Living with and beyond dementia: a phenomenological investigation of young people’s lived experience with dementia and the transition from pre-diagnosis through diagnosis and beyond to living well with dementia.

Douglas, Jane

Abstract

Younger People with Dementia (YPwD) are those who receive a diagnosis of dementia under the age of 65. In Scotland the number of people with dementia who meet this definition is approximately 3200 (Alzheimer Scotland, 2017). The purpose of this study was to explore the human experience of living with dementia at a younger age and to consider interpretations of well-being as defined by the subjective experience of the participants. At the start of this study there was limited quality research available which explored the lives and experiences of YPwD. At that time there was some recognition within professional groups and practitioners that YPwD would benefit from age appropriate services. This study used an Interpretive Phenomenological design to explore the experiences of YPwD and used in-depth qualitative interviews with eight people who were diagnosed with dementia under the age of 65, to capture their journey through pre-diagnosis, diagnosis and beyond. Interpretive Phenomenological Analysis was utilised for the primary analysis. A secondary analysis was then conducted with the initial findings using Self-determination Theory, Basic Psychological Needs Theory, autonomy, competence and relatedness to identify areas of well-being.
The study identified four superordinate themes situated within a four phase transition pathway, which identified how a diagnosis of dementia impacted on the person and the process they underwent following diagnosis. These are:pre-diagnosis phase, living in a changing world, awareness of the changing self, discombobulation; diagnostic phase, anger and relief, the fragmented self, consideration; post diagnostic phase, the challenge of learning to live
with dementia as a younger person, the evolving self, assimilation; and the phase living well beyond dementia, consolidated self, consolidation. The study highlighted that while having a diagnosis of dementia at a younger age is a challenging and devastating experience, it is possible to live a good and productive life beyond the diagnosis of dementia.
The secondary analysis using Self-determination Theory, Basic Psychological Needs Theory identified that where the basic psychological needs were supported, this enabled participants to embrace their lives living with and beyond dementia with improved wellbeing. The findings suggest that the basic psychological needs were thwarted in the pre-diagnostic phase and during and immediately after diagnosis, creating feelings of ill-being. The study acknowledges the strong sense of identity around the younger person with dementia and suggests that this group perceive their dementia, and the support they need to live with the condition to be a different experience to that of older people. The ability of a number of the participants to live an active life within a supported community cannot be underestimated, and suggests that this area of care and support needs to be evaluated in light of the changing needs of people living with dementia, particularly those who are diagnosed at such an early part of their lifecycle.

Citation

Douglas, J. Living with and beyond dementia: a phenomenological investigation of young people’s lived experience with dementia and the transition from pre-diagnosis through diagnosis and beyond to living well with dementia. (Thesis). Edinburgh Napier University. http://researchrepository.napier.ac.uk/Output/1032617

• Thesis Type: Thesis
• Deposit Date: Jan 31, 2018
• Publicly Available Date: Jan 31, 2018
• Keywords: Dementia, Young People, Alzheimer's, Well-Being,
• Public URL: http://researchrepository.napier.ac.uk/Output/1032617
• Contract Date: Jan 31, 2018
• Award Date: 2017-10