Context – The Memory Clinic
Data were collected for this thesis in two sites in the UK – Devon (Site A) and London (Site B). While the memory clinic structure is essentially the same nationally, following the NICE guidance for dementia diagnosis and assessment (National Institute for Clinical Excellence, 2006), each clinic is set up differently within the recommended pathway (summarised in Figure 2). The diagnostic process within this pathway differed between the two sites, details of which will be explained below.
Referral from the GP
A referral to the memory clinic will come from the patient’s GP. Some people may have gone to the GP themselves worrying about their memory problems, some have been taken by a family member or friend, or the GP may have noticed symptoms and recommended a referral. The GP will take the history and usually do a short assessment with the patient. They will also refer the patient for blood and urine tests, as well as administer any other physical examinations to rule out cognitive impairment caused by other factors such as strokes. This information will therefore be available to the memory clinic when triaging the patient for assessment.
Referral from GP Physical Tests: Brain Scan, Blood Test Cognitive Testing: e.g. ACE, MMSE History Taking (also from family member) Professionals Meet to Make Diagnosis Decision Diagnostic Feedback Meeting Post- Diagnosis Meeting (if dementia) Referral for Further Testing (if unsure) Discharge to GP (if MCI or no diagnosis) Figure 2: Memory clinic process
patient’s home. In Site A psychology assistants conduct the assessments, and in Site B the clinicians vary according to clinic and can be a psychologist, nurse, or in some cases the same psychiatrist or geriatrician who delivers the
diagnosis.
The cognitive assessments differ between clinics, but the majority of the patients in the study took the ACE-III (87%), and a proportion took the MMSE (9%). The cognitive assessments take on average 30 minutes to an hour. The ACE-III has a total score of 100, with a score lower than 82-88 (depending on the patient’s pre-morbid IQ) indicating difficulties beyond that which would occur with ageing. The MMSE has a total score of 30, with the cut-off point for
dementia being lower than 26. The ACE-III and MMSE are brief cognitive tests that are used clinically to detect dementia, but their specificity can be lacking with people in earlier stages or with unusual symptom presentations
(Velayudhan et al., 2014). More detailed neuropsychological tests are not routinely administered, but should there be a clinical uncertainty about the diagnosis the patient may be referred for further testing. This occurred for two of the patients in the study, but these test results were not collected or reported to the patient in detail in the video recorded meeting.
The patient will be interviewed on their symptom history in the same
appointment as the assessment. The memory clinics ask the patient to attend the appointment with a family member or someone who knows them well, and this companion plays a key role in the history taking (examples of letters in Appendix B). In Site A the patient’s companions have an in-depth interview on the patient’s history while the patient undertakes the cognitive testing, and thus the patient is not present. Site B has no formal separation of patient and their companion at this stage, although it reportedly commonly occurs.
Additionally, the scan can show a change in the blood flow of the brain, which is caused by small vessel disease and can cause vascular dementia. In early dementia however the scan may show no more changes than one would expect with normal ageing, and a cognitively intact person may have some of these changes in the brain but not have dementia. The doctor thus will not be able to tell the patient’s diagnosis from the scan alone.
In Site B these assessment and brain scan appointments take place separately, usually over one or two months, although this can take longer. Site A has a different approach, where the assessments, history taking and diagnosis
feedback all take place on the same day, and for the clinic based in the hospital the brain scan is also on the same day. Therefore, while in Site B the patient will have one appointment for the brain scan, one for the assessment and another for feedback, in Site A the patient has one appointment for all the stages, which takes about 4 hours.
The average number of days between GP referral and the diagnostic feedback meeting in Site A was 69 (approximately 10 weeks). The referral data was missing for two of the trusts within Site B, but for the remaining trust there were on average 134 days (18-19 weeks) between GP referral and diagnostic
feedback.
Diagnostic Decision Making
Once all the information from the history taking, physical tests, and cognitive tests has been collected, the psychiatrist or geriatrician will meet with the rest of their team to assess the evidence. In Site A, where everything happens on the same day, this meeting takes place once the patient has completed the tests and their companion has completed the carer’s interview. The meeting consists of a half hour discussion between the doctor, the psychologist who
administered the test, and the nurse who conducted the companion interview. The patient and their companion wait in the waiting room during this time. The Site B clinics differ in their approach, but tend to have weekly or fortnightly
Dementia is a complex, clinical diagnosis. People can score under the threshold in the cognitive tests not only if they have dementia, but also if they are anxious or have low mood, a low level of education, sensory impairments, or do not speak English as a first language. Similarly, as stated above, the brain scan cannot provide a clear indication that the patient has dementia. For this reason, the doctor is reliant on the history when coming to their diagnostic conclusion: the collateral information from the patient and especially the patient’s
companion is key. A patient may have perfect cognitive test scores and there may be little evidence for dementia on the brain scan, but if he or she has experienced a change in cognitive functioning, which cannot be explained by depression or anxiety, then this might point towards a diagnosis of dementia. Of particular importance is that this is a change in functioning over time, and hence patients may need to be tested over time to detect deterioration. Likewise, if the patient did not do well on the cognitive test and had some vascular risk factors or atrophy on the scan, but has recently gone through a dramatic life change such as a partner dying or retirement, this may not lead to a diagnose of dementia. Reaching a diagnosis of dementia therefore involves balancing up numerous pieces of evidence, and thus there can often be uncertainty
surrounding diagnostic accuracy.
Pre-diagnosis Counselling
For patients in Site A, there is no contact from the memory clinic prior to the day of diagnostic feedback other than the appointment letter (Appendix B). This letter outlines what will happen on the day in terms of a scan followed a meeting with memory clinic staff. However, the possibility of a dementia diagnosis is not mentioned in the letter, with the following paragraph describing the potential outcome of the day:
companion in the clinic, there is no formal process of informing or consent for the diagnosis to take place.
Some clinics in Site B explicitly use the initial assessment appointments as pre- diagnostic counselling – i.e. prepare the patient for a possible diagnosis and discuss their preferences for treatment and support should they have dementia. However, there is only one clinic (from nine) with a formal process in place, despite recommendations for pre-diagnostic counselling in the UK national memory clinic guidelines (Hodge et al., 2014). Similar to Site A, the
appointment letter for the diagnosis feedback does not mention the possibility that the person will receive a diagnosis of dementia (Appendix B).
Diagnostic Feedback Meeting
The next stage of the memory clinic process is the appointment where the patient receives (or does not receive) a diagnosis of dementia. It is these meetings that are video recorded and examined in this thesis. In Site A this meeting occurs on the same day as the patient’s assessment, at the end of their 4 hours slot at the memory clinic. In Site B this meeting may occur from weeks to months after the initial assessment. The goal of this meeting is to diagnose the patient, start them on appropriate treatments, and refer and signpost them to relevant support services. In all the clinics in the study, the doctors (psychiatrists or geriatricians) lead the diagnostic feedback meetings. In Site A they are usually the only clinician in the room, but in Site B the clinician who conducted the initial assessment, or the clinician or support worker who will follow the patient up, are often also present. These clinicians are usually mental health practitioners working in the NHS, or support workers from the
Alzheimer’s Society.
People who are told that they have mild cognitive impairment, or that their difficulties are not sufficiently severe to receive a diagnosis, are discharged with instructions to go back to their GP if they notice their memory problems getting any worse. The patients who are told their memory problems are due to
they may refer the patient for further cognitive testing or a more detailed brain scan. Another appointment will be booked, usually with the same clinician, to discuss those results.
Post-Diagnostic Meetings
Should a patient receive a diagnosis of dementia, they usually meet with someone connected to the memory clinic between a week and a month after their diagnostic feedback. Nurses, occupational therapists, or more increasingly Alzheimer’s Society support workers run these meetings. The purpose is to check how the patient has reacted to medications if they were prescribed, and also to discuss planning for the future, such as setting up lasting power of attorney (giving permission for another person to take over financial and health decisions in the event of loss of capacity). Information is provided for the patient and their family on memory services available in their area, such as memory cafés or dementia-friendly groups. The number and nature of post-diagnosis meetings varies according to the individual clinic, but memory clinics generally do not provide long term care for patients unless they have complex needs. If the patient requires further support in the home they will be referred to social services. The patient’s GP will be in charge of monitoring medication once the patient has been discharged from the clinic.
Methodology – Data Collection and Conversation Analysis Data Collection
Data was collected from 9 memory clinics across 4 NHS trusts (Devon Partnership NHS trust, East London NHS foundation trust, Camden and Islington Foundation NHS trust, Barts Health NHS trust). Data collection ran from May 2014 to October 2015.
communication of the diagnosis, which, while an interesting topic of research (Plejert et al., 2015), is beyond the scope of this study. A letter outlining the study was sent from the clinician to potential participants with their memory clinic appointment letter. When the patient and their companion arrived at the clinic, a researcher approached them to discuss the study and obtain written, informed consent. Their meetings with the clinicians were then filmed without the researcher present.
Equipment
The memory clinic meetings were filmed using GoPro HERO3+ black edition cameras. The majority of the meetings were recorded using two cameras, placed so as to capture as much detail as possible, ensuring all participant faces were captured. The meetings were also audio recorded using
dictaphones to ensure maximum chance of high quality audio capture. Audacity audio processing software was used for CA transcription of the diagnostic
feedback, as well as QuickTime for non-verbal information. The CA transcription was done using the Jeffersonian method (Jefferson, 2004), see Appendix C for transcription notation. This method of transcription uses symbols to identify all features of talk, including the timing (such as when different speakers overlap and the exact length of pauses), as well as changes in pitch, volume, and speed. I transcribed 46 diagnosis deliveries for CA analysis and the remaining were transcribed by the company CA Transcription.
Conversation Analysis
Two of the research aims of the thesis are to describe how dementia diagnoses are delivered in memory clinics and how people with dementia respond to the diagnosis. The literature review identified broad themes affecting
communication of diagnosis (namely emotional impact and misunderstandings) and communication with people with dementia in other outpatient settings (balancing patient and companion needs and compensation for cognitive
impairment), and recommended further exploration of the diagnostic interaction itself. The method chosen for this exploration within this thesis is Conversation
CA is “a qualitative approach to the study of social organisation of human
interaction” (Heritage and Atkinson, 1984). It was developed as a method to
analyse talk as it occurs naturally, “directly and with repeated inspection, (to)
discover and elucidate orderly phenomena evident in the domains of actual talk and social interaction” (Sidnell and Stivers, 2013, :27). CA is an unmotivated,
inductive method that aims to identify and describe regularities in the sequential organisation of our interactions that enable us to communicate meaningfully.
The theory behind CA is that it is the study of talk in interaction. What makes it different from other sociological, linguistic, or psychological studies of talk is that while it is interested in language, its primary concern is how social actions are organised and constructed within interactions. In this sense, CA is a study not of what language an utterance contains, but what social action is being
achieved within that utterance. In CA, participants within interactions co-
construct the meaning of social actions by their construction (i.e. design of our utterances) and placement within a sequence of talk. The role of sequence within interaction creates expectations for participants to respond in a certain way. For example, if one participant asks a question, the expected response is for the other participant to answer the question. These sequences become rules, which participants in interactions are accountable for sticking to. These are evidenced by the fact that, should a participant not adhere to the expected sequence, there is generally a public display of accounting for that rule-break. For example, if the participant did not understand the question and thus cannot answer it, they will initiate a “repair” – such as asking the speaker to repeat their question.
CA as a study of sequence and design of talk allows an interesting approach to doctor-patient interaction, in that it allows a direct examination of how an
frequency, they do not report how these behaviours are communicated and how they affect the interaction as it unfolds. CA, through microanalysis of how our communication develops within a sequence of talk, is able to report on the subtle nature of interaction in a way no other method can.”
CA is an established, rigorous method to identify interactional behaviours in different contexts in many different disciplines. As the vast majority of tasks accomplished by clinicians occur via communication, CA has been identified as a useful tool in examining healthcare interactions (Parry and Land, 2013). As discussed in the introduction, CA has been used to identify broad features of medical interactions such as the organisation and structure of consultations (Robinson and Heritage, 2005), and how participant roles manifest in medical interactions, such as how patients are able assert ownership of their
experiences (Heath, 1992). Furthermore, the ways that doctors design their turns at talk have been shown to affect the participation of the patient in the interaction. An example of this is that doctors formulate questions to expect certain answers: for example “no blood or anything?” expects a negative response, and thus makes it harder for patients to say they are experiencing that symptom (Heritage, 2009). CA, in describing these behaviours within doctor-patient talk, provides “a sound basis for assessing the likely interactional
and communicative of consequences of adopting one form (of talk) rather than another” (Drew et al., 2001, p67).
CA has also been highlighted as a useful method in examining interactions where one participant has dementia. While other methods to explore
communication may focus on the deficits of the person with dementia, CA sees interaction as a collaborative achievement, and the successful progression of the interaction thus depends on both parties (Perkins et al., 1998). This can lead to useful discoveries in how to improve interaction with people with dementia. For example, Hamilton (1994) showed that turn taking is present even in late stage dementia, but the split second timing required in multi-party interactions causes difficulties for someone with dementia to enter
dementia modifying their behaviours in a productive way to enhance communication.
Conversation Analysis is an established and useful tool for examining both medical interactions and interactions with people with dementia. However, the vast majority of the literature on dementia diagnosis delivery consists of
interviews with participants, which are limited by memory and post hoc
rationalisations that the interview structure can induce. The advantage of CA as a method is that it allows examination of the diagnosis deliveries themselves, not how people report experiencing them, or limited aspects of the interaction as dictated by a coding scheme. As stated in the previous chapter, there is only one paper using CA examining dementia diagnosis delivery to date (Peel, 2015). This study illustrated data from three meetings with one clinician, and states “larger data-corpora of talk within the memory clinic context” (page 7) are needed.
Data Analysis Methodology
CA methodology was thus employed to examine the diagnosis delivery and patient responses (Sidnell, 2013). Initial analysis involved repeated watching of the videos, mapping topics and noting the time started and time spent on each topic within the meetings. This was recorded in tables and then repeated in NVivo to link the mapping to the text in the transcripts. The structure of the meetings was identified, which is described in Chapter 4.
After identifying the meeting structure, the sections of the diagnosis feedback where the diagnosis is named and the patients responded to the diagnosis were identified. These sections were transcribed in more detail, using Jeffersonian notation (see Appendix C). The next stage consisted of identifying turns where
The analysis was conducted individually, but also frequently in groups in CA