Table 3: Family One Participants
Generation Participants Waves of interviews Family members not interviewed 1 Apr 2014 2 Oct 2014 3 Apr 2015 Generation where
one person has young onset dementia
Louise, living with Alzheimer's Disease
Jack, her spouse Interviewed together
Josie, her friend Interviewed alone
Adult children Jessica, Robbie
Grandchildren Lauren, 12 years old Interviewed alone
Leo, 11 years old
Lucy, 7 years old
Louise
Context
Louise was 61 at the start of the data collection process, and had been diagnosed with Alzheimer's disease eight months prior to the commencement of the fieldwork. She has been married to Jack for many years and they have two adult children, Robbie, who lives 40 miles away, and Jessica, who lives locally. They have four grandchildren and two step grandchildren.
Louise has lived and worked in the same town all her adult life. She trained as a nurse in the 1970s and worked in various roles before her final employment as a nurse specialist in community nursing. She took early retirement from her position following the
108 Motif: Professional identity
Louise's pride in her professional identity is central to her sense of self and therefore to her experience of dementia. Professional identity formed a strong motif that persisted throughout the three waves of interviews; Louise expressed her connection to her past as a nurse frequently, both during the interviews, and by showing me two objects
connected with her work, her old nursing bag, and a photograph album given to her on her retirement containing pictures of her and former colleagues. Her realisation of the emergence of dementia happened in the context of her nursing practice following the extension of the retirement age, and, indeed, she and Jack perceived that she would not have visited her GP if the symptoms had emerged after retirement:
Jack: Actually a few years ago when they moved the retirement age from 60 to
62 Lou went bananas, but in a roundabout way, in doing that, that has helped her to get diagnosed quicker, 'cause if she hadn't have been in work, and retired at 60...
Louise: I'd have never have gone to the GP
Jack: She'd had never have gone to the GP. She'd have said, 'I'm getting old,
I'm getting forgetful' blah blah blah. But because it impacted on her work, because she was having to work an extra two years, this has fetched it up.
Louise: If I'd hadn't been working and it hadn't been forced on to me in a way, I
don't think I would've even gone to the GP (Wave One)
Difficulties at work manifested themselves in a variety of ways which led Louise to question both her character and her professionalism. For instance, Louise reported throwing a book at a colleague who informed her she was repeating herself, and she described forgetting which type of medication she had given to a patient. For Louise, this behaviour was in stark contrast to her views of herself as a competent 'multi-tasker', a nurse who would be chosen to train others:
Louise: Girls who knew me... used to say 'who wants to know how to do the
(specialist clinical technique) always go out with Louise, 'cause she never deviates from the way it's supposed... it goes ABCD, right to the end
Louise: I was actually forgetting, you have a set routine...wash your hands, put
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and...I hadn't flushed the line through. This was like, to me, this was a routine I practically could have done with me eyes closed... I got to the end and I
thought 'God, I've not done half this whatsit' oh, I said, 'oh I don't know what's
wrong with me tonight' passing it off (Wave One)
However, a turning point for Louise came when, during a confrontation with a patient's daughter, she struggled to complete important documentation. The daughter wanted to file a complaint because Louise had forgotten to administer medication to her mother, and when trying to complete the complaint form, Louise noted that:
Louise: I can still remember my pen being on the paper. I remember that part
of it. And I couldn't string... I couldn't write a sentence. It was all like, as if somebody had've got your brain and jumbled it all up. ..And I thought, I need to write something here, but, I couldn't put a sentence together... when I read it back it was the biggest load of crap you've ever... read in a legal document in all my life. It just didn't make sense at all (Wave One)
Louise's colleagues gradually became aware of her difficulties. Another turning point in her experience was when several colleagues tried to help her remember which medication she had given to a patient by listing possibilities, leading one of her peers to jokingly ask 'have you got Alzheimer's or what?' and I said 'no I haven't, you cheeky git!' (Wave One). Louise's awareness of loss of competence was further amplified by becoming lost and disorientated in the town she had lived in all her life. She frequently talked with pride of her awareness of local geography, of 'knowing all the short cuts' as a consequence of her role as a community nurse. While the concept of intimacy is often considered in relation to interpersonal relationships (Jamieson, 1998), or occasionally relationships with pets (Gabb, 2008), Louise seemed to have an intimate relationship with her locality, a strong and enduring sense of neighbourhood and place which was disrupted by her dementia. Getting lost in the town she has driven around for many years, then, is highly significant to Louise, and she reported it again in the context of her professional life:
Louise: ..Getting lost was one of the reasons that I knew there was a bit of
something wrong 'cause normally I can fly around all ends of it... one night, the main one was a patient that I'd been to for ten years and got to practically the end of where I should have been and suddenly... even to this day I don't know where I ended up and the girl I was with, I said 'where am I?' and she said 'oh I thought you was taking me on one of your short cuts!' ... I don't know where
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I'd gone so she said well I'll get...'turn left, turn right, turn this way' and we'd gone about, I'd say about 5 or 6 streets or whatever away (Wave Three)
The centrality of Louise's professional identity to her sense of self is further elucidated by the impact of having to give up work. While acknowledging the need to stop working because of patient safety, Louise noted that giving up work was 'like a bereavement' and that at the time, it felt like the end of her life. However, by the third interview, Louise seemed to perceive a greater sense of separation between her professional identity and her sense of self:
Louise: It's not like to me, oh it's the end of my life or anything like that, it's the
end of my nursing life, but it's not the end of me (Wave Three)
Using May's (2013) notion of 'belonging' as a conceptual lens, Louise's understanding of who she is is contingent upon to where and to whom she feels she belongs. Her sense of being a competent, trusted, knowledgeable and connected member of a nursing team and of the nursing profession formed a pivotal part of her sense of self, and her acceptance of the end of her nursing practice as a result of her dementia has had profound ramifications for her sense of belonging. She described losing long-standing work friends, and noted, with some resentment, that her manager, whom she had worked with for fifteen years, did not speak to her after her diagnosis, and communicated only by letter. Her diminished connection with her nursing workmates was highlighted in separate interviews both by her and by her former colleague and friend Josie, as the following two quotes illustrate:
Louise: A lot of my friends were work friends... work colleagues as well... we
were a big group of friends inside work and outside work, but a lot of that has
stopped now.
(Wave One)
Josie: She's still Louise, she's still the same person, and a lot of the people,
friends, colleagues at work, they don't see her anymore... Like I said, I'd love to talk to them and say 'Why don't you come? Why don't you see her? She's still
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However, although her sense of connectedness to former colleagues had diminished over time, Louise still clearly gained pleasure, and possibly a recaptured sense of normality, from talking about her nursing practice. She and Josie recounted various anecdotes to me with evident pleasure and humour, and among her remaining work colleague friendships, nursing still formed a substantial part of their conversations, as the following quote from Jack illustrates:
Jack: I mean her dear friend came the other night with her husband, and
Geoffrey sat there and he's saying 'they're talking about work again, they've been retired two years, the pair of them' and I felt like saying to him 'Geoff, it's what they like to talk about'. I mean, Deirdre's not got it (dementia), but Lou loves it, she's 'Remember so-and-so? Oh, he was a right nasty old sod!'
(Wave Three)
In a poignant quote, Jack emphasises the centrality of Louise's professional identity to her sense of self:
Jack: When the girls come from work, you can see her face lift, still, and she
talks about work as if she's still there. The nurse'll never go out of her, you see, that'll be the last thing to go, that I think...the nurse (Wave Three)
Being part of the same profession potentially provides individuals with a firm foundation on which to form friendships (Spencer & Pahl, 2006). Recollecting shared memories in the present is an important means of sustaining friendships, and, as Smart (2007) has noted, individual memories are not formed and revisited in a vacuum; rather, memories are socially shaped, context-dependent and often suffused with emotion. Sharing memories of work is not only pleasurable for Louise, who has invested so much capital in her
professional identity, but also for her friends, who have the opportunity to validate Louise through recalling shared memories of competence:
Josie: If Louise gets onto a topic, say the evening services, plus I feel that she
can remember, she can remember back in the 70s, the early 70s... things that we did, and we have a laugh about that... but she was a fantastic nurse. She wouldn't leave a patient until she'd put 150% into that patient's care... I think reminiscing, it really helps her. Helps her to think she can remember
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Josie's friendship with Louise was also appreciated by Louise's granddaughter Lauren, despite the fact that she and Josie had not had a close relationship themselves. As Josie noted:
Josie: Lauren said 'I've never really liked you Josie' but she likes me now, she
said 'you've been so good to my nana'. She never liked me 'cause I was always telling her, always saying 'you can't speak to your nana like that' but she likes me now, and we talk now, because she likes how I've been with her nana.
(Wave Three)
Charmaz (1983) observed that friendships can fail in the context of chronic illness as ill individuals transition to different social worlds than their friends. Louise's
experience of friendships in the context of dementia may support this theory. The loss of several of her work friendships may be because of the loss of a common social world; the friends that remain seek to re-establish their previously shared social worlds through recalling shared experiences.
In her study of family response to chronic illness, Gregory (2005) observed a tension between the reality of illness and the desirability of normality. One possible way of resolving this tension for Louise is in her use of the present to re-inhabit past events; at times perhaps preferring the competent active self from the past to the more constrained self of the present (Charmaz, 1991).
Motif: social experience of dementia
While Louise reported having lost friends following her diagnosis of dementia, she also created new social spaces. After initially attending support groups for older people with dementia, but feeling that they were not appropriate, she was informed by a dementia support worker that a group for younger people had been set up by a local charity:
Louise: She said, “are you interested?” And I said, “yes,” because I didn't want
to go with all the old people (Wave One)
Over the twelve month data collection period the young onset dementia support group played an increasingly important part in Louise's life, offering her support, a source of friendship, but also inspiring her to play a much more active role in raising awareness of
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dementia. Louise became more involved in social and biomedical research, education, and consultation on community facilities for people with dementia. In the first interview, the purpose of the group seemed to be to offer friendship and support:
Louise: 'Cause she (another person living with dementia) can reflect the things
that happen to me, and I can reflect the things that happen to her
(Wave One)
However, in a later interview, Louise's through-line exhibited a greater sense of
determination to be active; she had been joining other dementia groups and giving talks on her own personal experience of dementia:
Louise: You can sit and feel sorry for yourself, or you can get out and do
something about it (Wave Two)
This sense of agency is common among people with mental health issues, who, Orange (2011) argues, believe they will feel better if they can improve the conditions in which they find themselves. This also extends to improving the lives of others, as Louise drew an especial sense of satisfaction and pride at helping others with young onset dementia to join the group, especially those who seemed to struggle to incorporate the dementia into their sense of self:
Louise: People who won't speak about it, who don't want to... who look on the blinkered and you know, 'nobody's gonna know that I've got dementia' and that. I brought another couple to the Dementia Champions group last week, who'd been on the DAPA (Dementia and Physical Activity) course...she enjoyed that but she didn't realise it was to do with a memory thing... she would never think of herself as having dementia or anything (Wave Three) Louise's increasing sense of agency is likely to be connected to her greater sense of belonging to the social context of dementia, to her immersion (Charmaz, 1991; Baumgartner, 2007) in illness-centric activities. The growing public interest in dementia has led to more funding, creating opportunities for those with dementia to become more active and more involved in social life. Connectivity, for Louise, is key:
Louise: I think keeping in contact with other people has helped me 'cause the
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got, you're going to be stuck in the house all the whole time nobody to talk to, nothing to do' 'cause obviously my life had been around my work before that, but now we go out to groups and clubs and as I say, we go to the Dementia Champions group so we're championing for change in all sorts
(Wave Three)
However, by the third interview, which occurred shortly after the general election, Louise expressed concern that future funding cuts may constrain the availability of services for people with dementia.
Motif: Constructing meanings of dementia
Even though Louise's father and grandmother had both had dementia, and, she felt, had probably developed it at a young age, she did not appear to have considered the
possibility of developing the condition herself. As she wrote in her commentary 'My Journey':
Louise: 'I never thought this would happen to me as I was as fit as a butcher's
dog, but it did and it could easily happen to any of you'
(Excerpt from 'My Journey')
In terms of making meanings of the condition, then, Louise had seen good physical health as a preventative factor for dementia, and did not appear to consider the possible genetic link. Over the course of the fieldwork, Louise became increasingly physically active, going running with another person with young onset dementia and using an exercise bike at home. While Frazer, Oyebode & Cleary (2012) found that the sense of self of older women with dementia was affected by physical disintegration, for Louise, there was a sense of increasing fitness, which Lauren concurs with: 'my nana is fitter now than she's ever been'
(Wave Three). From the perspective of the embodied self (Kontos, 2004), Louise's desire to attain a high level of physical fitness perhaps nourishes her sense of self; seen physical improvements may in some way mitigate the unseen neurological degeneration.
Louise seemed to ascribe the occurrence of dementia to fate, and, with Jack, co-
constructed the metaphor of a dealt hand of cards to symbolise this critical event in their lives:
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Jack: It's not what we expected our retirement to be, but we've been dealt this
hand and we're playing it! (laughs) We're playing it the best we can!
Louise: We've got two aces and two kings and a queen instead of a royal flush!
(Wave Three)
Buchholtz, Spiekermann, & Kächele (2015) have observed that metaphorical language is a form of abbreviation that creates rather than solely represents experience. The
expression of this metaphor condenses yet could also be argued, creates Louise's experience. Louise's hand of cards, while not, as she indicates, the best hand in poker, is