PwEOD – Biographical disruption
A prevailing theme within eleven of the synthesised sixteen papers reflected disruption of future life plans for PwEOD and their families (Pipon-Young et al., 2011; Hall and Sikes, 2018; Gelman and Rhames, 2016; Johannessen et al, 2016; Johannessen et al, 2017;Johannessen et al, 2015; Johannessen and Moller, 2011; Rostad and Hellzen, 2013;Allen et al, 2009; Sikes and Hall, 2017; Sikes and Hall, 2018).

A synthesis of these studies showed how participants’ awareness of feeling too young to face a dementia diagnosis prevailed (Pippon-Young et al., 2011). For dependents, living with a parent with EOD could alter the experience of ideas of childhood. Hall and Sikes (2017) suggested how life could be on hold. From this position, Hall and Sikes (2018) noted how there was no parental template to draw upon for support. Sikes and Hall (2018) expanded upon their own authorship of other papers and described the ‘Hollywooding’ of the experience of dementia. This referred to the way film and media positioned dementia to a lay public. However, participants reported that this perspective did not equate to their lived reality. Gelman and Rhames (2018) reflected upon the chaos and uncertainty of living with EOD and how life lacked any sense of continuity. Johannessen et al., (2016) and Johannessen et al, (2017) noted that the overall burden of EOD on the family was a major biographical consideration. Shock was recorded prior to and beyond diagnosis with the reshaping of life plans (Johannessen and Moller, 2011; Rostad and Hellzen, 2013). Sikes and Hall (2017) suggested that life could be experienced as hectic prior to diagnosis. Following this, post diagnosis held no changes to a life continuing in crisis or fear of crisis. These feelings extended to include both children and teenagers who were immersed in the difficulties in trying to achieve, enjoy and establish lifetime goals that others took for granted (Hutchinson et al., 2016; Hoppe, 2018; Hall and Sikes, 2016). Extending from this, Allen et al., (2009) and Johannessen et al., (2015) described levels of parentification which became normal ways to react to living within a family. Gelman and Rhames, (2016), spoke of developmental hitches occurring to both emotional and psychological development. The ways that this could be reported lay with noticing that a sibling had stopped smiling and laughing. Hall and Sikes (2016) reported a lack of awareness in children that dementia was terminal.

Some studies discussed how being in the workplace represented feelings of exposure with others noticing changes (Johannessen and Moller, 2011). This could lead to queries by colleagues over observable drops and changes in performance (Johannessen and Moller, 2011). Although early retirement caused by EOD could be a life changing departure it could come as a relief when struggles became overwhelming (Johannessen and Moller, 2011). Johannessen et al., (2016) reported how the younger members of families with a PwEOD struggled to define themselves. This had consequences for their own identity. Johannessen et al., (2015) suggested that the integrity and identity of the family as a whole was diminished in certain participant groups. The parental role was eroded through illness as was the child/teenager’s role interrupted. Therefore, this could feel like, as discussed, how life changing situations at home felt like a continuous life threat (Hall and Sikes, 2018).

In conclusion it appeared that although biological disruption is a common theme, it can be experienced differently. Participants could experience it with a sense of not knowing what the future held thus making plans and expectations hard to follow or to enjoy. This could arise from not understanding the trajectory of the illness and at the same time understanding that changes would be unpredictable making life plans difficult to gauge and direct.

Diagnosis
A dominant theme appeared throughout fourteen of the studies indicating that the periods before and after diagnosis could be pivotal (Flynn and Mulcahy, 2013; Johannessen and Moller, 2011; Allen et al, 2009; Hall and Sikes 2018; Johannessen et al., 2017; Lockeridge and Simpson, 2012; Sikes and Hall, 2017; Sikes and Hall, 2018; Johannessen et al., 2016; Johannessen et al., 2015; Pipon-Young, 2011; Rostad and Hellzen 2013; Gelman and Rhames, 2018;and Hutchinson et al, 2016).
A summary and synthesis of similarities reflected that the period running up to diagnosis could be triggered by major crisis events attracting the intervention of authorities as well as minor events which were not exposed to public scrutiny (Lockeridge and Simpson, 2012). It could prove an exhausting journey (Sikes and Hall, 2018). Diagnosis could provide the catalyst for lifestyle changes (Gelman and Rhames, (2018). However, Lockeridge and Simpson (2012) reported that the road towards the clarity and certainty provided by diagnosis was not always welcomed. When dementia was feared or suspected it could take some time to convince a family member to address the matter through a clinical diagnosis (Lockeridge and Simpson, 2012). It was also acknowledged (Allen et al., 2009) that family carers felt despondent over the quality of diagnosis; the competence of the doctor being able to diagnose dementia and ability to offer any supportive strategy thereafter. Johannessen et al., (2017) reflected how each member of the triad reacted to diagnosis; the clinician, the PwEOD and family. Some evidence uncovered how participants’ credibility was affected (Johannessen et al., 2017; Johannessen and Moller, 2011) as participants felt they were not believed by a clinical audience. However, Johannessen et al., (2017) and Sikes and Hall (2017) reported relief at diagnosis as it gave a rational account of the recent past. But contrasted to this was experiences of loneliness could set in with no one to talk to about the diagnosis (Johannessen et al., 2015). In Johannessen and Moller (2013), diagnosis meant that an explanation was provided for odd behaviour or withdrawal from previous interests. However, this was tempered by the fact that EOD still represented a terminal illness (Johannessen and Moller, 2011).

Experiences and feelings of blame did permeate the diagnostic period. Such conflicts meant that there was a variety in responses from those affected personally by EOD (Hall and Sikes, 2018). Because doctors were unlikely to suspect EOD often subjective criticism and blame directed towards the family members occurred (Johannessen et al., (2017). Some spouses were not often welcomed in the consulting room and their input was not valued (Johannessen et al., 2017). Often diagnosis was finally achieved after investigation of a string of plausible conditions had proven fruitless (Allen, 2009).

The certainty of diagnosis could allow for exploration of potential future pathways. Attempts could be made to incorporate new approaches to health like new treatment therapies and healthier lifestyles (Hall and Sikes, 2018). While some participants felt relief in reaching a diagnosis, suicidal feelings could manifest immediately after diagnosis (Hutchinson et al, 2016). However, diagnosis could also provide the catalyst for making life changes such as giving up career plans for both the PwEOD and their family (Gelman and Rhames., 2018). Acceptance helped make the best of the situation (Rostad et al., (2013). Contrasting with acceptance was the way that the diagnosis period was experienced outside the clinician’s consulting room with one participant being outpaced by his wife’s determination to locate a diagnosis. This meant that the participant lagged in their knowledge and acceptance of the diagnosis (Rostad et al., 2013) Lockeridge and Simpson (2012) illustrated how spouses felt conflicted whilst pursuing a diagnosis. They reported that they felt a level of deceit in reporting symptoms at home.

To conclude, when facing a diagnosis of EOD, there were obstacles. These were present prior to diagnosis with lack of realisation of EOD and a desire to not acknowledge a life changing condition. Medical authorities often failed to identify the condition and as a coping mechanism blamed the family who were consulting. Families coped in different ways where optimism could be a feature but predominantly negative feelings were voiced. Whether positive or negative experiences prevailed, families found their lives following very different paths after the delivery of a diagnosis.

Losing life, friends and competencies
Eight studies reflected themes connected to losses; (Rostad et al., 2013; Gelman and Rhames,2018; Flynn and Mucahy, 2013; Allen et al.,2009; Sikes and Hall, 2018; Hutchinson et al., 2016; Sikes and Hall, 2017 and Johannessen et al., 2014).

The synthesis located the diverse effects which could be considered as losses. Rostad et al., (2013) represented ideas expressed over losses to humanity. This was described as loss of self-identity, esteem, determination and respect which extended to becoming dependent upon others. This led to increased inactivity and passivity. Gelman and Rhames (2018) stated that a lack of finite resources to provide for and recognise needs in the family led to permanent feelings of loss. Sikes and Hall (2018) reported loss of the PwEOD and bereavement and grieving occurring before the death occurred and discussed how life was lived alongside these feelings. In Allen et al., (2009) there was a reported loss of a father role in the family and the loss of expectation of being parented. In Hutchinson et al., (2016) a loss was recorded in opportunities due to mandatory care responsibilities being required to be covered in the household. Sikes and Hall (2017) reported a downward spiral effect of losing a normal perspective. In the Johannessen et al., (2014) study, losses were discussed as losing social role, health, quality of life, ability to work and cognitive capacity.

Flynn and Mulcahy, (2013) positioned their study to understand losses as being service driven and they often fell short of sufficiency for the PwEOD and their family carers. Restrictions were financial, social, emotional and physically felt by the participant group; the family carers (Sikes and Hall, 2017).

To conclude, losses could be understood personally as well as socially.

Experiences around how ‘normal’ life was now dislocated, particularly after the certainty of a diagnosis, were notable and diverse. These experiences could venture into aspects of life which were connected to feelings and perceptions of identity, autonomy and selfhood. This could reflect how it was difficult to isolate claims into disparate concepts. Instead they tended to rely upon linking and merging into each other. Conceptual losses could thus be understood within a number of interlinking experiences.

Liminality and chronicity
Themes drawn from eleven of the sixteen studies revealed experiences around liminality. This effect can arise when people feel ‘out of this world’, ‘betwixt and between’ and in situations divorced from their perception of normal life. Notions of chronicity prevailed with feeling that time did not follow a normal pattern: (Rostad et al., 2013;Johannessen and Moller,2011;Johannessen et al., 2014; Lockeridge and Simpson, 2012; Gelman and Rhames,2018; Hutchison et al., 2016; Johannessen et al., 2015; Sikes and Hall, 2017; Sikes and Hall. 2018;Flynn and Mulcahy,2013 and Johannessen et al., 2017).

The synthesised results led to the following understanding: Johannessen and Moller (2011) noted feelings of confusion and not knowing what was happening to them in the interim period prior to diagnosis. Gelman and Rhames (2018) reported experiences of chaotic feelings of ‘otherness’ and ‘outsiderhood’ in relation to change as well as leading to feelings of failure to cope (Rostad et al., 2013; Johannessen et al., 2014; Johannessen and Moller, 2011). These experiences read to reflect a sensory experience which was experienced as a fracturing away from others and perceived normality (Allen et al., 2009). Spouses could feel rejected and confused over how to cope (Johannessen et al., 2017). Lockeridge and Simpson (2012) outlined being lost with feelings of rejection and how carers could feel bullied into accepting services they did not wish or feel necessary. Allen et al (2009) reported in accordance with the Gelman paper feelings of disconnection whereby other family members could appear co-dependent with the PwEOD. This could lead to epiphanic, revelationary and euphoric traits present whereby certain family members could advocate for the day when the PwEOD recovered or different causes could be found for symptoms. Johannessen et al., 2017; Sikes and Hall (2017) reported how family carers observed feelings of rejection and confusion about everyday life. Johannessen et al., (2016) articulated lifetime rites of passage and aggregated experiences that were under threat such as marriage, graduations and childbirth. Therefore, there was an articulated experience of achievements going unnoticed. Within this failed recognition, a detachment could form with dependents based upon feelings of exclusion and indifference (Hutchinson et al., (2016). This led to background fears of impending decline and death. Sikes and Hall (2017) reported further reflections around the experiences of time and waiting. By the time a diagnosis did arrive, emotional exhaustion prevented diagnosis from providing a ‘Eureka moment’. There nonetheless remained a feeling that life was on hold and there was no destination end to the journey. Themes related to chronicity were noted. Time could feel more burdensome in the way that every declaration and event had to be waited upon. Such experiences were provoked by waiting for news, diagnosis, service provision and uncertainty about the future (Johannessen et al., (2016); Sikes and Hall (2018). Johannessen et al., (2015) articulated the conceptual meme of feeling ‘zombified’ by the experience and taint of EOD. The family reported coping in ways that were more; more dislocated, spatially lost and remote (Flynn and Mulcahy, 2013; Johannessen et al., 2017. Johannessen et al., (2015) recorded metaphorical experiences of ‘slipping away’ of being ‘in another world’ and ‘spinning in a centrifugal machine’.

These concluded experiences of life in limbo including thematic descriptions of dealing with the often chaotic experiences of EOD. The experiences were overarching the confusion that EOD symptoms often provoked in PwEOD and reflected how family felt wrong-footed over daily routines and how to react in a ‘new normal’ life. These led to situations of feeling ‘betwixt and between’ with regard to not finding or locating a comfortable place to occupy in the family as the roles of child/adult, young adult/parent lost definition.

Stigma
Eleven of the sixteen studies reflected stigma was prevalent being reported by both PwEOD and with spouses and dependents; Hutchinson et al., (2016);Pipon-Young et al., 2011, Allen et al.,(2009); Johannessen and Moller, (2011);Sikes and Hall, (2017); Johannessen et al., (2016); Lockeridge and Simpson,(2012); Hoppe (2018); Gelman and Rhames, (2018); Johannessen et al., (2014) and Hoppe,(2018).

Johannessen and Moller (2011) reported how suicidal thoughts could be the outcome of not being confident about being in company with others due to their cognitive abilities. This could be shown in self-harm (Allen et al., 2009). However, most stigma emerged with interaction with others. This is where stigma could manifest obviously. Pipon-Young et al., (2011) discussed ‘saving face’ as a way by which people covered up their dementia through embarrassment and coped socially with potentially discriminating features of their lives. Johannessen and Moller (2011) described how PwEOD could feel marginalised through having no control over what others knew about them. Stigma by association (3) affected participants across some studies (Allen et al.)

(3). Stigma by association is the placing of strain on family members arising from the connection

2009; Hutchinson et al., 2016). Dependents felt stigmatised by having a parent with EOD. At any time the participants reflected how difficult it was to manage their accounts to others often changing information dependent upon to whom they were directing their conversation (Hutchinson et al., 2016) Participant family carers vacillated between guilt and a form of coping. This form of coping allowed family carers to operate daily life whilst trying to shield the PwEOD from difficulties in the aftermath of a dementia diagnosis. Some studies reported how strategies were found to cope and deflect stigma both in the self and other family members (Sikes and Hall, 2017; Johannessen et al., 2016); Lockeridge and Simpson (2012) and Hoppe (2018). Crucially these experiences of being judged negatively emerged when interfacing with medical services (Sikes and Hall, 2017; Johannessen et al., 2016). Gelman and Rhames (2018) reported stigma like experiences reported through loss of status, self-efficacy and credibility. As a result of stigma, dependents could be left with feelings of irrecoverable lack of confidence.

The experiences concluding EOD stigma demonstrated how PwEOD, their spouses and children were affected in different ways; some of which were rooted in the micro-relationships within the family and physician relationships, others emerged within social life in society.

Coping with cautious optimism.
Under the theme of coping, eleven of the sixteen studies reported evidence of participants thriving with EOD (Johannessen et al., (2017); Johannessen et al., (2016); Rostad et al., (2013); Pipon-Young et al., (2011); Lockeridge and Simpson (2012); Millenaar et al., (2016); Johannessen et al., (2015);Gelman and Rhames (2018) Allen et al., (2009); Hutchinson et al., (2016) and Hall and Sikes, (2018).

Pipon-Young et al., (2011) related how PwEOD negotiated positive ways to live well with dementia; ; keeping active and involved and sharing a social life. Rostad et al., (2013) Lockeridge and Simpson (2012) and Johannessen. Rostad et al., (2013) Lockeridge and Simpson (2012) and Johannessen et al., (2017) reported participants as being able to reach acceptance and live with their diagnosed condition. Mental health issues affected coping resulting from unmet needs and lack in provision of support (Millenaar et al., 2016) with reference to young carer literature (4). Johannessen et al., (2016) and Johannessen et al., (2015) showed that part of coping was enabled by detaching from everyday suffering in life to gain a safe perspective. Getting used to a ’new normal’ was possible alongside negotiating the difficulties of life drawing parallels with Parsonian obligations to work and contribute to self and society (Hall and Sikes, 2018). This impacted upon coping themes related to competing in a job market. Gelman and Rhames (2018) and Allen et al., (2009) drew upon claims that coping meant adjusting to living with fear and taking one day at a time. Hutchinson et al., (2016) reported how the identity could be developed which enhanced strategies of coping. Overarching the views on coping was securing a blend of normality which could be achieved provided economic pressures could be minimised or set aside. Resilience helped dependents distance themselves from traumatic family events and overwhelming tension. This meant that part of being a ‘new normal’ could result in not being economically competitive.

(4) Domestic estimates in Scotland suggest mental health difficulties amongst young carers indicate are reported twice as much as is reported by non-carers (Scottish Government, 2017).