Readying the drugs and the mindset to defeat dementia
Even as the number of dementia cases worldwide is projected to double to 139 million by 2050, promising new drugs raise hopes of slowing the disease progression. However, stigma and financial barriers continue to impede access to timely diagnosis and treatment.
The introduction of three new drugs may significantly improve the lives of people with Alzheimer’s disease. Photo: Egor Myznik
For nearly 20 years, no new drugs had been approved for Alzheimer’s. The recent licensing of two new medications, aducanumab and lecanemab, and the prospect of a third, donanemab, being available by the end of the year, are being hailed by some scientists as a breakthrough and the ‘beginning of the end’ of Alzheimer’s disease—the most common type of dementia.
The drugs are the first to slow the disease by ridding the brain of amyloid plaque, which can impair cognitive function. The latest trial evidence for donanemab, announced by the pharmaceutical company Eli Lilly, showed that the drug significantly slowed cognitive and functional decline in patients with amyloid-positive early symptomatic Alzheimer's disease, lowering their risk of disease progression. Notably, nearly half of the participants who were on donanemab at an earlier stage of the disease had no clinical progression after one year.
The new amyloid-targeting drugs come with potential side effects, including swelling and bleeding in the brain, and are so far seen to be effective only in early-stage Alzheimer’s disease. Their use also necessitates expensive brain scans and other hospital-based procedures. Yet the drugs are seen as global gamechangers and the first real hope that the progression of Alzheimer’s disease can be slowed.
But whether the drugs will prove ground-breaking globally depends on more than just pharmaceutical advancement. Getting the drugs to the people who need them the most entails securing adequate funding, overcoming misinformation and stigma, and putting dementia on national agendas, among other challenges.
Mapping the global dementia challenge
The excitement sparked by these new pharmaceutical developments is understandable, given the sheer number of people affected by Alzheimer’s disease globally.
“We’re looking at 55 million people currently living with dementia—8.1% of women and 5.4% of men over 65—and that number is forecast to rise to 139 million by 2050,” says Paola Barbarino, chief executive officer of Alzheimer’s Disease International.
"It’s a massive public health problem… There are still countries where people prefer not to talk about it and hide their relatives away.”
Barbarino says the prevalence of Alzheimer’s disease in high-income countries has largely plateaued but remains sizeable. In places like the UK, dementia is now the number one cause of death. Alzheimer’s disease and dementia are now on the rise in low- and middle-income countries (LMICs) owing to increased life expectancy. Stigma is proving a significant barrier to raising awareness and facilitating treatment.
“It’s a massive public health problem and we’ve been shouting from the rooftops about it for many years, but there’s still so much stigma surrounding it. There are still countries where people prefer not to talk about it and hide their relatives away. I compare it to the shame people seemed to feel about cancer in the 1970s,” Barbarino says.
Problems stem from within the medical profession, too, with a 2019 Alzheimer’s Disease International survey of 70,000 people revealing that 62% of doctors believe dementia is not a disease but a normal part of ageing. Though dementia mostly affects older adults, it is not an age-related inevitability.
According to the WHO Global Dementia Observatory, in 2019 the total societal cost of dementia was estimated to be US$1.3 trillion. In the same year, Alzheimer’s disease and other forms of dementia ranked as the seventh leading cause of death. The costs are forecast to rise to US$1.7 trillion by 2030, or US$2.8 trillion if corrected for increases in care costs.
Accordingly, the WHO has formulated seven actions to improve the lives of people with dementia, their carers, and families. These include: increasing prioritisation and awareness of dementia; reducing the risk of dementia; diagnosis, treatment, and care; support for carers; strengthening information systems; and research and innovation.
Yet in 2021 the WHO announced that only a quarter of countries worldwide had a national strategy or plan for supporting people with dementia and their families. Dr Tedros Adhanom Ghebreyesus, WHO Director-General, has called for more action: “The world is failing people with dementia, and that hurts all of us. Four years ago, governments agreed (to) a clear set of targets to improve dementia care. But targets alone are not enough. We need concerted action to ensure that all people with dementia are able to live with the support and dignity they deserve.”
US invests in research and treatment
In the US, advocacy groups have been fighting hard to persuade politicians and policymakers that dementia should be a high public health priority—and have met with some notable successes this year.
When the Centers for Medicare and Medicaid Services (CMS) refused to fund supply of lecanemab after it was approved by the Food and Drug Administration (FDA), the Alzheimer’s Association mobilised grassroots advocacy supporters to hold rallies across the country and lobbied politicians. Eventually, CMS agreed to fund supply of the drug. “The bottom line was that for each day that lecanemab was not approved, 2,000 Americans with Alzheimer’s progressed past the point where the drug could help them,” says Matthew Baumgart, vice president of heath policy at Alzheimer’s Association.
“If people are not diagnosed early enough, they won’t be able to get the drugs to slow down the disease.”
He says this was the first ever FDA-approved drug to be rejected by CMS. “Alzheimer’s Association has never said this drug is for everyone—it’s a decision to be made by the individual—but to have government policies that deny that hope and opportunity was something that needed to be reversed,” Baumgart says.
Apart from cost, the other factors that could potentially hinder the drug’s wider availability across the US include a shortage of geriatricians and neurologists, with 20 US states identified as ‘neurology deserts’. A 2017 Rand Corporation simulation study showed there was a shortage of the infusions and PET scans needed for the new treatments and that, over 20 years, two million people with mild cognitive impairment would progress to Alzheimer’s disease while waiting for treatment.
“Lack of infrastructure can be a huge barrier, even if the cost of the drugs is covered,” Baumgart says. “But with the new drugs now available, I think this will take care of itself and you will see more infusion centres and PET scans being available.”
The US is ahead of other countries when it comes to prioritising investment for the discovery of new treatments for Alzheimer’s disease. Its national dementia plan, focused on research, dates back to 2012.
“The good news is that, while only US$500 million a year was going into research back when the plan was published, the funding has now risen seven-fold to US$3.7 billion this year,” Baumgart says. “This was achieved through advocacy and lobbying and the attention that came from having a national plan, and also the fact that a law was passed in Congress by which scientists from the National Institutes of Health can directly inform Congress how much money they need.”
As a next step, the Alzheimer’s Association is emphasising the need for care and support for people with Alzheimer’s and their families. Medicare is running an eight-year pilot project to test better ways of delivering care, with emphasis on navigating and coordination within the healthcare system. There’s also fresh emphasis on risk reduction and communicating what people can do to reduce the risk of developing dementia.
But despite these significant advances, Baumgart says, there has been no end to the misconception that surrounds dementia in the US.
Even though it mostly affects older adults, dementia is not a normal part of ageing. Photo: Robina Weermeijer
“There's still a lot of people who think dementia is a normal part of ageing. CDC data has shown that well over half of the people who say they have memory problems have never talked to a healthcare professional about their concerns,” he says.
“We have to start normalising conversations about memory before we have memory problems. Doctors should be asking not only how you are doing physically, but also: ‘how’s your brain and thinking?’"
Crucially, Baumgart emphasises, “if people are not diagnosed early enough, they won’t be able to get the drugs to slow down the disease.”
Kenya battles for recognition of the disease
Likewise, misconception surrounding dementia is a huge problem in Kenya. Elizabeth Mueke Mutunga, founder and CEO of Alzheimer’s & Dementia Organisation Kenya, is fighting for recognition of dementia as a disease as it is still largely seen as a normal part of ageing by the general public and healthcare workers alike.
“Some in Kenya think people with dementia are bewitched or are being punished by the gods because they did something wrong, so people are locked up and hidden away,” explains Mutunga, who set up the organisation after a 15-year battle to get a dementia diagnosis for her father.
“Alzheimer’s is wrongly seen by some as a Westerners’ disease and there is this belief that Africans do not get it. It can be hard to convince people. I could not go to college as I had to look for work to educate my siblings because of my father’s illness. I support caregivers to ensure they understand the condition better so that, unlike us, they can get an early diagnosis.”
Even if the country can find the funds, administering the drugs would be extremely difficult as there are just 12 neurologists in the whole of Kenya.
Mutunga says stigma makes it difficult to correctly assess the scale of the problem in Kenya as people do not want to talk about it. But Kenya’s population is ageing rapidly, with the number of people aged 60 and over projected to more than double to 6.7% of the population by 2050. Incidence of dementia is projected to increase from 600 cases per 100,000 in 2020 to 660 per 100,000 in 2050.
Thankfully, some progress is being made in terms of awareness. “We have put together an anti-stigma toolkit to try and dispel some of the myths about dementia,” Mutunga says. “We are not where we were five years ago, as more people are reaching out to us for help and there is more understanding of the condition. Things are changing slowly but surely.”
However, significant financial constraints impede access to treatment. Mutunga says most of the Kenyan population cannot afford the new Alzheimer’s drugs in the absence of an insurance. An estimated 70% of the population live in rural areas, with about half living below the poverty line. Even if the country can find the funds, administering the drugs would be extremely difficult as there are just 12 neurologists in the whole of Kenya, all of them based in Nairobi.
Alzheimer’s & Dementia Organisation Kenya is currently working on a national dementia plan together with the country’s government, calling for the recognition of dementia as a major health concern and for support for people with dementia and their caregivers, including a stipend for caregivers and access to medical specialists for diagnosis and treatment. “We want people with dementia to have a dignified life and not be locked in the house,” Mutunga says.
Japan’s pathway to building a dementia-inclusive society
Japan, with its rapidly ageing population, is more prepared than most other countries for an explosion in the number of people with Alzheimer’s disease. “The Japanese government is taking dementia very seriously because of the sheer number of people affected. At the moment, we have 6.5 million people living with dementia and almost as many with mild cognitive impairment,” says Noriyo Washizu, associate lead for Alzheimer’s Association Japan.
A 2021 study published in BMC Geriatrics forecasts that the prevalence of dementia among those aged 65-plus in Japan will exceed 25% in the next 25 years, and 30% in 12 of the country’s 47 prefectures. As such, there’s an expectation that users will need to contribute towards the cost of the new drugs.
“We’ve realised this is a problem for the whole of society and we have to support people with dementia and their families to live with dignity.”
“We have had a long-term insurance scheme since the 1990s, which everyone pays into after the age of 45, and the cost of the drugs will be covered by it,” Washizu says. “But there are concerns about the rising cost of the drugs and other care that will be needed. Insurance premiums may have to rise, and some people won’t be able to afford the out-of-pocket contribution of 10-30% of the cost, depending on income.”
Lack of healthcare professionals and medical facilities is another issue, explains Washizu. “The treatment needs to be delivered every two weeks and we don’t have enough neurologists or hospitals for this.”
However, this year, the Japanese government, in a monumental step, passed a law called the Basic Act of Dementia that promotes the creation of a dementia-inclusive society. The focus of Japan’s national plan is enabling people with dementia to continue to stay at home for as long as possible.
“By 2025, a community-based integrated care system will be introduced to ensure provision of healthcare, nursing care, and livelihood support,” Washizu says. “This will enable the elderly to live the rest of their lives in their own environment that is familiar to them, even if they need long-term care.”
The system will be organised to ensure all the necessary services are accessible to the residents within 30 minutes. Support will be provided by senior clubs, residents' associations, and volunteer groups, with only a small amount of care provided by nursing homes. Japan has also enlisted 13 million Ninchisho supporters—members of the general public who have attended world-leading dementia awareness sessions to learn how to support people with dementia.
An especially good sign is a noticeable reduction in the stigma associated with Alzheimer’s disease and dementia across the country. “People are open about dementia in Japan now as it’s affecting so many people. It’s even taught in schools and there’s a lot of information about prevention,” Washizu says.
“We’ve realised this is a problem for the whole of society and we have to support people with dementia and their families to live with dignity.”
The question remains whether other nations around the world will soon come to the same conclusion.