Can we move towards earlier diagnosis for Alzheimer’s? (Guest blog)
26.11.20
We now have scientific consensus that the telltale signs of Alzheimer’s disease (AD) can appear in the brain 10 to 20 years before patients experience any change in thinking or memory [1]. But detection and diagnosis of Alzheimer’s and other dementias occur late, if at all [2]. If a new medicine can successfully slow the damage done by this progressive disease, early detection and timely diagnosis will be essential to deliver the prompt treatment patients need.
These important facts were discussed by a diverse group of stakeholders during the 2020 Alzheimer Europe Conference and outlined in the latest EFPIA paper “Alzheimer’s Disease Health System Readiness – The Time to Act is Now”. Early recognition of AD is the first step towards providing patients with optimal opportunity for intervention, treatment, and involvement in clinical trials. A timely diagnosis can provide better care today and accelerate future treatments [3].
So where is the problem? Currently a significant proportion of AD dementia cases remain undiagnosed or receive a late stage diagnosis [4],[5],[6],[7]. How to move diagnosis earlier isn’t entirely clear, but we know it will take collaboration across multiple organizations.
This is why MOPEAD came about. This EU-IMI2 funded project aimed to improve patient engagement and greater identification of early stage AD and risk of symptomatic AD through citizen’s participation. A European network of scientific experts, non-profit organizations, academics and industry partners united forces, passion and know-how to shift the late diagnosis paradigm in AD, and I had the privilege to work with this group of passionate individuals for the three years of the project.
The MOPEAD project was conceived to explore four innovative prescreening strategies to identify ‘hidden cases’ of AD and to raise awareness both in the general public and among health professionals about the importance of timely diagnosis of cognitive impairment. These prescreening strategies included a Web-based initiative aimed to direct the general public to a web-based prescreening tool; the Open house initiative making specialized memory clinics accessible to anyone worried about their memory (avoiding the usual requirement for a doctor referral); the Primary care initiative providing easily administered tools to primary care physicians; and the Diabetic clinics initiative with specific protocols for assessing the risk of dementia among patients attending the diabetology offices.
Individuals at risk of dementia identified through these initiatives were then referred to specialized memory clinics to undergo a harmonized clinical evaluation to obtain a clinical diagnosis.
MOPEAD was implemented in five European countries: Germany, the Netherlands, Slovenia, Spain and Sweden. The cultural and socioeconomic differences between countries imply that while the principles may be universal, the best local patient engagement strategy could be different for each country. It is possible that one or two or a combination of more methods could be the best way for patient engagement [8].
Overall, we witnessed a high variability both per age and by country, but we found that the four initiatives were quite complementary as they showed to be targeting different populations. For instance, while population-based initiatives (Web-based and Open House) tended to enroll younger individuals (and mostly females), participants in the patient-based strategies (Primary care and Diabetic clinics) were older and with higher proportions of males.
Despite the low recruitment experienced with the Primary care office and diabetologist, the proportion of individuals with a positive result was higher among patients undergoing these prescreening methods. Online testing had the highest rate of test completion and the Open House had the best performing detection of hidden cases, with the highest proportion of positive pre-screened who were willing to complete the diagnostic path.
Over 3 years, as a proof concept study, MOPEAD provided reproducible models for early diagnosis [9], educated health professionals and citizens, produced and shared learnings such as Policy recommendations and a Gender Policy Brief and will soon share the learning around the cost-effectiveness data of each of the models as well as a survey results on the healthcare practitioner attitude to early diagnosis.
I am happy to have played a role in such a great project knowing we have added a small but significant piece to the Alzheimer’s disease puzzle, contributing to addressing the barriers that prevent early patients to be identified in a timely manner and ultimately cared about. Most importantly, I am proud that the project tackled the issue of putting the choice to participate in a clinical trial back in the patient’s hands by identifying them early enough, when the choice is still theirs to make.
Lilly has been committed for over three decades to bring innovative Alzheimer’s disease therapies and diagnostics to patients. Lilly supported the MOPEAD Initiative because a timely diagnosis opens the opportunity to participate in clinical trials. More patients in clinical trials raise the chances of a breakthrough that slows the progression of the disease. While no medicine has demonstrated a clear effect against Alzheimer’s in clinical studies, researchers aren’t giving up. Many biopharmaceutical companies continue to take risks to study potential Alzheimer’s treatments, using every setback to advance our understanding of the disease. And when a breakthrough medicine arrives, earlier detection will allow patients to get it when they’ll benefit most—before their disease has impaired their thinking, memory and function.
[1] “Beta-amyloid and the amyloid hypothesis.” Alzheimer’s Association. March 2017. Available here.
[2] T. Eichler et al., “Rates of Formal Diagnosis in People Screened Positive for Dementia in Primary Care: Results of the DelpHi-Trial.” Journal of Alzheimer’s Disease, 2014, 42 (2), 451–458, available here.
[4] Balasa M et al. Neurology. 2011;76:1720-1725
[5] Boise L et al. Am J Alzheimers Dis Other Demen. 1999;14:20-26
[6] Beach TG et al. J Neuropathol Exp Neurol. 2012;71:266-273
[7] Boustani M et al. Ann Intern Med. 2003;138:927-937
[8] The MOPEAD project: Advancing patient engagement for the detection of "hidden" undiagnosed cases of Alzheimer's disease in the community. Available here.
[9] Ibid.
