Background

There are over 9.9 million new cases of dementia each year worldwide.1 Dementia is a progressive condition that describes a set of diseases of the brain, which cause ‘memory problems, changes in mood and behaviour, and communication and reasoning problems’.2 Alzheimer’s disease is the most common cause of dementia.2 In the UK, efforts to raise awareness such as the Prime Minister’s national challenge to fight dementia in 2015,2 have increased public awareness of dementia, and as a result, increasing numbers of people are being diagnosed3 and this is set to rise further with our ageing population. In 2001 in the UK, the Department of Health recommended that all specialist mental health services for older people include specialist memory clinics.4 The memory clinic process involves testing, delivery of the diagnosis (usually by the consultant/old age psychiatrist) and agreeing a treatment/care plan. Testing involves reviewing patient history, an interview with a companion, physical examination, a brain scan and brief cognitive testing5 using standardised instruments such as the Mini Mental State Examination (MMSE)6 or the Addenbrooke’s Cognitive Examination III (ACE-III).7 Some memory clinics facilitate a same-day assessment and diagnostic service; however, in most clinics, this takes place over 1 or 2 months. In addition to the memory clinics, there have been recommendations for providing prediagnostic counselling and postdiagnostic support.5 8 However, patients, carers and professionals express concerns about support before and after the diagnosis.9 10

Receiving a diagnosis of dementia is a life-changing event and involves coming to terms with physical and mental deterioration.11 Due to the nature of the illness, people living with dementia experience comprehension, memory and word finding difficulties, affecting their ability to participate in conversations.11–13 This in turn leads to changes in competencies (eg, skills, autonomy) and in patients’ relationships with others.11–13

Since the 1990s there has been an effort to shift the focus of health and social care research from a solely biomedical one, to one that includes peoples’ experiences, social factors and the impact of the diagnostic label.14–17 In dementia, research that includes the lived experiences of people with dementia has grown in recent years11–13 18–20 including identifying the diverse emotions that people experience when they receive a diagnosis,12 21–23 and the impact this might have on one’s sense of self, autonomy and agency.12 24–28

When receiving a chronic and life-limiting illness diagnosis such as dementia, one’s identity can be replaced by the available disease identity29 which carries the stigma attached to this diagnosis.29–31 In dementia, stigma and marginalisation27 31 32 add to the difficulties people face in relation to their symptoms. This stigma is widespread, for example, in physicians, patients and their families’ perceptions and attitudes.32 Stigma impacts psychosocial well-being24 and can affect people prior to being diagnosed, for example, in seeking diagnosis,33 34 or cause people to feel marginalised after receiving the diagnosis.35 In line with this, the WHO has emphasised the importance of addressing the stigma attached to dementia,35 and research has increasingly focused on how people can overcome stigma and preserve their sense of self.25 26 36 37 A focus on how people can ‘live well’ with dementia13 38 39 in a supportive environment has also been highlighted in research40–43 and policy,2 that aims to increase the quality of community-based support by the creation of ‘dementia-friendly’ communities.

Although in recent years there has been growing research on the experiences of people with dementia, this is still limited,12 13 22 and particularly at the critical period soon after receiving the diagnosis.12 18 44 An important implication for research at the time of diagnosis is also the fact that many people may have had dementia for some time prior to diagnosis. Hence, the aim of the current study was to explore people’s experiences of cognitive decline and receiving a diagnosis of dementia soon after receiving the diagnosis.

Methods

Data were collected as part of large mixed-methods study Shared Decision Making in Mild to Moderate dementia (ShareD) conducted across nine memory clinics in the UK including rural (three memory clinics in Devon) and urban areas (six memory clinics in London). Data were collected from May 2014 to July 2016.

Memory clinic staff identified patients with upcoming memory clinic appointments who had a scheduled diagnostic feedback appointment and did not need an interpreter. Information sheets were sent with patient appointment letters. Clinicians assessed whether patients had capacity to consent to participate. When the patient and their companion arrived at the clinic, a researcher approached them to discuss the study further and obtain written, informed consent. For patients without capacity to provide informed consent to participate (one patient in our sample), we followed the ‘Guidance on nominating a consultee for research involving adults who lack capacity to consent’.45 Patients who participated in the ShareD study (n=215; consent rate 51%) and received a diagnosis of dementia were asked at this appointment if they would be willing to undertake an interview about their experiences. If they agreed, a researcher called them in the days after the appointment to arrange a date and time. Semistructured, in-depth Interviews took place in patients’ homes within 2 weeks of receiving a diagnosis. All participants gave informed consent. The participants had mild to moderate dementia and their impaired cognitive capacities could lead to misunderstanding their involvement in the study. Their companions were always present when the study was explained to them, and participants were able to opt out at any stage of the research, including the interview. As the interviews involved a discussion of the patient’s illness, which may be distressing, it was made clear to them that they did not have to discuss topics that they did not wish to. Interviews were conducted by PX and two other female researchers (ShareD study). All interviewers had PhDs, interview training and research experience.

The interview guide was developed with the Alzheimer’s Society (dementia support and research charity) Research Network. Interviews aimed to elicit participants’ experiences of receiving a diagnosis of dementia. The interviews were video recorded using GoPro HERO3 cameras. Although the interviews were video recorded due to the equipment available, audio files were transcribed verbatim and transcripts analysed using thematic analysis. Identifying information was removed in order to preserve anonymity. A process of data reduction and display was undertaken using NVIVO and Excel, generating categories, subthemes and themes.46 This was done in 11 analytic meetings, where the codes were developed, defined and refined. Thematic analysis involved identifying patterns within the data, by generating codes, categories, subthemes and themes.47 The analysis was jointly conducted by both authors and discussed in wider analytic meetings increasing the validity of the analytic process. Differences of opinion were resolved through discussion of the empirical data.

Results

Sixty-one adults who were diagnosed with dementia were interviewed. Interviews lasted on average 22 min (SD=11). Most participants were diagnosed with Alzheimer’s disease and were on average 81 years old. Fifty-six per cent were female. Participant characteristics are presented in table 1. Doctors administered either the Mini Mental State Exam (MMSE)6 or the ACE-III7 and its shorter version (MiniACE)48 as part of routine assessment. Sixty patients completed one of these with most scoring in the mild, and some in the moderate, stages of cognitive impairment (table 2).

From 104 codes, 22 categories were identified, which fed into nine subthemes and four overarching themes (see table 3). The four main themes were: (1) accommodating to the diagnosis: threat to self and social identity through increasing visibility of dementia; (2) vulnerability and being in limbo; (3) change in relationships and social isolation: loss of control and agency; (4) maintaining agency and self-worth.

Receiving a diagnosis of dementia was associated with losing competence and agency, thus threatening one’s core sense of self. Faced with this loss and the additional stigma of dementia, people struggled to accept the diagnosis: many made considerable efforts to adjust to the news that they are now a person with dementia with others resisting the diagnosis altogether (see figure 1). People were confronted with their decreasing competence in everyday tasks at home, which was becoming increasingly visible in the wider family and with friends and acquaintances in their social networks (see figure 2).

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Figure 1

Impact of dementia images/diagnostic label on the adjustment to diagnosis.

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Figure 2

Impact of close/wider social networks on sense of self and competence.

Discussion

This study captured peoples’ initial subjective experiences of receiving a diagnosis of dementia. People were interviewed with 2 weeks of receiving their diagnosis. People expressed a range of understandings and reactions to the diagnosis. Over a third of people did not expect this diagnosis and were shocked, and a third of people were not surprised and/or less affected. However, many people had a fluid state of emotions, involving acceptance and rejection of the diagnosis. This is in line with the ‘paradox’ of dementia expressed through coexisting views of acknowledgement and resistance,23 49 where people struggle to maintain a valued sense of self against the loss and stigma attached to this diagnosis.21 24 The experiences reported in this paper should be understood as products of the contingencies of the interview situation,50 that is, findings are situational and reflect accounts and emotions at the time of the interview which may change over time. Peoples’ experiences were sometimes fluid within the interview, reflecting how an interview somewhat artificially breaks down these experiences into component parts.

People described loss on multiple levels12 21–23: a loss of control over their lives due to loss of competence in everyday normal activities of daily living (eg, driving, managing finances, not remembering how to cook, not remembering what they were supposed to be doing on a particular day) and this foreshadowed further future loss, of mental competence and of being able to live or be cared for in their own home. They were aware that the decision about being uprooted from their familiar surroundings would most likely not be theirs to take. They were perturbed by the prospect of moving out of their home and community, reflecting peoples’ basic needs for a familiar place of shelter51 and maintaining close relationships and friendships. Similarly, people were worried about the impact of cognitive impairment on driving (eg, losing the ability to drive/driving licence). This impacted on peoples’ feelings of security and identity.

Over 30 years after Charmaz’s27 seminal work, people invoke the stigma of dementia that brings social isolation and exclusion,52 restricts what they can do, makes them feel discredited and a burden on others. People understood dementia as a regressive process of becoming childlike53 and becoming crazy, resulting in efforts to hide their diagnosis from friends or family to avoid embarrassment.54 Expectation that one’s identity will change in the eyes of others,55 prevented people from gaining the benefits of sharing their diagnosis, which include improved quality of life, better planning for the future and developing a positive support system that promotes independence.54 56 While recent efforts to explore and identify stigmatising and discriminating discourses, by including people’s subjective experiences in research have been successful,57 these need to translate into practical solutions that will help clinicians and families to better deal with these issues.

These experiences of loss are so significant that efforts and coping mechanisms to restore a sense of self and independence are very important. We found that people developed a range of strategies to maintain a valued self and their independence,39 54 by normalising, for example, by describing it as ‘normal ageing’,58 resisting or downplaying the seriousness of the diagnosis. This also demonstrates that for some people, symptoms are disregarded as normal ageing prior to receiving the formal diagnosis, and therefore the point of diagnosis does not always closely correlate to the point at which dementia symptoms commence. Other people incorporated their diagnosis into their existing self-concept,55 59 maintaining a continuous sense of self54 60 by drawing on abilities and past successes that were presented as still part of their identity. People who focused on maintaining a positive outlook viewed dependency as support rather than a burden on others. The complex issues, for example, uncertainty about the future and stigma, can be discussed with patients and their family/carers early, that is, at the diagnostic feedback meeting or soon after, as we have previously found that patients/carers express these concerns during the diagnostic feedback meeting.61 This is crucial for the diagnostic meeting agenda as appointments in memory clinics typically lasting 30 min and postdiagnostic support not being available for all patients.

In line with previous research, this study found popular dementia images, social interaction and maintaining positive relationships to be central in shaping self-perception, well-being and independence.25 26 40 41 43 We found that broad relationships, for example, activity groups and communities were important for the person’s identity and maintaining a valued self. This was often done in subtle ways (eg, butcher helping with counting money) that can maintain peoples’ independence. The findings also lend support to psychosocial theories of self-concept and illness62–67 that emphasise the importance of social representations and social interactions in sustaining perceptions of self. Thus, demonstrating a link between the other peoples’ reactions towards the person with dementia, to the experience of symptoms and adjustment to dementia.64 65 67

In this context, the development of ‘dementia friendly communities’ can have a positive impact as it aims to improve the physical environment and quality of life of people living with dementia.67–70 Similarly, the quality of relationships with family and friends shaped people’s positions in terms of independence, agency and feeling secure. This is particularly important as many people with dementia in the UK live with or near family members.43

Receiving a diagnosis of dementia is a communicative process. Peoples’ subjective experience of cognitive decline prior to receiving a diagnosis is relevant to this process. Adding to this, are expectations of how others might react to the diagnostic label, for example, becoming stigmatised/excluded. In addition, we saw how dementia differs from other progressive diseases as people experience ‘cognitive fluctuations’ (interruption in the ongoing flow of awareness).71 These factors influence how the diagnosis is received and accommodated, and has implications for the diagnostic process, including prediagnostic counselling, and postdiagnostic support. Support prior to receiving the diagnosis would not only make the process less confusing for the patient72 but also help people who care for them, as due to the nature of the illness, it is typically carers who initiate assessments for possible dementia.22 It would also prepare people for this diagnosis, as we found that over a third of the participants did not expect the diagnosis and many did not know what dementia is. However, only one of the nine participating memory clinics, had a formal process in place for prediagnostic counselling, despite recommendations that this should be part of the diagnostic process.8 In addition, despite the benefits of postdiagnostic support for adjusting to the diagnosis and enabling patients and their families to plan for the future and increase independence,73 there is still lack of adequate postdiagnostic support.10 74

Conclusions and further research

Receiving a diagnosis of dementia is often a turning point in peoples’ lives. People are confronted with and frustrated by decreasing competence in everyday normal activities. They feel vulnerable and in limbo not knowing what further deterioration they will experience and when this will happen. People are worried about disclosing their diagnosis to others, with some actively concealing their diagnosis even from close family. Limited time in diagnostic appointments and limited prediagnostic counselling and postdiagnostic support means people have few opportunities to address the emotional impact of being told one has dementia. Future research could address how to optimise participation of people with dementia in diagnostic feedback meetings, for example, through spending more time orientating people to the purpose of the meeting and addressing the emotional impact of a diagnosis of dementia. The stigma experienced by patients could be explicitly addressed to mitigate the threat to one’s self-identity and social identity. Finally, professionals could discuss the benefits of staying positive and helpful coping strategies used by others along with accepting support to live well with dementia.

Future research could address how to tailor the diagnostic process to people with fluctuating cognition, for example, reorientating people to the purpose of meetings during the diagnostic process, addressing the emotional impact and stigma of a life-changing diagnosis such as dementia and providing hope by focusing on how to live well with dementia. Further research can also explore the relationship between participants’ sociodemographic factors (eg, age, education) and attitudes/concerns regarding cognitive decline and receiving the diagnosis.