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Abstract The prevalence of memory disorders is increasing worldwide due to an aging population. The condition affects not only those with the disorder, but also their families and the wider social network. Establishing services that meet the needs of patients and their families is a topical issue and requires knowledge produced from service user viewpoints. However there remains limited knowledge of how families manage their lives when there is a memory disorder. This study produces a substantive theory that describes the processes of managing life after disclosure of a progressive memory disorder from the viewpoint of individuals with that diagnosis and their family caregivers. A qualitative longitudinal research design informed by grounded theory methodology was undertaken. Research data were gathered for 2006–2009 using in-depth interviews (n=40) from those with the memory disorder (n=8) and their family caregivers (n=8). The data were analyzed using a constant comparative analysis. A core category ‘Accepting memory disorder as part of family life’ with related categories and subcategories was formulated from the gathered data. Family illness trajectory begins when patients or close relatives recognize the symptoms. Diagnosis of memory disorder is a turning point in that trajectory. It changes the course of lives for both individuals and their whole family and leads families to seek a new equilibrium. Altering life challenges people with the diagnosis and their family caregivers to restructure their roles and identities. Adjusting to altering self and adapting to the new role of caregiver are intertwined processes. Families strive to manage these changes by acknowledging available qualities and resources, seeking meaningful social support and living for today. Managing life with a memory disorder produces mutual processes in families that contain both positive and negative factors. Accepting memory disorder as part of family life represents a hope-fostering adjustment. The findings confirm and supplement the knowledge base in nursing science of family experiences and the means families use for managing life after diagnosis of a progressive memory disorder. These findings can be well utilized by professionals working with patients and their families who are living with newly diagnosed memory disorder while also advancing nursing education. / Tiivistelmä Väestön ikääntymisen vuoksi muistisairauksien esiintyvyys on kasvussa koko maailmassa. Etenevä muistisairaus vaikuttaa sekä sairastuneiden että perheiden elämään, ja heidän tarpeisiinsa vastaavien palvelujen kehittäminen on ajankohtaista. Perheiden selviytymistä koskevaa tutkimustietoa palvelujen kehittämiseksi on kuitenkin rajallisesti. Tutkimuksen tarkoituksena oli kehittää aineistolähtöinen teoria, joka kuvaa muistisairaiden ja omaishoitajien elämänhallinnan prosesseja muistisairausdiagnoosin varmistumisen jälkeen. Tutkimus oli laadullinen pitkittäistutkimus, jossa aineisto kerättiin vuosina 2006–2009 syvähaastattelemalla (n=40) sekä sairastuneita (n=8) että heidän omaisiaan (n=8). Aineisto analysoitiin grounded theory -metodologian jatkuvan vertailun analyysimenetelmällä. Tutkimuksessa tuotetun aineistolähtöisen teorian ydinkategoriaksi muodostui ’Muistisairauden hyväksyminen osaksi perheen elämää’. Ydinkategoriaan olivat yhteydessä pää- ja alakategoriat, jotka kuvasivat vastavuoroisia elämänhallinnan prosesseja perheessä. Perheiden kehityskulku muistisairauden kanssa käynnistyi ennen diagnoosin varmistumista, kun sairastunut itse tai hänen läheisensä kiinnittivät huomiota oireisiin. Muistisairausdiagnoosi oli käännekohta, joka muutti perheiden elämänkulun suuntaa ja johti etsimään uutta tasapainoa elämässä. Muuttuva elämäntilanne haastoi sairastuneet ja heidän omaisensa rakentamaan uudelleen käsitystä itsestään ja sosiaalisista rooleistaan. Sairastuneiden kokemuksena tämä tarkoitti sopeutumista muuttuvaan itseen ja omaisten kokemuksena mukautumista uuteen omaishoitajan rooliin. Nämä kehityshaasteet kytkeytyivät toisiinsa. Perheet pyrkivät selviytymään muuttuvassa elämäntilanteessaan huomioimalla käytettävissä olevat voimavarat, hyödyntämällä merkityksellistä sosiaalista tukea ja tavoittelemalla elämää tässä ja nyt. Muistisairaiden ja omaishoitajien vastavuoroiset elämänhallinnan prosessit sisälsivät sekä myönteisiä että kielteisiä tekijöitä. Muistisairauden hyväksyminen osaksi perheen elämää merkitsi toivoa vahvistavaa sopeutumista. Tutkimustulokset täydentävät hoitotieteen tietoperustaa perheiden kokemuksista ja elämänhallinnan keinoista muistisairausdiagnoosin varmistumisen jälkeen. Tutkimustuloksia voidaan hyödyntää sekä käytännön hoitotyössä tuettaessa muistisairaita ja heidän perheitään diagnoosin jälkeen että hoitotyön koulutuksessa.

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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.

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.