Alzheimer’s: how to announce the diagnosis


What should be said to the patient when delivering a diagnosis of Alzheimer’s disease? Some doctors may be afraid of the patient’s reaction and avoid using the words ‘dementia’ or ‘Alzheimer’s.’

What to say to the patient during a diagnosis?

When the diagnosis of Alzheimer’s is announced, it is possible to be frank, but it is better to speak of neurodegenerative disease or degenerative neurological disease instead of dementia or Alzheimer’s if the patient does not ask questions.

If the patient asks if he has Alzheimer’s disease, the doctor replies that the diagnosis is likely or possible.

It should be explained to the patient that it is important to ensure that the decline in cognitive functions cannot be explained by another illness (e.g. trauma)

Second visit, confirming or not the diagnosis of Alzheimer’s

The doctor reveals the additional examinations, which confirm the hypothesis of a diagnosis of Alzheimer’s disease.

He directs the patient and his loved one to resources (e.g., France Alzheimer) and discusses drug treatments (e.g. donepezil) and non-drug approaches.

Subsequent visits

The doctor discusses the possible side effects of the medications and assesses possible changes to lifestyle and day-to-day activities.

Cognitive performance is usually reassessed (e.g. with the MMSE).

The doctor questions the patient and his family during subsequent visits about possible behavioral problems (such as aggressiveness, wandering, anxiety, or confusion) and addresses the issue of driving.

Other questions must then follow over the visits: questions of safety (fugues, fire, bad medication), legal (putting under guardianship or curatorship, will), the role of the natural caregiver, etc.

Practical case

A 55-year-old woman consults at the request of her husband because he realizes that she has been presenting a progressive decline in her cognitive functions for 2 years.

The first symptoms are as follows: loss of memory, forgetting conversations, tendency to repeat oneself, and asking the same question over a short period of time.

She worked in the financial sector for 20 years and was made redundant 18 months ago. She then took up another less demanding position, which she left 7 months ago. Her husband points out that she had difficulty remembering the password she uses every day to access her computer.

The patient had difficulty remembering the names of characters from TV shows she watches regularly. She can no longer write checks, and her husband has taken over the management of the finances of the house.
She continues to be in relatively good spirits, but has episodes of severe anxiety.

On physical examination, the patient is alert. His blood pressure is normal (121/70 mm Hg), and his pulse is regular (70 beats/min). His body mass index is 20.6 kg/m2. She has fluent and coherent speech.

General and neurological examination results are normal. The result on the mini-mental state examination is 24/30, with a low score on the orientation test. She also had difficulty performing the clock test. Her score on the Geriatric Depression Scale (short 4-item version) is 2. Brain imaging reveals greater than normal hippocampal atrophy and white matter abnormality.

What is the diagnosis?
1. Degeneration of the frontotemporal lobe
2. Limbic encephalitis
3. Primary progressive form of multiple sclerosis
4. Alzheimer’s disease or
5. Corticobasal degeneration

A diagnosis of Alzheimer’s disease (mild stage) was made based on the following observations:
Progressive memory loss (difficulty remembering recent events or things recently learned).
Disorders of several other cognitive functions (including visuospatial abilities)
Daily functioning is below what it was before the symptoms.

However, tests have been undertaken to rule out other causes (e.g., encephalopathy) due to his age (symptoms of Alzheimer’s disease generally appear after age 65, i.e., 10 years later than his age). The hypothesis of frontotemporal dementia was ruled out because the patient presented neither personality nor language disorders nor frontal lobe atrophy.

Measurement of amyloid protein and tau protein levels in cerebrospinal fluid supports the hypothesis of Alzheimer’s disease.

Finally, the fact that her parents did not develop Alzheimer’s disease excludes the possibility that the patient has one of the 3 gene mutations responsible for the familial form of the disease (these mutations affect the amyloid precursor genes and presenilin 1 and 2).

Alzheimer’s: Diagnosis disclosure is low in the United States

Less than half (45%) of people with Alzheimer’s disease (or those close to them) are made aware of their doctor’s diagnosis of Alzheimer’s, according to a report by the American Alzheimer’s Association published in April 2015.

This percentage is slightly higher than that reported by the American Centre for Disease Control (35%).

« This is unacceptable, said Beth Kallmyer, one of the association’s leaders.  Patients have the right to know. Disclosure of diagnosis is a practice that should be common. »

“This surprisingly low disclosure rate in Alzheimer’s disease is reminiscent of that seen for cancer in the 1950s and 60s, when the word cancer was taboo,” she added in her statement.

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