Bénédicte is radically transforming the lives of thousands of patients and caregivers experiences with Alois, the network approach she designed and has been implementing since 2004. To make it work, she is tapping into the new, emerging profession of neuropsychologist; she has garnered support from the public insurance system to reimburse all prevention and care expenses, even if delivered by non-medical professionals; she is connecting research with data and patients; and she is including patients and caregivers to have a voice and play a role all along the value chain.
In this new model, a patient who shows the early signs of a cognitive disease is likely to be advised to contact Alois by his doctor or pharmacist, who has been trained to detect early symptoms. They are able to make a simple phone call to a platform that answers their questions and orients them to a neurologist in their area, outside of the hospital. An average of three months is usually necessary to set an appointment that will be able to judge the seriousness of the patient’s condition, and if necessary, to orient them to a neuropsychologist to run a simple test for two hours, free of charge. This very light approach contrasts strongly with the hospital-based system, where setting an appointment requires up to two years and tests last for two entire days, which can be traumatizing. If it turns out that these early signs are indeed risks of a cognitive disease, which happens in about 50 percent of cases, patients are then invited to undergo fuller tests in the hospital or with a private neurologist, based on their location and the advancement of the disease.
More recently, Bénédicte opened her approach to patients in rural areas: she is experimenting with how they can undergo these tests virtually under the supervision of their doctor, in coordination with a neurologist in the Alois network. She is also developing a culturally sensitive approach for immigrant, low-income populations in the Paris area: if they cannot read or write, and/or only speak Arabic, patients can access adapted tests close to their home and relevant psychological and medical care.
Throughout this process, patients and caregivers are oriented to psychological support and discussion groups, carefully designed and organized with neuropsychologists. With them, they learn what to expect, how to deal with the disease on a daily basis and how to mitigate risks. They also have access to friendly ears, simple tips, and useful advice. And foremost, they have several more years to enjoy their memories and families, and make key decisions about the rest of their lives.
Yet Bénédicte is aware that a cognitive disease diagnosis is like a death sentence, in the absence of treatment and effective medication. Part of the problem is that patients are diagnosed late and can only enter research protocols at very advanced stages of the disease, which slows down research dramatically and limits the relevance of results. To fix this, Bénédicte has participated in revamping the national knowledge management database that is shared among all neurological institutions and professionals in France, to include a broad range of useful medical and non-medical information including socioeconomic data. She is making this wealth of information accessible to private and public research laboratories, including relevant information about early-stage patients. She is thus allowing laboratories to recruit patients for their research protocols, and dramatically accelerating the development of medical solutions: thanks to her, the number of patients included in research protocols more than tripled between 2007 and 2011, to reach over 4,000.
Bénédicte has piloted her model in the Paris area. To date, 161 neurologists out of 200 in the region participate in Alois, and most of them rely on neuropsychologists to run detection tests—whereas before they did not play any role in the diagnosis phase. Bénédicte is also encouraging the opening of memory centers where neurologists and neuropsychologists collaborate outside the hospital for the diagnosis and care of patients. This has allowed Alois to take charge of over 6,000 patients and 2,000 caregivers over the past eight years. Bénédicte is identifying neurologists and neuropsychologists across France who can replicate her approach and expand her network in other regions of France, as is already the case in the North and South-East. Her medical publications and public interventions are raising interest across Europe, and she has been approached by neurologists in Sweden. She now wants to demonstrate the actual cost savings of her approach for the national medical insurance scheme and private insurance companies to make reimbursements systematic and encourage investment across the country and beyond.