Protective Role of Caregiver Preparedness on the Relationship Between Depression and Quality of Life in Stroke Dyads.

BACKGROUND AND PURPOSE: Depression and quality of life (QOL) have an interdependent and transactional nature in stroke survivor-caregiver dyads. While the strong relationship between depression and physical and emotional QOL in stroke survivor-caregiver dyads is well known, it is less clear if this relationship is moderated by caregiver preparedness, which could easily be targeted with interventions. In this study, we examined the moderating role of caregiver preparedness on the association between depression and QOL in stroke survivor-caregiver dyads. METHODS: We used a longitudinal design with follow-ups every 3 months over a 1-year period. Considering the nonindependent nature of the data (survivors and their caregivers), we used multilevel modeling to analyze data at the dyad level. We implemented 4 longitudinal dyadic moderation models (one for each QOL domain: physical, psychological, social, and environmental) using hierarchical linear modeling. RESULTS: A sample of 222 stroke survivor-caregiver dyads was analyzed. Stroke survivors were older (M=70.8, SD=11.9) than their caregivers (M=52.4, SD=13.1). Stroke survivors predominantly had an ischemic stroke, equally distributed by site. Caregivers were primarily female (66%), with a medium to high educational level (57%). Caregiver preparedness significantly moderated the association between survivor depression and survivor psychological (B=0.56, P<0.01) and environmental (B=0.58, P<0.01) QOL at baseline and social QOL over time (B=0.24, P<0.05). Similarly, caregiver preparedness significantly moderated the association between caregiver depression and caregiver physical (B=0.25, P<0.01) and environmental (B=0.18, P<0.05) QOL over time. CONCLUSIONS: Caregiver preparedness has a positive influence on both members of the dyad. Assessment of stroke-caregiver preparedness could be helpful to motivate clinicians to develop and implement interventions for stroke survivor-caregiver dyads.

Qualitative Study of Chinese Stroke Caregivers' Caregiving Experience During the COVID-19 Pandemic.

BACKGROUND AND PURPOSE: The coronavirus disease 2019 (COVID-19) outbreak has led to disruptions in health care service delivery worldwide, inevitably affecting stroke survivors requiring ongoing rehabilitation and chronic illness management. To date, no published research has been found on stroke caregiving during the COVID-19 pandemic. This study aimed to explore Hong Kong stroke caregivers' caregiving experiences in the midst of this difficult time. METHODS: Individual semistructured interviews were conducted with 25 Chinese adult primary stroke caregivers from May to June 2020 via telephone. Interviews were transcribed verbatim and analyzed using an interpretive description approach and constant comparison strategy. RESULTS: Five themes of the stroke caregiving experience during the COVID-19 pandemic emerged: care service adversities, additional caregiving workload and strain, threatened relationship between caregiver and stroke survivors, threats to caregivers' physical and psychological well-being, and needs for continuing caregiving roles. Our findings suggested that caregivers have worsened physical and psychological well-being because of increases in care burden with simultaneously reduced formal and informal support. The relationship between caregiver and stroke survivor was subsequently affected, placing some survivors at heightened risk of abuse. CONCLUSIONS: Our study provides valuable findings about stroke caregiving experiences and needs during the pandemic. Delivery of psychological support, telemedicine, and household hygiene resources would be useful to mitigate caregivers' psychological distress during the COVID-19 pandemic.

The Dual Epidemics of 2020: Nursing Leaders' Reflections in the Context of Whole Person/Whole Systems.

The Greater Boston Nursing Collective, a consortium composed of university nursing deans and chief nursing officers within academic medical centers and specialty hospitals in Boston, Massachusetts, was formed in 2014. Since the group's inception, our mission has been to create and reinforce whole-person/whole-system healing environments to improve the health of all communities. Through our collaboration in navigating the dual epidemics of COVID-19 and structural racism within our respective organizations, and across the United States and the world, we share experiences and lessons learned. Our common mission is clearer than ever: to create safe and joyful work environments, to protect the dignity of those we are privileged to serve, and to generate policies to advance health equity to rectify societal forces that have shaped this dual epidemic. We are humbled by the many who persist despite limited rest and respite, and whose stories, innovations, and leadership we are honored to witness and share. They have defined our generation, just as nurses in earlier crises have done: leading through service to others as our purpose and privilege.

Associations of Advance Directive Knowledge, Attitudes, and Barriers/Benefits With Preferences for Advance Treatment Directives Among Patients With Heart Failure and Their Caregivers.

BACKGROUND: Patients with heart failure (HF) have not been considered as major beneficiaries of advance directives (ADs). We analyzed factors affecting the preferences for the adoption of ADs by patients with HF and their caregivers. METHODS AND RESULTS: Seventy-one patient (mean age: 68 years)-caregiver (mean age: 55 years) dyads were enrolled during clinic visits for routine care at a single institution and completed questionnaires during in-person visits. Cohen's kappa coefficients and generalized estimating equation models were used to analyze the data. The agreement on dyadic perspectives for aggressive treatments was poor or fair, whereas agreement relative to hospice care was moderate (k = 0.42, 95% confidence interval = 0.087-0.754). Both patients and caregivers demonstrated poor knowledge of ADs and similar levels of perceived benefits and barriers to advance care planning. However, the caregivers had more positive attitudes toward ADs than patients. Patients and caregivers who were older and/or males had greater odds of preferring aggressive treatments and/or hospice care. Further, those with depressive symptoms had lower odds of preferring hospice care. CONCLUSION: The dyadic agreement was moderately high only for hospice care preferences. Both patients and caregivers demonstrated knowledge of shortfalls regarding ADs. Timely AD discussions could increase dyadic agreement and enhance informed and shared decision-making regarding medical care.

Changes in caregiver depression, anxiety, and satisfaction with family relationships in families of children who did and did not undergo resective epilepsy surgery.

OBJECTIVE: To evaluate longitudinal changes in caregiver depression, anxiety, and family relationships following resective surgery for pediatric drug-resistant epilepsy (DRE). METHODS: This multicenter cohort study involved 177 caregivers of children with DRE aged 4-18 years (63 surgical and 114 nonsurgical). Caregivers completed measures of depression (Quick Inventory of Depressive Symptomatology), anxiety (Generalized Anxiety Disorder 7-item scale), and satisfaction with family relationships (Family Adaptability, Partnership, Growth, Affective, and Resolve scale) at baseline, 6 months, and 1 year. Additional data collected at baseline included child, caregiver, and family sociodemographic and clinical factors as well as family environment (demands and resources). RESULTS: At 1 year, 64% and 27% of surgical and nonsurgical patients were seizure-free, respectively. Linear mixed-effects models found a reduction in caregiver depression (b = -0.85, P = .004) and anxiety (b = -1.09, P = .003), but not family satisfaction (b = 0.18, P = .31) over time. There was no effect of treatment. When seizure outcome was added to the model, seizure freedom was associated with fewer depressive symptoms (b = -1.15, P = .005) and greater family satisfaction (b = 0.65, P = .006), but not anxiety (b = -0.41, P = .42). A greater proportion of caregivers of patients who achieved seizure freedom (32%) versus continued seizures (18%) reported clinically meaningful improvement in depression at 1 year (P = .03). Lower baseline depression (ß = 0.42, P < .001), greater family resources (ß = -0.18, P = .04), and male caregiver (ß = 0.15, P = .02) predicted lower caregiver depression, and lower baseline anxiety (ß = 0.47, P < .001), greater family resources (ß = -0.24, P = .01), and higher education (ß = -0.13, P = .04) predicted lower caregiver anxiety at 1 year. Baseline functioning was the only predictor of family relationships at 1 year (ß = 0.49, P < .001). SIGNIFICANCE: Caregivers of children who achieved seizure freedom, irrespective of surgical treatment, report fewer depressive symptoms and greater satisfaction with family relationships. Baseline functioning is the strongest predictor of outcome; however, caregivers of families with fewer resources and supports are also at risk of poor psychosocial outcomes.

Needs for aids and equipment for the management of epilepsy in an Australian cohort.

AIM: This paper investigated the bases of needs for a range of epilepsy aids and equipment and expressed concerns about the use of such devices. METHOD: There was a 29.6% response rate (n = 393 of 1328) to Wave 4 of the Australian Epilepsy Longitudinal Study (AELS). The focus of Wave 4 was on the expressed needs and affordability of aids and equipment for people with epilepsy (PWE) and quality of life (QoL). Quantitative analysis was used to examine the association between self-reported need for aids and equipment, sociodemographic information, and QoL. Open-ended responses were subject to qualitative analysis. RESULTS: Approximately one-fifth of the sample felt that they needed specific aids, including emergency ID bracelets, seizure alarms, and seizure monitors. Those respondents who felt that they needed aids had more frequent seizures, had been recently injured by a seizure, and were less prosperous. The QoL of those in need of equipment was lower than that of those who felt that they did not need it. Qualitative analysis revealed a need for more information about the aids available, issues associated with affordability, and some concern about the utility of these aids for those who lived alone. DISCUSSION: Much research to date has focussed on the development and validation of devices for PWE and standards for testing. Fewer studies deal with the needs and experiences of PWE with regard to the use of such equipment. The development of these devices needs to ensure patient comfort and acceptability. In addition, there is a need to canvas the views of family, caregivers, and primary care providers on the usability of epilepsy aids and equipment. CONCLUSION: Further person-centered research is needed in assessing the need for and usability of aids and equipment for the management of epilepsy.

Telemedicine in epilepsy: How can we improve care, teaching, and awareness?

Telemedicine (TM) is the use of telecommunications' technologies to provide medical information and services. Telehealth (TH) permits broader and psychosocial support for patients and their families. We aimed to highlight the importance of the use of TH for all aspects of epilepsy, either for the scientific aspects (e.g., research, education, care, management, etc.) or for the social matters (e.g., education, sensitization, association support, etc.). There is a deep gap in knowledge and use of TH in the developing and developed countries. Epilepsy is a condition responsible for 1% of the global burden of disease. More than 50 million people have epilepsy, and barriers to care include shortage of human resources, medical facilities, and resources. Eighty (80) percent of people with epilepsy (PWE) live in low- and middle-income countries. Telehealth has the potential of addressing limited resources and improving access to PWE across the globe.

Impact of COVID-19 pandemic on pediatric patients with epilepsy - The caregiver perspective.

The recent COVID-19 pandemic has disrupted care systems around the world. We assessed how the COVID-19 pandemic affected children with epilepsy in Italy, where lockdown measures were applied from March 8 to May 4, 2020. We compiled an Italian-language online survey on changes to healthcare and views on telehealth. Invitations were sent to 6631 contacts of all patients diagnosed with epilepsy within the last 5 years at the BambinoGesù Children's Hospital in Rome. Of the 3321 responses received, 55.6% of patients were seizure-free for at least 1 year before the COVID-19-related lockdown, 74.4% used anti-seizure medications (ASMs), and 59.7% had intellectual disability. Only 10 patients (0.4%) became infected with Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2). Seizure frequency remained stable for most patients during the lockdown period (increased in 13.2%; decreased in 20.3%), and seizure duration, use of rescue medications, and adherence to treatment were unchanged. Comorbidities were more affected (behavioral problems worsened in 35.8%; sleep disorder worsened in 17.0%). Visits were canceled/postponed for 41.0%, but 25.1% had remote consultation during the lockdown period (93.9% were satisfied). Most responders (67.2%) considered continued remote consultations advantageous. Our responses support that patients/caregivers are willing to embrace telemedicine for some scenarios.

Unmet needs of patients with cancer in their last year of life as described by caregivers in a developing world setting: a qualitative study.

BACKGROUND: Palliative care is in its infancy in most of the developing world. We set out to explore the lived experiences of families and caregivers of recently deceased cancer patients in Trinidad and Tobago and to determine the unmet needs of the patients and what recommendations could be derived to improve the current services. METHODS: A phenomenological approach with purposeful sampling was used. Participants were referred by key health professionals. Face-to-face interviews were conducted. Interviews were transcribed verbatim, with analysis and data collection occurring concurrently. Thematic content analysis was used to determine common domains, themes and sub-themes. RESULTS: Interviews were completed with 15 caregivers. All were spouses or children of the deceased. Ages of the deceased ranged from 43 to 93, the average being 65.5 years. The deceased experienced a variety of cancers including lung, colorectal and oesophageal. Unmet needs were identified under 4 domains of institutions, community, the family unit and the wider society. Institutional unmet needs were delayed diagnosis and treatment and poor inter-institution coordination. Medical and nursing care failed in the areas of health care providers' attitudes, pain management and communication. The family unit lacked physical and psychosocial support for the caregiver and financial aid for the family unit. Societal needs were for public education to address myths and cultural beliefs around cancer. CONCLUSION: There is need for systemic interventions to improve the care of those dying from cancer in Trinidad and Tobago. Stakeholders need to commit to palliative care as a public health priority, implementing education, planning services and mobilizing community resources.

Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015 to 2035: A Policy Statement From the American Heart Association.

INTRODUCTION: In a recent report, the American Heart Association estimated that medical costs and productivity losses of cardiovascular disease (CVD) are expected to grow from $555 billion in 2015 to $1.1 trillion in 2035. Although the burden is significant, the estimate does not include the costs of family, informal, or unpaid caregiving provided to patients with CVD. In this analysis, we estimated projections of costs of informal caregiving attributable to CVD for 2015 to 2035. METHODS: We used data from the 2014 Health and Retirement Survey to estimate hours of informal caregiving for individuals with CVD by age/sex/race using a zero-inflated binomial model and controlling for sociodemographic factors and health conditions. Costs of informal caregiving were estimated separately for hypertension, coronary heart disease, heart failure, stroke, and other heart disease. We analyzed data from a nationally representative sample of 16 731 noninstitutionalized adults ≥54 years of age. The value of caregiving hours was monetized by the use of home health aide workers' wages. The per-person costs were multiplied by census population counts to estimate nation-level costs and to be consistent with other American Heart Association analyses of burden of CVD, and the costs were projected from 2015 through 2035, assuming that within each age/sex/racial group, CVD prevalence and caregiving hours remain constant. RESULTS: The costs of informal caregiving for patients with CVD were estimated to be $61 billion in 2015 and are projected to increase to $128 billion in 2035. Costs of informal caregiving of patients with stroke constitute more than half of the total costs of CVD informal caregiving ($31 billion in 2015 and $66 billion in 2035). By age, costs are the highest among those 65 to 79 years of age in 2015 but are expected to be surpassed by costs among those ≥80 years of age by 2035. Costs of informal caregiving for patients with CVD represent an additional 11% of medical and productivity costs attributable to CVD. CONCLUSIONS: The burden of informal caregiving for patients with CVD is significant; accounting for these costs increases total CVD costs to $616 billion in 2015 and $1.2 trillion in 2035. These estimates have important research and policy implications, and they may be used to guide policy development to reduce the burden of CVD on patients and their caregivers.

Development and Feasibility of SymTrak, aMulti-domain Tool for Monitoring Symptoms of Older Adults in Primary Care.

BACKGROUND: A clinically practical, brief, user-friendly, multi-domain self-report and caregiver-report tool is needed for tracking actionable symptoms in primary care for elderly patients with multiple chronic conditions (MCCs). OBJECTIVE: Develop and assess usability, administration time, and internal reliability of SymTrak. DESIGN AND PARTICIPANTS: Phase I: legacy instruments, content validity, analyses of existing data, focus groups (physicians, nurses, patients, informal caregivers), and Think Aloud interviews (patients, caregivers) were used to develop SymTrak. Phase II (pilot feasibility study): 81 (27 patient-caregiver dyads, 27 patients without an identified caregiver) participants were self-administered SymTrak in clinic. MAIN MEASURES: SymTrak and demographic questions. KEY RESULTS: Consistent themes emerged from phase I focus groups. Ambiguous wording was corrected with Think Aloud feedback. In phase II, patients and caregivers preferred circling words instead of numbers for item response options. SymTrak self-administration completion time in clinic was brief; mean was 2.4, 3.0, and 3.3 min for the finalized circlingwords version, respectively, for caregivers, dyadic patients, and patients without a caregiver; and the maximum was 6.2 min for any participant. Usability questionnaire ratings were high. Cronbach's alpha for the SymTrak 23-item total score was 0.86, 0.79, and 0.81 for caregivers, dyadic patients, and patients without a caregiver, respectively. CONCLUSIONS: SymTrak demonstrates content validity, positive qualitative findings, high perceived usability, brief self-administered completion time, and good internal reliability.

Caregiving for Older Adults with Limited English Proficiency: Transitioning from Hospital to Home.

BACKGROUND: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers. OBJECTIVE: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge. DESIGN: Cross-sectional. PARTICIPANTS: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013. MAIN MEASURES: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences. KEY RESULTS: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress. CONCLUSION: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.

Pediatric epilepsy surgery patients show normal psychosocial development at long-term follow-up despite dissatisfying family dynamics.

Drug-resistant pediatric epilepsy involves unpredictable seizures and long-term medical management. Both factors can alter a child's psychosocial development and the dynamics of the family, to the detriment of patient and family wellbeing. While drug-resistant pediatric epilepsy can be successfully treated by neurosurgery in some cases, the outlook for psychosocial and family functioning after surgery remains unclear. A total of 163 participants across four groups took part in the current study: these were (i) individuals who had undergone surgical treatment of drug-resistant focal seizures approximately five years prior as children, and were now largely adolescents or young adults ('Patients'; n = 23), (ii) their caregivers ('Patient Caregivers'; n = 27), (iii) healthy individuals of similar age and gender to the Patients ('Controls'; n = 53), and (iv) their caregivers ('Control Caregivers'; n = 60). Based on similar software validated in adults, we built an interactive computer program, 'Living with Epilepsy', to evaluate the achievement of age-specific developmental tasks in Patients relative to their peers. The Family Adaptability and Cohesion Scale measured family dynamics. The findings showed that in the context of seizure freedom, after pediatric epilepsy surgery, Patients are similar to their healthy peers in terms of attaining developmental tasks, with no differences between the Patient and Control groups (P > .05). Family dynamics, however, seemed resistant to postsurgical adaptation, with Patients reporting lower levels of balanced family dynamics (cohesion, flexibility) and higher rates of unbalanced family dynamics (disengagement, chaos, rigidity, enmeshment) relative to Patient Caregivers (P < .001-0.041), and the Controls (P = .011-0.034). Patients also reported reduced family satisfaction compared with that of Patient Caregivers (P = .002), which was associated with polytherapy prior to surgery; that is, more drug-resistant seizures. These findings suggested that childhood-onset epilepsy has a lasting effect on family functioning, even when the child has an optimal medical and psychosocial outcome. These initial findings have significant implications for the provision of pre- to postoperative family support in pediatric epilepsy cases.

A hospital-based study on caregiver preferences on acute seizure rescue medications in pediatric patients with epilepsy: Intranasal midazolam versus rectal diazepam.

RATIONALE: About 20 per 100,000 children have convulsive status epilepticus every year, a life-threatening condition. Benzodiazepines are the first-line treatment for prolonged and recurrent seizures. Our study was designed to gain understanding of caregiver perception of acute seizure treatments. METHODS: Our project uses a cross-sectional survey study design using the electronic medical record and a survey at a large academic tertiary children's medical center. Subjects were patients with epilepsy prescribed intranasal (IN) midazolam and/or per rectum (PR) diazepam. The survey was administered to caregivers of children with epilepsy regarding information on the comfort, efficacy, ease of use, and time of administration for patients receiving both abortive seizure medications. Exact binomial tests were employed to determine whether or not differences in caregiver preference exist. RESULTS: One hundred and sixty responses were obtained. Incomplete and duplicate surveys were excluded, leaving 153 responses. Of those responses, 59 respondents reported administering both medications. Among parents who expressed a preference for one medication over the other, more parents felt overall greater comfort with IN midazolam compared with rectal diazepam (p = 0.0004 and p = 0.001), IN midazolam was perceived as easier to use (68%, p = 0.0038 and 74%, p = 0.0004) and more effective (87%, p < 0.0001) than rectal diazepam. Intranasal midazolam was found to be superior to rectal diazepam in several other categories as well. CONCLUSIONS: These parents of children with epilepsy report increased ease of use, comfort, and efficacy with IN midazolam as compared with rectal diazepam suggesting that a readily available form of IN midazolam would be well received in the pediatric population.

Experience of follow-up, quality of life, and transition from pediatric to adult healthcare of patients with tuberous sclerosis complex.

INTRODUCTION: Tuberous sclerosis complex (TSC) is a multisystemic genetic disease with high clinical variability and age-related manifestations. These characteristics add to the complexity of transition to adulthood. This study aimed to explore the perception of medical follow-up and transition experience in a large group of patients with TSC who presented epilepsy in childhood. METHOD: This multicenter French study included patients with TSC aged 18 years or older who developed epilepsy before the age of 16 years. A questionnaire specifically designed for the study explored patients' opinion through 270 questions covering different aspects of their social, familial, professional, and medical courses. RESULTS: The questionnaire was sent to 72 patients, and 60 patients were included in the study (83% response rate) with a mean age of 32 years (18-55 years). Cognitive impairment was present in 80% of patients, and half of questionnaires were completed by the family. Pediatric care was coordinated by the child neurologist and was more regular and multidisciplinary than adult care. Epilepsy had the best follow-up followed by renal issues. Unmet needs were identified for psychiatric and behavioral disorders, both in children and adults. Respondents considered the help in achieving autonomy better in adult care. Only 50% of patients with a normal intellectual development had clear knowledge about their disease and the need for a regular monitoring. Two-thirds of respondents estimated that they had a transition experience between 16.5 and 21-year-old, considered as good in 60% of them. Seventy percent felt continuity between pediatric and adult care, and only 3% of respondents felt that their care would have been better if they were still followed in pediatric healthcare system. The change of care structure and/or caregivers was the most stressful factor during transition and transfer. CONCLUSION: This study highlights persistent issues in the regularity and coordination of the follow-up of patients with TSC despite established international guidelines. Although most patients had a positive transition experience, there is still an urgent need to optimize transition programs. This would be essential to maintain care continuity between pediatric and adult health systems, especially for patients with TSC with epilepsy and high rate of cognitive and psychiatric impairments.

Are volunteering and caregiving associated with suicide risk? A Census-based longitudinal study.

BACKGROUND: Opposing risks have been identified between different prosocial activities, with volunteering having been linked to better mental health while caregiving has been associated with higher prevalence and incidence of depression. This study explored suicide risk of people engaged in prosocial activities of caregiving and/or volunteering. METHODS: A Census-based record linkage study of 1,018,000 people aged 25-74 years (130,816 caregivers; 110,467 volunteers; and 42,099 engaged in both) was undertaken. Caregiving (light: 1-19; intense: ≥20 h/week), volunteering and mental health status were derived from 2011 Census records. Suicide risk (45 months follow-up) was assessed using Cox models adjusted for baseline mental health. RESULTS: Intense caregiving was associated with worse mental health (ORadj = 1.15: 95%CI = 1.12, 1.18) and volunteering with better mental health (OR = 0.87: 95%CI = 0.84, 0.89). For those engaged in both activities, likelihood of poor mental health was determined by caregiving level. There were 528 suicides during follow-up, with those engaged in both activities having the lowest risk of suicide (HR = 0.34: 95%CI = 0.14, 0.84). Engaging in either volunteering or caregiving was associated with lower suicide risk for those with good mental health at baseline (HR = 0.66: 95%CI = 0.49, 0.88) but not for their peers with baseline poor mental health (HR = 1.02: 95%CI = 0.69, 1.51). CONCLUSIONS: Although an increased risk of poor mental health was identified amongst caregivers, there was no evidence of an increased risk of suicide.

Older people living alone (OPLA) - non-kin-carers' support towards the end of life: qualitative longitudinal study protocol.

BACKGROUND: A growing number of older people, mainly women, live in single households. They represent a vulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end of life. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay at home even at the end of life. This paper aims to introduce the research protocol. METHODS: We plan to apply a qualitative longitudinal study to better understand how older people living alone and their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We will conduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 complete data sets and up to 200 personal interviews were planned. These will be complemented by regular telephone contacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructing case trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshops shall assure quality and support knowledge transfer. DISCUSSION: This study protocol aims to guide research in a field that is difficult to approach, with regard to its topic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will be enhanced, which is of major relevance for future care planning. With investment in additional reflexivity and communication procedures innovative results and robust knowledge are expected outcomes.

Can brief telephone interventions reduce caregiver burden and depression in caregivers of people with cognitive impairment? - long-term results of the German day-care study (RCT).

BACKGROUND: Day-care and telephone counseling have been discussed as effective support measures for caregivers of people with cognitive impairment. METHODS: In a two-arm cluster-randomized trial involving multicomponent therapy for cognitively impaired persons in day-care centers and telephone counseling for their caregivers versus treatment as usual (TAU), we investigated long-term effects on caregivers' burden and depressiveness. Person-caregiver dyads involving home-dwelling persons with MCI, mild dementia, or moderate dementia were eligible. Day-care centers were randomized into an intervention group (IG) or a control group (CG). Outcome assessors were blinded. Out of 359 caregivers who had completed a 6-month intervention phase (nIG = 205, nCG = 154), a total of 304 of them were available at the 12-month follow-up (nIG = 173, nCG = 131). Instruments for assessing were the Burden Scale for Family Caregivers - short version (BSFC-s) (caregiver burden) and the Well-Being Index Score (WHO-5) (depressiveness). Mixed ANOVAs were used for the main analyses; descriptive statistics and subgroup analyses were additionally performed; secondary analyses involved multiple linear regressions for the main outcomes that were significant in the unadjusted main analysis. RESULTS: At follow-up, crude mean differences showed a nonsignificant advantage for the IG in caregiver burden [IG: -.20 (SD = 5.39) vs. CG: .76 (SD = 5.49), p = .126, d = .177] and depressiveness (reverse scored) [IG: -.05 (SD = 5.17) vs. CG: -.98 (SD = 5.65), p = .136, d = .173]. For caregiver burden, a mixed ANOVA resulted in significant main effects of group (F (1, 302) = 4.40; p = .037) and time (F (1.88, 568.96) = 3.56; p = .032) but not a significant interaction. The largest effects were found for the "mild dementia" subgroup (d = .443 for caregiver burden and d = .520 for depressiveness). DISCUSSION: Positive long-term effects of a combined intervention involving telephone counseling for caregivers and multicomponent activation for patients were observed especially for mild dementia. However, the treatment effects washed out after the intervention ended. TRIAL REGISTRATION: ISRCTN16412551 (date: 30 July 2014, retrospectively).

Claims data-based analysis of the influence of individual and regional characteristics on the utilisation of long-term care by people with dementia in Baden-Wurttemberg, Germany.

BACKGROUND: Challenges of future dementia care include increasing shortage of qualified healthcare providers and decreasing potential of informal care by relatives. In order to meet those challenges, changes in dementia care are needed. These changes should be based on data of both care utilisation and care supply. The aim of this study was to provide insight into individual and regional characteristics that influence the utilisation of long-term care by people with dementia. METHODS: The study was a retrospective cross-sectional analysis of claims-based data and other available data referring to one index year. All data were aggregated for small geographic districts. The study population comprised people with a dementia diagnosis, 65 years and older in Baden-Wuerttemberg and insured by the largest health insurer. Utilisation of nursing home care, informal care, and respite care was analysed using binary coded logistic multilevel analyses. RESULTS: Seventy nine thousand three hundred forty-nine people with dementia were included in the analyses. Nursing home care was used by 20.4%, informal care by 30.6%, and respite care by 3.5% of people with dementia. Individual characteristics that influence care utilisation included age, sex and the level of care dependency. The utilisation of informal care (OR = 1.713) and respite care (OR = 2.036) was higher in rural districts than in city districts. Respite care supply had an effect on the utilisation of respite care (OR = 1.173). CONCLUSIONS: The study found differences between districts in the utilisation of long-term care for dementia. These differences were largely explained by the composition of the population within the districts. An exception was the utilisation of respite care, which was higher in districts which have higher supply. Individual characteristics that influenced care utilisation are age, sex, level of care dependency and, with regard to informal care, comorbidity. Further research should be conducted on a small-area level, include further individual characteristics as well as other care and living forms.

Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms.

BACKGROUND: Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all. METHODS: Cross-sectional survey data was collected from a convenience sample of n = 84 carers of older people with dementia living in the Illawarra-Shoalhaven region of NSW, Australia. We assessed knowledge, attitudes, information seeking behaviours, and unmet need for respite services in 2016, following national aged care reforms. RESULTS: Over the previous 12 months, 86% of carers sought respite service information. The majority (73%) of all carers reported an unmet need for respite services, and were relying on personal networks to provide support for respite information. Few utilised the new government gateway 'My Aged Care' phone line (11%) or website (25%). However, 35% used a pre-existing helpline to access short term or emergency respite. We found a preference for interpersonal information sources, including local doctor (65%), professionally and volunteer led carer support groups (49%), and family and friends (46%). Those using four or more information sources showed higher capacity to name local respite services. Respite service information seekers were more likely to be caring for someone with behavioural problems, to have received assistance to access services, and to have used respite services in the past 3 to 6 months. CONCLUSIONS: New reforms in the Australian aged care sector have not adequately responded to the needs of carers of people with dementia for respite service information and support. Wider, community-based messaging promoting positive service options and the provision of active personal support is required to address the unmet need for respite in carers of people with dementia.