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PL3. Detection and timely diagnosis

Detailed programme and abstracts

PL3. Detection and timely diagnosis

PL3.1. The impact of receiving a diagnosis of dementia


This presentation will address the challenges of living with a dementia diagnosis within a wider human rights context.  It will specifically highlight the denial of rights that people living with dementia experience and how this, in turn, impacts on diagnosis and post-diagnosis supports. Drawing on lived experience and the wisdom of experiential knowledge, Helen Rochford Brennan provides a unique insight into living with dementia and realising her rights. Addressing issues such as stigma, social inclusion and equity, this presentation highlights how a human rights based approach to diagnosis can support people to live well with dementia. 

PL3.2. Asymptomatic and prodromal Alzheimer’s disease – an opportunity for dementia prevention?


Major advances in the understanding of the biology of Alzheimer’s disease before dementia develops have created opportunities for preventing dementia onset. To achieve this we need to be able to identify those people at the earliest stage of disease (based on cognitive impairments, risk factors [e.g. genetics], biomarker abnormalities and changes in these factors over time). Once identified, we need to match treatments (including risk factor modification) onto the individual’s profile. These tasks are not without substantial challenges.

These challenges though are being addressed with major, linked global initiatives including the leading European Prevention of Alzheimer’s Dementia (EPAD) Programme. EPAD started in early 2015 funded by the IMI (Innovative Medicine’s Initiative) and involves 36 academic, SME and pharmaceutical partners as well as Alzheimer’s Europe, It will deliver a standing, adaptive proof-of-concept trial, which can accommodate the testing of multiple putative disease modifying therapies concurrently. It also involves the development of a readiness cohort, which can also be used to improve the disease modeling and risk stratification noted above. The project also raises issues about the ethics of risk disclosure and engagement with the public as EPAD develops has been core to understanding these and other factors.

The basis for secondary prevention of Alzheimer’s Dementia will be presented as will a detailed review of the methodological approach and objectives of EPAD and progress made thus far.

PL3.3. Improving the diagnosis and post-diagnostic support of people with dementia


The appropriate time for receiving a diagnosis depends on several factors. A clinical diagnosis of a dementia disease requires symptoms, and these symptoms should cause concern for the patient and/or the caregiver. To be useful, the diagnosis should have a certain accuracy. Early in the disease course with very mild symptoms, the accuracy can be quite low. However, with better diagnostic tools, the underlying brain disease can be detected very early in the course of the disease. Techniques such as imaging of protein accumulations in Alzheimer’s Disease or imaging of functional brain activity are being implemented across Europe to increase diagnostic accuracy in patients with uncertain diagnoses. But how early should and could we give a diagnosis? Going too early in patients with questionable symptoms, we may diagnose an underlying brain disorder which constitutes a risk factor for subsequent dementia. Without effective treatment of this risk factor, the benefits for the patient can be questioned. On the other hand, in patientswithsymptoms, an early and accurate diagnosis leads to better targeted pharmacological and non-pharamcological treatment, including early information and support. It is important to inform about the support available after a dementia diagnosis, including the the supportive role that family, friends, and health professionals can provide to minimize the negative effects of a diagnosis. Multi-disciplinary memory clinics or close collaboration between primary and secondary sectors can provide such information and support. Thus, even though no effective curative treatment exists at the moment for most of the progressive dementia disorders, concerns from patients and caregivers should be taken seriously and followed up by an appropriate evaluation program.

PL3.4. Improving diagnosis rates: an essential element of national dementia strategies


In this presentation the importance of improving the opportunities for an early, timely diagnosis of dementia will be explored in the context of the shift towards a more person-centred and rights-based approach to dementia.

The presentation will look at the way in which the construct of diagnosis and post-diagnostic support can be driven by a social model of dementia and an inclusive approach towards the maximum use of individual strengths, community assets and natural supports.

The presenter will argue that national dementia strategies can use a drive towards improving diagnosis as a method of transforming the rights to choice, power and control for people with dementia and their carers and can shift the focus of understanding away from a medical model towards a more social model of empowerment and inclusion. 



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