Patients in the UK who are diagnosed in the early stages of Alzheimer’s disease are “significantly less likely” to receive treatment than those in the US, France, Italy and Japan, according to a new study from Eli Lilly.
While treatment rates are higher in these other countries, UK practice fits with current guidance from the National Institute for Health and Clinical Excellence (NICE), notes the report, which surveyed 1,000 healthcare professionals in the five nations. UK doctors are as willing as their international colleagues to advocate the potential benefits of an early diagnosis, it adds.
Moreover, 78% of the UK doctors responding to the survey said that once a diagnosis has been made, their greatest treatment-related challenge is managing patient expectations regarding currently-available Alzheimer’s treatments.
Almost half of the doctors across all five countries felt that Alzheimer’s is “often” misdiagnosed, and a similar number said that, typically, patients are diagnosed once their symptoms are already moderate or severe and it is too late to intervene in any meaningful way. Doctors in the UK in particular highlighted the lack of a definitive test for Alzheimer’s, with 72% citing this as a barrier to an early and accurate diagnosis – more than in other country surveyed.
The findings also reveal a UK “conspiracy of silence,” with both patients and physicians reluctant to initiate discussions about a potential diagnosis of Alzheimer’s. Patients delay conversations about symptoms with their doctor for an average of seven and a half months, and physicians initiate conversations in only 24% of cases.
Doctors in the UK reported that 52% of patients and 66% of their caregivers are “not surprised at all” by a diagnosis of Alzheimer’s, in contrast to Italy, where 67% of patients “express surprise.”
Clinicians in the UK were also more likely to cite stigma related to Alzheimer’s as an issue in communicating diagnosis to patients – 72% did so compared to 59% globally. Also, 86% of doctors in the UK – more than in any other country – believe there is a need for more public education about the disease.
“These responses provide an intriguing insight into the reality of the UK’s poor levels of diagnosis for Alzheimer’s disease,” said Else Hoibratten, senior medical director at Lilly UK.
“The findings suggest an unwillingness to engage on both sides of the consulting room table, leading to a conspiracy of silence around this devastating disease,” she added.
Meantime, following the number of disappointing late-stage trial results ending the development of potential new Alzheimer’s drug treatments in recent years, a leading campaigner has called for a “different way of thinking” about how such drugs should be brought forward, suggesting that the cost of trials should be funded not just by drugmakers but through public-private initiatives.
While all drugmakers are cutting jobs, neuroscience has had the highest attrition rate, Eric Karran, director of research at Alzheimer’s Research UK, told a meeting at the Science Media Centre in London this week. He said his feeling was not that companies want to move away from Alzheimer’s research, but that their shareholders are “getting restive.”
However, the medical and societal need for new treatments is massive, the meeting heard. Until drugs and other interventions that delay the onset or slow progression of the disease become available, there will not be enough money or carers to look after the number of people with Alzheimer’s, Dr Karran warned.
Commenting, the Alzheimer’s Society stressed that “now is not the time to back away from dementia research. Despite costing the economy more than cancer and heart disease, funding for research into dementia is only a fraction of those conditions,” it says.
