Exploring the whole family experience living with younger onset dementia from a social model perspective

Abstract

Social inequalities were identified as being experienced by individuals living with all types of impairments. However, those living with cognitive impairments under 65 years, were identified as being less understood by society, and associated with experiences of significant discrimination. The following Chapter 3; Feeling invisible and ignored: families experiences of marginalisation living with younger onset dementia explored from a social model perspective, the social factors which impact on the experiences of families living with YOD, including children and young people. In Chapter 3, our attention was drawn to the negative impact of society’s response and attitudes, adding to the marginalisation of families - affecting their relationships and ability to function together. The consequences of these lived experiences for children and young people having a parent with YOD, was highlighted as a gap in the research literature. The subsequent Chapter 4: The emotional well-being of young people having a parent with younger onset dementia looked at the societal influences on the emotional well-being of these children and young people from the perspective of the social model of disability. Chapter 4 confirms the ongoing emotional distress faced by children and young people at a particularly challenging time in their own lifecycle. The authors then delved further in an attempt to make sense of their lived experiences, having a parent with younger onset dementia. The outcome of this research resulted in Chapter 5: Empowerment of young people who have a parent living with dementia: a social model perspective, which considered what social factors, could facilitate better support and social inclusion for these children and young people. At this juncture the research demonstrated YOD impacts the whole family unit, thus highlighting the need for greater social inclusion, societal acceptance and enablement. Tailored formal services and support to address the complex and challenging needs of all family members, an area that has had little focus in the research literature, needed further exploration. This challenge was undertaken in Chapter 6: Co-creation of a family-focused service model living with younger onset dementia using the combined perspectives of the social model of disability and the family systems illness model. Bringing together the viewpoints of healthcare and service providers with all family members was critical to making sense of the multifaceted societal challenges faced in providing and receiving age-appropriate services. A theoretical framework was proposed as the basis for a co-created, family-focused service model. VI Conclusion: Throughout this thesis the common theme that has linked these chapters together, from the perspective of the social model of disability, has been the lack of understanding and largely unmet needs of people living with YOD and their family members. Experiences of socially constructed disablement impacts family function, relationships and connectedness. Hence, looking through the social model lens in relation to dementia allows us to see things differently, to redirect attention away from a diagnosis, personal tragedy, and disablement; and instead to focus on choice, control and enablement of the whole family. The proposed co-created, family focused service model could provide the foundation for developing social model principles to service policies and practices through greater cooperation, communication and learning between service users, service providers and stakeholders. With the aim to change societal views, and improve understanding and social inclusion, thereby enabling the whole family to feel valued and live well with dementia.