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Telling Someone They Have Alzheimer's Disease

By March 8, 2011

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A survey of 55 geriatric psychiatrists and geriatricians published in 2000 found that only 40% regularly tell patients with Alzheimer's disease of their diagnosis. Another study found that 95% of of doctors regularly informed patients of a terminal cancer diagnosis while only 39% revealed a dementia diagnosis. This all seems to contradict what most patients and caregivers think: 92% of patients in one study with mild dementia wished to be informed of their diagnosis, and 72% of caregivers in another study felt that patients should be told. In fact, some evidence suggests that most patients and caregivers do just fine psychologically after being told the diagnosis. while coping with the grief of a loved one's Alzheimer's diagnosis my be traumatic, learning to deal with that grief will undoubtedly benefit both the caregiver and the patient.

So why are doctors so reluctant to communicate a diagnosis of dementia? Of 10 factors that influenced a doctor's decision in a survey, the top three were certainty of a diagnosis, the patient's wish to be told, and the patient's emotional stability.

My feeling is that while there are certain individuals who would be severely distressed if they were told they had Alzheimer's disease, in general we should err on the side of letting people know what we think. If people aren't told then no plans can be made, and some patients might want to enroll in a clinical trial to help themselves and future patients. What do you think? Please comment .

Comments
March 8, 2011 at 4:59 pm
(1) Jim says:

My wife was diagnosed with “probable” Alzheimer’s in 2000 by a Neuropsychologist. She denied the diagnosis and still claims to this day she had a stroke. We investigated the trial medicines of the day but had very little success of improving her cognitive ability. We settled on Aricept and Namenda for treatment which I believe has helped her. However two years ago, I had to place her into a skilled nursing home for the care she needs. She will probably remain there for the rest of her life. I am frustrated by the medical industry not pursuing a cure for this insidious disease. I believe the drug companies find it more profitable on suppressing the symptoms rather than curing the disease.

March 9, 2011 at 12:30 pm
(2) OMPilates says:

I was with a loved one when the Dr. told her she had Alzheimers. His energy was completely flat. He showed no compassion for her emotional experience. The result was the she shut down and was less open to care options. I think Dr.s need training in how to be present with people and help them hear this kind of news.

March 19, 2011 at 8:30 pm
(3) Sharon says:

My husband was diagnosed with Alzheimer’s in 2008 by a neurologist (but I knew something was wrong for about a year before diagnosis).
He didn’t believe it then and still doesn’t. Although he admitted to some memory problem and takes meds our family Dr. prescribes. His Alzheimer’s is now severe he cannot complete sentences and initiates none and is partially incontinent. I am caring for him at home as long as I am physically able then will need to decide whether to have home care or take him to an Alzheimer’s home. Its a very difficult decision since he was never very social and I am not sure how he will be with strangers caring for him. Hard to make such decisions about someone you have been married to for 49+ years.

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