Perhaps more than other diseases, the desire for privacy is particularly strong for dementia, which is still viewed by many as a mental health disorder rather than a neurologic disease like Parkinson’s disease or ALS.
My patients and families typically limit the disclosure of the diagnosis on a need-to-know basis, and many choose to hide it till the end. Doctors, clinics, and hospitals are complicit with this secrecy, with only around 50% of people with dementia having their diagnosis documented in their medical records.
Since dementia tends to begin later in one’s life, many simply fade into retirement and anonymity, which inevitably leads to social isolation and misleading others of their whereabouts. Interestingly, the shame associated with dementia is not typically shared by people afflicted with other neurological disorders such as multiple sclerosis, stroke, or ALS.
When singer Celine Dion was diagnosed with the rare, progressive neurologic condition called stiff-person syndrome, she came forward with a message to her fans, putting an end to speculation about the mystery illness that caused her to cancel a series of performances. In her documentary, she bravely allowed a glimpse of the painful muscle spasm she experiences daily. Through her foundation, Dion personally donated millions of dollars towards research into the rare disease that afflicts fewer than 5,000 people in the United States.