The man who did not have Alzheimer’s
Expert by experience is a relatively new concept where individuals with first-hand experience of an illness are valued for their unique insights, which can be incredibly beneficial in the medical field
Published: 03:10 PM,Oct 26,2024 | EDITED : 07:10 PM,Oct 26,2024
A few years ago, a man in his late sixties came to my clinic, saying he had become very forgetful over two years and had been diagnosed with Alzheimer’s at a hospital in a South Asian country. He wanted me to provide a report supporting that diagnosis.
After taking a full medical history and conducting a detailed memory assessment, I was not convinced of the diagnosis, especially as there had been no worsening of his symptoms. His brain scan was normal, and according to his daughter, he was fully independent, enjoying writing about his personal experiences with Alzheimer’s on his blog and being invited as a guest speaker at national and regional conferences. He told me he considered himself an advocate for people with Alzheimer’s. “The world needs to know about our suffering,” he said.
When I reassured him that his tests were normal and that I did not believe he had Alzheimer’s, he became angry and stopped attending appointments. However, he continued making public and media appearances to share his 'experiences'.
Companies producing supplements, memory aids, and other products claiming to help Alzheimer’s patients sought him out to endorse their products and paid him well. He began appearing on TV shows, suggesting that people should take a particular supplement to avoid Alzheimer’s, even though this information was unsupported by medical research.
His supposed condition also attracted the attention of charities and non-profit organisations, who believed his story could help raise awareness and funds for research.
The attention, publicity, and financial incentives fuelled his willingness to perpetuate the lie, and soon he was regarded as an ‘expert by experience’. This concept, where individuals with firsthand experience of an illness or condition are valued for their unique insights, can be incredibly beneficial in the medical field. It bridges the gap between clinical knowledge and the realities of living with a condition. However, in the wrong hands, it can be manipulated.
People fake illnesses for various reasons: some for attention, fame, financial gain, or to escape work or even imprisonment. This is why it is crucial to be selective when choosing an expert by experience to maintain a balance between valuing patient stories and upholding rigorous standards of authenticity.
Guidelines recommend that ‘experts by experience’ should have a documented history of the condition, including references from healthcare professionals specialised in that field to verify their experience. They should also articulate their experiences clearly and effectively and be willing to collaborate with healthcare providers to ensure their contributions complement clinical perspectives. They must avoid conflicts of interest and have acceptance and acknowledgment from patient communities and healthcare professionals, making them true and trustworthy representatives of others with the same condition.
In my opinion, non-profit organisations need to be cautious in promoting experts by experience to avoid endorsing those who fake a condition for personal gain.
After taking a full medical history and conducting a detailed memory assessment, I was not convinced of the diagnosis, especially as there had been no worsening of his symptoms. His brain scan was normal, and according to his daughter, he was fully independent, enjoying writing about his personal experiences with Alzheimer’s on his blog and being invited as a guest speaker at national and regional conferences. He told me he considered himself an advocate for people with Alzheimer’s. “The world needs to know about our suffering,” he said.
When I reassured him that his tests were normal and that I did not believe he had Alzheimer’s, he became angry and stopped attending appointments. However, he continued making public and media appearances to share his 'experiences'.
Companies producing supplements, memory aids, and other products claiming to help Alzheimer’s patients sought him out to endorse their products and paid him well. He began appearing on TV shows, suggesting that people should take a particular supplement to avoid Alzheimer’s, even though this information was unsupported by medical research.
His supposed condition also attracted the attention of charities and non-profit organisations, who believed his story could help raise awareness and funds for research.
The attention, publicity, and financial incentives fuelled his willingness to perpetuate the lie, and soon he was regarded as an ‘expert by experience’. This concept, where individuals with firsthand experience of an illness or condition are valued for their unique insights, can be incredibly beneficial in the medical field. It bridges the gap between clinical knowledge and the realities of living with a condition. However, in the wrong hands, it can be manipulated.
People fake illnesses for various reasons: some for attention, fame, financial gain, or to escape work or even imprisonment. This is why it is crucial to be selective when choosing an expert by experience to maintain a balance between valuing patient stories and upholding rigorous standards of authenticity.
Guidelines recommend that ‘experts by experience’ should have a documented history of the condition, including references from healthcare professionals specialised in that field to verify their experience. They should also articulate their experiences clearly and effectively and be willing to collaborate with healthcare providers to ensure their contributions complement clinical perspectives. They must avoid conflicts of interest and have acceptance and acknowledgment from patient communities and healthcare professionals, making them true and trustworthy representatives of others with the same condition.
In my opinion, non-profit organisations need to be cautious in promoting experts by experience to avoid endorsing those who fake a condition for personal gain.