[pt] O envelhecimento populacional é uma realidade que acarreta consequências como o aumento de doenças crônico degenerativas e síndromes demenciais. Neste contexto são necessários cuidadores informais, familiares e formais que podem atuar tanto na residência do idoso como também nas Instituições de Longa Permanência para Idosos (ILPI). O presente trabalho tem por objetivo estudar o papel e particularidades de cada um dos agentes do cuidado - idosos e cuidadores, além de apresentar ideias que visam melhorar a qualidade de vida, o funcionamento cognitivo e aliviar os sintomas de depressão e ansiedade para ambos os grupos. Para tanto, quatro estudos desenvolveram este objetivo com diferentes ferramentas. Como resultados, é possível destacar o impacto da sobrecarga do cuidador no funcionamento cognitivo de cuidadores familiares, a influência da renda média e da escolaridade no funcionamento cognitivo de cuidadores contratados, além da investigação sobre os idosos receptores de cuidado, que demonstraram desempenho cognitivo abaixo do esperado. Por fim, são propostas ações que visam melhorar a qualidade de vida e a saúde mental, como um todo, dentro do ambiente institucional. É importante ressaltar a necessidade de mais estudos e implementação de práticas que visem melhorar as condições de vida e trabalho dentro das Instituições de Longa Permanência para Idosos. / [en] Population aging is a reality that has consequences such as the increase in chronic degenerative diseases and dementia syndromes. In this context, informal, family and formal caregivers are needed who can work both in the elderly s residence as well as in Long Stay Institutions for the Elderly (ILPI). The present work aims to study the role and particularities of each of the care agents - the elderly and caregivers, in addition to presenting ideas that aim to improve quality of life, cognitive functioning and relieve symptoms of depression and anxiety for both groups. To this end, four studies developed this objective with different tools. As a result, it is possible to highlight the impact of caregiver burden on the cognitive functioning of family caregivers, the influence of average income and schooling on the cognitive functioning of hired caregivers, in addition to the investigation of elderly care recipients, who demonstrated cognitive performance below expected. Finally, actions are proposed that aim to improve the quality of life and mental health, as a whole, within the institutional environment. It is important to emphasize the need for further studies and implementation of practices that aim to improve living and working conditions within Long Stay Institutions for the Elderly.

From 2011 to 2031, the Canadian population living with neurological conditions is expected to double, but the population able to give informal care is not keeping pace, leading to a greater care burden. One element of this increasing care burden is emotional care. However, the effects of giving emotional care on caregiver health outcomes have not been sufficiently explored in the caregiving literature, where the majority of studies focus on instrumental forms of care, or fail to differentiate between different aspects of caregiving. This problem is further complicated by findings from other contexts which indicate that emotional supporting and helping others actually benefits the supporter or helper. Informed by the stress process and other ancillary theories, I use data from the 2012 General Social Survey to test several hypotheses which may help us understand the mental health, functional health, and caregiver burden of caregivers of persons with neurological conditions who emotionally support their care receivers, and of caregivers who are the sole provider of emotional support. The results suggest that emotionally supporting a care receiver with a neurological condition is detrimental to caregiver mental health, and that being the sole emotional supporter is detrimental to caregiver mental health, functional health, and experience of burden. A significant interaction effect also exists between emotional supporting and caregiver gender for functional health. These findings have important implications for future research, for intervention planners, and for caregivers themselves. / Graduate / 2020-08-06

This thesis focuses on mapping out work burden of formal caregivers in social services, above all on cathegories influencing a level of the burden. Its aim is to describe cathegories/areas of work burden of caregivers in retirement homes at standard wards and at wards with a special measures regime, where they take care of clients suffering from dementia. A sub-aim is to find out whether there are differences in perception of the work burden at the two types of wards and differences between work burden at these wards. Based on the conclusion of this thesis, recommendations for the management of retirement homes will be formulated. The research will be conducted in a retirement home which has both types of wards - the standard one and the one with speacial measures regime. Its respondents will be the formal caregivers of these wards. Key words Formal caregiver, paid caregiver, burden, measurement of caregiver burden, workload of formal caregiver, home for the elderly, retirement home, nursing home

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p < 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p < 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = −0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.

Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes. Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs. Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed. Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV). Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.

Indiana University-Purdue University Indianapolis (IUPUI) / Little is known regarding the psychosocial outcomes of adult siblings of adults with autism. Accordingly, the current study sought to: (1) illuminate factors that predict health-related quality of life, caregiver burden, and reported benefits in adult siblings of adults with autism, using a stress and coping framework and (2) compare outcomes of siblings of adults with autism (n = 31) to siblings of adults with Down syndrome (DS) (n = 54). For the within subject hypotheses, analyses were repeated within the DS group and an overall Disability group (n = 97). The Disability group consisted of participants in the Autism and Down syndrome groups plus twelve individuals in a mixed group of adult siblings of adults with DS who presented with co-morbid symptoms of autism. Variables were organized using The Adult Sibling Caregiver Conceptual Model (ASCCM) into three categories: antecedents (e.g., sibling relationship quality, problem behaviors of the disabled sibling), mediators (e.g., coping strategies, cognitive appraisal types), and psychosocial outcome variables (i.e., mental and physical health-related quality of life, caregiver burden, and reported benefits). For the within subject primary hypotheses, I posited a series of relationships between the antecedents and outcomes based on prior literature on demographic and individual difference predictors (e.g., siblings of adults with autism with fewer problem behaviors would have increased health-related quality of life [HRQOL], decreased caregiver burden, and increased reported benefits) and on stress and coping factors related to the burden of providing care for an individual with autism (e.g., greater use of avoidant coping strategies would be related to lower HRQOL, increased caregiver burden, and decreased reports of benefits). Exploratory hypotheses also were examined (e.g., being married would be associated with increased HRQOL, decreased burden, and increased reported benefits). The within-subject results indicated support for eight of the ten primary hypotheses and five of the six exploratory hypotheses when examined within at least one of the study groups: Autism, DS, or Disability. Overall, sibling caregivers, regardless of their sibling’s disability, reported more favorable psychosocial outcomes when demands were lower (e.g., less severe levels of problem behaviors, fewer autism symptoms exhibited by their disabled sibling, decreased additional pile-up stress), when resources were available to cope with stress (e.g., social support, respite care), and when healthy responses to stress were reported (e.g., use of emotion focused vs. avoidant coping strategies, use of challenge vs. threat appraisal types). Of note, reported benefits, which have rarely been examined in the autism literature, were strongly related to the quality of a sibling relationship across all study groups, and with the helpfulness of received services and perceived social support within the Autism group. The between subject hypotheses also were largely supported. As expected, compared to siblings of those with Down syndrome, siblings of those with autism demonstrated greater levels of caregiver burden and lower mental HRQOL. Moreover, there was a rank ordering in levels of caregiver burden across disability groups; siblings of adults with DS reported the lowest burden, siblings of adults with DS with symptoms of autism reported significantly higher levels of burden, and siblings of those with autism reported the most burden. The results imply that autism, either alone or co-morbid with another diagnosis, presents an increased risk of stress and caregiver burden, not only in parent caregivers, but also in sibling caregivers. Interestingly, there was also evidence for higher levels of stress related growth within the Autism group compared to the DS group. Future research will be needed to generalize the results of this study to broader samples of adult siblings while taking a life course perspective to assess changes in non-disabled siblings’ outcomes over time.