Kirsten Thorsen

Nobody asked me how I felt: experiences of adult children of persons with young-onset dementia

BACKGROUNDnThere are few studies of young persons (<65 years old) with dementia, and the situation of their children has been a neglected research field. The aim is explore how adult children of a parent with young-onset dementia have experienced the development of their parents dementia and what needs they have for assistance.nnnMETHODnQualitative interviews with 14 informants (aged 20-37 years; 12 daughters, 2 sons) during 2011 were conducted and analyzed thematically.nnnRESULTSnThe informants experienced great burdens and felt neglected during the development of their parents dementia, both by their family and by health and social services. They emphasized a need to be seen as individuals, with their experiences, feelings, and personal needs for assistance. The stresses experienced during the development of parental dementia seemed to increase conflicts in the family. There were variations in reactions between children, depending on age, gender, family structure and relationships, responsibilities, personal relations with both parents, and whether there was an adult primary caregiver. The length of time living together with the parent with dementia seemed to increase the stress and burden to the children. They expressed a great need for information and support.nnnCONCLUSIONnThe findings strengthen the notion of the need for family-oriented support, combined with person-centered care for the children according to their needs. In addition, group meetings and contact with other young people in the same stage of life could be of interest for some.

Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors.

Background Limited research exists on the development and needs of children of parents with young-onset dementia (YOD) (<65 years old). There is scarce knowledge of how these children experience the situation of growing up with a parent with dementia. This study investigates the stories of children of persons with YOD and interprets their metaphorical expressions of their experiences as a source of understanding their situation and needs during the development and course of their parent’s dementia. Methods Qualitative interviews with 14 informants (aged 18–30 years; nine daughters, five sons) were conducted in 2014 and subsequently analyzed by the informants’ use of metaphors. Steger’s three-step method for analyzing metaphors was applied. Results The analysis identified four themes in the metaphors: the informants’ relations to the disease, to the self, to the parent, and to others. From these themes, four core metaphors were abstracted: “my parent is sliding away”; “emotional chaos”; “becoming a parent to my parent”; and “a battle”. Conclusion The study revealed that growing up with a parent with dementia has a great impact on the children’s situation and their experiences of their personal development. Children of a parent with YOD are a group with unmet needs for support. A formalized system where the children can get into contact with service providers to receive tailored information and individual follow-up needs to be established. The service providers must listen to the children’s stories, perceive how metaphors convey their experiences, and recognize their need for support for their own development.

“To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone

ABSTRACT Having dementia before the age of 65 (YOD) represents a radical break from an age-normative and expected life course. The disease afflicts the person’s identity, threatens the self-image and self-confidence, and erodes the person’s plans. The aim of the study was toexamine how people living alone with YOD perceive the course of dementia, their needs, and coping strategies, with a focus on narrating everyday life experiences. A longitudinal study using a qualitative approach was used. Five interviews, each with 10 informants, took place every 6 months from 2014 to 2017. The main theme is the person’s experiences of changes of identity over time. The most significant aspects of their experiences of the dementia affecting them and their reactions are these: the initial signs, coping efforts, concealing the diagnosis, social retraction, existential anxiety, revival of the self, worse and worse, and health personnel as background. The study concluded thatpeople with dementia are able to describe their experiences and needs for a long time during the progression of dementia. Their voices should be listened to for planning of services. Personalized care should be used to support them in order to preserve their identity in a normalized everyday life as far as possible.

Placement schools as professional learning communities in teacher education

Abstract This article investigates how schoolteachers’, school leaders’ and college teachers’ involvement affects placement schools as professional learning communities. Norwegian teacher education is used as a case. The first part builds on a survey among schoolteachers and mentors at 111 placement schools in Norway. It documents great variety in the level of engagement. Interviews with mentors, school leaders and college teachers reveal how cooperation between colleges and placement schools, as well as the school leaders’ commitment, influences the quality of placement. The school leaders’ role proves to be important in developing the schools as professional learning communities, and they seem to have a significant impact on the work of the mentors. The data also show that there is a need for a more substantial cooperation between college teachers and mentors about the student teachers’ professional development as well as a need for a more systematic integration of learning in the two learning contexts.

Family Carers of People with Young-Onset Dementia: Their Experiences with the Supporter Service

Background: Family carers and people with young-onset dementia (YOD) require tailored assistance as dementia progresses. A variety of health care services is needed, including supporter services. To our knowledge, research focusing on experiences with the supporter service is scarce. Aim: To evaluate the supporter service by examining how primary family carers experience the assistance provided. Method: Qualitative interviews with 16 primary family carers of people with YOD were performed from 2014 to 2015. Content analysis was used to analyze the data. Results: Three main themes emerged from the interviews. First, a good match focused on the carers’ experiences of the relationship between the supporter and the person with YOD and included three subthemes: a nice, empathetic personality, a friendship-like relationship, and the content of the meetings. The second theme, relief, addressed the carers’ experiences with the service. The third, coordination, concerned the carers’ relationship with the health care service. Conclusion: Developing tailored services and assistance initiatives is important. A well-organized supporter service is a valuable supplement to formal programs and should be developed as part of an overall support package.

The impact of school leadership on placement schools as learning arenas for teacher education

Abstract Extensive research studies have been conducted on school leadership internationally, but few studies have focused on placement schools. In placement schools, student-teachers are to experience teaching and learning in a variety of contexts, and to participate in school life in a way that is structured and supported. In Norway, school principals have an overall formal responsibility for their schools’ educational and administrative decision-making and traditionally combine administrative and educational leadership roles, more often than in other European countries. The purpose of this study is to examine why, in spite of this, principals of placement schools in Norway handle their placement assignment primarily as an administrative task, thus ignoring mandated elements of their responsibilities. The ambiguity between instrumental demands and educative requests forms a backdrop for understanding the principals’ patterns of behaviour and their resistance to change. Surveys are in this study combined with interviews and related to the international discussion on the same issues, exploring the dilemmas that principals face when they are trying to facilitate the development of a culture of learning in their placement schools.