Diagnosis disclosure in dementia: Understanding the experiences of clinicians and patients who have recently given or received a diagnosis

Abstract

Diagnosis disclosure in dementia is a complex area that results in positive and negative outcomes for both clinicians and patients. Eight clinicians and seven patients were interviewed about their recent experience of either giving or receiving a diagnosis of dementia. Interview transcripts were analysed using interpretative phenomenological analysis. The analysis revealed two higher order themes: Hiding from the Truth and The Social Environment: Help or Hindrance? Both clinicians and patients experience avoidance in relation to the diagnosis. The results support a psychosocial model of dementia and highlight the need for flexible follow up interventions that both recognise patients’ use of avoidance and denial as coping strategies and facilitate social support. The social environment can also assist and hamper clinicians’ efforts to help their patients. Future research is needed to elucidate optimal conditions for facilitating patients’ uptake of positive coping strategies.

Keywords

clinicians dementia diagnosis disclosure patients interpretative phenomenological analysis

Introduction

It is estimated that over 800,000 people in the UK have dementia at a national cost of £23 billion per year (Alzheimer’s Society, 2012). Dementia poses significant challenges to society not least in that approximately half of people with dementia in the UK do not have a formal diagnosis (Department of Health, 2013). The Prime Minister’s Challenge on Dementia (Department of Health, 2012) emphasised the need for early diagnosis to ensure that people with dementia and their carers can access appropriate treatment and support. However, plans for regular memory screening of the over-65 s have been met with criticism (Brunet et al., 2012) and there is considerable debate over the ethical soundness of mandating early diagnosis where little or no benefit can be derived (Nuffield Council on Bioethics, 2009).

Literature review

Diagnosing dementia is a complex area of clinical practice where substantial variability in professional attitudes and practice has previously been highlighted (Bamford et al., 2004). In recent years, there has been a move towards a focus on how rather than when a diagnosis of dementia should be disclosed. Lecouturier et al. (2008) have identified three key best practice behaviours: finding out what the patient already knows about their diagnosis; the use of explicit terminology in front of the patient; and exploring what the diagnosis means to the patient.

Despite a general consensus between clinicians, patients and carers on which behaviours are important in relation to diagnosis disclosure, areas have been identified where there is a clear mismatch between patient need and clinical practice (Lecouturier et al., 2008). For example, people with dementia have varying levels of understanding of their diagnosis following disclosure highlighting the need for clinicians to check and facilitate individual understanding of the diagnosis and its implications. However, observations of diagnostic meetings have revealed clinicians’ use of a variety of techniques to veil the diagnosis and avoid detailed discussion when this is believed to be in the best interests of the patient (Karnieli-Miller, Werner, Aharon-Peretz, & Eidelman, 2007). This highlights the conflict that clinicians face in balancing their professional responsibility to disclose the diagnosis with delivering patient-led care tailored to individual need.

Research to date also reveals a complex picture from the perspectives of people with dementia with considerable variability in views on when and how a diagnosis should be disclosed. There is evidence that the majority of people with dementia wish to know the cause of their difficulties (Robinson et al., 2011). However, Elson (2006) found that fewer people expressed a wish to know the specific diagnosis than more general explanations of cognitive impairment. Furthermore, people with dementia believe they should have a choice in whether or not they are informed of the diagnosis (Harman & Clare, 2006).

It has been argued that many of the difficulties faced by people with dementia are a result of social and psychological factors rather than cognitive decline (Kitwood, 1990). Being diagnosed with dementia places the individual in a highly stigmatised social group that increases the likelihood of maladaptive coping strategies such as emotional distress and denial (Aminzadeh et al., 2007). This is supported by the finding that people with dementia avoid telling others for fear of stigmatisation (De Boer et al., 2007) and a recent report by the Alzheimer’s Society (2009) which revealed that high levels of social stigma act as a barrier to help-seeking and support.

Research focussing on the views of people with dementia has led to an increasing shift towards a psychosocial model of dementia that recognises that an individual’s experience of their diagnosis is influenced by the social context in which they operate. Pratt and Wilkinson (2003) propose that the interaction of an individual’s social context with their ability/desire to know their diagnosis can have a profound influence on their experience of dementia leading to engagement with maximising coping strategies or detachment, denial and distress. This is highly relevant for clinicians as they play an important role in the social context of their patients and therefore in their experience of dementia.

As the needs of service users and providers often simultaneously encompass a range of similarities and distinctions (Larkin & Thompson, 2012), it is important to explore the phenomenon of diagnosis disclosure from the perspectives of the clinicians and patients involved. Exploring these interrelated perspectives has the potential to uncover why mismatches between patient need and clinical practice occur. The aim of this study is to explore the lived experience of individuals who have recently given or recently received a diagnosis of dementia to further our understanding of this often complex process and how it can be improved for those involved.

Method

This study was granted ethical approval by the local NHS Research Ethics Committee. Informed consent was provided by all participants. All personally identifiable information has been removed in the reporting of the results and pseudonyms have been used to protect anonymity.

Fifteen participants (seven patients and eight clinicians) were recruited through mental health services for older people within an NHS Foundation Trust in England, using a purposive sampling method. All clinicians working within a dementia service in the Trust were sent information about the study. Eight clinicians expressed an interest in taking part and were subsequently recruited to the study. Three of these clinicians approached patients that they had recently diagnosed who also agreed to take part. A further four patients were recruited by clinicians who did not want to take part in the study themselves but were happy to approach eligible patients on behalf of the research team.

Upon entering a memory service, patients followed the Trust’s dementia pathway. This involves an assessment with a nurse practitioner and includes a preliminary physical screening and completion of the Addenbrooke’s Cognitive Examination – Revised (ACE-R; Mioshi et al., 2006). In addition the patient and their carer or family member will meet with a psychiatrist to continue the assessment. The patient is referred for a CT scan if necessary. A referral may also be made to a psychologist for neuropsychological assessment in cases where there are discrepancies in the initial assessment results. The assessment process includes pre-diagnostic counselling with the aim of preparing the patient and carer for the assessment outcome. Depending on the individual’s assessment pathway the diagnosis may be disclosed by the nurse practitioner, psychiatrist or psychologist. Following disclosure of the diagnosis the nurse practitioner meets with the patient and their carer regularly to support them. In situations where the patient, their carer or family struggle with the outcome of the assessment process, further intervention is available with a psychologist to facilitate adjustment to living with a diagnosis.

Patients were aged 65 or over, had received a diagnosis of dementia in the preceding six month period and were in the mild to moderate symptom range as characterised by a score of 21 or above on the Mini Mental State Examination. Patients were excluded on the basis of comorbid progressive physical illness or severe psychological disorder. Patients had a mean age of 78 years. The clinicians who took part represented multidisciplinary professions and had disclosed a diagnosis of dementia within the preceding six month period. All participants spoke fluent English. Participant demographic details are presented in Tables 1 and 2.

Table 1.

Demographic details of clinicians.

Clinician	Profession	Gender	Involved in diagnosing patients in this study?
Harry	Psychiatrist	Male	No
Robert	Clinical Psychologist	Male	No
David	Clinical Psychologist	Male	Yes – Frank
Rebecca	Speciality Doctor	Female	Yes – Frank
Kim	Clinical Psychologist	Female	No
Sally	Advanced Nurse Practitioner	Female	Yes – Emma
Sandra	Advanced Nurse Practitioner	Female	No
Reshma	Psychiatrist	Female	No

Table 2.

Demographic details of patients.

Patient	Age	Gender	Diagnosis
Anthea	76	Female	Alzheimer’s disease
Bob	82	Male	Vascular or frontotemporal dementia
Caroline	82	Female	Alzheimer’s disease
Doris	84	Female	Alzheimer’s disease
Emma	69	Female	Alzheimer’s disease
Frank	73	Male	Alzheimer’s disease
Ged	80	Male	Alzheimer’s disease

Participants attended a one to one interview lasting 60 to 90 minutes. Interviews followed a semi-structured interview schedule relating to the process of either giving or receiving a diagnosis of dementia. The interview schedule for patients focussed on: experiences leading up to the diagnosis; experiences relating directly to the disclosure of the diagnosis; and the wider impact of the diagnosis following the initial disclosure. Clinicians were asked about their general experience of working with older adults, experiences of giving a diagnosis and opportunities to improve the process of diagnosis disclosure. The interview questions were carefully designed to be as neutral as possible. All interviews were audio recorded and transcribed verbatim.

Transcripts were analysed using Interpretative Phenomenological Analysis (IPA; Smith, Flowers, & Larkin, 2009) to explore the subjective meaning associated with participants’ experiences of either giving or receiving a diagnosis of dementia. Each transcript was initially read and re-read with emerging themes noted in the margin. The next stage involved searching for associations across emergent themes to develop a structure of superordinate themes that captured the essence of the individual’s account of their experience. This process was repeated for each individual transcript before searching for connections across participant accounts to develop a set of group themes and associated sub-themes. The process thus far was carried out first for the clinician transcripts and then for the patient transcripts. Finally, clinician and patient results were compared to identify higher order themes relevant to both sets of participant accounts.

Several measures were taken to ensure the trustworthiness of the analysis. Member checks were carried out with a subsample of participants by asking them to review the themes that emerged from their individual transcripts to ensure they were a true reflection of their experience. Secondly, the researchers engaged in a process of data triangulation in which two members of the research team (a clinical psychologist with expertise in dementia and a counselling psychologist with expertise in the chosen methodology) evaluated the credibility of the interpretations made by the principal investigator. The clinical psychologist independently analysed two participant transcripts, the results of which were compared with the analysis carried out by the principal investigator. Once the group themes had initially been developed, further discussions regarding emerging themes, superordinate themes and group themes took place until a consensus list of final themes was reached. This process has allowed for an accessible audit trail of the data from individual transcripts to higher order group themes to be maintained as recommended by Yin (1989).

Results

The analysis revealed two higher order themes which are presented in Table 3.

Table 3.

Group themes and subthemes.

	Clinicians	Patients
Higher order theme	Hiding from the truth
Sub-themes	Patients’ use of denial and avoidance Not explicitly labelling the diagnosis	Coping through denial and avoidance
Higher order theme	The social environment: help or hindrance?
Sub-themes	Working with the team to support the patient Issues created by the wider system	Support from others Negative social context

Hiding from the truth

Overall there was a high degree of overlap between patients’ accounts of their reactions to receiving a diagnosis and clinicians’ accounts of the reactions of their patients. Reactions described by both clinicians and patients included shock, fear and acceptance. However, the most common reactions according to participants are denial and avoidance. Patients use denial and avoidance throughout the diagnostic process and following their diagnosis as part of a grieving process and as a coping strategy to manage loss of sense of self and anxieties about the future. The analysis also revealed a parallel process of avoidance in clinicians, specifically in relation to using explicit terminology to label the diagnosis. According to clinicians this avoidance may be linked to uncertainty regarding the diagnosis, a desire to minimise patients’ distress and respect for the patient’s wish not to know the diagnosis. Avoidance is also apparent at an organisational level with reports of systemic failures to label the diagnosis which may lead to feelings of anger and frustration and limit opportunities for intervention.

According to clinicians, denial and avoidance are frequently used by patients in relation to the diagnostic process:

It’s like a terminal illness, and if you start grieving, the first stage of grief is denial, so denial is very common (Reshma, Psychiatrist)

A lot of people will try and avoid getting the diagnosis (Rebecca, Speciality Doctor)

Denial and avoidance were also the most common coping strategies evident in patients’ accounts. For some there was a conscious awareness of their use of denial:

I’ve just thought “Oh they’re probably wrong.” Yeah, sort of in denial (Anthea, Dementia Patient)

While for others, active use of denial was apparent during the research interview:

I forget things but I mean everybody does don’t they? (Bob, Dementia Patient)

Reshma refers to a process of grieving in relation to the diagnosis. Differences in patients’ awareness of their use of denial may be a reflection of their current stage of grieving. This is supported by a participant who reflects on how acceptance of her diagnosis is a gradual process and how she frequently reverts back to using denial as a coping mechanism:

At the back of me mind I all the time, always thinking “They could be wrong. It’s only cos I’m tired.” And I know I’ve got to get out of that sort of thinking. So I’m gradually getting to accept it, but it’s hard (Anthea, Dementia Patient)

Another participant demonstrates her use of avoidance in relation to the information she received about dementia at the disclosure meeting:

In a few weeks I will get around to reading them but I sort of crawl up on that. But you see I don’t feel that I’ve changed. But my mind has obviously but it just doesn’t feel, I mean everything, I just feel fine (Emma, Dementia Patient)

This suggests that a function of her use of avoidance is to preserve her sense of self and that reading the information about dementia and acknowledging her diagnosis may pose a threat to her identity. For another participant, his use of denial manifests itself in an expression of false hope that his condition will not progress:

What I hope my future will be is to get no worse than I am. To be fair for the last 6 months it’s been on a level playing field. If it stays at that level I’ll be quite happy but I don’t want to be sat in a chair, slathering, you know like some poor old people have to do, and being neglected by care workers (Frank, Dementia Patient)

Frank’s stark reference to old people left to a fate of slathering and neglect suggests that his use of denial is a defence against the anxiety and fear provoked by what his future may hold.

Interviews with clinicians also reveal that they experience a parallel response of avoidance in relation to labelling the diagnosis in front of the patient. Some clinicians believe it is preferable to try to sensitise the patient to the diagnosis in order to minimise the potential impact:

Rather than just hitting someone with, with the news, completely out of the blue, it’s better to kind of fire a warning shot (Robert, Clinical Psychologist)

I don’t go straight in and say “You’ve got dementia.” I ask them “So what do you think is going on?” Then ask “Anybody in the family with dementia?” Then it’s “No! No!” Then you say, Oh God, just go more slowly (Harry, Psychiatrist)

One can see Harry’s attempts to prepare the patient for the diagnosis, first by seeking current expectations and then by introducing the possibility of dementia by checking any family history of the illness. The patient’s response indicates their lack of preparedness for the diagnosis and he recognises the need to lay further groundwork to minimise the shock felt by the patient.

These clinicians demonstrate that one reason for their reticence in labelling the diagnosis is concern about causing and attempts to minimise the emotional distress felt by patients. This is further supported by two clinicians who were both involved in the assessment and diagnosis of another participant, Frank.

The word ‘dementia’ and ‘Alzheimer’s’ is so powerful, you know, for that client it was kind of like ‘oh gosh, my worst fears have come true’ (David, Clinical Psychologist)

If you do that to somebody, if you land that name on them and they weren’t expecting it, they’re frightened by it. It’s then difficult to get back to what you can do (Rebecca, Speciality Doctor)

David’s comment further supports the assertion that Frank’s use of avoidance is linked to his fears about the future. While Rebecca shows how she feels responsible for the potential distress caused by labelling the diagnosis too early and recognises that this can impede her ability to address positive aspects of diagnosis such as accessing treatment and support.

With the assessment of dementia often involving a complex synthesis of information and a process of elimination, one reason that clinicians avoid using explicit terminology in relation to the diagnosis is uncertainty. A cautious approach to labelling the diagnosis may be prudent as uncertainty creates the very real potential for misdiagnosis and iatrogenic complications. As these clinicians note, misdiagnosis can have serious consequences for patients:

I wouldn’t want to give them a diagnosis that wasn’t right … I have come across that a couple of times and sometimes it has difficult, very difficult effects for that person (Kim, Clinical Psychologist)

Dementia is very difficult to tell just from the scan. If it’s just a Lewy body dementia it doesn’t show on a CT scan and this would be the main area where that arises … the results of treating Lewy body dementia with the wrong drugs can be quite disastrous for the patient (Rebecca, Speciality Doctor)

Uncertainty around the diagnosis sometimes has to be conveyed to the patient, creating an unusual dynamic for those involved when one considers patients’ perceptions of clinicians may often be as “experts”. Some clinicians reflected on their experience of acknowledging the limits of their understanding of the patient’s difficulties:

It’s sometimes the case we meet with them and say ‘Well, this is what we think. This is what it looks like but (pause) we’re going to have to wait and see.’ You know, we’ll do the tests again in a year’s time (Robert, Clinical Psychologist)

It was quite frustrating that I can’t exactly tell you exactly what it is but I can tell you this is the reason why we think its Alzheimer’s. However, this is why it might progress into something different and I think that honesty of saying we are going to treat as if it is, however, in a year’s time we might need to speak to you about diagnosis changing (Sandra, Advanced Nurse Practitioner)

In the first example the psychologist has given a diagnosis of mild cognitive impairment but suspects that the patient’s difficulties will progress into Alzheimer’s disease. In the second, the nurse practitioner cannot rule out Lewy body dementia as a potential diagnosis. These extracts demonstrate how the two clinicians manage the uncertainty of the diagnosis in different ways; one by postponing further intervention and reassessing in a year’s time, and the other by treating the patient on the basis that it is Alzheimer’s and revisiting the diagnosis at a later date.

In addition to uncertainty and the potential to cause emotional distress, clinicians may avoid labelling the diagnosis out of respect for the patient’s wishes:

I would ask the patient and if they are saying they don’t want to know, I would ask the patient if they want their relative to know what is going on (Sally, Advanced Nurse Practitioner)

I ask people explicitly would they want to know if it’s a dementia. If the person says “No.

I don’t want to know if I’ve got dementia.” Then the next question is “If you do have dementia there are things we can do to help, would you want to access them?” And people have said yes. So, it’s a bit, it’s almost like a bit of a hidden secret isn’t it? (Kim, Clinical Psychologist)

This clinician highlights the somewhat paradoxical response of her patient. Ultimately she is led by the individual’s wishes, simultaneously maintaining their rights not to know the diagnosis and to access appropriate treatment.

In addition to individual cases of not labelling the diagnosis, two clinicians made specific reference to their experience of a systemic failure to label the diagnosis in the early stages of dementia:

If they’ve been in the service for a long time … sometimes that can make it difficult when there is something there and they’re right to have kept pushing and pushing and pushing for something to be done. Because in the diagnostic session in that they’re often quite rightly angry that why’s this taken so long? (Kim, Clinical Psychologist)

Kim emphasises the struggle that one of her patients has been through to get a diagnosis and how this creates conflict in the diagnostic meeting when the patient is finally given a diagnosis. Reshma also describes how she is left to deal with the aftermath of another clinician’s failure to disclose the diagnosis:

It is at times quite tricky in a sense erm, especially when you have to clear somebody else’s mess. He’s been on records that he’s been diagnosed three years ago and it’s sometimes quite sad that family haven’t been sat down and explained everything. So that part is very frustrating, that they could have done something. They could have understood about it. They could have read about it. They couldn’t have struggled so much (Reshma, Psychiatrist)

She conveys her frustration that nobody has taken the time to explain the diagnosis to the family concerned. She is now left with this task but there is a sense of her efforts being too little too late, as the family have already suffered as a result of the withholding of the diagnosis.

The social environment: Help or hindrance?

The second higher order theme that emerged is the role of the social environment in participants’ lived experience of giving or receiving a diagnosis of dementia. The social environment is a powerful influence that contributes to both positive and negative aspects of experience. For clinicians the social environment includes patients, multi-disciplinary colleagues and the wider service context in which they work. Positive influences of their social environment include facilitating support for patients, reducing the uncertainty associated with the diagnostic process and help managing the emotional challenges of diagnosis disclosure. Resource constraints and inconsistencies in service provision are negative influences created by the wider service context.

For patients, their social environment provides both a vital channel of support and contributes to distress and the use of maladaptive coping strategies such as avoidance and social isolation. This dichotomy is reflected within the context of the marital relationship and in their wider social environment which includes family, friends and healthcare professionals including the clinicians who disclosed the diagnosis.

All of the patients interviewed reflected in some way on the support they receive from others. One participant reflected on the support she receives from her husband:

He’s brilliant. Anything I want, anything I need or anything that needs doing, he does it (Emma, Dementia Patient)

Some participants expanded on the practical nature of the support they receive:

I have the other mother-in-law. She comes, well her husband comes, brings me. We have a walk and go for lunch at the pub. I think I’m jolly lucky really (Caroline, Dementia Patient)

Caroline was living alone in supported accommodation and recognised how her wider family network enabled her to continue to engage with activities that she enjoyed, particularly as she had to give up the use of her car. Another patient had no immediate family and so relied on neighbours and social services staff for support:

The carer in the morning comes in to see if I’m getting my breakfast, makes my bed, runs a bath … she checks on my tablets, she goes to the doctor with the box and gets it filled up for me. I have good neighbours. One’s gone shopping this morning. And the one over the way comes in most days, every day I think, and gets me milk and things like that (Doris, Dementia Patient)

These extracts demonstrate the importance of the participants’ social network in enabling them to live independently and access positive coping strategies. Without this practical help from others it is likely that they would be much more limited in terms of their independence and quality of life.

Another participant reflected on his positive experience of the staff he met during the assessment and diagnostic process:

They seemed to be very very sympathetic. And I say all the people I met there I thought they were lovely people. And nice in the sense that they cared and they knew. What they didn’t know they were prepared to find out. And I felt that they were trying to help me as well and that was tremendous (Ged, Dementia Patient)

For Ged, the supportive approach of the staff helped to put him at ease and to engage with the assessment process.

It is clear that for a person with dementia their social support network can have a positive impact in terms of how supported they feel, their ability to continue to live independently and to engage with pleasurable activities. Conversely, difficulties adjusting within the marital relationship, perceptions of inadequate support from healthcare professionals and social stigma may cause further distress and promote the use of maladaptive coping strategies.

Some patients reflected on their experience of their spouses’ frustrations in relation to their memory difficulties:

It’s made it more difficult for my wife because she has to stop and check up on me. The short-term thing is the irritating factor for me and for my wife as well (Frank, Dementia Patient)

Mary says it’s because I don’t listen properly. She looks at me as though she’s thinking “Just shake yourself!” (Ged, Dementia Patient)

Another patient reflected on how her experience of the clinicians involved in disclosing her diagnosis contributed to her anxiety about how her condition will progress and sense of being alone in discovering what happens next:

Nobody’s said anything to me about it that whether it might be two months, twelve months, two years before I can’t do anything for myself. I can’t think of anything that they said that was of any help at that stage. You’ve got it and that was about it you know? Anything else to do with it I’ve got to find out myself. It seemed off hand actually (Anthea, Dementia Patient)

Anthea also reflected on her perception of social stigma in relation to her diagnosis:

I don’t want anybody to know. I know their attitude’ll change towards me. They’ll start thinking I’m not capable (Anthea, Dementia Patient)

This was also a concern for Emma who was worried about other people gossiping about her.

I wouldn’t’ve thought of telling anybody. I wouldn’t go out of my way to say “Oh by the way I’ve got dementia.” We’ve got friends that tittle tattle (Emma, Dementia Patient)

One can see how perceptions of social stigma might lead to the use of denial and avoidance as described in the previous theme. In particular this can lead to active avoidance of social situations in order to keep the diagnosis from other people. This was certainly the case for Emma and Ged who had withdrawn from previously busy social lives and community involvement since the onset of their memory problems.

I don’t go out now like I used to. I just don’t feel like socialising very much anymore (Emma, Dementia Patient)

I was like that, wanting to be the centre of attraction, and perhaps I now realise I am no longer like that … They’ll think I’m an idiot. And I suppose I am an idiot (Ged, Dementia Patient)

In addition to social withdrawal Ged also highlights the negative self-perception he has developed since being diagnosed with dementia and his fear that others will also perceive him in a negative way.

The social environment is also a prominent factor in the experiences of clinicians. As with patients, the influence of the social context may be positive or negative. A key positive influence is working with multidisciplinary team colleagues to facilitate post-diagnostic support for patients and carers:

I’ll go to the community team and tell them ‘See this is the family I saw,’ you know, ‘can somebody be allocated and support them?’ … I keep bumping into the nurse, I say ‘Oh, how’s this lady?’ ‘Oh yeah, yeah, the husband’s much better now. He’s got the help, you know, she goes to day centre, go to respite care, so he gets the breaks’ (Harry, Psychiatrist)

Harry shows how the team provides him with information and reassurance that the patient is accessing the relevant support. Another clinician David, recognises the importance of individuals actively working together in order for patients to gain the greatest benefit.

You have to work with the system here, social workers, the care staff, the nursing staff to try and change that environment at home, so the benefits from therapy can be sustained (David, Clinical Psychologist)

As noted earlier, one reason that clinicians may not label the diagnosis is uncertainty. Clinicians also reflected on the role of team discussions in reducing uncertainty, thereby increasing the reliability of the diagnosis and minimising the potential for misdiagnosis:

That’s been helpful just to feel like part of a team, of people giving their response to that diagnosis … I think that’s been helpful for us to get it right really (Kim, Clinical Psychologist)

We do MDT [meetings] prior to the memory clinic. I think that’s beneficial you know cos it’s not just one person’s opinion on what a diagnosis is. It’s sitting down with someone else and discussing it. I think that’s better (Sandra, Advanced Nurse Practitioner)

As well as reflecting on the emotional impact on their patients, clinicians also acknowledged the personal emotional challenges of disclosing a diagnosis.

I find it personally very, very heavy (Harry, Psychiatrist)

If you’ve had some people that’ve gotten very distressed, it does affect you (Rebecca, Speciality Doctor)

It is emotionally quite draining … one does feel quite helpless (Reshma, Psychiatrist)

A further benefit of the wider team for clinicians is in minimising the personal impact of disclosing a diagnosis through supporting each other within a team environment:

It’s nice to be, to share experience and be part of a team … to be available for each other (Kim, Clinical Psychologist)

I was quite upset when I came out and I discussed it with a colleague (Sally, Advanced Nurse Practitioner)

In addition to the supportive functions of the clinicians’ social environment they also reported issues created by the wider system in which they worked. This can be in the form of resource constraints and inequalities in the support available. Some clinicians referred to the time pressures they experience which impacts on what staff can offer patients:

We have loads of people waiting to be seen so, if I’m, you know, taking time up to see people I’ve already seen then that list is gonna get longer. It’s just relentless, you know, people are coming, the referral rates are increasing (Harry, Psychiatrist)

Sometimes it is difficult for the memory clinic staff to give as much post-diagnostic time and pre-diagnostic preparatory work, erm, because of the big caseloads they carry (David, Clinical Psychologist)

Other clinicians highlighted how a lack of consistency can lead to inequalities in service provision.

So it tends to be just the ones who really need it or specifically ask for it which shouldn’t be the case really. It should, you know if that’s the best treatment for them they should get it. And they don’t (Robert, Clinical Psychologist)

After the diagnosis you should be seen again. This should be done routinely, preferably by the same person who has given the diagnosis. There needs to be some continuity, and then they need to be introduced to somebody who can support them for the journey of dementia … There’s not luxury of time, that’s something patients really miss out (Reshma, Psychiatrist)

In both these cases the clinicians highlight how issues relating to the wider service context are to the detriment of patients through preventing access to treatment and a lack of professional support following the diagnosis.

Interpretations of patients’ lived experience within a psychosocial model of dementia

The higher order theme The Social Environment: Help or Hindrance? captures the power of an individual’s social context on both negative and positive aspects of experience. The model developed by Pratt and Wilkinson (2003) proposes that an individual’s social context and ability/desire to know their diagnosis interact to produce four key areas of experience: maximising, distress, denial/decline and detachment. Table 4 provides a conceptualisation of the experiences of the patients who took part in this study within the context of this model.

Table 4.

Interpretations of patients’ lived experience of receiving a diagnosis of dementia in the context of Pratt and Wilkinson’s (2003) psychosocial model.

	Positive social context	Negative social context
High ability/desire to know diagnosis	Maximising Caroline	Distress Anthea Ged
Low ability/desire to know diagnosis	Denial/Decline Bob Doris Emma	Detachment Frank

Overall Bob and Caroline had the most supportive social contexts which, coupled with Caroline’s strong desire to know her diagnosis enabled her to adjust to her diagnosis, engage with enjoyable activities and develop a positive focus on what she can do rather than what she can’t. Caroline is therefore placed in the maximising quadrant. For Bob, his supportive social context, combined with his low ability to know the diagnosis, enabled him to feel content in his situation despite his cognitive impairments. Doris also has a generally positive social context given the support she receives from neighbours, friends and social services which currently enables her to remain at home despite her cognitive impairments. Overall, Emma’s account reflects a positive social context evident through the support she receives from her husband and a low desire to know her diagnosis demonstrated by her use of avoidance. Bob, Doris and Emma are therefore placed in the denial/decline quadrant.

Anthea and Ged displayed the most distress out of the patients interviewed. Both had a high ability to know their diagnosis and both reflected on aspects of a negative social context including difficulty adjusting to the diagnosis within their marital relationships and perceptions of social stigma. Anthea experienced the added influence of feeling unsupported by the clinicians involved in her care.

Frank is placed in the detachment quadrant as his experiences are shaped by negative social influences (frustration in his marital relationship and fear of stigmatisation) and a low desire to know the diagnosis (demonstrated in his use of denial and avoidance).

Discussion

This study used a phenomenological design to explore the lived experience of eight clinicians who had recently given a diagnosis of dementia and seven patients who had recently received a diagnosis. The aim of the study was to advance our understanding of the often complex process of diagnosis disclosure, how it affects those involved and how it might be improved. A strength of this study is that it includes the perspectives of both clinicians and patients enabling broad comparisons between the results of the two participant groups. The analysis revealed two higher order themes relevant to both clinicians’ and patients’ accounts: Hiding from the Truth and The Social Environment: Help or Hindrance?

Within the theme Hiding from the Truth, both clinicians and patients reflected on their experience of the use of denial and avoidance as a way of coping with the diagnosis. Denial was the most prominent reaction to a diagnosis according to both clinicians and patients. For some patients there was a conscious awareness of their use of denial as a coping strategy (e.g. Anthea) while others appeared to lack insight into their use of denial (e.g. Bob) which may have been a consequence of their current level of impairment. The use of denial served various functions including coping with losses associated with the diagnosis, preserving a positive sense of self and managing anxieties about the future.

Interestingly, clinicians also demonstrated their use of avoidance, specifically in relation to their use of explicit language regarding the diagnosis. The use of explicit terminology has been identified as an integral disclosure practice (Lecouturier et al., 2008) but also an area where professional opinions differ widely (Bamford et al., 2004), sometimes resulting in strategies to veil the diagnosis (Karnieli-Miller et al., 2007). The results of this study highlight three potential reasons for this apparent discrepancy between patient need and clinical practice: uncertainty about the diagnosis, attempts to minimise distress and respecting the client’s wish not to know the diagnosis.

The second theme that was clearly mirrored in the accounts of patients and clinicians was The Social Environment: Help or Hindrance? which captures the power of an individual’s social context on both negative and positive aspects of experience. This finding is consistent with theories that emphasise a psychosocial model of dementia (e.g. Pratt & Wilkinson, 2003) and provides support for the argument that the patient’s social context should be considered in relation to the practice of disclosure.

A strength of the model proposed by Pratt and Wilkinson (2003) is its dynamic nature which reflects changes in the experiences of people with dementia as their social context and desire or ability to know their diagnosis fluctuate. This was supported by patients’ accounts of their experience in this study. For example, Emma reflected on changes in her social environment (supportive husband vs. gossiping friends) and her desire to know her diagnosis (e.g. her use of avoidance vs. acceptance of her situation) which influenced her experience of receiving a diagnosis of dementia.

However, our findings also highlight a limitation of this model in the integration of a person’s ability and desire to know the diagnosis. Although Pratt and Wilkinson (2003) recognise that these are two separate concepts they argue that, in addition to allowing for decline in comprehension of the diagnosis over time, their integration allows for consideration of the coping strategies people use in relation to their diagnosis.

Our results support the conceptualisation of ability and desire to know the diagnosis as separate factors but also show that these factors may fluctuate independently which in itself may influence the coping strategies used by people with dementia. For example, a person may have a high desire to know their diagnosis at the point of disclosure but this may lower as they struggle to assimilate the diagnosis into their identity and daily lives, while the ability to know the diagnosis remains high. Similarly in the later stages of dementia a person may have a desire to know the reason for their difficulties but have a low ability to know/retain their diagnosis due to the nature of their illness.

In this study, both Anthea and Frank demonstrated a high ability but low desire to know their diagnosis. Both also demonstrated the use of denial as a prominent coping strategy within a negative social context. As noted earlier, denial may be used for a variety of reasons; for Anthea and Frank their use of denial may also have been a product of the uncomfortable juxtaposition between their high ability and low desire to know their diagnosis. Our research supports the conceptualisation of denial as a coping strategy that may hamper engagement with more positive strategies such as acceptance and adjustment (e.g. Aminzadeh et al., 2007) rather than as a product of the combination of a supportive social context and low ability/desire to know the diagnosis.

This study further highlights the potential for clinicians to contribute to a positive social environment and facilitate patients’ access to maximising coping strategies. The introduction of guidelines such as Living Well with Dementia (Department of Health, 2009) and initiatives such as the Alzheimer’s Society’s Dementia Friends, reflects a cultural shift towards focussing on the positive aspects of receiving a diagnosis of dementia in recent years. This is encouraging given that diagnosing dementia is associated with positive outcomes including delaying entry into care facilities (Mittelman et al., 2007), empowering people with dementia to be actively involved in decisions regarding future care plans (Milne, 2010) and access to treatment which can improve quality of life (Mitchell, 2013).

However, although clinicians have an important role to play in helping people with dementia to achieve positive outcomes following a diagnosis, the findings of this study are a reminder that we must remain mindful that positive outcomes occur in a context in which negative experiences are also inevitable for both clinicians and patients. It is of concern that for patients, emotional distress and the use of denial and avoidance were more apparent in this study than the use of maximising coping strategies. A potential reason for this is that the shock of receiving a diagnosis impedes patients’ ability to process further information as has been highlighted previously (Aminzadeh et al., 2007). One way to address this is to offer follow-up options so patients can fully explore the support available to them. To minimise the burden on resources in implementing this, follow-up could be offered in the form of a post-diagnostic support/therapy group. This has the added benefit of bringing people together who are facing similar difficulties and could therefore contribute towards providing a positive social environment for people with dementia.

As has been previously highlighted, being diagnosed with dementia is part of a larger process of transition (Robinson et al., 2011). The findings of this study are consistent with this concept as the experience of people with dementia may fluctuate between denial and acceptance and so individuals’ readiness to engage with maximising coping strategies is also likely to change. It is of note that for Bob and Caroline who both appeared relatively content in their current situations, the greatest time had elapsed between receiving the diagnosis and taking part in the research (between five and six months). The least time had elapsed for Anthea and Ged (less than two months) who showed the most distress. The passage of time is also an important factor in the transition process which may influence social context, the desire or ability to know the diagnosis and the coping strategies used by people with dementia. Further longitudinal research investigating the experience of receiving a diagnosis of dementia over time has the potential to inform the optimal conditions for how and when support should be offered to maximise uptake of positive coping strategies.

The findings highlight the opportunities and challenges associated with the social context for clinicians as well as patients. Multidisciplinary team members provide support for clinicians in several ways: direct interventions with the patient and their family; reducing the uncertainty associated with diagnosing; and minimising the emotional burden on individual clinicians through peer support. Conversely a clinician’s working environment can impede their capacity to effectively help the patient through service constraints, a lack of consistency in the support available for patients and failures to diagnose in the early stages of dementia.

The finding that the social context is important for clinicians highlights the need for further research exploring how elements of the clinician’s social environment influence disclosure practices. Several of the clinicians who took part in this study reflected on the advantages of team working in the context of diagnosis disclosure. A recommendation is therefore to ensure that diagnosing clinicians have access to a forum to discuss potential diagnoses with colleagues, thereby minimising uncertainty and anxiety about misdiagnosis. Furthermore, clinicians should have the opportunity to process the emotional implications of diagnosis such as feelings of anxiety and hopelessness. This could be achieved by incorporating discussion of the emotional impact of diagnosing into regular clinical supervision.

Although the aim of this study was to explore the lived experience of people who have given and people who have received a diagnosis of dementia, the small sample size and phenomenological emphasis mean that the findings cannot be generalised to larger populations. The patients who took part were all people who had been informed of their diagnosis, had retained their diagnosis and volunteered to talk about their experiences. As noted, up to half of people with dementia do not know their diagnosis. Whatever the reason for their lack of knowledge of the diagnosis, their experiences may be very different from the experiences reflected in this study. In the present study six patients had a diagnosis of Alzheimer’s disease. People with a diagnosis of a different type of dementia may also have different experiences. A further limitation is that the method of data collection may have been subject to recall bias. Future research that incorporates live data from disclosure meetings as they unfold may further develop our understanding of the factors that influence how clinicians disclose a diagnosis and how it is received by patients.

Conclusion

This study used a qualitative design to explore the lived experience of people who have recently given or received a diagnosis of dementia. Consistent with previous findings, this study demonstrated that disclosing a diagnosis of dementia is a difficult aspect of clinical practice and that patients experience a range of positive and negative reactions to their diagnosis. Avoidance and denial were more common than maximising coping strategies highlighting the need for follow up interventions that assist patients in adjusting to their diagnosis and accessing available support. A cost-effective way of achieving this may be to routinely offer patients the opportunity to attend a post-diagnostic support group which has the added benefit of increasing patients’ social support networks.

The findings provide support for a psychosocial model of dementia that emphasises the role of the individual’s social environment in their experience of dementia. Furthermore, the capacity for the clinicians’ social environment to both assist and hamper their efforts to help patients is demonstrated. Ensuring clinicians have access to a forum for team discussions may help to minimise the challenges associated with diagnosing dementia. Further research is needed to explore the impact of clinicians’ social context on disclosure practice and to elucidate optimal conditions for facilitating patients’ uptake of positive coping strategies.

Footnotes

Authors' contributions

The study was completed in part fulfilment of the lead author’s (EM) Doctorate in Counselling Psychology which was awarded by Teesside University. The lead author was the principal investigator on the project with overall responsibility for study development and design, participant recruitment, data collection, analysis and writing this paper. GM is the NHS Field Supervisor for the project providing input on study design, recruitment, data analysis and writing this paper. AW is the Academic Supervisor for the project providing input on study design, data analysis and writing this paper.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Elinor Milby completed her Doctorate in Counselling Psychology at Teesside University. During this time she completed a year-long training placement working within mental health services for older people. Elinor is now a Research Associate at the University of Liverpool working in the field of perinatal mental health. Her special interests include developing and testing new interventions to prevent the onset of mental health problems and tackling inequalities in mental health service provision.

Gemma Murphy’s special interests focus on the impact of living with a Diagnosis of memory impairment with the aim of informing local Dementia Trust-wide pathways and National awareness of the process of giving a diagnosis. Gemma has presented her research at national conferences including the Institute of Psychiatry Annual conference and at the House of Commons for the British Psychological Society.

Allan Winthrop was formerly the Director of the Doctorate in Counselling Psychology at Teesside University for 13 years. He now works full time as a Consultant Psychologist/Senior Partner at Independent Psychological Services LLP in the North East of England. The majority of his work is in the area of Adult Mental Health and Expert Witness services for the Courts.

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