Bakgrund: I Sverige beräknas att cirka 40% av personer med kognitiv sjukdom vårdas på särskilt boende och innan de flyttar dit är det ofta anhöriga som ger informell om­vårdnad i hemmet. Tidigare forskning har visat att vården av en person med kognitiv sjukdom och processen att flytta denne till särskilt boende är påfrest­ande för anhöriga, med stor risk för att utveckla egen ohälsa. Regeringen har under 2022 beslutat om en anhörig­strategi för att stärka anhörigas rätt till stöd, och Socialstyrelsen publicerade ett kunskapsunderlag för vårdgivare under 2023 i syfte att underlätta implementering av anhörigperspektivet. Därför är det intressant att studera hur sjuksköterskor idag stöttar anhöriga under denna process. Syfte: Studiens syfte är att utforska hur sjuksköterskor i kommunal verksamhet beskriver stödet de ger till anhöriga till personer med kognitiv sjukdom under transitionsprocessen från ordinärt boende till särskilt boende, samt om de upplever att det finns förbättringsmöjligheter.  Metod: En kvalitativ intervjustudie med induktiv ansats genomfördes. Det gjordes 13 semistrukturerade intervjuer med sjuksköterskor inom kommunal hemsjukvård och särskilt boende, med minst ett års erfarenhet från ena eller båda verksamheterna. En kvalitativ innehållsanalys med en manifest tolkning gjordes för att få fram ett resultat.  Resultat: Analysen resulterade i fyra huvudkategorier: 1. Att hjälpa anhöriga ur en ohållbar situation. 2. Att skapa en god relation. 3. Att samverka. 4. Att förhålla sig till brister i verksamheten. Resultatet visade att sjuksköterskorna börjar stötta anhöriga i processen långt tidigare än förväntat och är medvetna om de svåra känslor som anhöriga brottas med innan de fattar beslut om flytt. Sjuksköt­erskorna på särskilt boende arbetar ofta hårt med att öka tryggheten för anhöriga och göra dem delaktiga, och ett väl fungerande teamarbete är viktigt för ett gott samarbete med anhöriga, liksom att det finns anhörigstödjare att tillgå. De pekade också på att det finns brister i verksamheten, både av organisatorisk och kulturell art, som påverkar stödet till anhöriga negativt.  Slutsatser: Studien visade att sjuksköterskor i hög grad är medvetna om de problem och utmaningar som anhöriga står inför när de måste separera från en familje­medlem med kognitiv sjukdom. Studien pekar på förbättringsbehov avseende sjuksköterskors kompetensnivå, rutiner som verkar för ett mer jämlikt tillhanda­hållande av stöd för anhöriga, samt att sjuksköterskor får mer resurser för denna folkhälsofrämjande verksamhet. / Background: Some 40% of persons with dementia in Sweden live in care homes, and before they move there, are cared for by informal family caregivers in the home. Previous research has shown that the process of caring for a person with dementia and moving them to a care home is taxing for family caregivers, with increased risk of developing health problems of their own. The Swedish government has in 2022 presented a national next-of-kin strategy aiming to strengthen the right to support for family caregivers and Socialstyrelsen published a guide for healthcare providers to implement the next-of-kin perspective in 2023. In this light, it is of interest to study how registered nurses working in homes and care homes support family caregivers today.  Aim: The aim of the study is to investigate how registered nurses in the context of elder care, both in ordinary homes and in nursinghomes, describe the support they give to relatives of persons with dementia during the transitionprocess from ordinary living to care home living, and if they see possibilities for improvement.  Method: A qualitative interview study with inductive approach was made. There were 13 semistructured interviews made with registered nurses working in home care and care home settings, having at least one year of experience from one or both of the settings. A qualitative content analysis with a manifest interpretation was made to generate a result.  Results: The analysis resulted in four main categories: 1. Helping family caregivers in an untenable situation. 2. Creating a good relationship. 3. Cooperation. 4. Relating to the shortcomings of the area of care. The result showed that registered nurses support family caregivers long before expected and are aware of the difficult feelings relatives deal with before they decide on care home living. The nurses in care homes often work hard aiming to create a sense of security and participation for relatives. A well functioning team is a foundation for a good collaboration with relatives, and access to external support is an important resource. The nurses also identified organizational and cultural problems, affecting the support negatively.  Conclusions: The study shows that registered nurses are highly aware of the problems and challenges facing family caregivers when needing to separate from a family member with dementia. The study indicates areas of improvement concerning the nurses need for further education, routines that facilitate a higher degree of equal opportunities for relatives, and that the nurses have more resources allocated for this area of preventative public health care.

Contexte : La détérioration de l’état nutritionnel liée à la perte d’autonomie qui accompagne l’évolution de la démence du type Alzheimer (DTA) peut être limitée par un proche aidant efficace. À long terme, le rôle soignant du proche aidant peut affecter sa propre santé physique et psychologique. Objectifs : (1) décrire les caractéristiques sociodémographiques des patients et de leurs proches aidants; (2) examiner l’évolution de la maladie et des variables à l’étude au cours de la période de suivi; (3) explorer la relation possible entre le fardeau perçu du proche aidant, l’état nutritionnel des patients et la stabilité du poids corporel du proche aidant. Hypothèses : L’absence du fardeau chez l’aidant est associée à un meilleur état nutritionnel chez le patient; la détérioration de la fonction cognitive chez le patient s’accompagne d’une augmentation du fardeau perçu par l’aidant; la dégradation du fardeau chez l’aidant conduit à sa perte de poids. Méthode : Les données analysées proviennent de l’étude « Nutrition-mémoire » menée entre 2003 et 2006 dans les trois cliniques de cognition situées dans des hôpitaux universitaires à Montréal. Quarante-deux patients avec une DTA probable vivant dans la communauté et leurs aidants ont été suivis en dyades pendant une période de dix-huit mois. Les analyses ont porté sur les données colligées du recrutement à douze mois plus tard en raison du nombre restreint des patients interviewés à la dernière mesure. La relation entre le fardeau de l’aidant et les variables caractérisant l’état nutritionnel chez les patients a été évaluée à l’aide des analyses de corrélations, du test khi-carré ou du test de Fisher. L’état cognitif des patients était évalué à l’aide du score au Mini-Mental State Examination, le fardeau de l’aidant était estimé par le score au « Zarit Burden Interview », l’état nutritionnel des patients était défini par la suffisance en énergie et en protéines, le score à l’outil de dépistage nutritionnel des aînés, le poids et l’indice de masse corporelle des patients. Résultats : Le fardeau perçu des aidants était associé à la suffisance en énergie chez les patients. Le nombre de patients ayant des apports insuffisants en énergie était plus important chez les dyades où les aidants percevaient un fardeau plus élevé. Toutefois, aucune association n’a été observée entre le fardeau des aidants et le risque nutritionnel ou la suffisance en protéines chez les patients. La détérioration de la fonction cognitive des patients ne semble pas avoir provoqué une augmentation du fardeau chez leurs aidants. De plus, l’augmentation du fardeau de l’aidant n’était pas accompagnée d’une perte de son poids corporel. Par ailleurs, un fardeau plus important a été observé chez les aidants des patients obèses ou présentant un embonpoint. Conclusion : La réduction du fardeau perçu des aidants permettrait d’améliorer les apports alimentaires des patients et ainsi de limiter ou minimiser le risque de détérioration de leur état nutritionnel et de perte de poids. / Background: The progressive decline in nutritional status related to the loss of autonomy commonly observed in Alzheimer’s disease (AD) may be limited by an effective caregiver. In the long term, the caregiver’s role may affect his own physical and psychological health. Objectives: (1) to describe the demographic characteristics of patients and their caregivers; (2) to examine the evolution of the disease and study variables during the follow-up period; (3) to explore the possible relationship between the caregiver’s perceived burden, the nutritional status of patients and the stability of caregiver’s body weight. Hypotheses: The absence of caregiver burden is associated with better nutritional status in patients; the decline of cognitive function in patients is accompanied by an increase in the caregiver’s perceived burden; and an increased caregiver burden leads to a loss of body weight. Methods: We analysed data from the “Nutrition-memory” study carried out between 2003 and 2006 in the three university hospital memory clinics in Montréal. Forty-two community dwelling patients with probable AD and their informal caregivers were followed as dyads for a period of eighteen months. Analyses focused on data collected from recruitment to twelve months later because of the limited number of patients interviewed at the last measurement. The relation between caregiver burden and the variables characterizing the nutritional status in patients was assessed using correlation analysis, chi-square test or Fisher’s exact test. The patient’s cognitive function was assessed using the Mini-Mental State Examination, caregiver burden was estimated by the Zarit Burden Interview, and the nutritional status of patients was defined by their adequacy in energy and proteins intake, the elderly nutrition screening score, weight and body mass index of patients. Results: The caregiver’s perceived burden was associated with the energy adequacy in patients. The number of patients with inadequate intake of energy was higher among dyads caregivers who perceived a higher burden. No association was found between the caregiver’s burden and the nutritional risk or protein adequacy in patients. The deterioration of patient’s cognitive function does not seem to have led to an increased caregiver burden. In addition, increased caregiver burden was not accompanied by weight loss. Moreover, a greater burden was observed among caregivers of patients who were overweight or obese. Conclusion: Reducing perceived caregiver burden could improve dietary intake of patients and thereby limit or minimize the risk of deterioration of their nutritional status and weight loss.

Contexte : La détérioration de l’état nutritionnel liée à la perte d’autonomie qui accompagne l’évolution de la démence du type Alzheimer (DTA) peut être limitée par un proche aidant efficace. À long terme, le rôle soignant du proche aidant peut affecter sa propre santé physique et psychologique. Objectifs : (1) décrire les caractéristiques sociodémographiques des patients et de leurs proches aidants; (2) examiner l’évolution de la maladie et des variables à l’étude au cours de la période de suivi; (3) explorer la relation possible entre le fardeau perçu du proche aidant, l’état nutritionnel des patients et la stabilité du poids corporel du proche aidant. Hypothèses : L’absence du fardeau chez l’aidant est associée à un meilleur état nutritionnel chez le patient; la détérioration de la fonction cognitive chez le patient s’accompagne d’une augmentation du fardeau perçu par l’aidant; la dégradation du fardeau chez l’aidant conduit à sa perte de poids. Méthode : Les données analysées proviennent de l’étude « Nutrition-mémoire » menée entre 2003 et 2006 dans les trois cliniques de cognition situées dans des hôpitaux universitaires à Montréal. Quarante-deux patients avec une DTA probable vivant dans la communauté et leurs aidants ont été suivis en dyades pendant une période de dix-huit mois. Les analyses ont porté sur les données colligées du recrutement à douze mois plus tard en raison du nombre restreint des patients interviewés à la dernière mesure. La relation entre le fardeau de l’aidant et les variables caractérisant l’état nutritionnel chez les patients a été évaluée à l’aide des analyses de corrélations, du test khi-carré ou du test de Fisher. L’état cognitif des patients était évalué à l’aide du score au Mini-Mental State Examination, le fardeau de l’aidant était estimé par le score au « Zarit Burden Interview », l’état nutritionnel des patients était défini par la suffisance en énergie et en protéines, le score à l’outil de dépistage nutritionnel des aînés, le poids et l’indice de masse corporelle des patients. Résultats : Le fardeau perçu des aidants était associé à la suffisance en énergie chez les patients. Le nombre de patients ayant des apports insuffisants en énergie était plus important chez les dyades où les aidants percevaient un fardeau plus élevé. Toutefois, aucune association n’a été observée entre le fardeau des aidants et le risque nutritionnel ou la suffisance en protéines chez les patients. La détérioration de la fonction cognitive des patients ne semble pas avoir provoqué une augmentation du fardeau chez leurs aidants. De plus, l’augmentation du fardeau de l’aidant n’était pas accompagnée d’une perte de son poids corporel. Par ailleurs, un fardeau plus important a été observé chez les aidants des patients obèses ou présentant un embonpoint. Conclusion : La réduction du fardeau perçu des aidants permettrait d’améliorer les apports alimentaires des patients et ainsi de limiter ou minimiser le risque de détérioration de leur état nutritionnel et de perte de poids. / Background: The progressive decline in nutritional status related to the loss of autonomy commonly observed in Alzheimer’s disease (AD) may be limited by an effective caregiver. In the long term, the caregiver’s role may affect his own physical and psychological health. Objectives: (1) to describe the demographic characteristics of patients and their caregivers; (2) to examine the evolution of the disease and study variables during the follow-up period; (3) to explore the possible relationship between the caregiver’s perceived burden, the nutritional status of patients and the stability of caregiver’s body weight. Hypotheses: The absence of caregiver burden is associated with better nutritional status in patients; the decline of cognitive function in patients is accompanied by an increase in the caregiver’s perceived burden; and an increased caregiver burden leads to a loss of body weight. Methods: We analysed data from the “Nutrition-memory” study carried out between 2003 and 2006 in the three university hospital memory clinics in Montréal. Forty-two community dwelling patients with probable AD and their informal caregivers were followed as dyads for a period of eighteen months. Analyses focused on data collected from recruitment to twelve months later because of the limited number of patients interviewed at the last measurement. The relation between caregiver burden and the variables characterizing the nutritional status in patients was assessed using correlation analysis, chi-square test or Fisher’s exact test. The patient’s cognitive function was assessed using the Mini-Mental State Examination, caregiver burden was estimated by the Zarit Burden Interview, and the nutritional status of patients was defined by their adequacy in energy and proteins intake, the elderly nutrition screening score, weight and body mass index of patients. Results: The caregiver’s perceived burden was associated with the energy adequacy in patients. The number of patients with inadequate intake of energy was higher among dyads caregivers who perceived a higher burden. No association was found between the caregiver’s burden and the nutritional risk or protein adequacy in patients. The deterioration of patient’s cognitive function does not seem to have led to an increased caregiver burden. In addition, increased caregiver burden was not accompanied by weight loss. Moreover, a greater burden was observed among caregivers of patients who were overweight or obese. Conclusion: Reducing perceived caregiver burden could improve dietary intake of patients and thereby limit or minimize the risk of deterioration of their nutritional status and weight loss.

Heart failure is a growing public health problem associated with significant morbidity and mortality. Family support positively affects outcomes for the person with heart failure while also leading to caregiver burden. Registered nurses have a key role in supporting and meeting the needs of family caregivers. The overall aim was to explore the situation and needs of family caregivers to a person with heart failure, and explore requisites and ways of supporting and involving family caregivers in heart failure nursing care. Two interview studies, one web survey study and one intervention study were conducted between 2012 and 2017. A total of 22 family caregivers, eight persons with heart failure and 331 registered nurses participated in the studies. Family caregivers' daily life was characterized by worry, uncertainty and relational incongruence but salutogenic behaviours restored new strength and motivation to care. Family caregivers experienced that their caregiving was taken for granted by health care professionals. Family caregivers expressed a need for a permanent health care contact and more involvement in the planning and implementation of their near one’s health care together with health care professionals. Registered nurses acknowledged family caregivers’ burden, lack of knowledge and relational incongruence. A registered nurse was suggested as a permanent health care contact to improve continuity and security. Registered nurses neither acknowledged family caregivers as a resource nor their need for involvement. Registered nurses working in primary health care centres, in nurse-led heart failure clinics, with district nurse specialization, with education in cardiac nursing care held the most supportive attitudes toward family involvement in heart failure nursing care. Family health conversations via telephone in nurse-led heart failure clinics were found to successfully support and involve families. The conversations enhanced nurse-family relationship and relations within the family. They also provided registered nurses with new, relevant knowledge and understanding about the family as a whole. Family health conversations via telephone were feasible to both families and registered nurses, although fewer and shorter conversations were preferred by registered nurses. This thesis highlights the divergence between family caregivers’ experiences and needs, and registered nurses’ perceptions about family caregivers’ situation and attitudes toward the importance of family involvement. It adds to the knowledge on the importance to acknowledge family caregivers as a resource and to support and involve them in heart failure nursing care. One feasible and successful way is to conduct Family health conversations via telephone in nurse-led heart failure clinics.

The diploma thesis deals with the impact of dementia syndrome in clients of social field service on workers in direct care. The thesis connects two theoretical levels, which are closely related to the topic. This is primarily the level of the disease itself with dementia syndrome and the circumstances associated with caring for a sick person. The second level deals with the topic of managing a team of workers in direct care, with a focus on field social services. The research in the sequential variant made it possible to emphasize the moments that are specific in the care of clients with dementia syndrome in the home environment. The intention was to name the stress moments that come with working with a given target group in the home environment. At the core of the pressures mentioned by the respondents, the stress resulting from the unpredictability of the situation was found as a common denominator. It is unpredictability, given the client's illness, in the conditions of the home environment, in which the client is used to making his own decisions, despite the worsened cognition. At the next level is the stress resulting from unclear responsibility for the content of the service. The employee must be able to flexibly move from a role that is more managerial to a role where the service is managed...