Understanding the dementia diagnosis: the impact on the caregiving experience.

Article

Understanding the dementia diagnosis: The impact on the caregiving experience

Dementia 2014, Vol 13(1) 59–78 ! The Author(s) 2012 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301212447157 dem.sagepub.com

Laura A Stokes North Staffordshire Combined Healthcare Trust, UK

Helen Combes Staffordshire University, UK

Graham Stokes BUPA, UK

Abstract Objectives: There is a paucity of research surrounding disclosure from the perspective of caring partners, therefore this research explores how caring partners understand and make sense of diagnostic information. Method: Semi-structured interviews were conducted with 10 spouses of people with dementia. Interviews aimed to elicit participants’ understanding of dementia and the way that information was used to make sense of dementia. Interviewee accounts were analysed using interpretative phenomenological analysis. Results: Four main themes emerged: lack of information; personal understanding and implications for adjustment; societal understanding and persistent stigma; and lack of partnership working. Conclusions: The analysis indicated a lack of information and continued support following a diagnosis. In the absence of information and support, caring partners described difficulty understanding and adjusting to behavioural, physical and psychological changes in their partner. A greater understanding of the condition was beneficial in terms of adjustment and emotional responses to a partner. Keywords carers, dementia diagnosis, experience, qualitative

Corresponding author: Laura A Stokes, North Staffordshire Combined Healthcare Trust, Stoke-on-Trent, UK. Email: [email protected]

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Introduction The World Health Organisation (WHO) describes dementia as a syndrome due to disease of the brain, usually of a progressive nature, in which there is a disturbance of multiple higher cortical functions (World Health Organisation, 2007). Effective diagnosis and support present an international challenge, as estimates of global prevalence have indicated as many as twenty four million cases (Ferri et al., 2005). Whilst the importance of sharing a diagnosis has been acknowledged by the Department of Health in the United Kingdom (Department of Health, 2001), evidence highlights considerable variability in disclosure practice both nationally and internationally (Bamford et al., 2004; Carpenter, & Dave, 2004). Research has revealed a widespread use of euphemisms such as ‘forgetfulness’ and ‘memory problems’ to convey a diagnosis (Wolff, Woods, & Reid, 1995; Gilliard, & Gwilliam, 1996; Cody, Beck, Shue, & Pope, 2002; Downs, Clibbens, Rae, Cook, & Woods, 2002; Connell, Boise, Stuckey, Holmes, & Hudson, 2004; Johnson, Bouman, & Pinner, 2000). Evidence suggests that a diagnosis does not always help the person and their family to understand and make sense of their experiences (Preston, Marshall, & Bucks, 2007; Paton, Johnson, Katona, & Livingston, 2004). Difficulty understanding the condition may be linked to the finding that many dementia caregivers find it difficult to access quality information pre and post diagnosis (Knapp, & Prince, 2007; Chenoweth, & Spencer, 1986; Holroyd, Turnbull, & Wolf, 2002). Caregivers report only limited explanations of the meaning or consequences of the condition (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). As many general practitioners (GPs) report using euphemistic terms, and information is often difficult to obtain, families faced with the onset of dementia may draw on their existing knowledge to understand and make sense of symptoms. Lay understandings of an illness are not only limited in terms of diagnosis and clinical presentation, but also represent personal attitudes, beliefs and observations (Aronowitz, 1998). Caregivers’ attributions regarding problematic behaviours and the ability of the person with dementia to control their behaviour have been explored in a recent study (Paton et al., 2004). Interviews were conducted with 205 caregivers as part of a larger longitudinal study. The findings revealed that the majority of caregivers did not attribute behavioural changes to dementia and, instead, believed the behaviours to be under their partner’s control (Paton et al., 2004), suggesting a limited understanding of the condition. Recent qualitative research has explored how caregivers understand and make sense of the condition of dementia with findings revealing a gradual process of acquiring knowledge and ‘making sense’ of experiences (Perry, 2002; Robinson, Clare, & Evans, 2005; Daniels, 2008). A recent study exploring couples’ reactions to receiving a diagnosis revealed a lack of knowledge about dementia and uncertainty about what was happening to the person with dementia and why. Importantly, couples who understood and accepted the diagnosis found it easier to make sense of, and adjust to, changes in their partner (Robinson et al., 2005). A lack of understanding of the diversity of problems associated with dementia has been linked to uncertainty regarding the nature of difficulties experienced in everyday life by caring partners (Quinn, Clare, Pearce, & Van Dijkhuizen, 2008). Caregivers displayed surprise at the pervasive impact of dementia; this surprise was related to limited explanations provided at diagnosis and the caregivers’ understanding of dementia as uniquely affecting memory (Quinn et al., 2008).


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Research on diagnostic disclosure in dementia has largely focused on quantifying attitudes and practice, rather than exploring the process and impact of disclosure (Bamford et al., 2004). Furthermore there is a paucity of research exploring how diagnostic information influences partners’ experiences of caring for a person with dementia. The present study explores how caring partners understand and make sense of the diagnosis of dementia, and how this affects their experiences as caregivers. This study will help to answer the following questions: What information are partners given following a dementia diagnosis? How do partners understand and make sense of the dementia diagnosis? How does information and support pre and post diagnosis help partners to understand the condition and prepare for their role as a caring partner?

Methodology Design An exploratory, qualitative approach was deemed the most appropriate way of addressing the research questions. Interview transcripts were analysed using interpretative phenomenological analysis (IPA) (Smith, Jarman, & Osborn, 1999). IPA aims to explore the participant’s unique worldview, adopting an ‘insider’s perspective’ as far as possible (Conrad, 1987). IPA was chosen rather than alternative qualitative methodologies because of the concern with understanding the quality and texture of individual experience (Willig, 2001) and the fact that IPA has been deemed particularly useful for studying experiences of health and illness (Yardley, 1997). In addition, IPA, derived partly from the social constructionist tradition, fitted with the researcher’s own epistemological position. Social constructionist approaches have been criticised for not dealing with the issue of embodiment, however IPA recognises the primacy of the body both experientially and socially (Smith, Flowers, & Larkin, 2009). Much IPA research has focused on the body and is useful for exploring how an individual attempts to make sense of the embodied experience (Smith et al., 2009). As this research attempts to explore the way people make sense of changes in their partner, IPA was felt to be an ideal methodology.

Participants and recruitment Participants were 10 spouses with a partner having a suspected dementia condition, living in the Midlands, England. Six females and four males were interviewed. Seven participants were recruited through a local dementia support group and three participants from dementia care homes. Criteria for inclusion of a spouse included the presence of dementia in a partner. Given that only one third of people with dementia receive a formal diagnosis (Department of Health, 2009) this was not a prerequisite for spousal participation. The presence of dementia was indicated by the partners’ attendance at a dementia support group or through their residence in a dementia care home. Participants were at different stages in the caregiving journey, as there was a large variation in the length of time since their partners had received a diagnosis of dementia. The length of time as a caring partner ranged from two to eleven years. Display posters and information sheets were distributed inviting people to opt into the study by contacting the researcher. These information posters invited people to take part in a research project exploring the experience of having a partner who has been diagnosed with dementia or a suspected dementia. This enabled those people whose partners had not received a formal diagnosis to be included in the research.


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Data collection and materials Given the exploratory nature of the study, interviews were conducted with the aid of a semistructured interview schedule to ensure a discursive yet guided process. Eight interviews were conducted in participants’ own homes and two interviews took place in a private room of a residential care setting. Interviews lasted between 50 minutes and two hours and were taperecorded for transcription. Consent for participation and tape recording was sought at the outset of each interview. Interviews began with a short introduction indicating that the researcher was interested in their experiences of receiving a diagnosis of dementia and accessing relevant information.

Ethical issues Approval was sought and granted by the independent university ethics committee. To maintain confidentiality identifiable information was altered and participants were allocated pseudonyms. Participants were given additional time at the end of the interview for debriefing, as it is known that qualitative interviewing can produce a high level of disclosure, sometimes resulting in feelings of vulnerability and distress (Britten 1995). All participants were provided with signposting information for local support services.

Data analysis Following transcription, audio recordings of each interview were listened to by the analyst in order to check accuracy and review tone and intonation of interviewee accounts. Each transcript was read and reread slowly with initial thoughts recorded to capture first impressions of the text. In subsequent readings emergent themes were recorded, incorporating participants’ original words and the analyst’s interpretation. Memos of ideas and emergent themes at each stage were kept to record the development of the analysis (Coffey & Atkinson, 1996). Emergent themes were clustered into higher order concepts leading to the development of subthemes and superordinate themes. This process was repeated for subsequent transcripts. The reading of subsequent transcripts was undoubtedly influenced by the preceding cases, however a conscious effort was made to ‘bracket’ (Smith et al., 2009) these ideas and to allow new themes to emerge. Recurrent themes across cases were identified, including instances of convergence and divergence within a particular theme. Themes were compared across transcripts to produce a consolidated table of master themes relevant to all participants. Finally, the original transcripts were reread to ensure interpretations and themes were grounded in participants’ accounts (Collins & Nicolson, 2002).

Rigour The quality of the research was evaluated using Yardley’s (2000) criteria, namely: sensitivity to context, commitment and rigour, transparency and coherence and impact and importance. The research was evaluated against these criteria by exploring not only how these criteria were demonstrated but also the limitations to demonstrating these within the research. For example, efforts were made to demonstrate transparency and coherence by detailing each stage of the research process and by incorporating a reflexive account


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outlining the researcher’s own background and perspective. Transparency in the presentation of the analysis can be demonstrated by detailing each step of the data collection process and the steps to generate themes (Yardley, 2000). Furthermore, all information and documentation was stored at each stage of the research process to allow the researcher to check that a coherent argument runs from the initial raw data to the final report (Smith et al., 2009).1

Reflexivity Although the aim of IPA is to adopt an insider’s position (Conrad, 1987) it is acknowledged that this is never fully possible given that the researcher holds their own assumptions and preconceptions which influence the research process (Giorgi, 1986). Reflexivity is important given that IPA involves a double hermeneutic in which the researcher attempts to make sense of the participant, who in turn is making sense of their own experiences (Smith et al., 2009). This reflective account presents the researcher’s own position to help make transparent the co-construction of the account between participants and researcher (Finlay, 2002). The researcher’s position as a 26-year-old female with no personal experience of caring for a relative with dementia impacts on the interpretation of participants’ accounts and subsequent analysis presented. This lack of personal experience enabled the researcher to adopt a curious position when interviewing, however, as part of the hermeneutic cycle, the researcher’s beliefs and assumptions were inevitably altered through completion of the research. The position of the researcher as a trainee clinical psychologist is likely to have directed the research towards psychological aspects of caregiving, and as such, the analysis presented must be considered as one possible interpretation of the data collected.

Results Four major themes made up of 12 subthemes emerged from the analysis of caregivers’ experiences (see Table 1). The four major themes appeared to have strong relationships to each other. These relationships are represented diagrammatically in Figure 1. The centre of Figure 1 shows participants’ personal understandings of dementia. Several participants talked about initially viewing dementia as a memory problem and linked this to a lack of societal awareness and discussion of dementia. The negative stereotypes associated with dementia appeared to prevent discussion with family and friends, leading to increasing exclusion and isolation. Therefore, personal understandings are hypothesised to be related to societal understandings and persistent stigma. These processes appeared to occur in the context of a lack of continued support, leaving participants more reliant on personal and societal understandings. Some participants talked about actively seeking information and accessing informal support which appeared to facilitate an enriched understanding of the condition and promote adjustment. Certain manifestations of the condition (e.g. memory problems) appeared to be more expected than others within the participants’ personal understanding of dementia. Those manifestations which were unexpected appeared less likely to be attributed to dementia and more difficult to adjust to.


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Table 1. Themes generated from participant accounts Theme 1: Lack of information Subtheme 1: Kept in the dark. Subtheme 2: Individual preferences for information – ‘I don’t know whether it’s better to know a lot or not know anything’. Subtheme 3: Finding information yourself. Theme 2: Personal understanding Subtheme 1: Not understanding what dementia is – ‘I just thought Alzheimer’s was you forgot things’. Subtheme 2: Benefits of developing an understanding – ‘I can confidently understand it now, I couldn’t initially’. Subtheme 3: Adjusting to change and loss. Theme 3: Societal understanding and persistent stigma Subtheme 1: People don’t talk about it – ‘There’s a lot of us out there not talking about it’. Subtheme 2: Stigma – ‘He hasn’t got two heads’. Subtheme 3: Exclusion and isolation – ‘You become isolated, whether it’s by choice or design’. Theme 4: Lack of partnership working Subtheme 1: ‘Left alone to get on with it’. Subtheme 2: No services – ‘Diagnosed with a terminal illness and that it was, all the doors were completely shut’. Subtheme 3: Hopelessness from services and fighting for support.

Lack of information Ambivalence Actively seeking information

Society’s understanding: Lack of awareness Negative stereotypes

Diagnosis - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Seeking information Accessing informal support e.g.support groups

Enriched understanding. promoting adjustment

Personal Understanding: View of dementia as predominantly memory problems

Unexpected: Behavioural Psychological Physical

Expected: Memory problems

Less likely to be attributed to dementia, poorer adjustment to change

More likely to be attributed to dementia. More understandable, less surprising, promoting adjustment.

Isolation/ Exclusion

Figure 1. Results diagram.


Lack of continued support

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Lack of information The majority of participants described difficulty accessing information. Participant accounts gave a sense of carers living with the condition for many years in the absence of detailed information, both about dementia itself and available support. The lack of information appeared confusing and participants openly wondered why professionals had not been more forthcoming, wondering whether it was deliberate or accidental. Whether it’s withheld deliberately, I don’t know, or whether it’s withheld because they take it for granted it’s part of their job therefore they automatically [know] so they don’t tell you what it is because it’s everyday stuff to them. (John)

Participants described predominantly needing two types of information; that relating to typical manifestations of dementia; and practical information about available health, social and financial support. The need for information on the difficulties associated with dementia was expressed by a number of participants. Accounts alluded to a need for information in order to be prepared for unexpected changes or experiences. Simon refers back to the book he received ‘five years too late’ and indicates that this could have explained likely symptoms: If I’d have had that book, if they’d have given me that a few years earlier it would have helped that would . . . told you about her behaviour . . . everything, in the mirrors [hallucinations] and starting to get violent. (Simon)

Other interviewees described a lack of information regarding financial and practical support. The role of carer required organisation in dealing with the multiple agencies involved in dementia care. Susanne and John described the complexity of the system and the need for either a central point of information or someone experienced to help them to navigate the system. Participant accounts highlighted a sense of repetition whereby each carer embarked on their own journey of information-seeking with this journey repeated each time a family received a diagnosis: ‘My idea was to have that signpost available, a first port of call, rather than going in several different directions at the same time’ (John). Whilst the majority of participants expressed the desire for more information, the importance of considering individual preferences became apparent. Although the need for information was an important issue for many, the timing of information was also important. Some participants discussed the emotional weight of information and the difficulty of having to consider the future before they were ready. Some expressed ambivalence regarding the provision of detailed information and a sense of attempting to weigh up: ’Whether it’s better to know a lot or not know anything’ (Margaret). The majority of participants indicated the need for relevant information and the distress and fear that accompanies being kept in the dark. It’s [information] vitally important, the more you know it can only help, there’s nothing worse than that dark corner behind the door . . . far better to know it if you’ve got a problem because unless you know it you’re never going to find a solution. (George)

The necessity of considering individual preferences for information was highlighted as some participants discussed the difficulties of receiving information that they were not yet ready for. Accounts alluded to the need for information presented over time to meet the developing needs of the family and to avoid either leaving families in the dark or


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provoking distress. The importance of timing is apparent in Margaret’s account where uncertainty about the future allows her to continue caring for her husband and take each day at a time. The good Lord gives you a sort of protection while you’re doing all this caring because if you knew today what was going to happen tomorrow . . . you wouldn’t go there, you would have a nervous breakdown twice a day. (Margaret)

Margaret likens this lack of foresight to a ‘sort of protection’ and indicates the difficulty of caring were she to know what was on the horizon. Similarly, another participant described the negative emotional impact of hearing other people’s experiences of dementia: ‘I’d sit there reading things but I found it all a bit too depressing to be honest with you. . . you’re going through enough, what’s the point in reliving everyone else’s awful stories’ (Simon). In the absence of information from formal services, participants entered a phase of actively seeking information. Participants described a period of desperately searching for ‘a glimmer of information’ before finally finding it, usually from other carers, informal support groups or voluntary services. This prolonged search for information was distressing for participants, who articulated a need for information in the initial phase when attempting to make sense of the diagnosis. Participants’ accounts alluded to information being hidden or concealed, only to be revealed through persistent digging or ‘ferreting. . . and finding things out’ (Anne). Although information from other carers was experienced as a pivotal point in understanding and adjusting to a partner’s condition, participants articulated difficulties in relying solely on information from other carers. This information was a vital source of support but, at times, left participants unprepared for experiences that differed from those of other carers. A lot of people . . . they talk about, oh they have ups and downs and some days they’re worse than others . . . [wife] was never like that . . . it was always a downhill slope . . . which I thought was unusual compared with most of the people that talk about it. (James)

Personal understanding and implications for adjustment Many participants described their initial understanding of dementia and the gradual shift in understanding to incorporate behavioural or psychological manifestations and the progressive nature of the condition. There was a sense of dementia differing from expectations in terms of how this would affect their partner. From participants’ accounts it could be interpreted that certain aspects of the condition were more difficult to integrate into their understanding of dementia than others. Participants displayed surprise at aspects of their partners’ behaviour that were not anticipated from their existing understanding of dementia. Aggression appeared to be particularly difficult for some participants to integrate into their understanding of dementia: ‘I wasn’t expecting him to be so aggressive, that was frightening, very frightening and very upsetting’ (Anne). Accounts suggested that certain symptoms were more easily assimilated into participants’ existing frameworks of dementia than others. Like displays of aggression, some participants found behavioural issues difficult to understand and incorporate into their view of dementia. Difficulty in understanding varied manifestations of the condition appeared to represent an understanding of ‘Alzheimer’s’ and ‘dementia’ predominantly as forgetfulness, thus some participants were not anticipating physical, psychological or behavioural issues.


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Simon reflected on his previous beliefs about Alzheimer’s and considered the limitations of his initial understanding: You know I just thought Alzheimer’s was you forgot things and I remember thinking well when she gets to a point where she needs to go in a nursing home she can go and she won’t know us anyway . . . I’d got no idea, I’d got no idea at all. (Simon)

The understanding of Alzheimer’s as forgetfulness prevented participants considering the full impact of the condition on their, and their partners’, lives’: ‘I didn’t expect him to go off his legs or anything like that you know. . . I thought oh well if he doesn’t remember, it doesn’t really matter you know, we can just jog along’ (Kate). When their partner’s behaviour did not concord with their understanding of dementia, participants described trying to understand whether their behaviour was deliberate. Some participants considered their initial understanding of dementia and expressed regret at feelings of anger as a result of believing behaviour to be under their partner’s deliberate control. He’d wander through with his shirt on with one arm in the sleeve, maybe one sock on and his underpants on back to front and I’d say to him, ‘‘Are you trying to be funny with me?’’ . . . at first I didn’t realise that it was beyond him to do the right thing, I honestly didn’t. (Elizabeth)

Feelings of regret indicated a change in thinking about the nature of behavioural change and were related to the development of a new understanding of dementia. All participants described the diagnostic disclosure and, for many, this was important in facilitating a new understanding. Participants appeared to draw on medical information presented at diagnosis as well as the personal experiences of someone they had known previously with a dementia condition. Several participants remembered the diagnosis being presented in reference to the results of a brain scan and in precise medical terminology. Some used this medical explanation to make sense of the condition and the image of the scan appeared to be powerful, used by some to aid their understanding of the condition. He had a brain scan . . . it definitely was Alzheimer’s, you could see the shrinkage of the brain . . . I have this image now of that scan . . . and where the brain would have filled that whole space . . . and to me my understanding is that those little bits are shutting down. (Susanne)

For John, the diagnosis provided a framework for understanding all subsequent changes in his wife, indicated by the use of the word ’everything’ when he said, ‘I got a diagnosis and that diagnosis was Alzheimer’s dementia, so I just put everything down. . . to the dementia problem (John). For others the medical framework provided a helpful but incomplete framework for understanding the condition. This appeared to be associated with a lack of explanation of the condition and only limited time dedicated to elaborating on diagnostic information: ‘I know that part of the brain is dying, the memory part is dying, and I don’t really know what causes it. . . I may be completely barking up the wrong tree, it’s never been explained’ (Linda). Alternatively, some participants drew on previous experiences of dementia in friends or family to inform their understanding of the initial changes in their partner. Previous experience of dementia aided the development of understanding; however, as this was based on one individual’s experience, variation in experience was difficult to assimilate


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into this framework. Therefore, aspects not represented in prior experience were more difficult to understand and deal with, as highlighted by John: It [aggression] was new because although we’d seen [wife’s] mother deteriorate . . . she deteriorated gradually without aggression . . . I’d never experienced it and so that was something completely new: that was very very difficult to cope with. (John)

A strong theme emerged around the relationship between the carer being able to understand and make sense of behaviours and the emotional reactions of the carer. Understanding the relationship between dementia and behaviour change was important in reducing conflict within the relationship as well as feelings of impatience towards a partner. Some participants reflected on their previous feelings of anger as a result of being unable to make sense of behaviours. For Elizabeth, the development of an increased understanding allowed feelings of frustration to be directed towards the situation rather than her husband. In this sense an understanding allows the couple to unite more easily and direct negative feelings towards the condition or situation rather than the person: ‘The more understanding I had I never got cross again, I used to just get frustrated but that’s the after effects of continually soaking things in disinfectant’ (Elizabeth). This sentiment was echoed by other participants, who described a shift in thinking and a reflection on previous feelings of annoyance or impatience. The development of understanding facilitated a shift in beliefs about the causes of behaviour and had implications for interactions between caregiver and recipient. I understand that his brain doesn’t function properly, and if the brain isn’t getting the proper messages then he’s not going to be able to do things is he? And it’s no good getting impatient, I mean we all get impatient, I’ve been among the rest of them getting impatient. (Margaret)

The excerpt above indicates a change in Margaret’s emotional reactions to her husband, positioning feelings of impatience in the past and linking this change to an understanding that ‘his brain doesn’t function properly’. For the majority, understanding dementia (viewed as a medical illness) to be the cause of behaviour change had significant benefits in terms of caring for their partner. This allowed participants to attribute difficult behaviours to the dementia, rather than the person, helping to reduce conflict in the relationship. Indeed Susanne stated that ‘you can’t blame them’ indicating that: I can think of lots of things that I did and said which were totally wrong and inappropriate and I shouldn’t have done them, and I got really mad with him for behaving the way he did, you know then you realise that it wasn’t his fault, it’s all part of the illness. (Susanne)

Participants talked about the pervasive impact of dementia and the overwhelming influence this had on their lives. Susanne likened the caring role to a ‘full time job’ and the effects of dementia were described as ‘exhausting’ (Margaret) and ‘life destroying’ (Anne). Anne further described how ‘your whole life changes’ as a result of the condition. Participants discussed having to adjust to change and loss as a result of the condition, including changes in their partner, the relationship, financial circumstances and future plans. Participants described changes in their partner’s cognitive functioning, but also discussed adjustment to behavioural, physical and psychological changes. Participants highlighted the distress associated with extensive impact of dementia, described by Margaret, as ‘it’s awful to see a man being torn apart’. Certain changes were more difficult to adjust to than others and this related to whether the changes were anticipated


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as a consequence of dementia. Experiences of aggression and perceptual problems appeared particularly difficult for participants to accept and adjust to. Indeed Simon described his wife’s experience of ‘hallucinations’ as ‘a big shock’. Simon further indicated that his wife’s aggression was ‘surprising’ and linked the unexpected nature of this to difficulty adjusting or coping: The only thing that ever got surprising was when she started getting violent. That was the worst thing, everything else up to then you sort of just took in your stride, that was the worst thing. Couldn’t cope with that. (Simon)

Aspects of experience outside the participant’s understanding of dementia were more difficult to adjust to and assimilate into their existing framework of dementia. Therefore the understanding that participants had developed appeared important in promoting adjustment to change. Participants also discussed adjustment to loss, particularly in terms of the loss of their partner and the loss of their future plans together. A particularly emotive aspect of participant dialogue centred on the perceived loss of their partner; described as a partner being ‘different’ (Anne) to the person they married. Participants spoke about their partner changing, using phrases such as ‘he’s just a shell’ (Anne) and ‘he’s not the person that I married’ (Linda). Elizabeth articulated the difficulty in adjusting to this change: ‘I cannot adjust to it, it’s too hurtful to accept that he’s just not the same person at all anymore. So seldom do I get a glimpse of [husband] as I knew him, so seldom’ (Elizabeth). Discussion around the loss of a partner related to the participants’ perception of change in the ‘personality’ of their partner. Alongside behavioural issues, changes in their partner’s character or ‘personality’ appeared to be most distressing and difficult to adjust to: ’That this man had become like that was shocking, really shocking and I think that was one of the things that did get me down loads’ (Anne). Several participants described their partner’s character pre-diagnosis and highlighted the extent of change. This was difficult for participants to adjust to and was experienced as a painful loss. Furthermore accounts alluded to the additional strain of adjusting to the financial implications of caregiving and the impact on retirement plans, highlighting the need to adapt to changing financial circumstances.

Societal understanding and persistent stigma ‘Not talking about it’ (Linda), was a central feature of participant experiences. The lack of societal awareness of dementia was discussed and the subsequent implications for participants’ comfort in discussing their partners’ diagnosis with others. Furthermore, the lack of societal discussion appeared strongly linked to participants’ own difficulty in making sense of dementia. Participants suggested possible explanations for the lack of awareness of dementia in society. One participant indicated this to be a historical artefact of the fear and stigma associated with the condition: ‘If you go back to the old institutional approach. . . mental institutions in the 1940s were indescribable. It was an affront to civilisation, and I suppose it’s that association with past conditions’ (George). Elizabeth considered the role of public education in the lack of societal discussion and awareness of dementia, suggesting that dementia is not highlighted in the media in the same way as other conditions. Elizabeth described other health problems as ‘to the fore’, perhaps suggesting that dementia is left in the shadows,


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and went on to highlight the role of public information, indicating that people are ‘not educated to this sort of thing’. The lack of societal awareness of dementia left carers feeling unable to talk about their experiences, even with those closest to them. Some participants feared others would not understand the condition or that it would be outside their realm of experience. You couldn’t even talk to your relatives . . . my daughter didn’t know anything about it, my son didn’t know anything about it, so you couldn’t really discuss it with anybody because you didn’t know anybody that had any connection with dementia. (James)

Not talking to other people about dementia was strongly linked with perceptions of persistent societal stigma. Participants reflected on the stigma associated with dementia and the poor treatment of people with dementia historically, indeed Linda indicated that people with dementia were historically ‘shut away in lunatic asylums’. The relationship between stigma and the perception of dementia as a ‘severe mental illness’ (George) was discussed by several participants. Participants reflected on the responses of others to what they perceived to be a mental health problem. Participants themselves considered their own changing perspective on dementia and the shift towards perceiving dementia as an illness. Dementia is an illness . . . if they broke their leg . . . the world would be on your doorstep helping . . . but when there’s a mental illness, people . . . I think they blank out or they’re scared or they don’t know how to react and this doesn’t help people who’re caring or the people who are being cared for. (Margaret)

Margaret started by saying that ‘dementia is an illness’, perhaps indicating she believed that many people do not view dementia as an illness, and appeared to be considering why people respond differently to someone with dementia than with other health conditions. She linked this to the positioning of dementia within mental health services and the subsequent stigma attached to anything perceived as ‘mental illness’. Margaret indicated that others were ‘scared’ or ‘don’t know how to react’, leading to abandonment by others for many caregivers. Kate said, when her husband’s sister wouldn’t visit, that ‘she said it would upset her too much, I said he hasn’t got two heads he’s still the same and I said it upsets me every day but I couldn’t abandon him’. The issues of societal fear and stigma were closely connected to participants’ experiences of isolation or exclusion following their partner receiving a diagnosis of dementia. Participant accounts indicated a complex and emotionally distressing process of gradually becoming distanced from others. Despite this process resulting in feelings of isolation, this distancing was initiated both by carers and others. Participants described potential reasons for their increasing isolation including: feeling unable to talk about dementia; fearing others would not understand; withdrawing from social activities; fearing negative reactions; and abandonment by friends or relatives who felt uncertain about how to relate to the partner with the diagnosis. John considered these different ways that carers become isolated, indicating this to be a dual process initiated by both the carer and others: You become isolated, whether it’s by choice, by design or by exclusion. The exclusion may be friends and relatives who no longer know how to treat you both. You isolate yourselves because of the difficulties in behaviour in going anywhere. (John)


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Self-imposed isolation was echoed by other participants who expressed a fear of potential negative evaluation by others and a desire to protect a loved one from this: He used to go bowling and he’d go wandering off and I said to his friend don’t bother coming for him anymore, it’s not fair because . . . he’s spoiling your game, you have to go after him and things. (Kate)

Issues around societal fear, stigma and lack of understanding appeared to have a cyclical element. Accounts suggest that caregivers feel unable to discuss dementia because of limited societal awareness and social stigma, resulting in other people not hearing about dementia and thereby keeping dementia hidden in society. Furthermore, the lack of societal awareness and negative stereotypes associated with dementia appeared to lead some participants to isolate themselves for fear of negative reactions of others, further reducing the community presence of people with dementia. Participants also discussed the role of the media and the historical lack of focus on dementia when compared with other health conditions, such as cancer. Overall accounts alluded to a sense of hope and a feeling that societal attitudes were changing, partly in response to the prominent figures who have recently spoken out on the condition, including ‘Terry Pratchett’ (Anne) ‘Harold Wilson’ (George) and ‘Ronald Reagan’ (Kate). Linda said, ‘People didn’t talk about cancer at one time did they? And now they talk about cancer and I think people are talking more about this’.

Lack of partnership working Participants described feeling of being left to manage alone in the absence of any formal support. Participants described a lack of partnership in working with formal services and considered possible reasons for this. James and Elizabeth both articulated the danger of looking ‘capable’, indicating that their efforts to continue with life as normal were taken as a sign that they did not need any help: ‘If you were giving the impression you were capable you were rather left alone to get on with it’ (James). Accounts indicated that help and support was often not forthcoming until the situation reached crisis point. In addition to help not being offered, participants highlighted various barriers to asking for support. Feelings of responsibility for their partner’s care were discussed as well as a desire to maintain independence. I suppose if I’d been screaming my head off all the time saying how terrible it was they’d have probably done something, but I didn’t . . . my attitude was it’s my responsibility and it’s just part of the in sickness and in health. (James)

Participants’ accounts revealed a strong feeling that there are no services for people and families following a diagnosis of dementia. Accounts revealed distress at the lack of continued support and a feeling that no support was available once medication had ceased, indicating that medication provided temporary access to services: ‘She’s been diagnosed with a terminal illness and that was it, all the doors were completely shut, there was no help at all’ (Simon). A feeling emerged across accounts that participants believed there was nothing that services could offer and therefore there was no point asking for support. This sentiment was expressed by James who said, ‘I tend to think ‘‘what could they do?’’ Nothing, oh well I’ll try myself’. When participants did access services, they described a sense of hopelessness from professionals; described as professionals prematurely giving up on their loved one and


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displaying a degree of apathy in relation to their care. This hopelessness was apparent to some participants from the point of diagnostic disclosure: He gave him some tests and he said . . . ‘I think he’s starting with Alzheimer’s’, but there’s no treatment . . . there is a tablet but it’s not a cure, it just slows it down . . .and you can’t have it on the National Health, so you’ll have to pay private. (Kate) He [doctor] was so rude to her and he said,’ the only hope you’ve got is Aricept’ and there was no funding for Aricept he says but you’ve got no chance . . . her only hope is Aricept but she’s away with the fairies. (Simon)

Simon recalls medication being described as their ‘only hope’, indicating that the doctor did not feel that other treatment or support options were available. Throughout participants’ accounts the importance of hope was apparent, both in terms of hoping for future service improvements and maintaining hope for their loved one. George summed up the importance of hope in the caregiving journey, highlighting the role of services in not destroying feelings of hope: It’s a depressive illness, it destroys virtually the cornerstone of life, of living really if they allow it to and of course the biggest thing is hope, and if you destroy the hope there’s nothing else but gloom and despair. (George)

Perhaps in response to hopelessness from services, participants discussed the need to be proactive and protective to secure support for their partner. The use of the terms such as ‘fight’ (Simon) and ‘fought’ (Susanne) suggests interactions with services to be perceived as a battle rather than a joint endeavour: ‘Everything we did was a fight honestly, nothing was easy’ (Simon). Susanne and Anne expressed a belief that people with dementia need a relative in a position to advocate their needs in order to receive appropriate support: ‘I think [husband has] been better off because they know they can’t play about with me but what about all these people who haven’t got anybody?’ (Anne). Anne’s use of the phrase ‘they can’t play about with me’ suggests that services are not always willing to provide support and may avoid doing so without pressure from families. Participants expressed relief at the point that they finally found a source of support, usually obtained through voluntary agencies or support groups. Often participants expressed relief at finding others to talk to about dementia who understood or shared their experiences.

Discussion Four major themes emerged from the analysis relating to the relationship between developing an understanding of dementia through information and support, and implications for adjustment to change. Findings indicate that participants were unprepared for the pervasive impact of dementia, even after receiving a formal diagnosis that employed precise terminology (e.g. Alzheimer’s disease). The analysis revealed that participants were unprepared for the progressive nature of the condition, as well as behavioural, psychological and physical manifestations. As in previous research, findings revealed a lack of understanding of the diversity of problems (Quinn et al., 2008) and prognosis associated with dementia (Aminzadeh, Byszewski, Molnar, & Eisner, 2007; Aggarwal et al., 2003; Paton et al., 2004; Robinson et al., 2009). Feeling unprepared was linked to a lack of forewarning in the form of detailed information or explanation, resulting in a lack of understanding of the varied challenges associated with dementia.


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Feeling unprepared for changes appeared to be linked to participants’ initial understanding of dementia as a memory problem, consequently the findings suggest that behavioural, physical and psychological changes were not anticipated. Adjustment to change appeared to vary depending on whether the change was anticipated as a consequence of dementia. Changes that were unexpected appeared difficult to adjust to and surprising and distressing, while changes more readily attributed to dementia proved easier for participants to adjust to and less distressing. Indeed previous research has shown behavioural and psychological changes to be particularly difficult for caregivers to cope with (Paton et al., 2004). Distress appeared to be linked to difficulty in understanding and making sense of the causes of a partner’s presentation. As suggested by previous research (Robinson et al., 2005) partners with a fuller understanding of the diagnosis appeared to find it easier to make sense of, and adjust to, changes in their partner. Therefore, as in previous research (Commissaris, Jolles, Verhey, & Kok, 1995; Moniz-Cook, Agar, Gibson, Win, & Wang, 1998), the benefits on subsequent adjustment of receiving information and developing an understanding were apparent. In the absence of detailed information or continued support, participants were reliant on existing knowledge about dementia and advice from other carers to make sense of changes. Analysis suggested that participants were attempting to understand whether observed changes were attributable to the condition, the person themselves, or another cause. Difficulty understanding behaviour change is unsurprising given that caregivers often do not attribute behaviours to dementia, even when aware of the diagnosis (Paton et al., 2004). Instead caregivers often believe behaviours to be under the person’s deliberate control (Paton et al., 2004) rather than viewing behavioural challenges as a consequence of the frustrations and fears emanating from deteriorating capacity to remember, communicate, perceive and reason. Difficulty attributing certain aspects (e.g. aggression) to dementia raises the importance of considering attribution theory in relation to dementia caregivers. Attribution theory aims to understand how people explain behaviour (Hogg & Vaughan, 1998) and whether the causes of behaviour are perceived to lie within the person, the situation or a combination of both. When causes of behaviour are perceived to be beyond the individual’s control, people are more likely to provide assistance (Weiner, 1980). As found in previous research (Quinn et al., 2008) attribution of the problematic behaviour to the person, rather than the dementia, had implications for caregiver responses and wellbeing. Understanding and attributing problematic behaviour to dementia was linked to a reduction in feelings of impatience and conflict in the relationship, echoing the finding that attributions can affect carers’ emotional and behavioural reactions towards the care recipient (Emerson, Hastings, & McGill, 1994). In line with previous research, having the diagnosis and an increased understanding of the condition allowed carers to review their responses (Vernooij-Dassen, Derksen, Scheltens, & Moniz-Cook, 2006) and develop a patient and understanding approach to caregiving (Connell et al., 2004). Furthermore, findings revealed a long search for information often culminating in participants finding that continued support services were largely absent. Participants talked about the paradox of their partner being diagnosed with a terminal condition and then discharged. Findings indicate that the lack of continued support left partners to manage alone, contributing to difficulty understanding and adjusting to changes that did not fit with the participants’ understanding of the condition. This finding supports previous research suggesting that people may need several meetings with professionals to discuss the


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implications of the diagnosis over time (Robinson et al., 2005) and to help families understand and adjust to change. Moreover, in support of previous research, caring partners highlighted the need for opportunities to speak privately with health professionals during the diagnostic process (Lecouturier et al., 2008; Earl-Gray & Smyth, 2006; Bamford, Hughes, & Robinson, 2007). This may have bi-directional implications for information sharing, as caring partners described feeling unable to speak openly with professionals for fear of upsetting their partner, thus limiting opportunities to share concerns or ask questions. The analysis suggested that participants also experienced a sense of hopelessness from services regarding the possibilities for positive intervention, treatment or support. The sense of hopelessness and lack of ongoing support contributed to feelings of isolation in caregivers, as the reactions of services appeared to reflect experiences of exclusion and abandonment in wider society. Caring partners described a process of becoming distanced from others, alluding to the possibility that a diagnosis of dementia removes not only the person with the diagnosis (Husband, 1999), but also the caring partner, to a stigmatised social group. This distancing was bi-directional as participants also described self-exclusion, perhaps indicating that negative stereotypes lead not only people with dementia (Clare, 2002), but also their partners, to withdraw from others. Fear of negative evaluation appeared to keep dementia hidden by preventing caregivers from discussing the condition, or accessing the usual social activities, contributing to both a lack of societal awareness of the condition and a lack of community presence of people with dementia. In the absence of detailed information or involvement from services, participants were more reliant on societal understandings of dementia which are largely deficient and prejudicial. Participants linked their initial difficulty in understanding to the lack of societal discourse surrounding the condition. For some, dementia was something that they had not heard about while others discussed the negative stereotypes associated with dementia. Negative stereotypes appeared to be a historical artefact of a long association between mental health, dementia and institutional care. Consequently, fear and stigma appear to keep dementia as a hidden condition that people feel unable to talk about. This has implications for caregivers who have heard little about the condition when first entering a caring role and feel unable to discuss their experiences with existing support networks, creating a cycle whereby dementia remains hidden in society.

Limitations In considering the findings it is important to take into account the limitations of the present research. Almost all participants’ partners had accessed specialist services at the time of diagnosis, however, it is known that the majority of people do not receive specialist assessment or care at any stage in their condition (Banerjee et al., 2007). It can therefore be hypothesised that participants recruited to the study had developed a greater degree of knowledge through their involvement with specialist services, raising the possibility that findings represent the best case scenario. Future researchers may, however, wish to recruit caregivers of those who have not accessed specialist services or received a formal diagnosis, as this is likely to have implications for the caregivers’ understanding of the condition and subsequent adjustment. The analysis presented is one interpretation of the data by a single young professional engaged in a clinical psychology training programme at the time of


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the research. The influence of the researcher’s psychological focus is apparent in the analysis, in terms of emergent themes, connections made between themes and the focus on their relationship to subsequent adjustment to change. The clustering of emergent themes is a subjective process influenced by existing knowledge, beliefs and attitudes. It is therefore important to consider that the analysis presents only one possible interpretation of the data collected. The present analysis would have been enhanced by requesting an independent audit from an external researcher to check the credibility of the analysis, given the data collected (Smith et al., 2009). Given that constructivist paradigms do not search for a single ‘truth’, an independent audit would not verify the interpretation offered, but would assess the coherence of the analysis as one possible account.

Conclusions and clinical implications The findings highlight the importance of gaining an understanding of a condition, when entering a caring role, to reduce uncertainty, distress and negative emotional responses towards the person with dementia. The present research points to the importance of caregiver attributions when responding to a care recipient. This has implications when considering training for health and social care staff involved with the caregiver in terms of discussing with staff the importance of attributions in caregiver-recipient dyads. Further research and staff training regarding the role of attributions may encourage health and social care staff to consider the importance of attributions and the value of helping caregivers to view behavioural and psychological changes as a consequence of the condition. This research emphasises the importance of providing detailed information regarding diagnosis and prognosis with an emphasis on behavioural and psychological manifestations of the condition. Importantly, descriptions of disclosure meetings indicate that professionals largely used precise terminology, rather than euphemistic terms, to convey the diagnosis. Despite this, caring partners often reported feeling unprepared for difficulties other than cognitive impairment. This finding has implications for disclosing a diagnosis, highlighting the need for greater discussion regarding the possible prognosis and varied manifestations of the condition. Information on the challenging and distressed behaviours associated with dementia may help to alleviate uncertainty regarding causes of behaviour, promote adjustment to change and reduce distress associated with managing in the absence of information. The research highlights the need for continued support, both in the form of a professional to act as a point of contact to provide information, support and facilitate understanding of the condition, and also on-going practical support to help caring partners deal with the demands of the role. Partnership working between professionals and caring partners may help to facilitate adjustment to change and alleviate feelings of isolation associated with managing alone. Services have an important role in facilitating adjustment by providing detailed information to enable caring partners to develop an enriched understanding of dementia which incorporates likely manifestations other than memory problems. Moreover the findings highlight the need for increased public education both to deal with the widespread misconception that dementia uniquely affects memory and to help reduce the persistent stigma associated with the condition.


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Funding This research received no specific grant from any funding agency in the public, commercial, or notfor-profit sectors.

Conflicts of interest statement This research was completed in partial fulfilment of the Doctorate in Clinical Psychology Training Programme for Staffordshire and Keele Universities.

Note 1. For interested readers, a full copy of the evaluation of the research using Yardley s (2000) criteria is available on request.

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Laura Stokes is a Clinical Psychologist in North Staffordshire Combined Healthcare Trust, Stoke-on-Trent, UK. Helen Combes is a Clinical Psychologist and Principal Clinical Lecturer in the Faculty of Sciences, Staffordshire University, Stoke-on-Trent, UK. Graham Stokes is a Clinical Psychologist and Director of Dementia Care Services, BUPA.


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