The Essential Role of Value Assessment in Addressing the Global Dementia Crisis
Paola Barbarino, MA, Chief Executive Officer, Alzheimer’s Disease International, London, England, UK
As people, families, and societies struggle with the rapidly growing challenge of Alzheimer’s disease and dementia, there is an urgent need for robust and sustained responses in countries around the world, ranging from risk reduction to early diagnosis to postdiagnostic support, interventions, and care. Leaders and experts must collaborate across sectors to chart a path forward, especially given the potential for new dementia treatments, diagnostics, and interventions.
Value assessment is fundamental to ensuring these efforts deliver the support that people and families need. Only by building consensus on how to appropriately assess value in dementia can we ensure that new advances reach all who need them. To inform this discussion, the pieces in this supplement provide perspectives from leading experts in the field: the first piece frames the core issues, elements, and questions of value assessment1; the second applies the lens of health equity2; and the third considers the need for long-term value demonstration.3 All 3 of these topics are critical as stakeholders work together to improve care, find a cure, and, most importantly, ensure that all people and families affected by dementia receive the support they need.
The Need for Investment in Dementia Has Never Been Greater
The past year has illustrated the importance of investing in strong, sustained, and proactive responses to global health challenges, such as Alzheimer’s disease and dementia. The COVID-19 pandemic has exposed the huge cost of governments’ underinvestment in health and care systems—in low-, middle- and high-income countries, alike. People with dementia have been especially vulnerable, both in terms of the high mortality associated with COVID-19 and in dealing with social isolation, as well as through the closing of services across the health continuum. COVID-19 also offers an important comparison for the global dementia crisis, which must be met with similar levels of urgency, coordination, and investment.
At Alzheimer’s Disease International (ADI), the global federation of Alzheimer associations, we see the impact of COVID-19 on dementia diagnosis as especially concerning. As COVID-19 spread, people were understandably reluctant to visit clinics and seek help for early signs of cognitive impairment, as many of the members of our Medical and Scientific Advisory Panel reported early in the pandemic. These impacts now threaten to exacerbate the long-standing challenges in dementia diagnosis, which are at the heart of the dementia crisis.
"It is perhaps unsurprising that as few as 10% of those living with dementia in low- and middle-income countries receive a formal diagnosis." —Paola Barbarino, MA
As a result, there is a need for greater focus and investment to enable early diagnosis, postdiagnostic support, and appropriate care and interventions. Currently, there is a lack of the necessary skill and equipment for diagnosis, such as positron emission tomography (PET) scanners, which are prohibitively expensive. There is also a shortage of experts like gerontologists, psychiatrists, and neurologists, especially in low- and middle-income settings. Further, a 2017 OECD report revealed that fewer than 40% of OECD countries were able to estimate national dementia diagnosis rates and that many primary care doctors received less than 12 hours of dementia training.4 Additionally, ADI’s own research shows that 62% of healthcare practitioners, globally, perceive dementia to be a part of normal aging, rather than a condition requiring diagnosis and treatment.5 There is also currently no simple, practical, and scalable blood biomarker test, although there have been some promising developments towards this end.6
Given these challenges, it is perhaps unsurprising that as few as 10% of those living with dementia in low- and middle-income countries receive a formal diagnosis. Even in higher income countries, only around half of individuals receive a diagnosis. And in all countries, lack of access to postdiagnostic support, treatment, and care generates significant barriers to living well.7
Therefore, stakeholders must collaborate and invest to improve diagnostic capacity, postdiagnostic support, and other critical elements of the response to Alzheimer’s disease and dementia. A stronger, coordinated response would allow the millions of people impacted by dementia—including not only the more than 50 million people living with dementia, but also their families and loved ones—to better manage their condition, plan ahead, organize care needs, and access postdiagnostic support services. Early detection also allows people with Alzheimer’s disease and dementia and their families to feel well-prepared and supported, alleviating initial feelings of shock, anger, and grief and providing a sense of reassurance and empowerment.5 Moreover, there is a need to enable early intervention, which can delay the need for formal care, reducing total direct costs and burden, as well as potentially mitigating indirect costs like lost productivity and the impact of caregiving on mental health and well-being.5
Leaders, Experts, and Stakeholders Must Build Consensus on Value Assessment
To address these challenges, policy makers, payers, and other stakeholders must discuss how to appropriately assess the value of diagnostics and interventions for Alzheimer’s disease and dementia. This will be doubly important when new Alzheimer’s disease treatments enter the market. Most prospective drug treatments currently being researched would require diagnosis in the earliest stage (the “prodromal” stage, also called mild cognitive impairment). Signs and markers at the prodromal stage provide valuable information, insights, and potentially an opportunity for intervention—either treatment or risk reduction.
Efforts that realize this potential could deliver significant benefits, as indicated by evidence on dementia’s current burden across society. Globally, dementia generates total costs of $1 trillion annually, and this cost will double in the next decade.8 Informal care makes up 40% of this total cost, with the social care sector also shouldering an enormous 40%, and the medical sector the remaining 20%.9 Stronger responses and interventions can help to mitigate theses costs, as well as improve health equity for older people, vulnerable populations, and other key groups.
"We are on the cusp of significant discoveries that may make it more manageable and give hope to millions." —Paola Barbarino, MA
Further, social support for informal carers is currently lacking, often leading to additional impacts, costs, and burden. Our research shows that more than 50% of carers globally experienced poor health, including mental health, as a result of their caring responsibilities.5 Improving the support services offered to carers is an expensive task, and while this should be a policy priority for all governments, this should also provide evidence to policy makers and payers of the benefit of investing in early detection and intervention. Governments should prioritize data-sharing and harmonization, engaging in initiatives like the World Health Organization’s Global Dementia Observatory. This will assist in demonstrating long-term value, including consensus on outcomes, data, and modeling. Additionally, there is a pressing need for payers, value assessors, and the broader Alzheimer’s community to integrate real-world evidence into long-term value assessments.
The COVID-19 pandemic has shown the capacity for world leaders to find solutions to health challenges when the pressure to do so is great enough. As a matter of equity, governments must invest in dementia responses, and both governments and payers must be primed for a disease-modifying therapy. The economic and social costs of inaction are colossal.
Dementia is rapidly growing around the world. We are on the cusp of significant discoveries that may make it more manageable and give hope to millions. Discussions and decisions about value will play an important role in maximizing the benefits for people, families, and societies. It is our collective responsibility to ensure that there will be viable solutions in our future. We at ADI will continue to advocate for care for today and cure for tomorrow, but that tomorrow may be just around the corner. We cannot afford inaction. •
1. Garrison LP Jr, Baumgart M, El-Hayek YH, Holzapfel D, Leibman C. Defining elements of value in Alzheimer’s disease. Value & Outcomes Spotlight. 2021;7(1S):S7-S11.
2. Basu A, Lynn N, Peschin S, Resendez J. Value assessment in Alzheimer’s disease: a focus on equity. Value & Outcomes Spotlight. 2021;7(1S):S12-S17.
3. Barbarino P, Gustavsson A, Neumann PJ. Long-term value demonstration in Alzheimer’s disease: evidence needs. Value & Outcomes Spotlight. 2021;7(1S):S18-S23.
4. OECD. Care Needed: Improving the Lives of People with Dementia. Published June 12, 2018. https://www.oecd.org/publications/care-needed-9789264085107-en.htm. Accessed January 7, 2021.
5. Alzheimer’s Disease International. World Alzheimer Report 2019: attitudes to dementia. Published September 2019. London, England: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf. Accessed January 7, 2021.
6. Alzheimer’s Disease International. New blood test research for diagnosis of Alzheimer’s disease shows promising results. https://www.alzint.org/news/new-blood-test-research-for-diagnosis-of-alzheimers-disease-shows-promising-results/. Accessed January 7, 2021.
7. Prince M, Bryce R, Ferri C. World Alzheimer Report 2011: the benefits of early diagnosis and intervention. Published September 2011. London, England: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2011.pdf. Accessed January 7, 2021.
8. Wimo A, Ali G-C, Guerchet M, Prince M, Prina , Wu Y-T. World Alzheimer Report 2015: the global impact of dementia: an analysis of prevalence, incidence, cost and trends. London, England: Alzheimer’s Disease International. Published September 21, 2015. https://www.alzint.org/resource/world-alzheimer-report-2015/. Accessed January 7, 2021.
9. Wimo A, Gauthier S, Prince M, on behalf of the ADI’s Medical Scientific Advisory Panel and the Alzheimer’s Disease International Publications Team. World Alzheimer Report 2018: global estimates of informal care. Published July 2018. London, England: Alzheimer’s Disease International. https://www.alzint.org/u/global-estimates-of-informal-care.pdf. Accessed January 7, 2021.