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PL1. Diagnosis and post-diagnostic support

Detailed programme, abstracts and presentations

PL1.1. Improving the diagnosis, post-diagnostic support, care and inclusion of people with dementia: The findings of the 2nd European Joint Action on Dementia


NHS Education for Scotland, United Kingdom

Throughout the development of national policies on dementia, there had been a focus on improving diagnosis rates and early detection.  However, despite best efforts we are still a long way from achieving this aim.  As part of the EU Joint Action Act on Dementia we have explored practical and attitudinal reasons why delays are still happening.  We also look at the case for why a late diagnosis can potentially harm to the person with dementia and their carers, and makes the case more strongly about “why” clinicians need to improve their confident in earlier diagnosis.  Many states are also looking carefully at how the newly diagnosed are supported to adjust to their diagnosis and to plan their support needs.  Whilst there is much excellent guidance and good practice available we have looked further at how a good care management and crisis response and planning can make a positive difference to the post diagnostic care of people living with a dementia diagnosis live well and safely in their communities. 

The inclusion of people with dementia has to be a fundamental part of planning services and developing community based responses to the challenges of a growing population of people living with dementia and we have explored this in terms of the key components of effective dementia friendly communities.

Act on Dementia provides:

  • practical guidance for policymakers on developing and implementing national dementia plans, policies and strategies
  • cost-effective and practical examples of the core components of good dementia diagnosis, care and support.

Four central work packages are identified:

  • diagnosis and post-diagnostic support
  • crisis and care coordination
  • residential care
  • dementia-friendly communities.

PL1.2. Research leading to better diagnosis and care in memory clinics – findings from the ABIDE project


Amsterdam UMC, Amsterdam, Netherlands

The advances in diagnosis of AD using MRI, markers in Cerebrospinal Fluid (CSF), and amyloid-imaging using PET are among the largest successes of AD research. Nonetheless, in a large proportion of patients, a diagnosis is only made in a late disease stage. A better and timely diagnosis would be very beneficial, as patients can receive help quicker and more effectively.

ABIDE is a Dutch project that aims to improve AD diagnosis in memory clinics, by promoting effective application of MRI, CSF, and PET for diagnosis of MCI and AD in memory clinics, taking into account patients’ perspective and wishes on their use.

In this lecture, innovations in diagnosis will be discussed with a focus on practical implications at everyday memory clinics. We developed individualized risk models that allow estimation of probabilities of progression from MCI to dementia, taking into account patients’ characteristics. The risk models are integrated in an easy to use app, called the ADappt. An audiotape study provides a sneak preview in the consulting room with patients, caregivers and professionals, and shows that patient-doctor communication to date is a rather one-direction street and only limited information is provided on a patients’ personal prognosis. A Delphi study resulted in a core topic list on which patients, caregivers and professionals agree that these should be discussed during the diagnostic process, and this could help to empower patients/caregivers and provide doctors with a guideline on how to incorporate shared decision making in the AD diagnostic process.

With the development of new diagnostic tests, we enter an era where we can actually start to translate findings from science to everyday clinical practice. Tools to support the diagnostic process, may act as a catalyst for quicker and more effective diagnosis. Diagnosis of AD should be personalized, in terms of both patient biology and preferences.

PL1.3. After the diagnosis… what next? Post-diagnostic support for people with dementia and their families

BRODATY Henry1, LOW Lee-Fay2, PHILLIPSON Lyn3, RAIT Greta4, ROBINSON Louise5, RYMASZEWSKA Joanna6, SWAFFER Kate7, VEDEL Isabelle8, VERHEY Frans9

1UNSW Sydney, Australia, 2University of Sydney, Sydney, Australia, 3University of Wollongong, Wollongong, Australia, 4UCL, London, United Kingdom, 5University of Newcastle, United Kingdom, 6Wroclaw Uni, Wroclaw, Poland, 7Dementia Alliance International, Adelaide, Australia, 8McGill University, Montreal, Canada, 9Maastricht University, Maastricht, Netherlands

Despite clinical guidelines on how to make a dementia diagnosis, communicate the diagnosis and provide post-diagnosis support, rates of dementia diagnosis remain suboptimal. Even when a diagnosis is made, it is not always communicated or communicated appropriately. When given the diagnosis, persons living with dementia (PLWD) and their care partners often receive insufficient information and have negative experiences. Post-diagnostic support is negative or lacking and does not focus on quality of life.

Personal, patient and health system-related and societal factors influence behaviours of persons living with dementia, care partners and health practitioners. Fear and stigma (including self-stigma), cultural beliefs and the desire to protect family members affect help-seeking intentions. GPs report a lack of knowledge, time, skills and confidence in diagnosis, its communication and subsequent care of dementia. They worry about distressing their patients and find communicating the diagnosis difficult, avoid discussing prognosis and would like more training. Anti-stigma campaigns, mass media and educational programs, public campaigning and working with health professionals may assist.

COGNISANCE aims to co-design and deliver in partnership with PLWD, family care partners and health care professionals, toolkits and campaigns to improve the dementia diagnostic process and post-diagnostic support in Australia, Canada, the Netherlands, the UK and Poland; and to evaluate the campaigns. COGNISANCE will provide a new internationally adaptable set of recommendations, toolkits for persons with dementia, care partners and health care practitioners on how to make the diagnostic process and post-diagnostic care as positive an experience as possible, and a playbook to assist other countries with implementing their own change campaigns.

COGNISANCE is funded nationally and awarded through the JPND.



Last Updated: Wednesday 11 December 2019


  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche