an insight into the reverse process: how the experience of caring challenges a carer's sources of spiritual or religious meaning, and what strategies are adopted to resolve the experienced tension between belief and experience. The present study aimed to supplement this incomplete picture by examining the archive of an online forum responding to a request for 'thoughts which lend a spiritual perspective to going through dementia'. Interpretative Phenomenal Analysis (IPA) was undertaken on two levels. First, attention was focussed on the forum as an integrated discussion, identifying its recurrent and superordinate themes. The contributions of selected individual participants were then analysed to further examine the way in which their positions were developed. The analysis uncovered the importance which at least some carers of people with dementia attached to spiritual perspectives, as supplying strength for and meaning to the challenges they faced; but also how meaning was undermined by their experience. Few participants identified with traditional religious resources, but attempted to find meaning by reflection on their personal narrative. Six distinct types of response to the initial question were identified. These findings indicate that the wellbeing and resilience of at least some carers may benefit from validation of their spiritual concerns along with sensitive and attentive spiritual support. In this task, a key resource is their reflection on their personal narrative in relation to current challenges. [ABSTRACT FROM AUTHOR]

We tested the feasibility and preliminary effectiveness of an acceptance and commitment therapy self-help intervention for grief and psychological distress in carers of patients in palliative care. Carers were randomised to the control group, which received treatment as usual, or the intervention group, which received treatment as usual plus an acceptance and commitment therapy–based self-help booklet and telephone support call. Questionnaires were completed at baseline, 1-month post-allocation and 6 months post-loss. Results indicated that the intervention was generally feasible and viewed as acceptable to carers. Preliminary effectiveness analyses showed at least a small effect in acceptance, valued-living, grief and psychological distress. [ABSTRACT FROM AUTHOR]

Aim: Informal caregivers play a vital role in the care of people with Alzheimer's Disease (AD), yet caregiving is associated with caregivers' burden. The initial objective of the study was to develop a new outcome measure to assess quality of life (QoL) in AD caregivers. Methods: Informal (non-professional) caregivers providing 75% or more of the care activities for, and living in the same household as, a person with AD were invited to take part in the study. Qualitative interviews (N = 40) were conducted with AD caregivers in the UK and thematic analyses were applied to generate a pool of potential items. A draft questionnaire was produced and adapted for use in Italy, Spain, Germany and the US. In each of the 5 countries, cognitive debriefing interviews (N = 76) were conducted to determine the questionnaire's face and content validity, followed by a postal validation survey (N = 268). The data from these surveys were combined to reduce the number of items and assess the new questionnaire's psychometric properties. Results: Thematic analysis of the UK interview transcripts generated a draft questionnaire, which was successfully translated into each additional language. The items were well accepted and easy to complete. However, reanalysis of the qualitative interview data revealed that spousal and non-spousal caregivers identified different experiences of caregiving. A review of the item pool indicated that items were primarily targeted at spousal caregivers. Therefore, further analyses of the postal survey data included spousal caregivers only (n = 116). The results supported scaling assumptions (e.g., corrected item-total correlations ≥0.32), targeting (e.g., floor/ceiling effects <2.5%), internal consistency (α ≥0.93) and test-retest reliability (rs = 0.88) of the new questionnaire, according to classical test theory. Assessment of external construct validity yielded results in accordance with a priori expectations. QoL scores were most strongly related to scores on the emotional reactions sections of the Nottingham Health Profile and the General Well-Being Index. The new questionnaire was found to be capable of detecting meaningful differences between respondents; spousal caregivers had worse QoL when the person with AD was confused (p <.001), could not be left alone (p <.001), did not recognize the caregiver (p <.001), was incontinent (p <.05), and wandered around the house (p =.01). Conclusions: The Alzheimer's Disease Patient Partners Life Impact Questionnaire (APPLIQue) is a questionnaire specific to spousal caregivers of people with AD. Data support its scaling assumptions and it exhibits excellent psychometric properties according to classical test theory. The questionnaire is recommended for use in intervention studies where the QoL of spousal caregivers is of interest. [ABSTRACT FROM AUTHOR]

Family carers encounter several challenges related to caring for people with dementia, and they need support in managing care recipients' health needs. This study aims to identify, appraise and synthesise the existing evidence on the use of mHealth/smartphone applications as an educational and supportive resource for family carers of people with dementia. An integrative literature review approach was used. Seven databases were searched. The search generated 117 articles, with seven meeting the inclusion criteria. Three categories and their attendant sub-categories emerged from the literature. The categories are 'carer support', 'evaluation strategies' and 'barriers and challenges'. mHealth applications appear to be a feasible intervention for family carers of people with dementia despite the limited available research and barriers for their development and implementation. Further research on mHealth applications with strong methodological rigour and more research on mHealth applications as an educational and supportive resource for carers of people with dementia are needed. [ABSTRACT FROM AUTHOR]

Patient safety policies increasingly encourage carer (i.e., family or friends) involvement in reducing health care–associated harm in hospital. Despite this, carer involvement in patient safety in practice is not well understood—especially from the carers' perspective. The purpose of this article is to understand how carers of adult patients perceived and experienced their patient safety contributions in hospital. Constructivist grounded theory informed the data collection and analysis of in-depth interviews with 32 carers who had patient safety concerns in Australian hospitals. Results demonstrated carers engaged in the process of "patient-safety caring." Patient-safety caring included three levels of intensity: low ("contributing without concern"), moderate ("being proactive about safety"), and high ("wrestling for control"). Carers who engaged at high intensity provided the patient with greater protection, but typically experienced negative consequences for themselves. Carers' experiences of negative consequences from safety involvement need to be mitigated by practice approaches that value their contributions. [ABSTRACT FROM AUTHOR]

Background: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported. Aim: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature. Design: An integrative study design was undertaken using systematic methods. Data sources: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms. Results: Two quantitative, two qualitative and two mixed method studies were identified (n = 6). All community initiatives identified were professionally led, although three had consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial. Conclusions: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process. [ABSTRACT FROM AUTHOR]

This article describes the work of the ‘Action on Living Well: Asking You’ group – an involvement group of people with dementia and carers attached to the IDEAL research study. The article describes the work of the group, the methods that have helped them to stay involved and people’s perspectives on their experiences of being involved and the impact it has had, for themselves and others. The article has been written following a reflective piece of work with the ‘Action on Living Well: Asking You’ group to review and remember the work of the past four years. An accompanying film brings to life the work and activities of the group, available at www.idealproject.org.uk/mclass/ [ABSTRACT FROM AUTHOR]

This is a first mixed-methods study, which created, adapted and tested the feasibility of a training programme targeted at parents, community professionals, specialist teachers and volunteers to provide advice on developmental stimulation for children with visual impairment in their homes in rural and urban settings of Malawi. The study followed guidance from the Medical Research Council Framework for Developing and Evaluating Complex Interventions and drew on a bioecological model to help understand the feasibility of a new intervention in Malawi for 30 children with visual impairment and their carers in three districts of Southern Malawi. We trained 14 community workers and specialist teachers, then piloted the programme, which we linked to Care for Child Development (a World Health Organization/United Nations Children’s training package), over 6 months. In total, 10 observations were carried out to measure fidelity of the intervention at the child’s home. Acceptability was accessed through 20 post-intervention interviews and a focus group discussion with carers. Findings show that the new programme enabled workers and parents to be more positive towards their children with disabilities, improving relationships and responsiveness in their interactions. Drawing on the findings of the feasibility study, outcomes identified for a trial include measures of communication, child development, family care environment, participation and inclusion. This study has significance in providing a methodology that can be drawn upon to develop similar training programmes for use with children with a wider range of disabilities. The article has particular relevance to institutions and organisations working in early childhood development in that it provides a model to aid the development of tailored training programmes for children with visual impairment. It puts forward a table of 10 key messages on how best to prepare young children with visual impairment for life at school and for life after school. [ABSTRACT FROM AUTHOR]

Objective: Carers of people with psychosis may experience psychological distress and caregiving burden. However, few studies have examined both psychological and physical health of carers of young people with first episode psychosis (FEP).Method: A total of 32 young people with FEP and 42 of their carers were recruited from a mental health service. Standardised scales were administered to assess carers' psychological distress and risk for development of Type 2 diabetes. Their body mass index, waist circumference and blood pressure were measured.Results: A total of 24% ( n = 10) of carers experienced high/very high psychological distress and 39.0% ( n = 16) had high risk for Type 2 diabetes. It was common for carers to be overweight ( n = 33, 78.6%) and to have hypertension ( n = 14, 33.3%). Carers' higher levels of psychological distress were associated with shorter duration of illness in the young person.Conclusions: Caring for a young person with FEP is associated with poor physical and psychological health. Findings show the importance of supporting carers' physical and psychological health early in treatment of young people with FEP. [ABSTRACT FROM AUTHOR]

Burden is a negative psychological state induced in caregivers by the demands of providing care to a person with an illness or a disability. Managing caregiver burden in Parkinson disease (PD) is significant because informal caregivers make a substantial contribution to the well-being of persons with PD, incurring financial, social, and personal losses. Failure to recognize and manage caregiver burden may lead to burnout and premature institutionalization of the person with PD. We conducted a comprehensive literature review to identify and summarize factors that may amplify burden, including motor and nonmotor symptoms of PD, caregiver psychiatric symptoms, and caregiver coping style. We review instruments designed to sample the construct of burden among caregivers and evaluate interventions that may reduce burden, either by directly targeting caregivers or by treating PD symptoms associated with burden. We aim to provide a concise synopsis of these issues for the clinician or researcher working with this population in order to facilitate recognition of caregiver burden, provide accurate assessment, administer appropriate interventions, and stimulate further research in this area. [ABSTRACT FROM AUTHOR]

The number of people with intellectual disability living into old age and developing dementia continues to increase. Dementia presents a wide range of challenges for staff due to progressive deterioration. This article presents the findings from a narrative literature review of professional caregivers' experiences of caring for individuals with intellectual disability and dementia. Seven electronic databases were searched using Boolean operators and truncation to identify relevant literature. Search results were combined and narrowed to articles relevant to staff working with individuals with intellectual disability and dementia, and 14 articles met the criteria for review. Themes outlined in the review include staff knowledge of dementia, staff training in dementia, caregiving, challenging behaviour, pain management, mealtime support and coping strategies. Overall carers must review and adjust their care delivery and support to people with intellectual disability and dementia, not only in terms of identifying and responding to their health needs but also through collaborative team working within and across services. [ABSTRACT FROM AUTHOR]

Background: A UK charity, Macmillan Cancer Support has funded a local intervention, whereby carers of people affected by cancer and other long-term conditions at end of life are offered a bespoke package of support. Aim: This short report describes the qualitative experiences of carers in receipt of the intervention. Design: Qualitative research utilising in-depth interviews. Discussions were digitally recorded and transcribed verbatim. Data were analysed using thematic analysis. Setting/participants: Participants were carers (n = 10) in receipt of the intervention. Interviews were conducted between August and September 2014 in Lincolnshire (England). Results: Five themes from the interviews were identified: (1) Awareness and advertising, (2) focus of support on the carer, (3) modes of communication, (4) personal attributes and skills of the support worker (5) streamlining and signposting. Conclusion: The intervention was successful within a social care setting. The participants had no overtly negative opinions on the service in its current format and all held it in high regard. Carers felt a sense of reassurance from having background support and maintained that their situation would have been worse had this support not been there. [ABSTRACT FROM AUTHOR]

Whilst the needs of carers (family and friends) of those with mental disorders has received more formal recognition in society, there is a long way to go in terms of the provision of consistent support and consistent caring for carers. This article describes three examples of applied group analytic interventions for carers, in the fields of substance misuse and personality disorder respectively. With each group I concentrate on different aspects: (a) illustrations of group dynamics in the first group, including a discussion of the ‘co-dependency’ concept; (b) issues around setting up a new intervention in the second, and the overcoming of service resistances; and (c) the re-establishment of a group culture, and its formal evaluation, in the third. The aims of such groups are discussed, not only in terms of increased wellbeing and coping but less self-sacrifice and better self-protection in the presence of damaging behaviours by loved ones. [ABSTRACT FROM AUTHOR]

Hospital admission of a person with dementia can have a significant impact on the family carer, who temporarily relinquishes caring to health professionals. A descriptive qualitative design using in-depth interviews with a conversational approach was used to elicit data. Adjusting to the change in the carer’s role can be challenging and result in feelings of helplessness, loneliness, loss of control and being undervalued. Family support can assist with the transition but family conflict increases anxiety. Good communication between clinicians and the carer is vital. The carer should be included in decision-making as the ‘expert' in the care of the person with dementia. This article discusses findings of a larger study specifically related to the emotional support required for the carers of people with dementia, who are admitted to hospital. The carer and the patient must be considered as a dyad in relation to discharge planning. [ABSTRACT FROM AUTHOR]

Background Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital. Methods This study used a qualitative descriptive design, employing in-depth interviews with 30 carers recruited through networks known to one state branch of Alzheimer’s Australia. Emerging themes were validated in one focus group. Results During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need. Conclusion The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries. Recommendations This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences. [ABSTRACT FROM AUTHOR]

Background This research investigated narrative production and use with families living with dementia. We hypothesised that the process of narrative production would be beneficial to people with dementia and carers, and would elicit important learning for health and social care professionals. Method Through third sector partners, we recruited community-dwelling people with dementia and carers who consented to develop written, audiotaped or videotaped narratives. Audio-taped narratives were transcribed verbatim and handwritten narratives word-processed. After checking by participants, completed narratives were analysed thematically using qualitative data analysis computer software. A summary of the analysis was circulated to participants, inviting feedback: the analysis was then reviewed. A feedback questionnaire was subsequently circulated to participants, and responses were analysed thematically. Results Twenty-one carers and 20 people with dementia participated in the project. Four themes of support were identified: ‘relationships’, ‘services’, ‘prior experience of coping’ and having an ‘explanation for the dementia’. Three themes were identified as possible additional stresses: ‘emotions’, ‘physical health’ and ‘identity’. We suggest a model incorporating all these themes, which appeared to contribute to three further themes; ‘experience of dementia’, ‘approaches to coping’ and ‘looking to the future’. In participant feedback, the main themes identified were ‘emotions’, ‘putting things in perspective’, ‘sharing or not sharing the narrative’ and ‘actions resulting’. Conclusions Producing a narrative is a valuable and engaging experience for people with dementia and carers, and is likely to contribute to the quality of dementia care. Further research is needed to establish how narrative production could be incorporated into routine practice. [ABSTRACT FROM AUTHOR]

Informal caregivers are crucial members of the teams that care for palliative patients with cancer, including those with oncohematological malignancies. Publications concerning specific aspects of this latter group of carers are limited. This literature review indicates that palliative oncohematologic patients’ caregivers do not differ from those of patients with solid tumors in ethical and related problems. However, there are specific problems for the former group with regard to negotiating the curative system, which are experienced as distressing, often without support from the health system and without offers of the possibility of being referred to palliative teams that they would have valued as very positive. Although this tendency seems to be changing, there is still considerable work to be done to improve the role of these carers. [ABSTRACT FROM AUTHOR]

This paper reviews recent literature on the experiences, attitudes and needs of caring for someone with dementia in Black and minority ethnic communities in the United Kingdom. Eight articles, which investigated carer experiences from Black and minority ethnic communities when caring for someone with dementia, were critically appraised. All eight studies used a qualitative methodology. The review identified several themes and issues across the qualitative studies. These included memory loss being viewed as a normal process of ageing, care being perceived as an extension of an existing responsibility, a poor understanding of what support services provide, the influence of migration, the impact of stigma and increased female responsibility. Methodological limitations of the research literature studies are also highlighted and clinically relevant implications are discussed, alongside recommendations for future research in this area. [ABSTRACT FROM AUTHOR]

Objectives: To examine the economic evidence for interventions aimed at family carers of stroke patients. Data sources: Searches (limited to those published in English since 1990) were performed in key databases along with hand searches of relevant papers. Review methods: Papers were restricted to studies including any economic data (broadly defined) for any intervention targeting carers explicitly or explicitly referring to a carer element, beyond involving carers in the care or intervention for patients (i.e. more than just carers being invited to observe an intervention targeted at the patient). Two reviewers independently screened full papers and extracted data using guidance from the National Institute for Health and Care Excellence, and quality assessment using the Newcastle-Ottawa Quality Assessment Scale (cohort studies), the Delphi list (randomised controlled trials) and guidelines on economic quality from the British Medical Journal. Data were reviewed descriptively as meta analyses were inappropriate due to non-comparability of studies. Results: Ten papers were included in the review. These were heterogeneous in their design, intervention and economic analyses making comparison difficult. Only three of the ten papers included economic evaluations. All three reported that the intervention was less costly and had better or equivalent outcomes than the control comparator although two of these were based on the same intervention using the same dataset. Conclusion: There is some limited evidence that interventions for family carers of stroke patients are effective and cost effective. However, due to variation in the types of interventions examined, little can be concluded regarding implications for clinical practice. [ABSTRACT FROM AUTHOR]

Background: Nurturing environment contributes to the personality development of young people, but how inappropriate parental bonding from biological parents influences the personality disorder functioning styles of their offspring in divorced families remains unclear. Objective: We aimed to find out the relationship between parenting styles and students’ disordered personality in divorced families. Methods: The Parental Bonding Instrument (PBI) and the Parker Personality Measure (PERM) were administered to 60 Chinese students from divorced family (Divorced group) and 120 controls (matched in age and gender) from intact family (Intact group). The depressive tendency of the participants was measured with the Plutchik–van Praag Depression Inventory (PVP). Results: PERM borderline style was more prominent when father was perceived as secondary carer than primary carer in Divorced group. When father was perceived as secondary carer, PERM borderline style was more obvious in Divorced group than in Intact group. Maternal autonomy denial and care predicted PERM narcissistic and dependent styles in Divorced group, when mother was perceived as primary carer. In the Intact group, when mother was perceived as secondary carer, maternal care was lower than when mother was perceived as primary carer. Some parental PBI scales predicted certain PERM scales regardless of the carer order. Conclusions: The results imply that in divorced family, biological father should be more involved in young people’s daily life, and biological mother should show more care and less autonomy denial. In intact family, more care, less freedom control, and less autonomy denial from both parents are important in the personality development of their offspring. [ABSTRACT FROM AUTHOR]

Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked ‘Duties to Care’ and ‘Dementia Talking’ projects, in this article we focus on British carers’ talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a ‘maze’; (2) services as overly limited – ‘beyond our remit’; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake. [ABSTRACT FROM PUBLISHER]

Objective: To describe the lived experiences of people subject to community treatment orders (CTOs) and their carers.Method: We recruited 11 participants (five mental health consumers and six carers) through consumer and carer networks in NSW, Australia, to take part in interviews about their experiences. We analysed the interview data set using established qualitative methodologies.Results: The lived experiences were characterised by 'access' concerns, 'isolation', 'loss and trauma', 'resistance and resignation' and 'vulnerability and distress'. The extent and impact of these experiences related to the severity of mental illness, the support available for people with mental illnesses and their carers, the social compromises associated with living with mental illness, and the challenges of managing the relationships necessitated by these processes.Conclusions: The lived experience of CTOs is complex: it is one of distress and profound ambivalence. The distress is an intrinsic aspect of the experience of severe mental illness, but it also emerges from communication gaps, difficulty obtaining optimal care and accessing mental health services. The ambivalence arises from an acknowledgement that while CTOs are coercive and constrain autonomy, they may also be beneficial. These findings can inform improvements to the implementation of CTOs and the consequent experiences. [ABSTRACT FROM AUTHOR]

The article presents a study which focused on the changes in the experiences of carers of older people of looking after a relative with dementia and the effects of caring on the carers' autonomy and health. The researchers found that carers learned by experience to manage their situations. The autonomy and health of carers was found to be challenged in their experience.

Objective: The notion of caregiver ‘burden’ has been used as a term that refers to the financial, physical and emotional effects of caring. This Australian 2002 research investigated the caregiver burden of HIV/AIDS on the gay male carers of gay men with the disease. Methods: This study was a phenomenological inquiry and employed van Manen’s approach to content analysis. Data saturation occurred at twelve participants. Results: The findings produced carer themes relating to coping with the burden of care of a person living with HIV/AIDS (PLWHA) in the context of living day-to-day with HIV/AIDS, coping with the last phase of AIDS toward death, saying goodbye and remembrance. Conclusion: Allocating resources to gay male carers such as; education, respite care, family therapy and cognitive-behavioral therapy (CBT) to address grief and stigma issues, has implications for how health services might reduce the burden of care for these carers. [ABSTRACT FROM PUBLISHER]