Living with early-onset dementia

: thematic analysis of dementia blogging and autobiography

Abstract

Background
Dementia is the biggest cause of death in the United Kingdom (Matthews, 2016). Early-onset dementia (EOD) is a subset of the dementias affecting people between the ages of forty-five to sixty-five (Mercy, 2008). People with early-onset dementia (PwEOD) can find themselves negotiating very different experiences from those who develop the condition in later years. As EOD occurs in prime working-age and parenting years, the implications can therefore be challenging (Beattie et al., 2004; Rayment and Kuruvilla, 2015). PwEOD can still possess good health relative to people with typically older onset dementias. However, due to the under-researched nature of the condition, the number of PwEOD is likely to be underestimated (Kaiser and Panegyres, 2006). As a result, there is a lack of suitable services for PwEOD to access (Withall, 2013). Therefore, EOD represents a significant public health, economic and personal concern with few suitable strategies to address the diverse needs of a younger population, thus making it a much-needed area of research development.
Aims
The aim of the thesis was to establish the experience of EOD from autobiographical and other written content. The focus was upon the impact of having a diagnosis of dementia at working-age. This aim required the collection of deep, rich data, from a sample of PwEOD.
Methodology
The study was conducted from a qualitative perspective grounded in social constructionism and symbolic interactionism. A systematic literature review (SLR) was carried out to identify gaps in the current literature. A meta-ethnographic synthesis was used to synthesise qualitative studies based on experience of EOD (Noblitt and Hare, 1998). Following this, personal accounts by PwEOD were selected to be analysed to understand the personal experiences of living with EOD. Four autobiographies and a blog provided the data for a thematic analysis (TA) to be performed which over two studies examined personal and social effects.
Findings
The findings presented as two studies; Study One considered the personal aspects of the condition and Study Two considered the social and interpersonal aspects.
Study One:
Diagnosis was a pivotal point which indicated the end of one era and the beginning of another. Shock was the initial experience. Whilst also confirming an unwelcome trajectory to life, the writers moved into varying levels of acceptance. The diagnosis was simultaneously wanted and unwanted. Diagnosis formed the first theme.
Notions of separation in an insecure place of limbo were common. Changes occurred; transition had to be negotiated in stages of separation from others. Spatial oddities and matters of chronicity were related to the sense of not knowing the time. These experiences were linked to liminal experiences and the inevitable need to ‘let go’. These ideas formed the second theme ‘Lost in time and space’. The transitional experience of feeling ‘unfixed’ was not always interpreted negatively. Personal identity formed the third theme. Identity was impacted by both the diagnosis itself and the experiences of living with EOD. The writers described how they had lost both their previous roles in life and their sense of self. Writing had been adopted to help reconstruct identity with a diagnosis of dementia.
Study Two:
The idea of contagion was drawn from cultural tropes which evoked ideas of stigmatising contagion. Experiences of feeling rejected through fear of others’ concerns about them were explicitly discussed or implied through the writing. This was understood as blame and shame. There was a disenfranchisement with humanity and belonging. This affected the credibility that struggled with stigma. Fears were voiced that family kin might ‘catch dementia’ from the PwEOD in the way it consumed their lives. This contributed to the impact of a contagious view of EOD. This inevitably led towards stigmatising effects and contributed to the breakdown of identity. Credibility was found to be crucial to identity. It could be a fluid matter knowing whether an outsider was pitching their belief in the PwEOD being disabled and unreliable in a malignant and deviant sense or a medical fraud. Stigma was sometimes driven by outsiders and their perceptions, making the life of PwEOD more difficult. The activity of PwD as walkers and ‘wanderers’ was one that was noted frequently. Emphasis on walking helped express feelings of exasperation and helplessness, but there was a discrepancy between walking and wandering and the stigma that was attached to wandering. These issues form the second theme, ‘blame and shame’. Managing potential changes to identity provoked problems and behaviours undermining the personhood and wellbeing. This reflected difficulties for the writers to overcome a loss of identity as well as dealing with stigma imposed by others. Using autobiography on the theme of illness offered a boost to regaining a refreshed identity. These ideas formed the theme ‘social and interpersonal identity’ which discussed the claiming back of a renewed if damaged identity. Social identity therefore could be challenged to restore a renewed and more potent personality with a social message for the self as well as others.
Discussion
The discussion found significance in the diagnostic transition throughout the synthesis of the SLR and studies One and Two. Diagnosis provided a life-defining experience begging the need to address changes to life and living. Life with EOD could be expressed as feeling torn apart with no stable ground upon which to stand. These changes occurred as experiences which could be articulated as vague, elusive and unknowable leading to ambiguity rather than certainty. The journey from chronic illness to face others’ reactions could be discriminatory. Situating EOD in a solely biomedical model meant that it was more likely that the stigmatising aspects of EOD made it less feasible to find positive factors. Moving from this, there was evidence of adaptation which looked to reunify body and self accordingly in ways that were workable and socially evident to others as identity forming. A new identity had to be balanced carefully between what was traded away by what could no longer be managed and blended into the new and more inspired identity made up of new accomplishments. Social identity was often found to be present across gender and working roles. Lives could, at the same time, be lost and located to a new location through the pursuit of writing autobiographically. This thesis showed how writing published material allowed for the regeneration of self and how it was possible to make different identity gains than in previous ‘healthy’ lives. The material is based upon a small sample of writers and adds to the limited research that currently exists in the field of studying qualitative life experiences with EOD. It provides evidence of a skilled and participative subset which can bring more insight to what it is like to have dementia.
Conclusion
Conclusions reflected that with the SLR, many gaps and needs were identified within the limited studies drawn from four available studies by PwEOD. However, of the studies included to expand family kin experience of EOD, many concerning elements were highlighted showing unmet needs and phenomena such as parentification and the loss of childhood and adolescence. However, with the expanded inclusion of Study One and Study Two using TA the findings suggest that PwEOD, are finding increasingly independent and diverse ways of giving voice to their condition. One way of doing this is through autobiography and blogging. This response in turning to this outlet is initiated by a permanent loss of health. From this state, a variety of consequences, both gains and losses could occur. This has implications for identity. With the onset of chronic illness, everyday life upon which former identities hinged, changed. The importance of being able to reconstruct identity suggested this was a pivotal process in living with EOD together with maintaining dignity, stigma, skills, minimising losses along with broadening key social relationships and networks. Identity required empirical validation in daily life with a minimising of credibility gaps which often occurred from social side-lines. A more individual approach may be more effective when diagnosing and planning care for this special subset of individuals with dementia. The concept of identity lies with how people create meanings and act assertively as they interpret their experience. The thesis found that identity goals are changed with a diagnosis of EOD. Future research would benefit from seeking independent qualitative views surrounding EOD for the PwEOD and immediate family kin. By exploring the working-age/parenting nature of EOD context may help build upon the positive and inhibit the negative effects of living with EOD. This may also support growing families whose own identities are affected by having someone in the family with EOD.

Date of Award	Oct 2019
Original language	English
Awarding Institution	Abertay University