Psychological Reactions to a Diagnosis of Alzheimer's

Health Professional

Learning you have Alzheimer's disease is never easy.   However it is important that caregivers understand that each person's psychological reaction is an individual experience. You cannot understand their reaction by simply observing his or her behavior, you have to engage with the person to begin to find out and not interpret them simply as symptoms of a disease.

Symptoms as Signs of Alzheimer's

It is a mistake to make the assumption that agitation, depression, anxiety, wandering, anger are just the symptoms of Alzheimer's. To do so is to depersonalize the person experiencing them. It denies people's feelings and behaviors as a psychological reaction to a situation.

For instance, when a friend, I will call her Amy, went for a follow-up appointment to see the doctor who had diagnosed Alzheimer's, she was argumentative and moody. The appointment, intended to discuss treatment options, turned into a very uncomfortable half hour. She would not listen and was generally uncooperative. It is easy for medics and caregivers to take these emotions at face value as just another symptom in someone that is finding it hard to communicate, or to engage intellectually with those around her. In fact she was angry. She felt the doctor was indifferent and showed little compassion to her feelings about coping with the diagnosis.

Research shows us that Amy's reaction to her diagnosis and her perception of how she was being treated is common. The sense that many medical professionals deliver a diagnosis but seem unable to convey empathy, understanding of that person's feelings, or be willing to find out, is also experienced by caregivers. Of course for professionals to explore all reactions may be unrealistic and often they see their role as imparting the information and prescribing treatment. In so doing the patient (and caregivers) may then interpret this as a stereotypical, negative reaction to the disease, for example;

  • Alzheimer's cannot be cured so there is nothing they can do.
  • That because of the disease the patient can no longer fully understand the situation so will have little in the way of a valid reaction to the diagnosis.
  • That because they have dementia they lack the ability to engage in discussions about what the diagnosis means to them.
  • That they have become dysfunctional, invisible, unwanted, unproductive and a burden.

Does the Stage of Alzheimer's Affect Psychological Reaction to Diagnosis?

Diagnosis tends to highlight the perceived defects of the disease and not the ways in which people who are diagnosed are then treated by others. There is lots of evidence that people in the moderate and even in the severe stages of Alzheimer's express appropriate anger, frustration, sadness and embarrassment. Because people see someone with Alzheimer's mainly in terms of what they can't do, it is surely understandable that they expresses themselves with frustration, anger, helplessness and depression.

It is important to remember that behavior is driven by the meanings that situations have for people. We have to remember to pull away from seeing emotions, especially ones perceived of as negative (anger, moodiness, lack of cooperation) as symptoms of disease rather than symptoms of distress in people diagnosed with Alzheimer's disease.