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P13. Diagnosis and disclosure

Detailed programme and abstracts

P13.1. The diagnostic and treatment challenges of behavioral and psychological symptoms in Alzheimer’s disease; a qualitative study in memory clinic practice


1Erasmus MC, Rotterdam, Netherlands, 2Amsterdam UMC, Amsterdam, Netherlands

Introduction: Timely recognition and treatment of behavioral and psychological symptoms in dementia (BPSD) may benefit quality of life, caregiver burden, and delay disease progression of community-dwelling Alzheimer’s disease (AD) patients. In this qualitative study we examine the experiences of memory clinic physicians with the recognition and management of BPSD in AD.

Methods: Semi-structured interviews were held with 10 physicians (6 neurologists, 4 geriatricians) employed at memory clinics of academic or general hospitals in the Netherlands. Two independent researchers coded verbatim transcripts of the interviews, followed by a consensus meeting on themes.

Results:  Preliminary results indicate substantial variability in how memory clinic physicians recognize and diagnose BPSD in AD. Themes are: 1. Prevalence of BPSD in early stages of AD; e.g. ‘BPSD is more often present in late stages of AD […]’ vs. ‘I see this often [in the memory clinic], I think these are the main problems people with AD face’). 2. Systematic assessment; some physicians consider it part of clinical work-up to assess behavioral changes while others do not touch upon BPSD. 3. Barriers for assessment; e.g. a lack of time, and inability to observe BPSD occurring at home in a memory clinic setting. Treatment and management of BPSD in AD also differed greatly. Themes are 1. Treatment type; Two physicians use a person-centered non-pharmacological approach, others refer patients with BPSD to a case-manager or psychiatrist, or treat ‘problematic’ behaviors with psychotropic drugs. 2. Capabilities; some physicians experience managing BPSD in AD as very difficult, while others are confident about their capabilities.

Conclusion: There are remarkable differences in the recognition and management of BPSD in AD patients visiting memory clinics in the Netherlands. Considering the potential benefit of early recognition and treatment, a first step is discussing standardization of optimal diagnosis and treatment strategies for BPSD in memory clinics.

P13.2. BASIC – a new case finding instrument for dementia for use in clinical settings


1Danish Dementia Research Centre, Copenhagen, Denmark, 2University of Copenhagen, Copenhagen, Denmark

Objective: Previous research indicates that combining cognitive assessment with informant and self-report improves accuracy in dementia case-finding. The aim of this study was to develop and validate a new case-finding instrument for dementia for use in clinical settings inspired by existing instruments and including elements from validated questionnaires.

Methods: According to focus group interviews with general practitioners and district nurses, the instrument should: 1) be broadly applicable in general practice and memory clinics, 2) easily administered, 3) have good discriminative validity, 4) be relatively free from educational, age and gender bias, and 5) should not contain unnecessarily confrontational items.

The Brief Assessment of Impaired Cognition (BASIC) includes 1) Self-report, 2) Informant report, 3) Supermarket Fluency and 4) Category Cued Memory Test (score range 0-25). It can be administered in 5 minutes. BASIC was prospectively validated in Danish memory clinics. Patients consecutively referred from general practice were tested at their initial visit prior to diagnosis. Control participants were primarily recruited among participating patients’ relatives. Expert clinical diagnosis was subsequently used as reference standard for the classification accuracy of BASIC.

Results: BASIC was found to have high discriminative validity (sensitivity .95, specificity .98) for dementia (n = 122) versus socio-demographically matched control participants (n = 109). In comparison, the MMSE had 0.82 sensitivity and 0.90 specificity. Limiting the discriminative validity analysis to MCI (n = 42) caused a relative attenuation of the classification accuracy of BASIC (sensitivity 0.86, specificity 0.89) whereas the discriminative validity of MMSE was further reduced (sensitivity 0.61; specificity 0.72). Performance on BASIC is unaffected by education and only slightly affected by age and gender.

Conclusion: BASIC is a brief, efficient and valid case-finding instrument for dementia in a memory clinic setting. Further cross-validation in a general practice setting has been initiated.

P13.3. Adjustment to test, risk and diagnostic disclosures in people with mild cognitive impairment: an observational cohort study


University of Edinburgh, Edinburgh, United Kingdom

Introduction: Mild cognitive impairment (MCI) is a state between normal healthy ageing and dementia with an uncertain prognosis in terms of its risk of progression into dementia. This creates a complex dynamic between what is communicated to the individual about their condition and how the individual perceives the information conveyed to them.

Aim: The aim of the study is to understand whether the way information is conveyed to patients with newly identified MCI at memory assessment services could have an impact on the patients’ clinical outcomes and possibly lead to an altered prognosis. We focus on specific outcomes for the individual – changes in cognition, anxiety, psychological well-being and adjustment to illness in the short and long term. 

Method: This is a longitudinal mixed methods study. The project has recruited 63 people (men = 25 ([40%]; women = 38 [60%]), from across five sites in the South East region of Scotland who had been referred to a memory assessment service with a clinical suspicion of MCI. These participants have been longitudinally assessed since June 2018 before and after they have been disclosed of memory assessment results. The study uses a battery of quantitative assessment measures as well as conducting semi-structured interviews with a subset of participants. 

Results: Baseline assessments ran from June 2018 – July 2019 and all follow-up assessments will be completed by March 2021. We will be presenting baseline and two waves of follow-up data at the Alzheimer Europe conference (missing the last data point which will not have completed). Initial results show the concept of MCI is perceived with mixed feelings, with the immediate response to disclosure more positive and as time goes on, the initial perception shifting. The conference will provide an opportunity to discuss the impact of being informed of potential dementia risk on individuals.

P13.4. Improving the diagnosis of mild cognitive Impairment in elderly individuals using a multifactorial automatic analysis of voice quality and prosody


1Johns Hopkins Medicine, Baltimore, United States, 2University of Gothenburg, Gothenburg, Sweden

Introduction: While the effects of cognitive decline on speech production of patients with Mild Cognitive Impairment (MCI) are not as extensively studied as other aspects of cognitive decline, recent studies show speech impairments in these individuals[1, 2]. Our previous work analyzed segmental and prosodic features of speech production and showed that vowel formant frequencies and vowel duration can distinguish patients-with-MCI from controls with 83% mean cross-validated accuracy[1]. This new research aims to identify whether voice quality and speech fluency distinguish patients-with-MCI from controls, to provide objective markers from speech and ultimately improve diagnosis.

Methods: 55 people participated in a Cookie theft picture description task from the Boston diagnostic aphasia examination; 26 patients-with-MCI and 29 controls from Sweden. The recordings were acoustically analyzed and measures of i. voice quality (i.e., breathy/creaky voice, spectral energy, dysphonia, articulatory effort, jitter, shimmer, harmonicity); ii. speech fluency (i.e., speech and articulation rate), and, prosody (mean fundamental frequency), were elicited from the recordings. 

Results: Patients-with-MCI differ significantly from controls with respect to voice quality (breathy/creaky voice, cepstral peak prominence, center of gravity, shimmer); and speech fluency (articulation rate and averaged speaking time).

Discussion: Voice quality and speech fluency differentiate patients-with-MCI from healthy controls. An unexpected finding was that lower periodicity in spectra that corresponds to greater dysphonia distinguishes patients-with-MCI from healthy individuals. The acoustic measures presented can facilitate the automatic analysis of speech in the clinic quantifying speech production and ultimately provide accessible acoustic diagnostic markers of patients-with-MCI.

References: 1. Themistocleous, C., M. Eckerstrom, and D. Kokkinakis, Identification of Mild Cognitive Impairment From Speech in Swedish Using Deep Sequential Neural Networks. Frontiers-in-Neurology, 2018. 9: p. 975.

2. Tóth, L., et al., A speech recognition-based solution for the automatic detection of mild cognitive impairment from spontaneous speech. Current-Alzheimer-Research, 2018. 15(2): p. 130--138.

P13.5. What can a diagnosis of dementia tell me? A call for more research into sub-types of dementia


1The Alzheimer Society of Ireland, Dublin, Ireland, 2The Alzheimer Society of Ireland Dementia Research Advisory Team, Fermanagh, Ireland, 3The Alzheimer Society of Ireland Dementia Research Advisory Team, Wicklow, Ireland, 4The Alzheimer Society of Ireland Dementia Research Advisory Team, Galway, Ireland, 5The Alzheimer Society of Ireland Dementia Research Advisory Team, Sligo, Ireland, 6The Alzheimer Society of Ireland Dementia Research Advisory Team, Cork, Ireland

Background: The Dementia Research Advisory Team is a group of people living with dementia and carers/supporters who are involved in dementia-related research as co-researchers. These Experts by Experience influence, advise and work with researchers across Ireland to improve the quality and relevance of research. The team is supported by The Alzheimer Society of Ireland (ASI) and also contribute to ASI funding decisions. They work to influence change and ensure that real life experiences are considered in designing and implementing research. This another important aspect of Person Public Involvement (PPI) is research prioritisation i.e. setting the research question.

Content: Members of the Dementia Research Advisory Team are deeply concerned that a large portion of people who have a diagnosis of dementia do not receive any specific information about the sub-type of dementia they have. ‘Dementia’ is an umbrella term used to describe several progressive conditions affecting the brain so what does a diagnosis of dementia really mean for a person and their family? Similarly, many people are ‘diagnosed’ as having memory problems.

A diagnosis of ‘dementia’ does not bring about the much-needed specific information that will equip the person and their families to face their diagnosis. Certain sub-types remain in the shadows and are critically under-researched. 

Members of the Dementia Research Advisory Team wish to discuss this issue and how it impacts them and their peers. They want to call upon the research community to continue and expand their crucial research into brain disease and different types of dementia so that people can benefit from much-needed clarity around their diagnoses.



Last Updated: Tuesday 30 June 2020


  • Acknowledgements

    The 30th AE Conference received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe gratefully acknowledges the support of all conference sponsors.
  • European Union
  • Roche