Yes / Social care is vital to quality of life for people with young onset dementia and their families. Yet care is hugely variable, frequently lacking and poorly coordinated. We aim to establish current practice in English social care for people with young onset dementia and co-produce evidence-based recommendations and resources for improvement. In Work-Package 1, we will gather qualitative data from 25 people with young onset dementia and/or main supporters residing in England. We will ask them about their experiences of social care (broadly defined, including independent and voluntary sector provision) and suggestions for improvement. In Work-Package 2, we will conduct a short on-line survey with a wide range of staff with a role in adult social care in England. We will find out about current awareness, knowledge and practice and suggestions for improvements. Quantitative and qualitative analysis will provide a picture of current practice. In Work-Package 3, we will use convergence analysis to synthesise the findings from Work-Packages 1 and 2 and present the findings to a stakeholder workshop, to identify feasible priorities for improvement. We will establish what is already known about good practice relating to these key priorities using a scoping review and interviews with professionals. This knowledge will then feed into the co-production of resources and recommendations with key stakeholders to improve social care for people with young onset dementia and their families. This study seeks to address a gap in our understanding of social care provision for people with young onset dementia and develop recommendations and practical resources for improvements. The findings will help people with young onset dementia and supporters to receive higher quality social care. Study registration number: ISRCTN10653250. / This study is funded by the National Institute for Health and Care Research (NIHR) Research for Social Care (RfSC) Programme through grant NIHR204266. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Yes / Objectives: Studies on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on ‘what works’ in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers. Method: Positive examples of support were gathered between August 2017 and September 2018, via a national survey. Inductive thematic analysis was employed to explore the nature of positively experienced services provided for younger people with dementia, including analysis of what was provided by positively experienced services. Results: Two hundred and thirty-three respondents reported 856 positive experiences of support. Data analysis yielded eight themes regarding the objectives of positive services: Specialist Advice and Information on Young Onset Dementia, Access to Age-appropriate Services, Interventions for Physical and Mental Health, Opportunities for Social Participation, Opportunities to Have a Voice, Enablement of Independence while Managing Risk, Enablement of Financial Stability, and Support Interventions for family relationships. Conclusion: The study findings (a) suggest that positive services may collectively create an enabling-protective circle that supports YPD to re-establish and maintain a positive identity in the face of young onset dementia, and (b) provide a basis from which future good practice can be developed. / This work was supported by the Alzheimer’s Society under grant number 278 AS-PG-15b-034.

Bakgrund: Demenssjukdom benämns som “de anhörigas sjukdom” då sjukdomen även påverkar anhöriga. Demenssjukdom delas in i ung och sen, där ung demenssjukdom diagnostiseras före 65 års ålder. Vid ung demenssjukdom befinner sig personen i en annan livssituation och har oftare hemmaboende barn. Syftet var att undersöka ungdomars och unga vuxnas upplevelser av att ha en förälder diagnostiserad med ung demenssjukdom. Metod: En strukturerad litteraturstudie med induktiv ansats, där 10 artiklar valdes ut till resultatartiklar. Resultat: I resultatet framkom det fyra kategorier: Upplevelse av roll- och relationsförändringar, Upplevelse av personlighets- och beteendeförändringar, Upplevelse av informations- och stödbehov och Upplevelse av copingstrategier. Resultatet visar att barnen upplever ett omvårdnadsansvar över hela familjen, en sorg och förlust av sin förälder. Barnen upplever skam, isolerar sig och hittar olika strategier för att lättare kunna hantera sin vardag. Konklusion: Barn påverkas negativt av att ha en förälder diagnostiserad med ung demenssjukdom och upplever känslor av sorg, förlust, stress, rädsla och skam. Barnen upplever ett behov men brist på information och stöd från hälso- och sjukvården. Som sjuksköterska är det viktigt att få kunskap om barns individuella behov för att kunna anpassa den information och stöd de behöver. / Background: Dementia is called “the relatives' disease” as the disease affects the relatives. Dementia is divided into young and late, where young onset dementia is diagnosed before the age of 65. In young onset dementia, the person is in a different life situation and more often has children living at home. Aim: The aim of this study was to investigate adolescent’s and young adult’s experiences of having a parent diagnosed with young onset dementia. Method: A structured literature study with an inductive approach, where 10 articles were selected as result articles. Results: The result shows four categories: Experience of role and relationship changes, Experience of personality and behavioral changes, Experience of information and support needs and Experience of coping strategies. The result shows that the children experience a responsibility to care for the whole family, a grief and loss for their parent. The children experience shame, isolate themselves and find different strategies to be able to easily manage their everyday life. Conclusion: Children are negatively affected by having a parent diagnosed with young onset dementia and experience feelings of sadness, loss, stress, fear and shame. The children experience a need but lack of information and support from the healthcare. As a nurse it is important to gain knowledge about children’s individual needs in order to be able to adapt the information and support they need.

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.

Yes / To develop guidance for clinicians about essential elements that can support clinical decision-making in the diagnostic workup of young onset dementia. Methods/design: Three iterations of a modified e-Delphi consensus survey comprising 23 international expert clinicians specialising in diagnosis of young onset dementia. Outcome measures: A priori consensus was pre-defined as 80% of experts ranking statements in the upper threshold on a seven-point Likert scale that ranged from “not important at all” to “absolutely essential” to diagnosis. Results: 80% consensus was reached on 48 statements that were rated as “absolutely essential” or “very important” to a comprehensive assessment of dementia in a younger adult. In order to inform a subsequent audit of clinical records in which compliance with these statements was assessed, the statements were divided into a Minimum Standard, (consisting of the 15 statements voted by all experts as being “absolutely essential” or “very important”) and a Gold Standard where 48 statements were voted by 80% of the experts as being “absolutely essential” or “very important”. The experts’ response rate across the three rounds was 91.3%. Conclusion: A Minimum Standard and Gold Standard have been created for the diagnostic workup of young onset dementia. The standards provide a clinically useful tool for decision-making, particularly for generalists and those with less experience in the field. The standards will be used to inform a UK case note audit of recently diagnosed patients with young onset dementia. / This work was supported by the Alzheimer's Society grant number 278 AS-PG-15b-034.

Bakgrund Att drabbas av demenssjukdom leder till konsekvenser både för personen som får diagnosen och dennes anhöriga. Följderna blir särskilt påtagliga när personen som får en demensdiagnos är under 65 år då de har en annan livssituation än de som är äldre när de drabbas. Anhöriga har behov av stöd men det som erbjuds motsvarar inte behoven. Syfte Syftet med denna studie är att undersöka vilket stöd anhöriga till personer med tidigt debuterande demenssjukdom önskar i samband med flytt till särskilt boende. Metod Studien genomfördes med kvalitativ metod i form av intervjustudie med innehållsanalys. Ansatsen var induktiv och analys gjordes av både manifest och latent innehåll. Resultat Studien resulterade i två huvudkategorier med sammanlagt sju subkategorier. Resultatet visade att personalen har stor betydelse för de anhörigas upplevelse av stöd. Vidare fanns behov av externt stöd, som god man och kurator. Anhöriga påtalade också brist på stöd i ansökningsprocessen och behov av en person med kunskap och helhetssyn att vända sig till genom hela sjukdomsförloppet. Slutsats Vårdpersonalens bemötande, engagemang och tillgänglighet är av stor betydelse för anhörigas upplevelse av stöd. Möjlighet att involveras i vården av den närstående är viktigt för den anhöriga, samt att få tillgång till andra stödjande insatser. / Background A dementia diagnosis leads to consequences both for the person being diagnosed and their family caregivers. The consequences are even more significant when the person who is diagnosed with dementia is under the age of 65 due to their different life situation compared to those who are older. The family caregivers have a need for support, but the existing support does not meet their needs. Aim The aim of this study is to examine what support family caregivers of persons with young onset dementia need during the transition to a nursing home. Method The study was conducted as an interview study using qualitative content analysis. The approach was inductive and both manifest and latent content was analyzed. Results The study resulted in two main categories with a total of seven subcategories. The results showed that the nursing staff is of great importance for the family caregivers´ experience of support. Furthermore, there was a need for external support, e.g. from a legal guardianor a counselor. Family caregivers also pointed out lack of support in applying for longterm care and they also expressed the need for a case manager to turn to during the course of the disease. Conclusions The staff is of great importance for the family caregivers’ experience of receiving support. To be involved in the care and to have access to other support measures is also a priority.

Bakgrund: Kognitiv sjukdom är ett övergripande begrepp för sjukdomar som drabbar hjärnans funktioner såsom minne, tal och intellekt. Antalet som insjuknar i kognitiv sjukdom förväntas fördubblas fram till 2050 och antalet som insjuknar innan 65 års ålder ökar. Det är rimligt att anta det är en livsomställning med påverkan på livskvaliteten att drabbas av kognitiv sjukdom innan 65 års ålder. Det kan således vara viktigt ur ett omvårdnadsperspektiv att undersöka livskvalitet i relation till kognitiv sjukdom. Livskvalitet är ett begrepp som är centralt för omvårdnad då detta indirekt är ett mål som sjuksköterskan strävar efter att förbättra med hjälp av olika omvårdnadsåtgärder. Därför är det av vikt att undersöka individers upplevelse av livskvalitet och faktorer som kan tänkas påverka detta. Syfte: Syftet är att genom en litteraturstudie beskriva upplevelsen av livskvalitet hos yngre personer med kognitiv sjukdom. Metod: Litteraturstudie av kvalitativa studier analyserad utifrån en integrerad analys. Resultat: Analysen resulterade i ett huvudtema, två teman och sex subteman. Resultatet visar att livskvaliteten varierar över tid och upplevs olika av olika individer, dock hittas gemensamma teman och faktorer som används för att stärka livskvalitén och välmåendet för yngre personer med kognitiv sjukdom. Konklusion: Livskvalitet är ett subjektivt begrepp som varierar över tid. Upplevelsen av livskvalitet stärks av meningsfull aktivitet och genom upprätthållandet av identiteten. Det är viktigt att som omvårdnadspersonal att vara ett stöd för personer med kognitiv sjukdom vilket görs fördelaktigt genom att tillämpa ett personcentrerat förhållningssätt i omvårdnaden. / Background: Dementia is a disease that affects the memory, speech, intellect and other cognitive functions. The number of people diagnosed will double by 2050. Dementia is often associated with an older population but the number who will be diagnosed before the age of 65 will presumably increase. Being diagnosed with young onset dementia (YOD) is presumably a life-changing event which affects the quality of life (QoL). To further examine the experience of living with YOD is of great importance to future health-care research. Aim: The aim of the study is to describe the experience of quality of life among people with young onset dementia (YOD). Method: A literature review of qualitative studies using an integrative analysis. Result: The analysis resulted in one main theme, two themes and six subthemes. The findings show that QoL among people with YOD is affected negatively by a range of factors, but they manage to use coping strategies to improve QoL. Quality of life varies over time and different people have different perceptions of the concept. Many factors are similar which are presented in the result. Conclusion: Quality of life is a subjective phenomenon that varies over time. The experience of quality of life is empowered by meaningful activity and the ability to preserve the identity. It is important for health care staff to be a support for people with young onset dementia and applying a person centered care-approach can be a key element to this.

No / The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS: Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.

Au Canada, on estime que 16 000 personnes vivent avec une maladie d’Alzheimer ou une maladie apparentée à apparition précoce (MAAP) soit lorsque ce diagnostic frappe avant l’âge de 65 ans (Société Alzheimer Canada, 2016). Plusieurs études ont décrit que le diagnostic de la MAAP entraîne plusieurs changements au sein du couple et notamment auprès du conjoint-aidant qui doit faire face à de nombreux défis, en plus de devoir composer avec de nouveaux rôles. Pourtant, peu d’écrits se sont intéressés aux transitions vécues par ces aidants au-delà de la période qui entoure le diagnostic. Cette étude qualitative descriptive avait pour but d’explorer les perceptions des transitions vécues par les conjoints-aidants de personnes atteintes de la MAAP dont le diagnostic est établi depuis plus de deux ans. Plus précisément, elle visait à décrire les types de transitions vécues par les conjoints-aidants, les conditions qui facilitent et celles qui inhibent la « réussite » des transitions ainsi que les patrons de réponses identifiés par les conjoints-aidants. La théorie des transitions de Meleis et al. (2000) a été utilisée comme cadre de référence à cette étude. Des entrevues semi-dirigées ont été menés auprès de trois conjoints-aidants. Une analyse thématique selon Paillé et Mucchielli (2016) a fait ressortir les trois thèmes suivants : 1) un long parcours de proche aidance jalonné de multiples transitions; 2) des conditions personnelles et communautaires qui influencent le succès des multiples transitions et 3) une variété de stratégies pour composer avec le rôle de conjoint-aidant. Les résultats de l’étude permettent de mieux comprendre la réalité vécue par les conjoints-aidants et pourront guider les infirmières dans l’évaluation des besoins propres aux conjoints-aidants, ainsi qu’au développement des interventions et des services visant à faciliter les différentes transitions. D’autres études s’avéreront toutefois nécessaires pour comprendre le phénomène complexe de la proche aidance des conjoints de personnes vivant avec la MAAP. Des pistes pour la recherche, la pratique et la formation des infirmières sont présentées. / In Canada, 16,000 persons are living with early-onset dementia (EOD) (Alzheimer Society Canada, 2016). Several studies have described that the diagnosis of EOD lead to difficulties for the couple and in particular for spouse caregiver who must face many challenges and deal with new roles. Yet, little is known about the transitions experienced by these caregivers beyond the diagnosis period. The purpose of this descriptive qualitative study was to explore the perceptions of the transitions experienced by the spouse caregiver of people with EOD whose diagnosis has been established for more than two years. More specifically, it aims to describe the types of transitions experienced by the spouse caregivers, the conditions that facilitate and inhibit the “success” of the transitions as well as the response patterns identified by the spouse caregivers. The theory of transitions of Meleis et al. (2000) was used as framework. Semi-structured interviews were conducted with three caregivers. A thematic analysis according to Paillé and Mucchielli (2016) brought out three themes: 1) a long journey of caregiving marked out by multiple transitions; 2) personal and community conditions that influence the success of multiple transitions and 3) a variety of strategies for coping with the caregiver role. The results of this study help better understand the lived experience by spouse caregivers and could guide nurses in assessing the specific needs of caregivers, as well as the development of interventions and services that can facilitate various transitions. Further studies will be needed to understand the caregiving experience of spouse living with a partner diagnosis with EOD. Directions for research, practice and nursing education are presented.