SARASOTA, Fla. -- Millie Belden knew something was wrong.
“I noticed that he was beginning to be forgetful,” she says of her husband, “and I mentioned it to my doctor and he just ignored it the first year.”
Belden’s husband of 60 years was later diagnosed with Alzheimer's disease, but that detail was omitted from his death certificate after he passed away.
The cause of death was not Alzheimer's, and it wasn’t dementia, either.
"He died, even though it may have been a dementia, but typically they put on the death certificate 'prostate cancer,' which is fairly typical, yet a doctor will reach for a diagnosis that's medical …” says Jane Johnson, who attends the weekly support group for those who have lost loved ones to Alzheimer's at the Friendship Center in Sarasota.
Most deaths reported are due to other diseases, says Joann Westbrook of the Pines of Sarasota.
“The dementia would be an under diagnosis, meaning that it might be dementia-related but its usually diabetic,” Westbrook says. “It could be that somebody has pneumonia.”
Patients will be diagnosed with their most prominent illness when they enter a hospital.
“They're looking to try to help with the pneumonia or cancer and therefore they're not looking at the behavior problems that are coming from the disease,” says Westbrook. “You are going to die from the dementia, its brain failure.”
Difficulty swallowing is among the symptoms patients could develop in late-stage dementia that could contribute to death, explains Ann Modercin, unit manager of the Secure Dementia Unit.
Plus, the only way to really diagnose dementia is post-mortem on the autopsy – a major reason that Alzheimer's and dementia are often overlooked as a cause of death.