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P4. Timely Diagnosis

Detailed programme and abstracts

P4. Timely diagnosis (Tuesday 1 Nov., 14.00 - 15.30)

P4.1. Patients’ and carers’ experiences of UK memory services


A study was carried out to test the validity of an accreditation programme for memory services in the UK by investigating whether different levels of accreditation status (excellent compared with accredited) were reflected in patients’ and carers’ reported satisfaction.

A comparison of survey data from patient and carer feedback questionnaires collected from services as part of the accreditation process took place.

Five hundred and eighty-three patient questionnaires and 663 carer questionnaires were returned from 41 services. Patients and carers who attended memory services which were later ‘accredited as excellent’, were more likely than those who had visited ‘accredited’ services to have: been given written information about a variety of topics; been asked for feedback about using the memory service; and had found it easier to get to their appointments. Carers attending services accredited as excellent were more likely to have been offered an assessment of their needs.

Patients and carers had very good experiences of memory services overall whether they had standard or excellent accreditation. However, ‘excellent’ services were consistently better on a number of factors. This provides further support that the accreditation process is an important indicator of the quality of memory services.

P4.2. Excellence in diagnosis in culturally diverse settings: the development of Universal Memory and Cognitive Exam (UMACE)

KARDILE Mangal, LUSCOMBE Georgina, PEISAH Carmelle

Objective: Screening instruments for cognitive impairment (CI) have generally been developed in Western countries in samples with adequate education and literacy.  It is important for CI screening tools to be developed locally, to be culturally sensitive and account for lower levels of literacy and education which are common in underdeveloped countries. The Universal Memory And Cognitive Exam (UMACE) screening tool was developed in India for use in both literate and illiterate populations, and for use in persons with neurological conditions resulting in disability.

Aims:  To assess the psychometric properties of the UMACE in different populations, with or without neurological or psychiatric conditions. Setting and design:  The UMACE was administered in three adult samples: a non-clinical sample (n = 78); a sample with or without psychiatric disorders (n = 70) and a sample with and without neurological disorders (n = 207). Methods: The psychometric properties of the UMACE were explored by administering the 12 item UMACE and the 11 item MMSE. Statistical analysis: ROC curve analysis assessed the utility of UMACE as a cognitive screen compared with the MMSE.

Results: The UMACE demonstrated utility in the detection of cognitive impairment in all samples.  In the largest sample (including 20% illiterate subjects) a cut-off of 28.5out of 40 had an AUC 92.5% (95% CI 88.9% to 96.2%), a sensitivity of 89.7% and specificity of 77.0%.

Conclusions:  The UMACE is a useful, simple screen for CI appropriate for use in various clinical and non-clinical situations in both literate and illiterate persons.

P4.3. “Do you want to know?”: Delivering a Diagnosis of Dementia


Introduction: There is a societal drive for an increase in dementia diagnosis rates, with the aim of increasing patient involvement in future decisions about their care. However, clinicians receive little guidance on how to tell someone they have dementia, and there is little research in how this diagnosis discussion occurs in practice.

Methods: Eighty-one diagnostic feedback meetings with 21 clinicians from 9 memory clinics across the UK have been video-recorded. These have been micro-analysed using conversation analysis, in order to identify systematic patterns in the verbal and non-verbal communication of clinicians, people with dementia, and their families. People with dementia and their families were asked about their recollection of diagnosis immediately after the meeting and one week later.

Results: Doctors always name dementia when delivering the diagnosis. There is evidence of doctors framing the diagnosis according to the person’s prior experience. This includes eliciting the person’s orientation of why they are there, moving physically closer to and looking at the individual (rather than their family), and pursuing explicit recognition of the diagnostic news (e.g. “what do you think of that?”), which is atypical in diagnostic deliveries. Severity is downgraded with terms such as ‘mild’. Prognosis is not mentioned in 40% of meetings. When prognosis is discussed, it is embedded in medication talk, e.g., “the tablets will slow down the decline”. Immediately after the meeting, 64% patients could not name the diagnosis, although 46% of these patients remembered the diagnosis approximately one week later.

Discussion: There is evidence that doctors in memory clinics are attempting personalised delivery to enhance understanding, but are avoiding and mitigating prognosis discussions. This raises a debate as to the balance between information provision and instilling a positive viewpoint for the future at dementia diagnosis feedback.

P4.4. Timely diagnosis and post-diagnostic support – the Bavarian Dementia Survey (BayDem)

BARTH Janina, SCHALLER Sandra, MARINOVA-SCHMIDT Velislava, NICKEL Franziska, HESS Manuela, DE LA ROSA Vanessa, PAPE Franziska, GRAESSEL Elmar, KOLOMINSKY-RABAS Peter

Background: Information provision about dementia and existing support structures is crucial for the uptake of dementia services for both – the person with dementia (PwD), as well as informal caregivers.

Therefore, the aim of our study was to assess the time point of the first symptoms of dementia until a first dementia diagnosis. In addition, information provision after diagnosis disclosure was analyzed.

Methods: BayDem is a multi-center, longitudinal study at three different sites in Bavaria, Germany. Participants are PwD and their informal caregivers. Data is collected by means of standardized, face-to-face interviews in close cooperation with local dementia institutions.

Results: A total of 109 informal caregivers (M=62 years, SD=12, Min=27, May=89); 67% female) were interviewed at the time-point of first-ever dementia diagnosis of the PwD. Informal caregivers were mainly spouses (50%) or children (38%) of the PwD. The time period between onset of symptoms (recognized by informal caregivers) and diagnosis was 21 months. In total, 43% received the diagnosis after one year, 62% after two years. 50% of informal caregivers reported to be informed about medical and non-medical treatment options, as well as the course of the disease. Only 20% received information about local support services. Results indicate significant differences between spouses and children of the PwD (p<0.05). Children reported to be less informed in comparison to spouses.

Conclusion: The presented results highlight the need for a timely diagnosis and optimization of information provision for informal caregivers after first-ever diagnosis. In order to optimize dementia treatment and care, as well as to prevent caregiver burden, the time point of first diagnosis is crucial and should be actively used to inform informal caregivers and the PwD.

The research was initiated by the Bavarian State Parliament and is funded by the Bavarian State Ministry for Health and Care (StMGP).

P4.5. Geographical variation in diagnoses of dementia: a nationwide study

ZAKARIAS Johanne Købstrup, JENSEN-DAHM Christina, PHUNG Thien Kieu Thi, WALDEMAR Gunhild

Background: Early, accurate diagnosis of dementia opens the possibilities for the right treatment, support, and counselling. Despite availability and dissemination of guidelines for diagnosis of dementia, the diagnostic rate in people with dementia is low and the quality of dementia diagnoses is poor. Consequently, the overall aim of the study was to analyze the quality of diagnostic evaluation of dementia, by assessing nationwide geographical variation in the following surrogate markers for diagnostic quality, including prevalence and incidence of dementia, age at first diagnosis of dementia, likelihood of receiving a specific (subtype) diagnosis, and being diagnosed in a specialist department.

Methods: A registry-based cross-sectional study in the entire elderly population of Denmark (≥65 years) conducted in 2012. Data included place of residence, hospital discharge diagnoses of dementia and department specialty. Proportion of the elderly population diagnosed with dementia (n=34,536) was compared across the five regions and 98 municipalities in Denmark, and adjusted for age and sex. The various other surrogate marker for diagnostic quality was compared across the five regions.

Results: In 2012, the national prevalence of dementia diagnoses was 3.6%, with a national incidence of 3.9%. The prevalence ranged from 3.0% to 4.0% in the five regions and from 2.1% to 5.1% in the 98 municipalities, demonstrating a two-fold difference. Patients with dementia who were registered with a specific diagnosis ranged from 47.5% to 65.0% in the five regions, while patients who were diagnosed in a specialist department ranged from 60.9% to 74.0%.

Conclusion: The observed geographical variation in registration of dementia diagnoses indicates gaps in the access to appropriate diagnostic evaluation and care for patients with dementia. Our findings call for improvement in the quality of diagnostic evaluation of dementia.  

P4.6. A review of referrals of younger patients in memory clinic: Time for a rethink?


Introduction: Timely diagnosis and care for dementia has been a major focus in the UK over last few years and as a result there has been a 25% increase in the rate of diagnosis.  Increased public awareness of dementia, active involvement of politicians and successful campaigns by the voluntary sector are testament to the success of the National Dementia Strategy. However, there have been some unforeseen consequences. One of which is the increased referrals for people under 65 to specialist dementia services.

A recent study from Cornwall in the South-West of England (Kelly et al, 2015) showed that 81% of referrals did not have dementia. A service evaluation from North Wales put the figure at 59% (Conference Poster, 2016).

Methods and results:  Our service caters for a large district in West London. We evaluated all referrals below 65 between June 2014 and June 2015 (total 157). The diagnosis rate was 12.5%, with the majority being Vascular Dementia. There were a number of non-dementia diagnoses, the most prevalent of which were related to mental health disorders.

Discussion: Whilst there is a need to raise awareness for appropriate and timely referrals for those with memory problems in younger people, there is also a need to develop suitable guidance. This may include developing age appropriate screening measures at point of referral prior to request for assessment in secondary dementia services.

The authors therefore propose a national survey to look into referral patterns for patients under 65 to memory services and the outcome of such referrals. A nationally agreed guideline would maximize resource and provide appropriate intervention for those who have subjective memory complaints or other psychological issues. The Implications of such a guideline on primary care and other psychiatry services and the development of an appropriate training program is discussed in the paper.



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche