Problem: What problem is this project trying to address?
As we live older and older, everyone is faced with the risks of developing a cognitive disease at some point in their lives. Between the age of 50 and 70, one might start walking slower and having fewer reflexes; one might start forgetting small tasks of our daily routine and details of what happened earlier during the day. The first signs will likely be very mild, and one might think or be told that they are simply tired or have too much on their mind. If they get lucky, they might avoid domestic or car accidents for a few years, and feed themselves enough not to suffer from too many health problems. Until one day, ten years or so later, one will have lost their abilities to such a point that they have lost their autonomy and become a burden on their family, and at that stage doctors will eventually send them to the hospital to run a battery of neurological tests.
Because there are only 2,000 neurologists in France and that they are the only ones recognized by the national health insurance scheme and allowed pronounce a diagnosis, the delay to get an appointment is likely to be around 24 months. Two years over which patients’ situations keep deteriorating and caregivers have more and more trouble handling the situation, before finally hearing the irrevocable sentence: “You are suffering from Alzheimer” or some other cognitive disease. By then, it is most often too late for patients to make any decision about care and succession, and caregivers’ burden is extremely heavy. They can find support groups where everybody is in similar, desperate situations, but that will do little to alleviate their struggle to find a satisfactory way to deal with the disease.
Patients’ situations is even more complicated if they lived in rural areas where the only access to medical care are primary care doctors who have no or little training about cognitive diseases; or if they are illiterate or non-French speakers, which prevents them to do any of the standard tests. In many situations, family and cultural contexts make it unimaginable to talk about and confront them.
These scenarii are a reality for about a 225,000 French people diagnosed every year (for a total of one million patients), and for 10 million across Europe: taboos about aging and brain-related diseases remain deeply rooted; there is little history or culture of managed care, and a strong shortage of neurological professionals. The impact is dramatic for patients, who do not have any power to make decisions; for families and caregivers, whose role has heavy consequences on their psychological and physical health; and for society in general, as public welfare systems bear the cost of late intervention and the lack of prevention mechanisms.
There are however several opportunities for change. New professions are emerging with the potential to alleviate the situation of patients and families, such neuropsychology and professional caregiving; public and private insurance schemes are looking for prevention and early care mechanisms; and research is looking to develop therapeutic and chemical and non-chemical answers to cognitive diseases. The challenge is to empower patients to connect with them.
Solution: What is the proposed solution? Please be specific!
In order to empower patients and their families to manage the fifteen-year period during which cognitive diseases progressively take over patients’ brains and daily lives, Bénédicte Defontaines has designed and launched the first integrated value chain of early detection, psychological support, risk prevention and medical care. In doing so, she is overhauling a traditionally over-burdened system that only detects the disease at a very advanced stage and can only offer palliative care. Through her work, Benedicte is adding an extra ten years for patients and families to prepare psychologically, manage risks and make choices about how to manage their condition.
With Alois, Bénédicte has developed a fully-medical, hospital-based approach of cognitive disease care by engaging a broad range of medical and non-medical professionals. To do this, she is training family physicians and pharmacists to detect early signs of cognitive degradation, bringing in neuropsychologists to run short, light tests outside of the hospital and confirm the risk of a disease, only involving neurologists and medical institutions when necessary and offering patients and families a broad range of psychological and preparedness support to strengthen their resilience. She is also leveraging telemedicine technology to make her solution available to people in rural areas and medical deserts. Thus, she is exponentially multiplying the capacity and quality of the healthcare system to deal with a growing need.
Bénédicte makes sure to keep patients and caregivers’ experiences and needs in the center of her model throughout this value chain, as cognitive diseases remain a taboo and are a strong factor of isolation and suffering. Studies show that even caregivers’ life expectancy is on average ten years shorter than this of the general population. She lessens their burdens by recognizing their challenges, offering them a platform of expression and providing them with adapted solutions and support. She also makes sure that her approach is available to all by ensuring it is reimbursed by the national medical insurance scheme and by developing cultural- and language-specific approaches for low-income, illiterate and immigrant populations.