Mental Suffering in Alzheimer's Patients

Summarized by Robert W. Griffith, MD
April 19, 2007

Summary

The emotional pain often felt by Alzheimer patients - agitation, fear, aggression, obsessions, compulsions - may cause more suffering than many levels of physical pain, and deserves vigorous treatment.

Introduction

There's a real possibility that patients with dementia may be thought to have no feelings - people may believe that having mental impairment means patients have lost the ability to feel, even if they have lost the ability to express those feelings. This subject has been discussed in an article by Professor Edmund Howe, Editor in Chief of the Journal of Clinical Ethics. Here is a digest of the main points he addresses.

Patients May Know That They Can't 'Know"

Alzheimer's patients are quite likely to lose the ability to understand what they are experiencing. But this doesn't mean they don't suffer emotional pain because of their ignorance. Failure to comprehend the loss of comprehension is now acknowledged by caregivers and physicians alike. But greater distress is caused by the inability to understand why they have lost this capacity. A common response to this problem for the patient is to lose all trust in their own judgment of how they can function in their world; this is followed by total loss of self-worth.

Knowing that patients may respond this way can help in understanding them. And we can try to avoid marginalizing them as being persons who are emotionally different from us.

Patients May Lack Relief from Emotional Pain

Patients with physical pain can often find meaning in their lives, and have high-quality interactions with other people during pain-free intervals. Emotional pain, however, is a different matter. Chronic feelings of agitation, aggression, fear, depression, obsessions, or compulsions leave no space for positive interactions with others. Such patients suffer continuously. One writer wrote "the lives of persons who have such obsessions have been hijacked by anxiety."

One theory is that people can't feel more than one emotion at a time; this may be particularly likely in people with dementia. The absence of periods of relief makes it essential that such emotional symptoms in dementias should be treated appropriately and energetically.

Patients May Lack the Capacity to Distract Themselves

People who have normal mental function can obtain periods of relief from emotional problems by distracting themselves - for instance, the can think of other things. Experience shows that this isn't possible for people with Alzheimer's. The way such distraction is achieved in people with chronic pain is by learning (or being trained) to reach a state of 'mindfulness'. Mindfulness is a technique in which a person becomes intentionally aware of his or her thoughts and actions in the present moment, non-judgmentally. Such an option clearly isn't available to people with mental impairment.

Patients May Lack Capacity to Offset Painful Emotions

Severe physical pain can produce significant meaning in the lives of some sufferers - for example, setting themselves the goal of leaving loved ones with positive memories of them. Thus they strive to maintain grace and dignity, to offset their suffering and make it more bearable. Demented patients are unable to derive the strength to do this.

Patients May Know They Hurt Loved Ones, But Can't Stop

Alzheimer's patients often cannot control their aggression, and exhibit disproportionate outbursts. Being aware of this (as occasionally happens in advanced disease) is extremely painful to them, especially if they hurt someone they love. If friends and caregivers recognize this possibility, they can act accordingly and sometimes disarm the patient.

The Implications of These 5 Possibilities

It is clear that the emotional pain suffered by dementia patients can be severe, continuous, and beyond any control by the patient. There are examples, however, of attempts to relieve this pain which resulted in shortening the patient's life. Alzheimer's caregivers may ask themselves whether an intervention will do more harm than good - physical harm may be evident without any evidence of mental good. Ethical choices of this sort are difficult, as they are perforce made without input from the recipient, and the next-of-kin may not understand the extent of the existing emotional pain.

Should We Value What Patients Feel or Their Cognition?

When patients have Alzheimer's disease and can maintain meaningful relationships with loved ones, there's never any question that everything must be done to extend their lives as far as possible. However, when patients have lost their capacity for such relationships, their physicians and care-providers should consider taking greater risks in treatment - even if these may hasten death - to try to help them recover this capacity.

Professor Howe uses examples from his experience and from the medical literature to support his thesis that, when care-providers have to make difficult decisions, "whether patients still have the capacity to have relationships may warrant the greater moral weight." And, "Of the two - the risk of death or the loss of the capacity to relate meaningfully with loved ones - the latter may be worse, for most of us."

Source

• Do we undervalue feelings in patients who are cognitively impaired? EG.  Howe , J Clin Ethics, 2006, vol. 17, pp. 291--301

Related Links
Collaboration in the Care of Alzheimer's Patients
Recognizing Pain in Alzheimer Patients
How To Talk With The Doctor About Alzheimer's

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