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QOP3. Quick oral presentations – Medical and public health aspects

Detailed programme and abstracts

QOP3.1. BASIC-Q – a new case finding instrument for cognitive impairment aimed at community settings

NIELSEN Ann1, JØRGENSEN Kasper1, NIELSEN Rune Thomas1, WALDORFF Frans Boch2, WALDEMAR Gunhild1

1Danish Dementia Research Centre, Department of Neurology, University of Copenhagen, Rigshospitalet, Copenhagen, Denmark, 2Section of General Practice, Department of Public Health, University of Copenhagen & Research Unit of General Practice, Department of Public Health, University of Southern Denmark, Copenhagen, Denmark

Objectives: 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 cognitive impairment for use in community settings inspired by existing instruments and including elements from validated questionnaires.

Methods: According to focus group interviews conducted in 2018 with community elderly care professionals an instrument aimed at community settings should not include formal cognitive testing, but rather take the form of a questionnaire or structured interview. The Brief Assessment of Impaired Cognition Questionnaire (BASIC-Q) includes 1) Self-report, 2) Informant report, and 3) Orientation (score range 0-20). It can be administered in less than 5 minutes.

BASIC-Q was prospectively validated in five 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 the instruments.

Results: BASIC-Q was found to have high discriminative validity (sensitivity .92, specificity .97) for cognitive impairment (including dementia and mild cognitive impairment, MCI) (n = 159) versus socio-demographically matched control participants (n = 109). In comparison, the MMSE had 0.76 sensitivity and 0.81 specificity. Limiting the discriminative validity analysis to MCI (n = 42) caused a relative attenuation of the discriminative validity of BASIC-Q (sensitivity 0.88, specificity 0.88) whereas the discriminative validity of MMSE was further reduced (sensitivity 0.61; specificity 0.72). Performance on BASIC-Q is unaffected by education and age and only slightly affected by gender.

Conclusions: The results of the present study support the notion that integrating self- and informant report with assessment of orientation provides valid and efficient identification of cognitive impairment. Further validation in a general practice setting has been initiated.

QOP3.2. The electronic Person-Specific Outcome Measure (ePSOM) development programme

SAUNDERS Stina1, MUNIZ-TERRERA Graciela1, EVANS Alison2, SHEEHAN Shane1, LUZ Saturnino1, RITCHIE Craig1

1University of Edinburgh, Edinburgh, United Kingdom, 2Alzheimer's Research UK, London, United Kingdom

Introduction: There is a recognition that outcome measures currently used in clinical trials in prodromal and preclinical neurodegenerative diseases do not capture the research participants’ views of effectiveness. This led to the four stage ePSOM programme [1] an evidence review and programme methodology; [2] focus groups to identify key domains of importance to people  at various degrees of neurodegenerative disease; [3] a UK-wide online survey and [4] the development of an app which will permit the design of an outcome measure  for use in regulatory trials.

Aim: To understand the outcomes that matter to individuals in Alzheimer’s disease clinical trials and ultimately to develop a patient reported outcome measure, an ePSOM app.

Method: The first three stages of the programme are completed. Here, we report the overall approach to the programme and focus particularly on the UK wide survey. Our mixed methods online survey collected information on sociodemographic background, brain health and individuals’ views across five key domains. The survey data was analysed using clustering and natural language programming techniques.

Results: Our literature review showed Alzheimer’s disease trials currently do not use any patient-reported outcome measures. Our focus groups (n=41) yielded five key domains in relation to what matters to people when developing new treatments for Alzheimer’s disease. 5807 people completed the survey. Most were female (76.9%), married (63.4%) and living in an urban area (61.8%). The mean age in women was 57.35 (SD=13.8) and 62.88 (SD=13.08) in men. 73% had supported a relative with dementia but only 15.4% had sought help for their own brain health. The largest cluster of responses are associated with “Reading” this cluster accounts for 3107 of the answers given. Closely followed by “Car/Drive” with 2969 answers. Other clusters identified with above 1000 answers are “Walk”, “Garden”, “Cook”, “Understand”, “Chat”, “Remember” and “Shop”.

QOP3.3. Can an early diagnosis of dementia help people to live longer? A study of electronic health care records

COUCH Elyse, MUELLER Christoph, PERERA Gayan, LAWRENCE Vanessa, PRINA Matthew

King's College London, London, United Kingdom

Background: Diagnosing dementia early is a cornerstone of many European National Dementia Strategies. However, without reliable biomarkers or diagnostic tests, diagnosing dementia early and studying its potential benefits is challenging. Mild Cognitive Impairment (MCI) is considered to be prodromal to dementia, therefore a diagnosis of MCI could facilitate an earlier diagnosis of dementia. Similarly, studying people with dementia who received a diagnosis of MCI before dementia presents researchers with the opportunity to explore the benefits of diagnosing dementia early. 

Aim: This study aimed to test whether a diagnosis of MCI before dementia can be used as an indicator for early diagnosis. Additionally, we investigated whether people with an early diagnosis of dementia had a reduced risk or mortality.

Methods: We studied the medical records of 18,557 people who had been diagnosed with dementia by South London and Maudsley NHS in London. Participants were divided into two groups: those who were diagnosed with MCI before their dementia (referred to as the early diagnosis group) and those who were not. We compared the profile of dementia-related symptoms at dementia diagnosis and tested whether those with an early diagnosis had a reduced risk of mortality.

Results: 5.5% (1,030) of participants in our sample had an early diagnosis of dementia. People with an early diagnosis had fewer cognitive, functional, and psychiatric problems at dementia diagnosis. Participants with an early diagnosis also had a 14% reduced risk of mortality, when adjusting for physical and mental health and physical functioning.

Conclusions: A diagnosis of MCI before dementia is a useful proxy for investigating the benefits of diagnosing dementia early. In this sample, an early diagnosis was associated with a reduced risk of mortality. Understanding the benefits of diagnosing dementia early could help people with suspected dementia make an informed decision about when to seek a diagnosis.

QOP3.4. How is migration background considered in the treatment and care of people - a comparison of national dementia care guidelines in Europe


1German Center for Neurodegenerative Diseases, Greifswald, Germany, 2University Medicine Greifswald, Institute for Community Medicine, Greifswald, Germany

Background: People with migration background (PwM) are a vulnerable group regarding dementia. Providing care for them is a public health challenge in Europe. Many countries are issuing care guidelines, but a systematic overview of their migration reference is lacking. This study aims to determine the extent to which care guidelines consider PwM, which migration-related content focuses are set, and whether recommendations are made to ensure appropriate care for PwM.

Methods: This study is a systematic analysis of national dementia care guidelines of the EU and EFTA countries. Using the discourse analysis model by Keller (2011), n=43 documents from n= 24 EU and n=3 EFTA countries were systematically screened for migration references via keyword and context analysis. The content of the migration-related section was paraphrased, memos and comments were added and the individual text passages were coded.

Results: 27 of the 35 EU- and EFTA countries have national care guidelines for people with dementia and twelve refer to migration. Norway, Sweden, and Northern Ireland refer to this topic in detail. The focus of the migration-related guidelines is on early detection and dementia diagnosis. The main message is that standardized diagnostic tools such as the Mini-Mental State Examination are not suitable for linguistic minorities. Nine countries make recommendations for the care of PwM and dementia but only Norway, Sweden, and Denmark point to available healthcare services. A key recommendation is that the linguistic and cultural background of people should be considered when selecting diagnostic tests. Several countries refer to the validity of the Rowland Universal Dementia Assessment Scale for PwM.

Conclusions: The topic of migration plays a subordinate role in the care guidelines of European countries. Almost all countries lack appropriate diagnostic tools and healthcare services for PwM. Consequently, PwM are a risk group for underdiagnosis and a lower level of care.

QOP3.5. Do medicines regulators adequately address the public health needs in Alzheimer’s disease?

LASSEN Anders1, MORANT Anne1, MORANT Anne2, LASSEN Anders1

1Lundbeck, Valby, Denmark, 2Lundbeck, Copenhagen, Denmark

Regulatory agencies such as the US Food and Drug Administration (FDA), the European Medicines Agency (EMA), and the Japanese Pharmaceuticals and Medical Devices Agency (PMDA) play a central role in facilitating development and eventually the availability of new treatments to patients by partnering with sponsors to discuss and provide guidance for development of novel drugs.

The regulatory guidelines are highly valuable information sources for sponsors to understand the regulatory thinking on drug development within the given therapeutic area and provide a great starting point for dialogue between sponsors and regulators.

Unlike many other therapeutic areas, regulatory guidelines for the clinical development of drugs to treat Alzheimer’s disease (AD) are available from three agencies, i.e., FDA, EMA, and PMDA.

Harmonization of regulatory recommendations and requirements has an important impact on global drug development in AD and other disease areas, but an important question remains: Does the overall scope of the guidelines reflect the public health needs in Alzheimer’s disease?

The presentation will be based on our recently published review of the current US, EU and Japanese regulatory therapeutic development guidelines for AD;[1] the scope can be adjusted as needed to ensure coherence with other presentations included under the same overall topic.

[1] Morant AV, Vestergaard HT, Lassen AB, Navikas V. US, EU, and Japanese Regulatory Guidelines for Development of Drugs for Treatment of Alzheimer's Disease: Implications for Global Drug Development. Clin Transl Sci. 2020 Feb 10. doi: 10.1111/cts.12755. [Epub ahead of print]

QOP3.6. Assessing the effect of prescription rate of anticholinergic medications on cognitive decline


Queen's University Belfast, Belfast, United Kingdom

A dementia diagnosis is often associated with increased medication use. Some of these medications which are routinely prescribed to people with dementia, including antipsychotics and antidepressants, have anticholinergic properties which block the neurotransmitter acetylcholine. The long-term use of anticholinergic drugs is likely to contribute to cognitive decline and to increase the risk of a dementia diagnosis. This retrospective study analyses data for over 8,000 older adults from the Northern Ireland Longitudinal Study of Ageing database to evaluate the effect of the anticholinergic drugs on cognitive skills. Demographic and medication data from older adults’ health assessment and a computer-assisted personal interview was matched with their performance on cognitive tasks, such the Mini Mental State Examination, the Montreal Cognitive Assessment and an animal recall task. Results are discussed in terms of the effect of a high rate of anticholinergic medication use and the overall cognitive decline, as well as decline in specific cognitive skills.

QOP3.7. Risk factors for dementia: a retrospective study assessing predictors of dementia in Northern Ireland


Queen's University Belfast, Belfast, United Kingdom

Several factors increase the likelihood of developing symptoms of dementia. Some of these factors are identified in midlife and late-life and they can be modifiable, such as smoking and physical exercise. These factors are likely to reduce the risk of receiving a dementia diagnosis in later life. This retrospective study analyses data from a large portion of the population in Northern Ireland that is collected by General Practitioners and is linked through the GP Intelligence Platform (GPIP) and the Honest Broker Service. This data will be cross-referenced with data from the Enhanced Prescribing Database that holds information about medication prescriptions. Over 25,000 people with dementia have been identified between 2010 and 2016 through prescriptions of dementia management medication, while the control group consists of people without dementia. Results are discussed in terms of the risk of receiving a dementia diagnosis based on modifiable and non-modifiable risk factors, including comorbidities and life style, such as smoking.  

QOP3.8. The association of depression with structural brain markers and cognitive impairment: The Maastricht Study


Maastricht University Medical Center+, Maastricht, Netherlands

Background: The risk of dementia is increased for older people with major depressive disorder (MDD). The underlying etiology remains unclear. Clinical studies suggest that depression is related to brain atrophy and cerebral small vessel disease (CSVD), which are themselves related to cognition. We studied the associations between depression, structural brain markers and cognitive impairment in a general population aged between 40 and 75 years.

Method: We used cross-sectional data from the Maastricht Study (n=4,734; mean age 59.1±8.6 years, 50.2% women), which, by design, oversampled participants with type 2 diabetes. A current episode of MDD (n=151) was assessed by the Mini-International Neuropsychiatric Interview. Volumes of cerebral spinal fluid, white matter, grey matter and white matter hyperintensities, presence of lacunar infarcts and cerebral microbleeds, and total CSVD burden were assessed by 3 Tesla MRI. Multiple linear and logistic regression analyses tested the associations between MDD, brain markers and cognitive functioning in memory, information processing speed, and executive functioning & attention, and presence of cognitive impairment. Structural equation modeling was used to test mediation.

Results: In fully adjusted models, MDD was associated with lower scores in information processing speed (mean difference=-0.18[-0.28;-0.08]), executive functioning & attention (mean difference=-0.13[-0.25;-0.02]), and with higher odds of cognitive impairment (OR=1.60[1.06;2.40]). MDD was associated with CSVD in participants without type 2 diabetes (OR=1.65[1.06;2.56]), but CSVD or other markers of brain atrophy or CSVD did not mediate the association with cognitive functioning.

Conclusion: MDD is associated with cognitive impairment, worse information processing speed and executive functioning & attention. CSVD burden was higher in depressed participants without type 2 diabetes, but did not explain their worse cognitive profile. Longitudinal studies are needed to examine the role of structural brain damage in the development of cognitive impairment and dementia in depression.

QOP3.9. Traumatic brain injury, childhood adversity and the long-term effects on adult outcomes and dementia: a Dementias Platform UK (DPUK) multi-cohort study


University of Oxford and Dementias Platform UK (DPUK), Oxford, United Kingdom

The consequences of traumatic brain injuries (TBI) on long-term cognitive and neurobiological outcomes is poorly understood however, there is support for evidence which suggests those who have experienced a TBI in younger adulthood experience diminished cognitive reserve which may accelerate cognitive deficits, premature cognitive decline and dementia risk (Wood, 2017). Furthermore, individuals who have experienced traumatic emotional experiences in younger years, also known as adverse childhood experiences (ACEs), a broad construct encompassing overall extreme difficulties and adverse experiences during childhood such as sexual, physical and emotional abuse, deprivation, and family dysfunction (e.g., McLaughlin, 2016) are at risk of adult depression (Liu, 2017), lower adult life satisfaction (Hughes et al., 2016) and dementia (Radford et al., 2017). We conducted a cross-platform cross-cohort investigation interrogating three Dementias Platform UK (DPUK) population cohorts to investigate self-report retrospective TBIs and ACEs as determinants of adult outcomes including cognition and dementia. Results suggest that there are significant negative effects of early adversity on longitudinal mental health and cognition.

QOP3.10. With Alzheimer's in the Alps


Expertisecentrum Dementie Vlaanderen, Mechelen, Belgium

Most reports on early onset dementia (EOD) deal with deficits and deterioration. Yet, subjects hit by EOD seek for ways to deal with the condition. Together with their families, they try to find meaning, challenges and new balances despite the condition. In September 2020, four people with Young Dementia and their buddies/partners stepped into the Italian Alps, under the guidance of the 'Brain Adventure Team', a group of enthusiastic doctors and care workers who will experience an adventurous holiday together with people with EOD. During the hike the goal was to enjoy nature but also to make a travel guide which could then be used to give other groups of people with EOD the opportunity to make a accompanied tour in the Alps. The travel guide is unique because it was written together with people with EOD: their ideas, their warnings, the dangers during the trip, the altitude differences, the meals, the importance of a good night's sleep, but also how to prepare for such an adventure are described. What is very special is that in the travel guide we named 'With Alzheimer's in the Alps', in addition to the whole route, a special connection was made with the local hotel managers so that they are well prepared if groups of people with dementia come to stay in the future. The outcome of this adventure demonstrated that people with EOD are still capable of great performances if they are surrounded by a supportive and stimulating environment. In his epilogue to the travel guide, Mario Possenti, Secretary General of the Italian Alzheimer's Federation, writes that "this unique guide makes it clear that there are open and welcoming places for people with EOD. In this way they can exercise their right to participate actively in society". 

QOP3.11. The course of quality of life and its predictors in nursing home residents with young-onset dementia

PU Lihui1, KOOPMANS Raymond2, BAKKER Christian2, APPELHOF Britt2, ZWIJSEN Sandra A.3, TEERENSTRA Steven2, SMALBRUGGE Martin3, VERHEYG Frans R.J.4, DE VUGT Marjolein E.4, ZUIDEMA Sytse U.5, KOOPMANS Raymond T.C.M.2

1Griffith University, Upper Mount Gravatt, Australia, 2Radboud University, Nijmegen, Netherlands, 3Amsterdam University, Amsterdam, Netherlands, 4Maastricht University, Maastricht , Netherlands, 5Groningen University , Groningen, Netherlands

Objective: To explore the course of quality of life (QoL) and possible person-related predictors associated with this course in institutionalized people with young-onset dementia (YOD).

Design: An observational longitudinal study.

Setting and Participants: A total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands.

Methods: Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. QoL was assessed with proxy ratings, using the Quality of Life in Dementia (QUALIDEM) questionnaire at four assessment points over 18 months. Predictors included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms and psychotropic drug use at baseline. Multilevel modeling was used to adjust for the correlation of measurements within residents and clustering of residents within nursing homes.

Results: The total QUALIDEM score (range: 0–111) decreased over 18 months with a small decline of 0.65 (95% Confidence Interval -1.27, -0.04) points per six months. An increase in several domains of QoL regarding “Care relationship”, “Positive self-image”, and “Feeling at home” was seen over time while a decline was observed in the subscales “Positive affect”, “Social relations”, and “Having something to do”. Residents with more advanced dementia at baseline showed a more progressive decline in QoL over time. Sensitivity analyses indicated a more progressive decline in QoL for residents who died during the follow-up.

Conclusion and Implications: The total QoL in nursing home residents with YOD remained relatively stable over 18 months. However, different domains of QoL showed multidirectional changes. Early assessments may identify the most affected domains of QoL and allow for interventions tailored to the care needs of young residents with dementia. QoL in people with severe dementia and end of life stage should receive more attention in future research.

QOP3.12. Development of a web-based support program for caregivers of persons with frontotemporal dementia

BRUINSMA Jeroen1, PEETOOM Kirsten1, BOOTS Lizzy1, BAKKER Christian2, DE VUGT Marjolein1, VERHEY Frans1

1Department of Psychiatry and Neuropsychology / Alzheimer Center Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, Netherlands, 2Radboud University Medical Centre, Radboud, Department of Primary and Community care, Nijmegen, Netherlands

Frontotemporal dementia is characterized by profound changes in behaviour and personality that often onset at young age. It is known that FTD causes unique challenges for the caregivers involved as they often have to cope with socially awkward, disinhibited or compulsive behaviour in their relative. As a result, caregivers of persons with FTD have specific support needs and often do not recognize themselves in the currently available support services, as most are aimed at caregivers of persons with Alzheimer’s dementia. Therefore, we aim to tailor the evidence-based self-management intervention “Partner in Balance” (PiB) to the needs of FTD caregivers, in close collaboration with the target group.

Methods: To tailor the PiB-intervention to the needs of FTD-caregivers, we used the Medical Research Council Framework as a guideline and (1) analysed the results of previously conducted feasibility trials on PiB, (2) organized three focus group discussions with 24 caregivers of persons with FTD, and (3) consulted field experts, healthcare professionals and FTD caregivers during the developmental process. 

Results: Based on this iterative process twelve new modules for FTD caregivers were developed. These modules focus on themes such as: acceptance, coping strategies, social support, family life, sexuality and intimacy, heredity aspects, and coping with language or behavioural changes. Each module contains (1) a video vignette in which FTD caregivers share their experiences, (2) psychoeducation with narrative stories and tips from FTD caregivers, (3) a self-reflection assignment, and (4) a step‑by‑step change plan. Currently, a trial is conducted that includes 15 caregivers to examine the feasibility of these newly developed modules by means of qualitative and quantitative measures. 

@AE2020: At the upcoming Alzheimer Europe conference, we hope to emphasize the importance of appropriate support for FTD caregivers by presenting the first results of this feasibility trial in the context of the iterative development process.

QOP3.13. Representing a patient’s dementia pathology using an auto-generated Dementia Biomarkers Report


GE Healthcare, Amersham, United Kingdom

Background: Current research accepts that a combination of imaging biomarkers can provide refinement in the assessment of risk of clinical progression for patients experiencing cognitive impairment. Imaging biomarkers of dementias obtained using PET and MRI are playing an increasingly important role in dementia research, although practical clinical application of imaging biomarkers to individual patients has yet to see wide adoption. In this work we present an automated analytics solution, the Dementia Biomarkers Report (DBR) app, which is intended as a diagnostic aid for the clinical workup of individuals manifesting symptoms of preclinical dementia.

Methods: The DBR app generates an individualised biomarker report of dementia pathology, referred to as a Dementia Biomarkers Report. The patient’s DBR is comprised of biomarker data automatically extracted from the patient’s PET and MRI scans using neuroimage analysis tools. The DBR app synthesises the biomarker values into a short PDF report, which reports an age-matched classification of biomarker normality or abnormality using A/T/N notation.

Results: The first page of the DBR enumerates imaging biomarkers that have associations with different dementia pathologies. A “+” sign indicates an abnormal biomarker value, defined as being in the 5% tail of an age-matched distribution of cognitively normal (CN) subjects (derived from fitting a distribution to 314 PET-MR datasets). The second page shows how the patient’s biomarker values compare to CN subjects across an age range from 50-90Y. The third page serves as a visual quality control check of the automated analyses. Case study: subject had amnestic MCI and transitioned to AD 2.5Y from baseline imaging date. Their DBR – obtained at baseline – reported presence of Alzheimer’s pathology (A+), with evidence of hippocampal neurodegeneration (N+), suggesting the progressive degeneration phase had started.

Conclusion: We have proposed the Dementia Biomarkers Report as an aid in the differential diagnosis of dementia.



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