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Bakgrund: I dag lever 3,4 miljoner människor världen över med en tidigt debuterande demenssjukdom, vilket avser personer under 65 år. Sjukdomen påverkar inte bara den demenssjuke, utan även personens partner då denna fas i livet innefattas av ett socialt sammanhang av familje- och arbetsliv. Rollen ändras från att vara partner till att bli anhörigvårdare vilket resulterar i en stor förändring i livet. Syfte: Syftet var att belysa partners upplevelser av att leva med en anhörig som drabbats av tidigt debuterande demens. Metod: En allmän litteraturstudie med induktiv ansats där 10 kvalitativa artiklar har granskats. Resultat: Utifrån anhörigvårdares erfarenheter framkom fyra kategorier. Anhörigvårdare beskriver en känsla av ovisshet, förändrade roller och relationer, social avskildhet och bristfälligt stöd. Konklusion: Slutsatsen visar på att livet för anhörigvårdare påverkas från första symptom vidare genom förändrade relationer och roller som uppstår och det bristande stöd som samhället erbjuder. Sjuksköterskor behöver ökad kunskap om anhörigvårdares upplevelser av tidigt debuterande demens för att tillgodose upplevelsen av hälsa och välbefinnande. / Background: Today 3,4 million people worldwide are living with young onset dementia which refers to people under the age of 65. The disease affects not only the person with dementia, but also the person's partner as this phase of life is embedded in a social context of family and work life. The role changes from being a partner to being a caregiver which results in major change in life. Aim: The purpose of the study was to illustrate the partners' experiences of living with a relative affected by early onset dementia. Method: A general literature review with an inductive approach where 10 qualitative articles have been reviewed. Results: Based on the caregivers' experiences, four categories emerged. Caregivers describe a sense of uncertainty, changing roles and relationships, social isolation and lack of support. Conclusion/implication: The conclusion shows that the life of the caregivers' changes from the symptoms, throughout the changing of the relations and roles to the lack of support that the society provides. Nurses need increased knowledge about caregivers' experience of early onset dementia in order to provide accommodate the experience of health and well-being.

Young onset dementia (YOD) affects not only the person diagnosed, but the family unit as a whole. It is estimated that as many as 500,000 people in the United States have YOD and around 250,000 children are involved in caring for these people. A child of a parent with YOD can begin to experience negative effects when the child begins to take part in caregiving for the person with young onset dementia (PWYOD). Feelings of stress, anger, fear of the future, depression, social isolation, and increasing responsibility of caring for the PWYOD can be felt by children as caregivers. Research shows that children of people with YOD have reported an extreme lack of support and decreased communication within the family. The purpose of this thesis was to examine current interventions designed to improve coping for children of parents with YOD. A review of literature using CINAHL, Medline, and PsychINFO was conducted to gather peer-reviewed articles and journals relating to interventions to help children of parents with YOD cope. However, no studies have discussed interventions specifically for the child. Therefore, information was pulled from 5 studies regarding what children of people with YOD feel has helped them, in their respective experiences, to deal with the stresses of a parent with YOD. Research suggests that individualized care should be provided for these children based on: age, developmental stage, and experience. Children have reported that they cope by spending time away from the home, participating in extracurricular activities, and spending time with friends. Clear communication by all members of the family is also reported to be vital in easing the stresses of caring for a parent with YOD. While children have developed these coping mechanisms, interventions need to be formally designed and their effect on improving coping examined. Analyzing the experiences of the children with parents with YOD is necessary for clinicians to gain insight into what interventions worked for this population, and what interventions need to be created for further and more individualized support.

Background: Dementia is a progressive and chronic syndrome that leads to deterioration incognitive functions. Early-onset dementia are symptoms of dementia under 65 years, such as behavioural changes, neurological disorder, and depression. It causes decreased capabilities, dependence, reduced initiative, and motivation. The individuals need help to function. Nursesand family caregivers help to care for them. Aim: The aim of this study was to describe nurses’ and family caregivers’ experiences incaring for persons with early-onset dementia. Method: A general literature review based on ten original articles with a qualitative approachand thematic analysis. Results: The material thematically analysed with three themes identified: a lack of knowledge, information, and support; psychological experience; negative and positive social experience. some of nurses’ experiences impacted them professionally; family caregivers were affected by physical, psychological, social, and economic hardship. Conclusion: The nurses experienced lack of support by the state to give evidence-based care. The family caregiver lacked financial and social support to care for EOD patients. i.e., both nurses and family caregivers have common experience in different ways. They helped to improve the EOD patient’s quality of life. The knowledge from the experiences will create a better understanding of the challenges and offer solutions. / Bakgrund: Demens är ett progressivt och kroniskt syndrom som leder till försämring av kognitiva funktioner. Tidig demens orsakar symtom före 65 års ålder. Sjukdomen kännetecknas av beteendeförändringar, neurologiska störningar och depression och leder ofta till en nedsatt funktionsförmåga, förlust av självständighet samt en minskad initiativförmåga och motivation. Sjuksköterskor och anhörigvårdgivare kan anses ha en nyckelroll i vård av denna patientgrupp med omfattande hjälpbehov. Syftet: Syftet med denna studie var att beskriva sjuksköterskors och anhörigvårdgivares upplevelser av omvårdnad av personer med tidig demenssjukdom. Metod: En allmän litteraturöversikt baserad på tio originalartiklar med kvalitativ ansats samt tematisk analys. Resultat: Materialet analyserades tematiskt och tre teman identifierades: Bristande kunskap, information och stöd; psykologisk upplevelse samt social upplevelse. En del av sjuksköterskors upplevelser hade en yrkesmässig inverkan på dem, anhörigvårdgivare däremot påverkades på det fysiska, psykologiska, sociala och ekonomiska planer. Slutsats: Sjuksköterskor saknade stöd från staten för att kunna ge evidensbaserad omvårdnad för denna patientgrupp. Anhörigvårdgivare saknade ekonomiskt och socialt stöd i sambandmed omvårdnad. Fynden kan bidra till en ökad livskvalité hos patienter med tidig demens, för att öka förståelsen för utmaningar hos denna patientgrupp samt för att hitta fungerande lösningar.

Introduktion: Tidigt debuterande demenssjukdom (TDD) innebär att symtomen på demens debuterat innan 65 års ålder och är ovanligare än den geriatriska demensen. Dessa patienter och deras anhöriga möter andra utmaningar i vardagen än äldre patienter och deras anhöriga, med tanke på deras sociala roller i mitten av livet. Som sjuksköterska är det viktigt att förstå de anhörigas upplevelser för att kunna ge ett tillräckligt stöd till dem, då tidigare studier vittnar om att stödet är bristfälligt. Syfte: Att beskriva vuxna anhörigas upplevelse av att ha en närstående som fått en demensdiagnos med tidig debut.  Metod: Litteraturöversikt med deskriptiv design baserad på 13 originalstudier med kvalitativ ansats publicerade i PubMed. Resultat: De kategorier som framkom genom resultatanalysen var oro och kunskapsbrist relaterat till diagnosen, upplevelser av det nya vardagslivet, förändrade roller, den anhörigas fritid och jobb, ensamhet och stigma samt sorgeprocesser. De anhöriga upplevde främst negativa aspekter av att ha en närstående med TDD, däribland en ansträngd tid innan diagnos på grund av oförklarliga personlighetsförändringar, frustration, skuldkänslor, vårdarrollen, inskränkt fritid, social isolering, nedstämdhet men även vissa positiva erfarenheter framkom. Slutsats: Anhöriga till personer med TDD upplevde negativa känslor, förändringar samt hinder i livet kopplat till den tidiga demensdiagnosen. Det är av stor vikt för sjuksköterskan att vara medveten om dessa upplevelser för att kunna ge de anhöriga rätt stöd. / Introduction: Early onset dementia (TDD) implies a debut of symptoms before the age of 65 and is less common than the geriatric type. These patients and their families face different challenges in everyday life then the older patients and their families, hence their midlife social roles. As a nurse it is of importance to understand the experience of families to be able to offer enough support, since recent studies indicate there is a lack of support.      Purpose: To describe adult family members’ experiences of having a relative with early onset dementia. Method: Literature review with a descriptive design based on 13 primary research studies with a qualitative approach published in PubMed. Result: The categories that emerged through the analysis of the result was anxiety and a lack of knowledge related to the diagnosis, experiences of the new everyday life, changed roles, the family members recreational activities and occupation, loneliness and stigma as well as grieving processes. The family members mostly experienced negative aspects of having a relative with early onset dementia including a hard time before the diagnoses because of the unaccounted changes in behavior, frustration, guilt, the caring role, restricted recreational activities, social isolation, dejection but some positive experiences did appear Conclusion: Family members to relatives with early onset dementia experience negative feelings, changes and obstacles in life related to the early diagnosis of dementia. It is of great importance for the nurse to be aware of these experiences, to be able to provide the families with correct support.

Yes / Objectives: Young onset dementia is associated with distinctive support needs but existing research on service provision has been largely small scale and qualitative. Our objective was to explore service use, cost and satisfaction across the UK. Methods: Information about socio‐demographic characteristics, service use and satisfaction were gathered from people with young onset dementia (YOD) and/or a family member/supporter via a national survey. Results: Two hundred and thirty‐three responses were analysed. Diagnosis was most commonly received through a Memory Clinic or Neurology. The type of service delivering diagnosis impacted on post‐diagnostic care. Those diagnosed in specialist YOD services were more likely to receive support within the first 6 weeks and receive ongoing care in the service where they were diagnosed. Ongoing care management arrangements varied but generally care was lacking. Around 42% reported no follow‐up during 6‐weeks after diagnosis; over a third reported seeing no health professional within the previous 3 months; just over a third had a key worker and just under a third had a care plan. Satisfaction and quality of care were highest in specialist services. Almost 60% of family members spent over 5 h per day caring; median costs of health and social care, 3 months, 2018, were £394 (interquartile range £389 to 640). Conclusions: Variation across diagnostic and post‐diagnostic care pathways for YOD leads to disparate experiences, with specialist young onset services being associated with better continuity, quality and satisfaction. More specialist services are needed so all with YOD can access age‐appropriate care. / Alzheimer's Society. Grant Number: 278 AS-PG-15b-034

La thèse a pour objectifs d'identifier les besoins et les difficultés des conjoints aidants de personnesprésentant une maladie d'Alzheimer. Elle vise également à mettre en évidence les points communs etles spécificités de la situation d’aide en fonction de l’âge d’apparition de la maladie. L’axe 1 porte sur l’analyse du vécu de couples dont l'un des partenaires présente une démence précoce. Les résultats mettent en évidence une évolution dans le rapport au savoir des aidants et des personnes malades. Ils passent d'un besoin de comprendre les changements occasionnés par l’arrivée de la maladie à une mise à distance après l'annonce du diagnostic. De plus, avec l'avancée des troubles, les aidants éprouvent des difficultés à ajuster leur niveau d’aide, ce qui est source de conflits entre les deux partenaires. Les deux études de l'axe 2 ont pour objectif d’établir une comparaison entre les aidants de personnes malades jeunes et de personnes malades âgées à la fois sur leurs besoins et sur leurs modes d’ajustement. La majorité des besoins et des stratégies est commune à tous les aidants. Néanmoins, les aidants de personnes malades jeunes expriment plus de besoins en termes de maintien de contact, d'adaptation des structures de soins et d'accompagnement dans les démarches administratives. Les aidants de personnes malades âgées utilisent plus l'humour, l'aménagement et la mise à distance de l'entourage comme stratégies d'ajustement. L’axe 3 vise à investiguer l'influence des caractéristiques de la situation d'aide sur la détresse du conjoint aidant à l’aide d’une modélisation structurale. Les paramètres de ce modèle général ont été comparés en fonction de l'âge de début de la maladie et du genre de l'aidant. Cette étude met en évidence 4 facteurs influençant le sentiment de détresse des conjoints aidants : le sentiment d'être préparé, la qualité du support familial, l’évaluation de sa santé et la qualité d’ajustement du couple. Ce dernier facteur est plus important pour les conjoints aidants de personnes malades jeunes. L’analyse de ces résultats permet de spécifier le contenu de programmes d’accompagnement en faveur de modules communs à tous les aidants et de modules spécifiques en fonction de l'âge d'apparition de la maladie. / This thesis aims to identify needs and difficulties of the spouse caregivers of persons with dementia. We also investigate similarities and specificities related to the caregiving situation regarding the age atonset of the disease.The first axis examines the experience of couples in which one member received a diagnosis of earlyon setdementia. The results show an evolution in the relation to knowledge of the caregivers and the persons with dementia. They oscillate between the need to understand the changes caused by the disease and a distancing after the diagnosis. Moreover, with the progression of the disease, the caregivers are not able to adapt their level of assistance, which increases tensions between the two partners. The two studies of the second axis aim to compare needs and coping strategies of spouse caregivers of persons with early and late onset dementia. The majority of needs and strategies are the same for all spouse caregivers. However, the spouse caregivers of persons with early-onset dementia express the greatest number of needs related to maintaining contacts, more need of adapted care structures and more need to be assisted in administrative procedures. The spouse caregivers of persons with late-onset dementia use more humor, re-arranging, and getting away from the entourage. The third axis investigates the influence of the characteristics of the caregiving context on spousal caregiver distress with a structural modelisation. The sittings of this general model were compared regarding the age at onset of the disease and the gender of caregiver. This study demonstrated that 4 factors contribute to spousal caregiver distress: preparedness, family support, self-rated health and the quality of the couple relationship. Dyadic determinants were more important for caregivers of PEOD. The analysis of these results permits to specify the content of support for a common core and specific modules depending on the age at onset of the disease.

International and national research has shown that the use of complementary therapies (often referred to in the scientific literature as either alternative therapies or unconventional therapies) is widespread. However, there is little in the scientific literature about the use of complementary therapies in the treatment regime of people with dementia. Specifically, there have been no published results of investigations into the use of Reiki, a holistic complementary therapy, in the treatment regime of people with dementia. Before proceeding with an in-depth examination into the use of Reiki in the care of people with dementia, a questionnaire containing both closed and open-ended questions was distributed to 162 South Australian High Care Residential Facilities (formerly called Nursing Homes) in 2002. The return rate was 58.0% (n=94) of which 50.0% of the mail out (n=81) was available for analysis. Findings from the questionnaires suggested that a wide range of complementary therapies including aromatherapy, massage, music, behaviour therapy, healing touch, Reiki and Therapeutic Touch (Krieger/Kunz method) were used regularly within South Australian High Care Residential Facilities. Complementary therapies were reportedly used to calm residents, improve behaviour management, enhance the quality of life of residents, promote 1:1 interaction, stimulate the senses, and reduce the need for medication. Due to 15 facilities reporting the use of Reiki, a series of semi-structured interviews with Reiki practitioners caring for people with dementia was conducted in 2004/2005. Interview participants (n=10) included a representative range of people providing care for people with dementia in eight Nursing Homes in Adelaide, South Australia. Data reduction methods included a quasi-statistical counting of key words and repeated re-readings of the transcripts to discover the essences, abstract the meanings and arrange them into themes and sub-themes. The results of the interviews suggested that Reiki is an easy to learn and easy to use holistic complementary therapy which has the potential to enhance the quality of life of the persons with dementia, their family members, and their carers. The interview participants reported improved physical, psychological, mental and emotional well-being as well as enhanced relationships and a reduction in negative behaviours following the use of Reiki. The receipt of the first Jack Loader Scholarship from the Rosemary Foundation for Memory Support Inc. in early 2005 enabled the researcher to transfer to full-time studies from April 2005. Key Words: aged care; alternative therapies; complementary therapies; dementia; early onset dementia; one to one interaction; quality of life; Reiki; therapeutic touch; unconventional therapies.

<p>Om närstående ska orka leva tillsammans med en yngre demenssjuk partner behöver de erbjudas stöd som är utformat utifrån deras situation och behov. Syftet var att i samarbete med närstående till personer vars demenssjukdom debuterat före 65 års ålder planera ett närståendestöd. Metoden som användes var Participatory Action Research (PAR), en interaktiv forskningsmetod som innefattar reflektion, analys och handling. Fokusgruppssamtal genomfördes med två fokusgrupper vid vardera tre tillfällen. Samtliga deltagare var make eller maka som levde tillsammans med en yngre demenssjuk partner. Studien visade att närstående genomgår en process som har stora likheter med och följer den transitionsprocess som personen med demenssjukdom går igenom. Initialt upplevde närstående oro, ovisshet,ensamhet och osäkerhet och man upplevde brist på stöd. För att lindra dessa upplevelser krävs indirekt stöd riktat mot den sjuke och direkt stöd riktat mot den närstående. Tidigt i sjukdomsförloppet behövs individuellt anpassat stöd som bör förändras i takt med att sjukdomsprocessen fortskrider. Att ha tillgång till en person som kan fungera som lots mellan de olika övergångar närstående går igenom var betydelsefullt.</p> / <p>Living together with a younger spouse who is suffering from dementia requires that relatives are offered support. The aim of this Participatory Action Research (PAR) project was to, in collaboration with relatives, plan support for relatives to persons with dementia below 65 years of age. PAR is an interactive research method based on reflection, analysis and action. Two groups of relatives participated in focus groups at three occasions and data were content analysed. Relatives were wives or husbands to a younger person with dementia. Findings showed that relatives pass through a similar transition process as the person. It is important to offer individualized support initially, support that needs to be changed as the disease proceeds. Furthermore, the study showed that if relatives shall manage their own anxiety, uncertainty, and feelings of loneliness, emotional support is necessary. However, it is impossible to just offer direct support to the relatives without considering the sick persons’ needs. Finally, a personal guide that could follow the couple trough the entire process would be of importance.</p>

Om närstående ska orka leva tillsammans med en yngre demenssjuk partner behöver de erbjudas stöd som är utformat utifrån deras situation och behov. Syftet var att i samarbete med närstående till personer vars demenssjukdom debuterat före 65 års ålder planera ett närståendestöd. Metoden som användes var Participatory Action Research (PAR), en interaktiv forskningsmetod som innefattar reflektion, analys och handling. Fokusgruppssamtal genomfördes med två fokusgrupper vid vardera tre tillfällen. Samtliga deltagare var make eller maka som levde tillsammans med en yngre demenssjuk partner. Studien visade att närstående genomgår en process som har stora likheter med och följer den transitionsprocess som personen med demenssjukdom går igenom. Initialt upplevde närstående oro, ovisshet,ensamhet och osäkerhet och man upplevde brist på stöd. För att lindra dessa upplevelser krävs indirekt stöd riktat mot den sjuke och direkt stöd riktat mot den närstående. Tidigt i sjukdomsförloppet behövs individuellt anpassat stöd som bör förändras i takt med att sjukdomsprocessen fortskrider. Att ha tillgång till en person som kan fungera som lots mellan de olika övergångar närstående går igenom var betydelsefullt. / Living together with a younger spouse who is suffering from dementia requires that relatives are offered support. The aim of this Participatory Action Research (PAR) project was to, in collaboration with relatives, plan support for relatives to persons with dementia below 65 years of age. PAR is an interactive research method based on reflection, analysis and action. Two groups of relatives participated in focus groups at three occasions and data were content analysed. Relatives were wives or husbands to a younger person with dementia. Findings showed that relatives pass through a similar transition process as the person. It is important to offer individualized support initially, support that needs to be changed as the disease proceeds. Furthermore, the study showed that if relatives shall manage their own anxiety, uncertainty, and feelings of loneliness, emotional support is necessary. However, it is impossible to just offer direct support to the relatives without considering the sick persons’ needs. Finally, a personal guide that could follow the couple trough the entire process would be of importance.