Volume 2, Issue 7
April 16, 1999

First a quick note to let you all know that I didn't lose my mind the last issue. I used my Wingding, and Mini Pics fonts to make the Easter issue a little interesting. Somehow in the mailing the fonts got lost in cyberspace so all you saw were just letters instead of bunnies, chicks, eggs, and Easter baskets. Oh well, I tried.

The Big Question: Should We Tell the Patient?

Both health care professionals and family members are often faced with the dilemma of what to tell the patient who is suspected of having Alzheimer disease. This issue is a difficult one for many reasons. Being the bearer of bad news is an unpleasant task in and of itself. However, this distasteful task is further complicated by the lack of a positive diagnosis of Alzheimer disease without a biopsy, which is rarely performed. While this situation may change as new diagnostic techniques are developed and old techniques are refined, for the time being, a definite diagnosis of Alzheimer disease cannot be made, except upon autopsy. Consequently, we are faced with a diagnosis which must be stated somewhat tentatively, and the uncertainty accompanying the diagnosis is something that the health care professional, the family and the patient must deal and live with. It should be noted that a diagnosis of Alzheimer disease can be made with more confidence in some cases than in others, although this does not ultimately make telling the patient any easier.

So what does one do if a patient asks what his or her diagnosis is? What are the issues involved in one's response? First, informing a patient that he or she may have Alzheimer disease can understandably induce great distress, unless the patient's disease is so advanced and comprehension so compromised that the implications of the diagnosis cannot be understood. Because of the difficulties inherent in accurately diagnosing the disease, there is always the risk that some individuals may be told they have Alzheimer disease when, in fact, they do not. The needless distress which can result from this situation is something all hope to avoid. Another issue which is constantly of concern is that of possible suicide. Many of us have made the comment, knowing what we do about Alzheimer disease, that we would not want to continue living if we had the disease. We therefore have concerns that if our patients or loved ones found out they have Alzheimer disease, they might make suicide attempts. This is also of great concern to all involved. Nonetheless, despite this risk and the distress patients may experience as a result of being told their diagnosis, there are many compelling reasons for sharing this information with patients, if they ask for it and want it.

It has often been noted in clinical descriptions of Alzheimer disease patients, that they will maintain some insight into their declining functions, such as memory loss, especially in the early stages of the disease. As a result, most often patients realize that "something is wrong". Left alone to manufacture the reason for their self-noted cognitive and behaviourial changes, many patients will assume the worst anyway, and will be left with their self-diagnosis along with the impression that their illness must be too bad to even talk about since the topic is so blatantly avoided. During such situations, patients are also at risk for suicide. Consequently, in addition to feeling alone and distressed, these individuals may miss out on opportunities to obtain the additional emotional and social support which they will need in the months and years ahead. Furthermore, by not responding to patients' request for their diagnosis and prognosis, one is denying them the privilege of completing important work , legal documents, and where possible, planning ahead for their own care. Of course, a patient's ability to perform such tasks will depend on his or her functional capacity and the current severity of the illness.

Each individual case is unique in some aspects, and there are grave dangers in applying a blanket rule to govern all situations and all patients. Nonetheless, in most cases where the patient requests the information, it may be appropriate to provide the patient with the diagnosis. However, imparting diagnosis alone is not sufficient.

It may also be important to include information on the expected course of the disease, any limitations on the accuracy of the diagnosis, the importance of continued assessment and health care, etc. Furthermore, there should be attempts to facilitate the patient's and family's use of resources available to them. A thoughtful and sensitive approach to the patients' needs and not just our own fears over how they may react, should guide our responses. There are patients who do not want to know what is wrong with them, but in our experience this is rare. Providing accurate information may actually lessen the distress and possible suicide many people fear in Alzheimer patients. The decision is not an easy one and may require professional consultation. Note: The view here is only one of many different approaches to this question and represents the experience and views of the authors. They realize that other professionals may feel very differently about this topic and recognize that there is no "best answer" for all cases.

Connie L. Dessonville, Ph.D.
Robin Morris, Ph.D.
Reprinted from: ADRDA Newsletter, Seattle, WA, April, 1985.

Should You Tell Your Spouse?

This question was put to people who have had to face the issue themselves. Their responses may help in giving direction to others. A clear majority answered the question with a definite "no". The explanations for this answer included: "No use piling on misery," "It is pointless," "Don't want to spoil the time left," "Knowing the diagnosis can make a person depressed and more unhappy".

A minority group were less certain of the answer. Their replies would depend on the circumstances, such as the type of person involved, the relationship that had existed between partners and the stage at which the disease was diagnosed. An honest answer may be the only way to reply to a direct question from the person afflicted. A thank you to the readers who responded to the question and to the members of the long term support group who discussed it -- all of these people have had to face the question themselves and we appreciate their help in giving direction to others.

An additional thought: One of our local professional caregivers considers that the question is not as critical as some families imagine. By the time a diagnosis is made, individuals are usually not capable of retaining new information for any length of time. While the implications of the diagnosis are a tremendous burden for the family, they may be much less for the person with Alzheimer.

Repetitive Actions

• Causes and Symptoms:
  • side effects of medication (particularly repetitive movements like sticking one's tongue in and out)
  • physical changes in the brain
  • memory loss - the person may not have the ability to remember they are repeating themselves
  • misinterpret sounds or sights, causing anxiety
  • separation from a loved one
  • misunderstanding of what is happening
  • inability to express needs such as hunger or having to go to the bathroom
  • trying to express an emotion such as fear, anger or insecurity

   

• Coping Strategies:
  • have a medical exam done to check medications, and check for illness or pain
  • ignore the behaviour if the person is showing no signs of stress or agitation
  • stay calm and look for the reason behind the repetitive action
  • distract the person with a favourite activity or food
  • find a way to fit the repetitive action into the normal household chores e.g. dusting
  • if the person is repeating a question, write down your answer, speak more slowly, try to simplify your answer, respond to the emotion instead of the question
  • if the person is repeating a movement, occupy the person's hand with a doll, stuffed animal or nerf ball
  • reassure with a gentle touch or hug when a verbal response does not help
  • use simple written reminders with people who can still read - e.g. use a large sign that says "We will eat at 5:30 p.m."
  • use pictures to replace written reminders when ability to read is lost - e.g. a picture of a toilet might replace a sign that says "toilet" on the bathroom door
  • don't discuss plans with the person until just prior to an event if this causes repeated questions and agitation
  • be alert for events or objects in the home that trigger repetitive behaviour - e.g. when the person sees coats, hats, and gloves he may react by repeating statements about going home
  • sometimes you need to walk away and take time for yourself; take a bath or do some relaxation