Life changing moments : transitions and critical points in young-onset dementia

Abstract

Background: Persons who are diagnosed with dementia before the age of 65 are commonly referred to as persons with young-onset dementia (YOD). Younger persons and their families have different needs from those in older persons with dementia. However, previous research has identified a lack of support services addressing these specific needs. Persons with YOD and their family members will experience various critical points and transitions during the disease trajectory. As we are not yet able to cure underlying diseases causing dementia, support should focus on enhancing well-being and Quality of life (QoL) / Health Related Quality of Life (HRQoL). This could be achieved by paying extra attention when persons with YOD and their family members experience critical points, to facilitate healthy transitions.

Aim: The overall aim of this thesis is to enhance the knowledge and understanding of how to facilitate healthy transitions in YOD, by describing changes in QoL and HRQoL over time, and by exploring the critical points and transition processes that persons living with YOD and their family members experience in different phases of dementia.

Methods: Studies I – III were part of a longitudinal project, including participants with YOD after diagnosis. Study I included data on self-reported QoL and HRQoL from 33 participants, collected every six months over a period of 24 months. We assessed changes over time and differences between ‘completers’ and ‘noncompleters’. Trajectories in self-rated QoL and HRQoL were also explored by visual inspection of scatter plots. A sub-sample of 15 participants from study I took part in yearly interviews. These interviews were conducted shortly after diagnosis (study II) and one year after diagnosis (study III) and analyzed by means of qualitative content analysis. In study II we used an inductive approach, and in study III we took on a deductive approach using the categories identified in study II as a framework for data coding. Study IV focused on the perspectives of family members. For this study, 15 family members of persons with YOD were recruited from residential care homes and one support group. To be included in the study the person had to be over 18 years of age and have a family member with YOD living in a residential care home. The family members were interviewed twice and asked to retrospectively describe their experiences of critical points and transitions throughout the disease trajectory. The interviews were analyzed with thematic analysis.

Findings: Study I showed great variation in individual scores and trajectories of QoL and HRQoL over time, without identifying specific time points in need of attention. In the qualitative studies with persons with YOD (studies II and III) and family members (study IV), being diagnosed with YOD was described as a lifechanging event. Four critical points clearly emerged from the analyses. These were related to receiving the diagnosis, the premature ending of working life, not receiving formal support, and relocation to a residential care home. The critical points, especially receiving the diagnosis, consequently led to changes in roles and redefinition of identity, and for many, a withdrawal from social activities.

Conclusion: Facilitating transitions in YOD is a shared responsibility between the health care sector and social service sector. Therefore, all professionals who meet persons with YOD need to have knowledge about critical points and be aware of signs of unhealthy responses to the transitions. Support for persons with YOD and their family members should focus on regaining control over the changed life situation and facilitating engagement in meaningful activities as a means of reducing the risk of social isolation. The immediate period following disclosure of diagnosis emerged as an especially vulnerable period, in which persons with YOD are likely to need more frequent contact and follow-up from the memory clinics than what is offered today. The findings also emphasize the need to improve knowledge and understanding of the specific needs in YOD, including education of employers and social service officers.