Progress on Alzheimer’s Disease stagnating, warns federation chief [Advocacy Lab Content]

Progress on Alzheimer’s Disease and dementia is stagnating, Alzheimer Disease International CEO Paola Barbarino has warned.

Alzheimer’s Disease (AD) is not an obscure condition, it’s the most common form of dementia in the elderly, a demographic for which it is also one of the leading causes of death. Around 7 million people are currently affected by AD in the EU.

Globally, it’s estimated that there will be 152 million people living with dementia by 2050.

Yet despite these rising figures, Barbarino, who leads Alzheimer’s Disease International (ADI) a worldwide federation of Alzheimer associations, finds herself needing to constantly remind governments to pay more attention to this condition.

She describes a widespread lack of awareness as one of the key challenges contributing to this. “This leads to governments neglecting the topic of dementia in favour of other diseases where treatments are available and where long-term care (perceived to be too expensive) is not such an issue,” Barbarino told Euractiv.

No cure, but some drugs can delay symptoms

While the exact cause of AD is unclear, it’s likely triggered by a combination of genetic, lifestyle, and environmental factors. Some theories suggest the build-up of proteins between nerves is what causes AD while others say it’s the result of other bodily processes going wrong.

There’s currently no cure for Alzheimer’s, but some drugs can delay its symptoms.

Barbarino explained that the high costs of addressing dementia contribute to policymakers avoiding the issue. However, with the right support systems, carers could continue to work and contribute to the economy rather than having to care for their loved ones full time, she explained.

She added that governments, who wrongly assume nothing can be done, are ignoring research showing that dementia can be prevented through healthy lifestyle habits. “Stigma,” she said, “is hard to break.”

ADI isn’t the only organisation feeling that Alzheimer’s is being brushed aside.

Alzheimer Europe, an NGO that aims to make dementia a European priority, has noticed what it described as “a deprioritisation of dementia as a policy issue in recent years”.

In its latest manifesto, it complained about AD being included within broader topics and policies without receiving specific responses. The NGO called for concrete actions taken to improve prevention, diagnosis, care, and treatment for people with dementia.

“You would expect governments to pay a bit more attention to the problem without having us reminding them all the time but alas! That’s not the case”, Barbarino wrote on social media after attending the 77^th World Health Assembly in Geneva, highlighting the absence of solutions to combat the lack of care provision and support for carers and that under-diagnosis levels are up to 75%.

Clinicians are encouraged to detect AD earlier

Although clinicians are now being encouraged to detect AD earlier, in practice, reaching a diagnosis has been hindered by various barriers. These include patients and healthcare providers dismissing symptoms as part of the normal ageing process, a lack of time by doctors, and difficulty accurately diagnosing Alzheimer’s pathology.

Getting an early diagnosis allows people more time to make a care plan for their future. A 2018 Alzheimer Europe report found that 47% of 1,409 family carers would have preferred an earlier diagnosis of dementia.

They said it would have reduced the negative emotional impact and allowed them to better adjust. Factors that delayed receiving such a diagnosis included the reluctance of the person with dementia, lack of awareness of dementia, the response of professionals, and delays within health systems. An earlier diagnosis may also help patients access treatments that can help slow the progress of the disease.

Women deeply affected

While AD certainly comes with broad challenges, efforts have also been made to recognise the effects the disease has specifically on women.

In an article published this May in npj Women’s Health – part of Nature’s portfolio – a group of researchers from the University of California San Francisco argued that the medical field has yet to fully recognize AD as a women’s health issue thus delaying the development of targeted preventative strategies and treatments.

They highlighted how by age 45, women face a 1 in 5 lifetime risk of AD while men have a 1 in 10 risk.

In the UK, Alzheimer’s Society said the main reason for this greater risk is because women live longer than men and old age is the biggest risk factor for this disease.

This push to rethink AD isn’t new with researchers saying “Alzheimer’s disease is indeed a women’s disease,” as early as the 1990s.

What will it take to start creating change and revolutionise the way we tackle AD? According to Barbarino, greater awareness and public pressure will need to play a role here if more people expect to be diagnosed and receive new treatments. She explained that the best way for governments to prepare themselves is by developing and implementing dementia plans that consider WHO guidelines.

“New treatments and new diagnostic methodologies for dementia should be a driver to revolutionise diagnosis and care management, yet evidence suggests that both are woefully neglected by most governments and health care systems,” she said.

[By Christoph Schwaiger |  Edited by Brian Maguire | Euractiv’s Advocacy Lab ]

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