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‘‘It was then that I thought ‘whaat? This is not my Dad’’: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia

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This research used auto/biographical interviews to explore the experiences of 19, 8 to 31 year olds who had a parent with dementia. Thematic analysis revealed challenges occasioned by the master narrative that people with dementia are 'still'
   Article ‘‘It was then that I thought‘whaat? This is not my Dad’’:The implications of the ‘stillthe same person’ narrativefor children and young peoplewho have a parent withdementia Pat Sikes and Mel Hall School of Education, University of Sheffield, UK Abstract This research used auto/biographical interviews to explore the experiences of 19, 8 to 31 yearolds who had a parent with dementia. Thematic analysis revealed challenges occasioned by themaster narrative that people with dementia are ‘still’ the same person they were prior to theonset of their condition. While this notion is – rightly – at the heart of person-centered care indementia services, the ‘still’ discourse conflicts with the experiences of young people. Theiraccounts suggest that the construction of their parent as the same person is not helpful andthat, furthermore, expectations that they will behave and feel towards that parent as they didbefore are a source of distress in what is already a challenging situation. This paper highlights theneed to equip young people with support that acknowledges that their parent may well bedrastically different to the Mum or Dad they previously ‘knew’. Keywords children, young people, young onset dementias, identities, stigma, family members Introduction Those living with dementia are often described as being ‘still’ the same person they werebefore diagnosis. Indeed, the notion that, towards the close of a life ended by dementia,Alice, for example, is still Alice 1 appears to have achieved hegemonic status and becomesomething of a master narrative, hard to question without occasioning negative criticism and Corresponding author: Pat Sikes, School of Education, University of Sheffield, 388, Glossop Road, Sheffield S10 2JA, UK.Email: p.j.sikes@sheffield.ac.uk  Dementia0(0) 1–19 ! The Author(s) 2016Reprints and permissions:sagepub.co.uk/journalsPermissions.navDOI: 10.1177/1471301216637204dem.sagepub.com  at Royal Hallamshire on November 29, 2016dem.sagepub.comDownloaded from   denial. However, 16 of the 19 participants involved in our (UK) Alzheimer’s Society-fundedproject,  The Perceptions and Experiences of Children and Young People Who Have a Parentwith Dementia  said that they found this dominant narrative problematic. Theirinterpretation of their lived experience of having a parent with dementia did not supportit. Furthermore, the fact they did not feel their parent was the ‘same’ person they were beforetheir illness and that consequently they were not able to relate to and feel the same waytowards them as they previously did was a cause of additional stress in what was alreadyoften an almost unbearable situation (Couser, 2009).This paper explores the stories around the ‘Still’ narrative told by these participants andconsiders what they might mean for informing and supporting others in similarcircumstances. The focus is unequivocally on the perceptions and experiences of thechildren and young people. While what they have to say may make for uncomfortablereading, to deny them expression of what living with a parent with dementia has meantfor them is to silence an already marginalised and isolated group, especially given theevidence suggesting that parental dementia in families with children and young peoplecauses greater social and psychological upset, damage, tension, hardship, and familybreak up than it does in families where children are grown up. Such familial difficultiesare reported in studies by Allen, Oybode, and Allen (2009), Barca, Thorsen, Engedal,Haugen, and Johannessen (2014), Denny et al., 2012, Gelman and Greer (2011), Harrisand Keady (2009), Hutchinson, Roberts, Kurrle, & Daly, 2014, Johannenssen, Engedal,and Thorsen (2015), Lord (2010), Luscombe, Brodaty, and Freeth (1998), Millenaar et al.(2014), Roach, Keady, Bee, and Williams (2013), Robertson (1996), Svanberg, Stott, andSpector (2010, 2011).In the UK context where the emphasis is (quite rightly) on living well with dementia, onpositivity and enabling approaches, it can be difficult for researchers to investigate andreport negative experiences (Fontaine & Oyebode, 2014; Griffin, Oyebode, & Allen, 2015;Nolan, Ryan, Enderby, & Reid, 2002). Failing to re-present perceptions and experiences asthey are lived, however, does a serious disservice to the research endeavour and can preventdevelopment and positive change. This is because it may mean that evidence relating to thefuller picture is not made available to the policy makers and service providers who are in aposition to develop interventions (Fontaine & Oyebode, 2014, p. 1269). When the youngpeople we spoke to told us how things were for them we felt ethically bound to respect anddisseminate their accounts.At this point, we want to note that we are aware that some consider it inappropriate touse the descriptor ‘living with dementia’ for anyone who does not personally have, or bemoving towards, a diagnosis of dementia. 2 Our view, however, based on the stories we weretold is that family members often feel the phrase does accurately capture the situation forthemselves as much as for their relative, and that it does so without diminishing orappropriating the personal consequences of having dementia. Identities, dementia and ‘still the same person’ There is an extensive literature dealing with issues around the ways in which ‘illnesses’, of various kinds, and/or being perceived to be ‘differently abled’, have consequences forpersonal and social identities. Sociologists Moji Anderson and Monika Asnani (2013),Arthur Frank (1995, 2013), Patti Lather and Christine Smithies (1997), and AndrewSparkes and Brett Smith (2002), for instance, discuss, respectively, how having cancer or 2  Dementia 0(0)  at Royal Hallamshire on November 29, 2016dem.sagepub.comDownloaded from   experiencing spinal injury or living with HIV/AIDS or Sickle Cell Disease impacts, evenhijacks, preferred identities, interrupts biographical trajectories (Bury, 1982) and affects pre-existing relationships. Illness also disrupts the identities of the ‘patient’s’ family membersand friends. They may end up becoming known, or being labeled, as ‘carers’ and/or as thepartner, parent, child, or friend of a person with a particular illness (cf. Wiltshire, 1998).In addition, they may feel personally changed as a result of the trauma that they haveexperienced and/or continue to experience when a person whom they love or care forbecomes ill. For instance, they may feel the need to adopt a harsher or distanced stancein order to protect themselves from further pain (cf. Miller, 2004). When the illness inquestion carries social stigma (Goffman, 1963), they can be stigmatised by association,with implications for their personal identity, sense of self, self esteem, and how othersview and relate to them.With respect to dementia, the work of Tom Kitwood (1997) focusing on personhood, hasbeen influential in terms of how people with dementia are perceived and, as a result on howthey are supported and cared for. 3 Drawing on Martin Buber’s thinking about relationshipsin terms of dialogic, mutual encounters between ‘I and Thou’, (Buber, 1937/2004) Kitwoodargued for a social, rather than a medical, model of dementia, writing that ‘the keypsychological task in dementia care is that of keeping the sufferer’s  (sic)  personhood inbeing’ (Kitwood & Bredin, 1992, p. 269). Kitwood’s primary concern was with ‘professional’carers working with older people living with Alzheimer’s Disease. Within western societyolder people are, as a group, often homogenised, seen as ‘past it’ and are depersonalised andothered. Kitwood’s challenge to this view is important and especially so when Alzheimer’s,other forms of dementia, and mental health issues are also present. It is perhaps, particularlyeasy to lose sight of someone having their own unique personality and life history when theyare old and confused and have lost their memory. We suggest that the ‘still the same person’dementia narrative could partly have its roots in strategies, such as person-centered care,designed to counter such forgetfulness in professional carers who, unlike family membersand friends, have no previous knowledge of those they are working with. In the context of older people with Alzheimer’s Disease, it can be extremely valuable in furthering respectfulrelationships and care and in ‘honouring’, to use the poet John Killick’s phrase, the personwith dementia.However, not all people with dementia are old and nor do they all have Alzheimer’sDisease. Other forms of dementia such as frontotemporal dementia, vascular dementia,posterior cortical atrophy and dementia with Lewy bodies may primarily manifest, not inmemory loss but in altered behaviours, including loss of empathy and lack of emotionalawareness, which others may experience as personality change, particularly prior to anydiagnosis. There are also language variants of dementia which affect ability to speak and/or communicate. Such changes can have significant implications for existing relationships(see Fontaine & Oybode, 2014; Griffin, Oyebode, & Allen, 2015) and can make the ‘still thesame person’ narrative much more difficult to espouse. Difficulties may be exacerbated whenthe person with dementia denies, or is unaware, that they have changed. Research which haslooked at the extent to which people with a dementia diagnosis feel that their identity andsense of self has been affected has, unsurprisingly, tended to focus on those in the earlierstages of their condition. Findings from these studies are variable and seem to be related tothe type of dementia experienced, with some acknowledging at least a degree of awareness(primarily in those with Alzheimer’s Disease) and others reporting little or no cognizance of any changes even when relatives did feel there were significant differences (Caddell and Sikes and Hall   3  at Royal Hallamshire on November 29, 2016dem.sagepub.comDownloaded from   Claire, 2011; Griffen, Oyebode, & Allen, 2015; Hedman, Hansebo, & Ternestedt, 2012). Ourinvestigation provides some insights into how the children and young people we spoke withperceived and experienced these changes and at this point we will move on to provide someinformation about that study. The perceptions and experiences of children and young people whohave a parent with dementia study The study has its srcins in the experiences of one of the authors’ families. 4 At around theage of 55, when their children were 13 and 15, the author’s spouse began exhibiting what, fiveyears later, were confirmed as being dementia-related behaviours. At the time of writing, 10years on, the spouse has a diagnosis of posterior cortical atrophy, lives in a care home, isextremely limited in ability to communicate and is increasingly physically incapacitated.With its auto/biographical (Stanley, 1993) basis, the study is firmly rooted in C. WrightMills’ (1970) exhortation to employ the ‘sociological imagination’ in such a way that ‘thepersonal uneasiness of individuals is focused upon explicit troubles and the indifference of publics is transformed into involvement with public issues’ (1970, pp. 11–12). Mills, likeGoodson (2013), Oakley (1979) and many others, recognises the opportunities available tothose of us in positions where we can do research, to exploit the potential that auto/biographical approaches offer for connecting private and public in ways that could leadto transformative action at individual and wider social levels (Sikes, 1997, 2006, 2009,2013; Sikes & Goodson, 2003; Sikes & Piper, 2010).The purpose of the project is two fold. The primary aim is to begin to address a significantgap in the research and literature around living with dementia by focusing on, investigatingand re-presenting the perceptions and experiences of children and young people who have aparent with a young onset dementia. There has been relatively little work dealing with thisarea and what there is has frequently taken the form of literature reviews pointing out thedearth of research (e.g. Brown and Kleist, 1999; Green and Kleissen, 2013; Roach, Keady,Bee, & Hope, 2008; Svanberg, Spector, & Stott, 2011; Tindall & Manthorpe, 1997; van Vliet,de Vught, Bakker, Koopmas, & Verhey, 2009). Exceptions include: .  Beach (1994) who described a pilot project to help children understand dementingillnesses; .  Barca, Thorsen, Engedal, Haugen, and Johannessen (2014), Davis, Clovis, Ingram,Priddy, and Tiklenberg (2000), Denny et al. (2012), Gelman and Greer (2011), Hall,Buckwalter, and Crowe (1990), Hutchinson, Roberts, Daly, Bulsara, and Kurrle(2015), Hutchinson, Roberts, Kurrle, and Daly (2014), Johannenssen, Engedal, andThorsen (2015), and Millenaar et al. (2014)) who reported on empirical studies, usingquestionnaires and/or structured or semi-structured interviews, which involvedadolescents and young adults who had or had had parents with dementia; .  Harris and Keady (2009) who quoted people with young onset dementia reflecting on theeffect the condition had on their children; and .  Luscombe, Brodaty, and Freeth (1998) whose study asked adult carers for their views of the impact of dementia on their children.The lack of research in the field translates into a limited range of services and informedresources targeted at supporting young people who have a parent with young onset 4  Dementia 0(0)  at Royal Hallamshire on November 29, 2016dem.sagepub.comDownloaded from   dementia. Adding to, developing, producing and disseminating, such services and resourcesare the other component of the project. In the UK, charities and support groups (e.g. theAlzheimer’s Society, Alzheimer’s Research UK, Alzheimer’s Scotland, the FamilialAlzheimer’s Disease Support Group, The Frontotemporal Dementia Support Group,Young Dementia UK, London Young Onset Dementia Support) have given someattention to children and young people living with parental dementia. These groups haveproduced factsheets and provide links to websites, relevant blogs and on-line videos. TheAlzheimer’s Society also has an on-line discussion forum,  Talking Point , which carries ayoung onset thread, although this seems to be used more by people with dementia, theirspouses and carers than by their younger (i.e. under 25) children. Informative and supportiveresources can be extremely valuable because understanding what is going on when someonehas dementia, sharing experiences and learning that one is not alone can be extremelyimportant in the face of conditions which,  inter alia , can: change personalities andconsequently relationships; lead to altered financial and social living circumstances;involve watching a loved one become incapacitated; raise fears about one’s ownlikelihood of developing dementia; expose one to the ignorance and consequent ridicule of others; result in guilt, grief and distress; affect educational progress and consequently, futurelife chances and outcomes. Methodological approach The study takes an auto/biographical, specifically life historical and narrative approach tocollect the in-depth personal stories of children and young people who have or have had aparent with dementia. Such approaches are complementary to research which seeks toaddress issues of social justice and give voice to hidden and ‘silenced lives’ (McLaughlin& Tierney, 1993; Plummer, 2001; Goodson & Sikes, 2001; Goodson, Sikes, Andrews &Atinkin, in press for publication 2016). On these grounds, they seem particularly suited toexploring and giving expression to the stories of young people who are in a minority, whoseexperiences violate ‘normal’ expectations of parent child relationships, and who are affectedby a stigmatising (Goffman, 1963) and identity spoiling condition (Sabat, Johnson,Swarbrick, & Keady, 2011; Werner, Goldstein, & Buchbinder, 2010).Life historians work in a collaborative fashion with the people whose stories of theirexperiences are the foci of their attention. These stories are then considered in theparticular social, historical and other contexts in which they are lived thus helping tocapture something of the complexity of lives and providing compelling and engagingevidence to show how individuals negotiate their identities, construct futures, make senseof social rules and roles, and adopt or reject ‘culturally sanctioned plotlines’ (Freeman,2010). Analysis takes a thematic approach, with narratives being interrogated for themesin a manner that incorporates the story as a whole (Riessman, 2008).The aim is not to generalise but rather to gain a sense of how people with differentbiographies go through similar social and cultural experiences: in this case, being a youngperson with a parent who has dementia. The approach does not involve asking pre-specifiedquestions but rather participants are ‘simply’ invited to share their story of their parent’sdementia. The intention is to elicit rich and detailed accounts that tell what the dementia hasmeant for them and to gain a sense of what was significant for each particular person ratherthan to obtain responses to questions based on researchers’ assumptions that they know howit is and hence are in a position to ask the questions. Through dissemination and creating Sikes and Hall   5  at Royal Hallamshire on November 29, 2016dem.sagepub.comDownloaded from 
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