BMJ 1998;316:1160-1163 ( 11 April )

Education and debate

Coping with loss

Blindness and loss of other sensory and cognitive functions

This is the fifth in a series of 10 articles dealing with the different types of loss that doctors will meet in their practice
Series editors: Colin Murray Parkes and Andrew Markus

Roy G Fitzgerald, associate clinical professor of psychiatry, a Colin Murray Parkes, consultant psychiatrist. b

a Thomas Jefferson University, Philadelphia, PA 19107, USA, b St Christopher's Hospice, London SE26 6DZ

Correspondence to: Dr Fitzgerald

Sensory and cognitive functions enable us to orient ourselves in the world; they make us aware of dangers and rewards; they mediate many sources of pleasure and of pain; and they are the means by which we receive messages from others. Anything that seriously impairs sensory or cognitive function is bound to have profound psychological effects, not only on the person who is affected but also on family, friends, workmates, and caregivers.

Summary points

Sensory and cognitive defects disable all who come into contact with them, including doctors    
Fear, frustration, and grief are natural reactions in patients and their carers
Denial of loss commonly impairs rehabilitation
Anticipatory guidance and support after the loss can reduce long term problems

Sensory and cognitive losses disable the doctor as well as the patient. When we attempt to communicate with deaf people, their deafness renders us dumb. Blindness in our patients deprives us of the ability to use non-verbal communication. An aphasic person effectively teaches us what it feels like to be deaf. The brain damaged patient makes us feel stupid. We experience the same frustration as they do and some of the same pain.

    Problems with communication

The situation is particularly hard when the circumstances demand sensitive and empathic communication, for it is this very subtlety that is most difficult to achieve. The fact that, unlike the patient, we can escape from the frustration---by escaping from the patient---encourages us to do just that. We do our duty, inform them of the help that is available, then leave it all to them. We give up trying to communicate, avoid interaction, and inadvertently indicate that we wish they would stop troubling us. Consequently, it is common for patients with communication defects to feel that they have become a burden to all who meet them. They may be tempted to give up trying to cope with a world that feels unappealing and rejecting.

Yet communication is always possible, and the professional who is willing to take the time and make the effort to communicate with people in this situation can achieve a great deal. Most patients are reassured to know that we understand, even if there is no way in which we can change their situation.

We shall take blindness as our prime example of sensory loss and rely on the research of others to relate this to other types of sensory and cognitive loss. Our examination of the problems of adjusting to blindness stems from a study by one of us of 66 adult Londoners aged 21-65 years who were followed up for an average of five years after being registered as blind.1-5 This research was supplemented by clinical studies and consultation with service providers for the blind, mainly in the United States, over a period of 25 years.

There are, of course, important differences between the reactions to sensory losses and to cognitive losses, mainly because it requires cognition for a person to understand that a loss has taken place and what this implies. For this reason the two types of loss will be considered separately.

    Sensory losses

Onset
Most blind people are not born blind, they become blind.1 This means that, having learned to rely on their sight in order to recognise and relate to the world, they must now radically revise their basic assumptions about that world. It is not surprising that blindness is usually an overwhelming personal and family catastrophe affecting the patient's mobility, work, personal relationships, and much else.

Although loss of sight is sometimes very gradual, three fifths of the subjects in the London study had less than a year between onset of symptoms and loss of useful vision, with 35% becoming blind in less than two weeks. Loss of hearing tends to be very gradual, and aphasias are more often sudden in onset. Those who experience a gradual onset have more time to prepare themselves for the changes that are occurring, but the changes are easier to ignore.

Reaction to sensory losses
The box above shows the approximate sequence of reactions to loss of sight and the frequency with which the phenomena were reported when blindness was established. They resemble the reactions to bereavement and other losses.

Reactions to loss of sight

  • Shock or disbelief ("I didn't believe it was happening to me" or "It's not permanent")
  • Pining for what is lost---for example, preoccupation with the visual past (83%), longing to see those things that cannot now be seen (97%), high anxiety and episodes of tearfulness (70%); pangs of grief for the visual world triggered by anything that forced the patient to confront the reality of blindness. These experiences were intensely frustrating and evoked feelings of irritability and anger
  • Depression in 85% of blind subjects continued after the pining and accompanying tearfulness had declined
  • Resolution often followed one or more turning points associated with increased self esteem and self sufficient acts such as preparing meals for oneself. The depression lifted and crying and social withdrawal diminished

Deafness evokes less sympathy than blindness. As the disability becomes established, deaf people go through the same succession of stages of reactions. 6 7 People with aphasia lose their jobs and other skills; they face social isolation similar to that of the deaf person, and their roles within the family undergo profound changes.

Long term adjustment
Progress towards recovery occurred in less than half of the blind subjects studied. Anxiety and depression persisted in half the subjects, and substantial minorities had a lasting decline in self esteem, sleep disturbance, and social withdrawal. A quarter reported excessive weight gain and a third reported episodes of irritability and anger. Persisting pain in the eyes and headache were common and were often thought to be of psychogenic origin. Several young married men had lasting sexual problems, and people who increased their consumption of alcohol or tobacco seldom returned to previous levels.

Sensory and cognitive losses disable the doctor as well as the patient

Comparable difficulties have been reported after other types of sensory loss. In deaf people, psychiatric illness was reported in 19% and high levels of emotional disturbance in another 20%.8 Much of this was associated with depression. Depression and feelings of worthlessness are also common in people with aphasia and sometimes amount to a "catastrophic reaction" when something happens that brings home the magnitude of the loss.9

Determinants of poor outcome
A major correlate of delayed recovery from loss of vision was persistent denial of blindness: 53% of patients clung to an unrealistic hope of recovery and 58% refused to learn the skills necessary for adjusting to life as a blind person. A third had been to faith healers in the hope of recovering their sight. All too often unrealistic hopes had been kept alive by doctors who, out of a reluctance to upset the patient, pretended that there was still hope of recovery, often by arranging repeated and unnecessary examinations. Denial of blindness correlated with depression and the feeling of helplessness which regularly accompanies depression. It further undermined motivation and deterred efforts towards rehabilitation.

Similarly, deaf people commonly take a long time to accept that there is anything wrong with their hearing, and some never do. This interferes with attempts to persuade them to learn sign language or the other skills that are needed if they are to function effectively. People with a total loss of hearing often persist in attempts to use hearing aids long after these are of any value and may engage in a useless and expensive search for more effective models.


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  		People with defects and difficulties caused by sensory impairment or cognitive loss may turn away from people who attempt to communicate with them

Persisting physical ill health makes additional demands on people at a time when they are already at full stretch. Patients (particularly old people) find it hard to learn how to cope with sensory losses when they already have other health problems.

Preparation for and management of sensory losses
It is usually possible to prepare people for the likelihood that they will lose their sight or hearing, and this will reduce the shock when it happens. In the long run, patients and their families appreciate the doctor being frank about the poor prognosis and the finality of the loss, if that is the case. It is also important for the doctor to be quite clear about the futility of seeking multiple opinions and undertaking wasteful treatments.

People need permission to grieve. They need recognition that this is a normal, natural reaction to loss and not a sign that they are "breaking down."

Members of the family also need opportunities to share their grief as the impact of the patient's condition on their own lives becomes apparent. They need to be involved in the rehabilitation process from the start so that they become part of the rehabilitation team as well as recipients of its care. Failure to do this may bring about the situation in which an anxious wife or husband is undermining the team's effort to help the patient to become autonomous.

It is important for a member of the primary care team to be familiar with the network of rehabilitation services that are available and to ensure that the patient makes full use of these. If, as is often the case, agencies are slow to act, waiting lists are long, and paperwork burdensome, the patient and family must be prepared for this and supported through the waiting.

Warm and affectionate support of confused patients will often relax tension and improve cognitive function

Of particular value are opportunities to meet with veterans, other blind or deaf people who have achieved a reasonable level of adjustment. Many organisations for the blind, for example, have blind or partially sighted people on their staff, and there are mutual help groups run by and for blind people. In the United Kingdom the main organisation for the blind is the Royal National Institute for the Blind (RNIB); in the United States, the National Foundation for the Blind has chapters in each state. Group counselling has been shown to be effective and more of these groups should be established.10

If, despite all our efforts, a person fails to meet our expectations of recovery from depression and to achieve a reasonable level of rehabilitation, we should not hesitate to refer them to specialist services.

    Cognitive losses

To communicate it is necessary to organise one's thoughts in a coherent way. Many of the problems of communication discussed above also exist when there is disease of or damage to the cerebral cortex, but some additional factors must be considered.

To grieve it is necessary to remember what you have lost. This simple fact explains the relative lack of grief that is found in patients with a severe dementia. Less severe forms of brain damage may, however, give rise to great distress. As long as people have sufficient mental function to realise what they have lost they can be expected to grieve; their grief, however, is likely to take different forms from that of people with intact cognition.

Rapid onset
Cognitive losses of rapid onset (acute confusional states) cause much more distress than the insidious onset of dementia. The experience of disorientation can be very frightening, particularly in an unfamiliar environment. Anxiety itself impairs concentration and judgment, aggravating the symptoms that caused it in the first place. Well meaning nurses and doctors may be seen as strangers who are assaulting the person, and patients may hit out to defend themselves. The thought that we may be losing our mind is so frightening that it is likely to be denied. People will confabulate stories to explain the gaps in their memories and, because their cerebral function is impaired, these stories are often transparently ridiculous.

Care of confused patients
The implications for care are clear. Whenever people are inclined to confusion we should try to maintain their orientation by providing them with reassurance and with simple and familiar cues. If they become confused at night we should turn on the light and talk clearly and reassuringly to them. Warm and affectionate support will often relax tension and improve cognitive function. Although tranquillisers are sometimes needed, they may aggravate confusion and it is wise to keep their use to a minimum and to tail them off as soon as possible.    

It is often the partners and caregivers of confused patients, rather than the patient, who need a shoulder to cry on

Progressive cognitive loss
In the more gradually progressive forms of cognitive loss (dementia) people have time to get used to their loss of memory and are less likely to become agitated. Even so, they may get upset if something forcibly brings home to them the fact of their loss of mental ability. Teasing relatives or angry staff who blame patients for being "stupid" may trigger a "catastrophic reaction" in which the patient may rush off, assault people who are to hand, or burst into tears. It is unkind repeatedly to remind brain damaged people of what they have lost in the mistaken idea that they need help to grieve.

Although the dementing patient's grief will usually grow less as his or her condition becomes worse, the same cannot be said of the grief of close family members. It is hard for a husband or wife to accept that the sensitive, considerate, and intelligent partner of 40 years has become forgetful, insensitive, and incapable of the degree of abstract reasoning necessary to see another person's point of view.11 Many partners and other caregivers will deny the severity of the impairment and interpret the patient's behaviour as wilful or bad. It is often they, rather than the patient, who need a shoulder to cry on. Organisations such as the Alzheimer's Society can do much to educate and support carers.

The articles in this series are adapted from Coping with Loss, edited by Colin Murray Parkes and Andrew Markus, which will be published in July.

    Acknowledgments

Funding: None.

Conflict of interest: None.

    References
Top
References

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  2. Fitzgerald RG. Visual phenomenology in recently blind adults. Am J Psychiatry 1971; 127: 1533-1539[Abstract/Free Full Text].
  3. Fitzgerald RG. The newly blind: mental distress, somatic illness and disability. Eye Ear Nose Throat Monthly 1973; 5: 2:99-101, 127-32. 
  4. Fitzgerald RG. Commentary on sexual behaviour in the blind. Med Aspects Hum Sexuality 1973; 7: 60.
  5. Fitzgerald RG, Ebert J, Chambers M. Reactions to blindness: a four year follow-up study. Percept Mot Skills 1987; 64: 363-378[Medline].
  6. Knapp PH. Emotional aspects of hearing loss. Psychosom Med 1948; 10: 203-272[Abstract/Free Full Text].
  7. Jones L, Kyle J, Wood P. Words apart: losing your hearing as an adult. London: Tavistock , 1987.
  8. Thomas AJ, Herbst KR. Social psychological implications of acquired deafness for adults of employment age. Br J Audiol 1980; 14: 76-85[Medline].
  9. In: Swash M, Oxbury J, eds. Clinical neurology. , Vol 1 London: Churchill Livingstone , 1991.
  10. Oehler-Giarratana J, Fitzgerald RG. Group therapy with blind diabetics. Arch Gen Psychiatry 1980; 37: 463-467[Abstract].
  11. Theut SK, Jordan L, Ross LA, Deutsch SI. Caregiver's anticipatory grief in dementia. Int J Aging Hum Dev 1991; 33: 113-118[Medline].

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