The Alzheimer’s disease patient journey

The Alzheimer’s disease patient journey starts with detection and progresses through to diagnosis, management, and monitoring. A multidisciplinary team plays a central role in this journey to ensure optimal care, as discussed by experts from Amsterdam, the Netherlands, in three satellite symposia at EAN 2021.

A conceptual framework for a patient-centered diagnostic journey for individuals in the early stages of Alzheimer’s disease (AD) and an evolving, transdisciplinary care team has been developed by an international working group from diverse specialties.1

Building and strengthening the integrated dementia care team is critical to provide optimal patient care, said Professor Jort Vijverberg.

Detection and referral to the dementia care team

Strategies are needed to increase awareness of early Alzheimer’s disease

To identify people with early AD who may benefit from treatment it is important to increase awareness of early AD in the general population and among healthcare professionals (HCPs), said Dr Niels Prins. Taking into account diverse clinical, socioeconomic, and cultural settings, awareness-increasing strategies include:

  • Educating non-dementia trained HCPs such as primary care practitioners, nurses, and cardiologists1
  • Training HCPs to detect, assess, and support patients, and to refer patients to the dementia care team1
  • Designing an accessible diagnostic process to detect early AD and help HCPs decide whether a patient continues with the full diagnostic process

 

Diagnostic testing

Patients want to know the goal and possible outcome of diagnostic tests

Many different cognitive, biomarker, and imaging investigations are used to confirm AD and inform treatment options, said Professor Wiesje van der Flier.

Close communication with patients is essential throughout the diagnostic testing process, she added; and a Delphi consensus study involving healthcare professionals, patients, and caregivers has identified that it is most important to discuss the following four topics:

  • The goal of the diagnostic test
  • Reasons why a test cannot be done
  • The possible outcome of the test
  • Considerations in deciding whether to do or not to do a test2

 

Monitoring and management

Current pharmacologic interventions improve cognition and function but do not change the course of Alzheimer’s disease

Alzheimer’s disease is a journey not a destination, said Professor Vijverberg, and after a diagnosis of AD, most patients and spouses wish to “carry on as usual.”3

In his practice in Amsterdam, the specialist dementia team allow patients time to think about the diagnosis, and then provide them with information on pharmacologic and non-pharmacologic interventions by. The patient’s wishes are central, he added.

Current pharmacologic interventions are symptomatic treatments and are used to improve cognition and function.4

Non-pharmacologic interventions include cognitive stimulation therapy, which also improves cognition,5 and lifestyle interventions, such as exercise and healthy nutrition to improve general health. A specialised nurse provides appropriate guidance and support.

Alzheimer’s disease is a journey not a destination

The patient’s cognition and behavior is monitored occasionally by the dementia specialist, who also provides support as needed for families and friends to help them adapt to the changes that occur.

Finally, it is important to provide information about clinical trial routes, said Professor Vijverberg. In Amsterdam, a specialist team identifies patients for appropriate clinical trials and informs them about the potential benefits and risks so the patients can decide whether to take part.

Information about ongoing research and clinical trials can also be obtained by joining a registry.6

 

These satellite symposia were organised and funded by Biogen.

 

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Our correspondent’s highlights from the symposium are meant as a fair representation of the scientific content presented. The views and opinions expressed on this page do not necessarily reflect those of Lundbeck.

References
  1. Galvin JE, et al. Early stages of Alzheimer’s disease: evolving the care team for optimal patient management. Front Neurol 2021;  https://doi.org/10.3389/fneur.2020.592302.
  2. Fruijtier AD, et al. BIDE Delphi study: topics to discuss in diagnostic consultations in memory clinics. Alzheimers Res Ther 2019;11:77.
  3. Bronner K, et al. Which medical and social decision topics are important after early diagnosis of Alzheimer’s disease from the perspectives of people with Alzheimer’s disease, spouses and professionals? BMC Res Notes 2016;9:149.
  4. Jessen F. What are we trying to prevent in Alzheimer disease? Dialogues Clin Neurosci 2019;21:27–34.
  5. Chen J, et al. Different durations of cognitive stimulation therapy for Alzheimer’s disease: a systematic review and meta-analysis. Clin Interv Aging 2019;14:1243–54.
  6. AlzForum. Clinical trial registries. Available at: https://www.alzforum.org/clinical-trial-registries. Accessed 27 June 2021.

 

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