Assessment Symposium BSMS Module 202 PDF

Assessment Symposium BSMS Module 202 Dr Fraser MacNicoll Dr Ben Hicks Dr Stephanie Daley John and Clare Gillies Stan and Ann Pearce Session aims • Understand how a dementia assessment is undertaken • Explain how each component element contributes towards a dementia assessment • Understand the...

Assessment Symposium BSMS Module 202 Dr Fraser MacNicoll Dr Ben Hicks Dr Stephanie Daley John and Clare Gillies Stan and Ann Pearce Session aims • Understand how a dementia assessment is undertaken • Explain how each component element contributes towards a dementia assessment • Understand the subjective experience of undertaking a dementia assessment • Be able to describe what makes a good dementia assessment • Explain factors which would contribute towards a poor experience of a dementia assessment Session plan • Experience of diagnosis: John and Clare Gillies • Dr Fraser MacNicoll: Cognitive Assessment • Experience of diagnosis: Stan and Ann Pearce • Break • Dr Ben Hicks: Timely & early diagnosis • Panel discussion Experience of diagnosis: John and Clare Gillies Cognitive Assessment Dr Fraser MacNicoll Higher Specialist Trainee – Older Adults Psychiatry Learning Outcomes By the end of this session, you will be able to: • Understand how a dementia assessment is undertaken • Explain how each component element contributes towards a dementia assessment • Have an understanding of typical symptoms in most common types of dementia Join at slido.com #31338640 ⓘ Start presenting to display the joining instructions on this slide. What springs to mind when you think of cognitive assessment? ⓘ Start presenting to display the poll results on this slide. Outline of cognitive assessment ❑The patient interview ❑Collateral history ❑Physical examination ❑Cognitive Rating Scales ❑Investigations Which part of the assessment is most informative? ⓘ Start presenting to display the poll results on this slide. Diagnosis of Dementia • Progressive cognitive decline • Enough to impact on usual daily activities • Present for at least 6 months Patient interview • Build rapport from start • Why are they being assessed? • Specific areas to enquire about – 1. Memory ❑ Attention ❑ Episodic memory ❑ Semantic memory Patient interview 2. Language ❑ Language production ❑ Language comprehension ❑ Reading and writing 3. Executive abilities ❑ Ability to initiate, plan and organise Patient interview 3. Visuospatial Skills ❑ Dressing Ability ❑ Disorientation 4. Visual Perception ❑ Misidentification Patient interview 5. Personality ❑ Changes in personality or character ❑ Preferences 6. Mood and anxiety ❑ Depressive symptoms ❑ Any anxiety? Patient interview 7. Delusions and hallucinations ❑ ?Theft, burglary, infidelity ❑ Visual or auditory hallucinations 8. Activities of daily living (ADLs) ❑ Ability to perform normal duties needed to function in world Collateral History • Very similar content to patient interview Memory Language • And – Executive Abilities ❑ What they noticed first? Visuospatial Skills ❑ How has it progressed? Visual Perceptions ❑ Impact on family and relationships ❑ Day to day impact – including Driving Personality Mood and anxiety Delusions and Hallucinations Activities of Daily Living History – continued ❑Family History ❑Past Medical History ❑Medication ❑Alcohol and drug use ❑ Risk and safety! What risks are we worried about in dementia? ⓘ Start presenting to display the poll results on this slide. Physical Examination • Carry out a general neurological examination • Specifically looking for – Neurological Feature Associated with Extrapyramidal side effects [bradykinesia, tremor, rigidity] Chorea Parkinson’s Disease Frontotemporal Dementia Dementia with Lewy Bodies Huntington’s Disease Visual hallucinations Dementia with Lewy Bodies Frontal release signs [Grasping, pouting, glabellar tap] Frontal lobe damage Investigations • Blood tests (not an exhaustive list!) • • • • • • • • • FBC U&Es LFTs Bone profile HbA1c LFTs TFTs B12 and folate Vitamin D Cognitive Rating Scales Cognitive Rating Scales Cognitive Rating Scales Neuroimaging Condition Alzheimer’s Disease Frontotemporal dementia Vascular Dementia Dementia with Lewy Bodies Structural Imaging [CT or MRI] Cortical atrophy, symmetrically affecting temporal and parietal lobes Asymmetrical frontal and temporal atrophy Periventricular white matter intensities Global volume loss Functional Imaging [SPECT or PET] Temporoparietal hypoperfusion/hyp ometabolism Asymmetrical frontal and temporal hypoperfusion/hyp ometabolism Non specific patterns of hypoperfusion Reduction in basal ganglia uptake with DAT scan Common Presentations • Alzheimer’s dementia (50-60% of cases) ❑ Increased confusion and memory loss – anterograde amnesia ❑ Difficulty with language ❑ Impaired attention ❑ Social withdrawal ❑ Trouble managing finances/complex situations ❑ Disorientation ❑ Mood changes ❑ Delusional beliefs Common Presentations • Vascular Dementia (15% cases) ❑ Presentation varies depending on size, location and type of damage ❑ More impact on higher cognitive functioning – decline in executive functioning ❑ Attentional deficits ❑ Some memory impairment as well Common Presentations • Dementia with Lewy Bodies (10-15%) ❑More attentional, executive and visual processing deficits ❑Fluctuating cognition with pronounced variations in attention ❑Recurrent visual hallucinations, typically well formed and detailed ❑REM sleep behaviour disorder ❑Spontaneous features of parkinsonism Common Presentations • Frontotemporal dementia (1-2%) ❑ Personality and behaviour changes ❑ Acting inappropriately or impulsively ❑ Impaired judgement ❑ Lack of empathy ❑ Loss of interests ❑ Frequent mood changes ❑ Language Issues ❑ Executive dysfunction Recap and summary On this slide: • Understand how a dementia assessment is undertaken • Explain how each component element contributes towards a dementia assessment • Have an understanding of typical symptoms in most common types of dementia Experience of diagnosis: Stan and Ann Pearce Early or ‘Timely’ diagnosis of dementia: Lessons from DETERMIND Dr Ben Hicks: [email protected] Research Fellow and DETERMIND Programme Manager Centre for Dementia Studies Learning Outcomes By the end of this session, you will be able to: • Define what is meant by an ‘early’ and ‘timely’ diagnosis of dementia • Evaluate the impact of an early and timely diagnosis of dementia • Understand important clinician’s competencies when disclosing a dementia diagnosis Policy Context • Global policy directives seek to support people to live well with dementia • Key component of this is supporting people to access an early diagnosis Dementia Policy Proposed benefits of early diagnosis The National Dementia Strategy (2009) “The evidence points strongly to the value of early diagnosis and intervention to improve quality of life” The Prime Minister’s Challenge on Dementia (2012) “Surveys show us that people with dementia would like early diagnosis. And we know that with early intervention people with dementia can continue to live well for many years” The Prime Minister’s Challenge on Dementia 2020 (2015) “There is greater awareness now about the importance of diagnosis and postdiagnosis support for the individual’s quality of life” Definitions • ‘Early’ and ‘Timely’ diagnosis can be used interchangeably but they are different • Early diagnosis is associated with the biomedical discourse on diagnosis • Diagnosis made during the prodromal or pre-symptomatic stage • In response to earliest onset of symptoms where a diagnosis of dementia cannot be confirmed • Can result in a diagnosis of Mild Cognitive Impairment, Subjective Cognitive Impairment or Cognitive Impairment No Dementia • With advancement in predictive biomarkers then possibility of receiving an early diagnosis before any symptoms are evident Definitions • Timely is a more person-centred approach to diagnosis • Can be in response to the onset of symptoms but also at a time when best suits the person and their family and when they can most benefit from the diagnosis • There are people who do not want to be informed of a dementia diagnosis, and so no diagnosis would be considered a timely diagnosis • Involves working together with the person, family and clinicians • Discourse evolved partly in response to a lack of evidence for benefits and harms of an early diagnosis Why get a diagnosis? • Regional variations in the post-code lottery of diagnosis and system level challenges (exacerbated after pandemic). Also lack of awareness of dementia • 47% of over 1,400 carers across 5 European Countries reported they wanted an earlier diagnosis • People are having to weigh up a decision about the benefits and harms of receiving a diagnosis Benefit Harm Sustain well-being and have a better understanding of what is happening Psychological damages such as anxiety and depression Access drugs and psychosocial support Loss of social networks Plan ahead and prepare for future Social exclusion- loss of driving licence Uphold human rights Internalisation of stigma Help advance research Incorrect diagnosis Reduce admissions to hospitals/care homes Current evidence base • Alzheimer’s Disease International (2011): • Three population-based studies that demonstrated small effect sizes associated with an early diagnosis and mortality or cognitive decline • Dubois et al (2016) review: • • Many of the proposed benefits of an early diagnosis were based on modelling studies Advocated for more research that used patient data. • Couch et al (2021): • • Retrospective cohort of 15,836 people with dementia in SE London showed early diagnosis did not reduce the risk of hospitalisation or emergency department attendances. Qualitative work with 2 people with dementia and 12 carers, suggested participants valued an early diagnosis of dementia as it enabled them to better understand the condition and so prevent crisis, involve the person with dementia when implementing decisions, and access services and treatments to manage decline • Woods et al (2019): • self-reported timely diagnoses and higher quality diagnostic disclosure were associated with better adjustment and less negative emotional impact on carers • Empirical patient data on benefits or harms of an early or timely dementia diagnosis allows for generation of policy and services that deliver better outcomes for service users, carers and systems So…Welcome DETERMIND! 940 PwD 750 Carers www.determind.org.uk Early and Timely diagnosis • Created indices of early and timely: • Temporal: time between noticing symptoms and diagnosis (2> = early diagnosis) • Clinical stage: Clinical Dementia Rating Scale (1> = early diagnosis) • Self-report from people with dementia and carers on timeliness of diagnosis • Outcome measures: • Quality of Life: DEMQoL, DEMQoL proxy, C-DEMQoL, EQ-5D (health related QoL) • Well-being: ONS measure of well-being and anxiety • Carer burden: Zarit Scale of Caregiver Burden Person with dementia Table 2. Individual logistic regression model co-efficients for person with dementia outcomes against indices of early and timely diagnosis. Standardised beta, beta and 95%CIs reported for the association within each individual model. Indices of early diagnosis Indices of timely diagnosis Early: time Early: severity Timely: Person with dementia Timely: Carer β B (95%CIs) β B (95%CIs) β B (95%CIs) β B (95%CIs) DEMQOL-Proxya 0.03 0.70 (-1.72 to 3.12) 0.09 4.44 (-0.01 to 8.89) 0.07 2.28 (-2.29 to 6.75) 0.08 2.12 (-0.70 to 4.94) DEMQOL b -0.05 -1.36 (-3.48 to 0.75) 0.05 2.83 (-2.11 to 7.77) 0.12 3.51 (0.11 to 6.91)* -0.13 -3.32 (-6.26 to -0.40)* EQ5Db -0.03 -0.01 (-0.05 to 0.03) 0.22 0.17 (0.10 to 0.24)*** 0.07 0.03 (-0.02 to 0.08) -0.04 -0.02 (-0.06 to 0.03) ONS satisfied b -0.04 -0.17 (-0.52 to 0.17) 0.13 1.10 (0.35 to 1.86)** 0.06 0.30 (-0.26 to 0.86) -0.10 -0.44 (-0.92 to 0.05) ONS worthwhile b -0.04 -0.17 (-0.54 to 0.21) 0.05 0.44 (-0.39 to 1.27) 0.07 0.33 (-0.26 to 0.91) -0.11 -0.48 (-1.00 to 0.04) ONS happiness b -0.04 -0.18 (-0.53 to 0.17) -0.003 -0.03 (-0.77 to 0.72) 0.04 0.17 (-0.41 to 0.76) -0.08 -0.33 (-0.81 to 0.16) ONS anxiety b 0.07 0.39 (-0.09 to 0.88) -0.06 -0.73 (-1.79 to 0.33) -0.10 -0.67 (-1.46 to 0.11) 0.04 0.21 (-0.47 to 0.88) aModel adjusted for MMSE score, person with dementia age, person with dementia gender, person with dementia ethnicity, person with dementia IMD, person with dementia education, carer age, carer gender, carer ethnicity, carer education, carer relationship to person with dementia. b Model adjusted for MMSE score, person with dementia age, person with dementia gender, person with dementia ethnicity, person with dementia IMD, person with dementia education. *p<0.05, **p<0.01, **p<0.001 Carer Table 3. Logistic regression model co-efficients for person with dementia outcomes against indices of early and timely diagnosis. Beta coefficients and 95%CIs reported for the association within each individual model. Operationalised early diagnosis Early: time Operationalised timely diagnosis Early: severity Timely: Person with dementia Timely: Carer β B (95%CIs) β B (95%CIs) β B (95%CIs) β B (95%CIs) CDEMQOLa 0.11 3.95 (0.73 to 7.17)* 0.14 9.04 (3.10 to 14.98)** 0.17 7.30 (1.06 to 13.54)* 0.22 8.08 (4.02 to 12.14)*** Zarita -0.14 -2.47 (-4.03 to -0.91)** -0.08 -2.57(-5.48 to 0.35) -0.06 -1.40 (-4.69 to 1.89) -0.14 -2.59 (-4.65 to -0.54)* EQ5Da 0.02 0.01 (-0.03 to 0.04) 0.00 0.00 (-0.06 to 0.06) -0.08 -0.04 (-0.09 to 0.02) 0.13 0.05 (0.006 to 0.09)* ONS satisfied a 0.06 0.24 (-0.10 to 0.58) 0.02 0.13 (-0.49 to 0.75) 0.04 0.17 (-0.48 to 0.82) 0.13 0.49 (0.06 to 0.91)* ONS worthwhile a 0.04 0.13 (-0.18 to 0.43) 0.02 0.13 (-0.43 to 0.69) 0.01 0.06 (-0.57 to 0.69) 0.09 0.32 (-0.09 to 0.74) ONS happinessa 0.09 0.37 (0.00 to 0.75) 0.07 0.54 (-0.15 to 1.23) 0.05 0.26 (-0.50 to 1.03) 0.05 0.22 (-0.27 to 0.71) ONS anxietya -0.06 -0.37 (-0.88 to 0.15) -0.06 -0.59 (-1.50 to 0.33) -0.08 -0.56 (-1.55 to 0.42) -0.13 -0.76 (-1.40 to -0.12)* aModel adjusted for MMSE score, person with dementia age, person with dementia gender, person with dementia ethnicity, person with dementia IMD, person with dementia education, carer age, carer gender, carer ethnicity, carer education, carer relationship to person with dementia. *p<0.05, **p<0.01, **p<0.001 Findings • Agreement was poor within early diagnosis indices and timely diagnosis indices: • People who were diagnosed within two years were not associated with person with dementia perceived timely diagnosis but was associated with carer perceived timely diagnosis. • People who were diagnosed at an earlier stage of the condition were not associated with the person with dementia perceived timeliness but was associated with carer perceived timeliness. • Need to explore what ‘timeliness’ means for both participants and whether this changes overtime • For the person with dementia indices of early diagnosis had no systematic benefit to person with dementia but generally did not show any harm. • Self-report quality of life (DEMQOL) did demonstrate significant associations between measures of timeliness. Interestingly, when the person with dementia perceived the diagnosis to be timely, there was a positive association with the DEMQOL outcome, whereas if the carer perceived the diagnosis to be timely, there was a negative association. • Early diagnosis (severity) was associated with higher EQ-5D and ONS satisfied item. Findings • Carer reported timeliness was consistently associated with positive carer outcomes. • • • With the exception of ONS worthwhile and ONS happiness items, all reached statistical significance. The CDEMQOL outcome was the only measure to be statistically significantly associated with all indices of early and timely diagnosis. With the exception of the association with the person with dementia perceived timeliness and carer EQ5D, all other associations indicated that early/timeliness benefited the carer • How we conceptualise the point in which someone is diagnosed, whether that is being early (objective) or timely (subjective), has implications on outcomes. • Getting an early diagnosis is likely to map onto carers perceived timeliness, more so than the person with dementia perceived timeliness. • Early diagnosis based on time since noticing on the onset of symptoms, does not appear be an important driver to improved outcomes for both the person with dementia and carer. • Diagnosis at the very earliest stages of the condition (CDR ≤ 0.5), before the disease progresses, results in the most consistent improvements. Whilst we did control for cognitive performance (sMMSE) in the model, we should be cautious with our interpretation as the association could just reflect effects of impairment on outcomes. • A self-perceived timely diagnosis benefits the person with dementia and carer respectively. Carers who perceive the diagnosis as timely were associated with better outcomes for the carer, whilst when the person with dementia perceives the diagnosis to be timely, they benefitted (albeit to lesser extent). • Efforts to aim for earliest diagnosis (temporally), or working to what a carer believes is timely, may come at the consequence of person with dementia outcomes. Quality of diagnostic disclosure • Important aspect of the diagnosis process and some studies suggest this can impact on people’s abilities to live well with the condition, particularly in the short-term • Few studies that examine the competencies of the clinician delivering the diagnosis and how this relates to people’s perceptions of the quality of the diagnostic disclosure and the impact this has on people’s well-being overtime • Qualitative work conducting 12 dyadic interviews with people with dementia and their carers who reported ‘good’ or ‘poor’ disclosure meetings • Critical Incident Interviews were used: • Focus on the diagnostic disclosure meeting and the competencies of the clinician delivering the dementia diagnosis. Findings • Delivery of the diagnosis • Consultant being confident and clear when they are making the diagnosis and tailoring the language and the amount of information they disclose to the person receiving the diagnosis. • Explaining the tests results and scans as well as continually checking in to see whether the person with dementia and their carer had questions helped to ensure the diagnosis was clearly received and understood. • Implicit within this was that the consultant had a good current knowledge of the participants’ type of dementia. • Balance of honesty and positivity about prognosis • Consultant honest about the possible progression of their dementia where possible. However, it was important that this was balanced alongside a need to feel that there was some hope and that they could be supported to live well with the condition • Not want to feel that they had been handed a death sentence. • important that they had the opportunity to speak privately with the consultant about the diagnosis. Findings • Take time to understand the participant and how they may react • • • Taking time to get to know patient at the start of the meeting so they could judge how they may react to the diagnosis and so tailor the disclosure and prognosis discussions accordingly. Balanced against spending too much time on small talk, which could result in trivializing the meeting. Participants also felt it was important that the quality of the meeting was not negatively impacted based on their identity/protected characteristics. For instance one participant with younger on-set dementia felt the quality of their disclosure meeting was detrimentally impacted due to their age. • Personal attributes • • Highlighted the positive social skills such as being polite and welcoming and speaking with a calm, reassuring tone along with non-verbal behaviours such as making eye contact when talking. Participants also highlighted the importance of the clinician sitting sufficiently close to them so they did not have to shout as well as feeling that their discussions were confidential and could not be overheard by others. • Closing out of the meeting • • Discuss medications available and how these may influence their abilities to live well with the condition. Provide advice on disclosing their diagnosis to other family members and friends to increase their informal support networks as well as where they might go for support services that where appropriate for them. This was particularly the case for people with younger on-set dementia who were offered little suitable options for post-diagnostic support. Next steps • Develop this knowledge into a training tool that can be used within teaching and academic work • Use this tool in the wider DETERMIND cohort to explore the association between quality of diagnostic disclosure and short- and long-term life quality and well-being How prepared was the clinician for your disclosure meeting? Did the clinician go over the results of the tests and scans with you? The clinician came across as very unprepared and did not have any of the information we required to hand The clinician made no reference to the tests and scans that the person with dementia had undertaken The clinician came across as somewhat unprepared and only had a small amount of the information we required to hand The tests and scans were mentioned by the clinician but only briefly The clinician came across as fairly well prepared and had most of the information that we required to hand The tests and scans were discussed to some extent but I would have liked more time on this The clinician came across as thoroughly prepared and had all of the information we required to hand I am unsure of how prepared I felt the clinician was The tests and scans I am unsure were thoroughly whether we had discussed with me for this discussion the appropriate amount of time Recap and summary • Learning outcomes: • Define what is meant by an ‘early’ and ‘timely’ diagnosis of dementia • Evaluate the impact of an early and timely diagnosis of dementia • Understand important clinician’s competencies when disclosing a dementia diagnosis • Any questions then please contact me: [email protected] What questions do you have for our panel?