Dementia management principles
Dementia is not global (until late in the disease)
While the definition of dementia as an acquired global deterioration of memory, intellect and personality is useful for clinical purposes, it implies that all aspects of mental functioning are impaired. Certainly this does occur late in the disease but not in the early and middle stages. It is important to maximise the affected person's assets. If auditory memory is more affected, then use visual memory more, e.g. signs, written directions or pictures. If memory and language skills are affected, but the ability to enjoy or even play music, or to do simple repetitive tasks is preserved, then these activities should be encouraged.
Enjoyment does not require memory
Our society's philosophy is that unless you remember something it is not worthwhile doing. So that if we go on an outing, watch a movie, or share a good joke, this is only regarded as worthwhile if it is remembered. For many it seems that they must have some snapshot or movie in their brain to make it valid. This is nonsense! Often the feeling or ambience of the event will linger long after the memory has faded. Dementia may be a terminal disease but it is not the end.
Last in, first out (and vice versa)
What is learnt most recently is most easily forgotten. Words that were said a minute ago, events that happened a day ago or visits that occurred a week ago are soon forgotten, whereas incidents from 20 to 40 years ago are recalled with great clarity. This reverse principle - first in, last out - may be frustrating but can be used to therapeutic advantage. Try to stimulate the patient with activities or conversations that rely on old memories rather than recent skills. Also, certain types of memory—music, dancing, playing games—are more resistant to decay. If the dementing person enjoys music, play music from a period that is meaningful. One patient, a doctor, could not read books because he could not remember what was happening from one page to the next. However, he derived considerable pleasure from re-reading books he had enjoyed in his teens and 20s.
Stimulate but do not overwhelm
The aim is to get the most enjoyment out of each day. It is important to take one day at a time, do one activity at a time, and to stimulate the affected person without overwhelming him or her. For some, 10 minutes may be sufficient for an activity, for others, an hour or two is appreciated.
The aim of the activity is to try and stimulate parts of the brain not affected by the illness and to derive enjoyment from the activity. Board games, such as Trivial Pursuit (remember to change the rules to make the game easier and to use the questions on old knowledge), dominos and checkers are quite easy to play and useful. Other possible activities include physical exercise, going for a walk, listening to music, dancing and constructing a 'This is Your Life' book (a scrap book converted into a biography of the affected person's life using photographs, mementos etc).
Dementia has a 'career'
As a person with dementia deteriorates, different problems may arise while others may vanish. For example, a dementing man becomes aggressive, suspicious and paranoid; his wife is very distressed. The man is prescribed antipsychotic medication such as thioridazine or haloperidol in low doses. Six months later such paranoid thoughts have vanished and treatment is no longer required. Delusions or hallucinations may be present for a time but then either vanish or lose their intensity or ability to distress the affected person.
Problems need to be continually reassessed. Treatment that is appropriate at one stage may be inappropriate at a later stage. For example, a day centre may be rejected early in the illness by staff as the person may require too much attention and may not benefit from attendance. However, there may be a middle phase where attendance may be stimulating for the patient and helpful for the carer.
Regression occurs in dementia
Many of the skills that people acquire are lost sequentially with dementia. Think of an infant developing the skills to feed, walk, talk, use the toilet and dress. In the later stages of the illness there is a regression as the person with dementia loses these skills in reverse order. Again, think of a child's development and this will help in understanding what is happening with the dementing person. It is important never to treat the dementing person as a child, not to patronise him or her. Whereas certain skills may become childlike, other aspects of the person are adult and the person should be treated as such.
Many factors influence how the dementia manifests
Manifestations of dementia are dependent not just on the illness but also on the person, on what sort of person he or she was before the dementia developed, the family, and the environment. Classically, dementia leads to a caricaturing or exaggeration of personality traits that were present before dementia occurred. Somebody who was dominating becomes obnoxiously so. Someone who was suspicious may become paranoid. Someone who was tidy becomes perfectionistic and obsessional to a fault. Others who were gentle and amiable become more so.
Frequently there is a flattening of personality, the loss of self. Occasionally new character traits may become apparent. Disinhibition and out-of-character behaviour may be a very distressing development. In certain types of dementia, personality is more likely to be preserved (e.g. vascular dementia).
Families and environment influence how the dementia presents itself
Families influence how the dementia presents itself. One wife of a dementing man kept insisting that he was anxious and could not tolerate being in a new environment, i.e. in hospital. Yet when the husband was alone he was quiet, gentle and a pleasure to be with. It was only when he was with his wife that he became anxious and irritable. It was soon clear that the wife's anxiety was being communicated to her husband. In other words her reaction to the illness was influencing how the illness manifested itself.
The environment affects the management of the dementia. A dementing person in a nursing home which is situated on a main street with a cliff behind cannot be allowed to wander. The dangers are obvious. In a small country town the same dementing person will be returned home, and not allowed to come to harm. In the former case, the wanderer may receive heavy sedation or, in some cases, physical restraint. The rural wanderer enjoys freedom. Different societies have different expectations about the dementias. The application of this principle is that we can sometimes change the environment to suit the person. The person who becomes confused looking for appropriate clothes may more easily choose from a narrower range ( e.g. put out-of-season clothes in another cupboard), or from labelled drawers (e.g. 'socks', 'underwear').
Dementia affects more than one person
Dementia is not just one person's illness—it is the whole family's. The burden of care rests squarely on the shoulders of the family in the majority of cases. Many studies now confirm high rates of depression, anxiety, social isolation and even physical illness in such families (compared to other families without a dementing relative).
In order for caregivers to be able to provide high quality care they must ensure they are well. They need to attend to their own physical and psychological health, and make sure they have some social outlets. All too often caregivers become totally preoccupied with their role as carer and put aside their other roles in life - friend, parent, individual self. Caregivers must look after themselves as well as their charges.
Friends and relatives of caregivers should provide as much support as possible. For some this might mean regular and frequent telephone calls, for others it might mean looking after the affected person while the carer does the shopping or goes to the hairdresser or has a game of cards with friends.
Sometimes professional help is required to give the caregiver a break. This may mean the use of a day centre or residential care for a weekend or a week while the carer has some respite.
Solve problems creatively
If a problem occurs find out why. Analyse the activity by breaking it down into steps. Is the activity appropriate or relevant for the person? Is the person unable to do the activity because of physical constraints, or because of sensory problems or loss? Is the block a result of cognitive or intellectual impairment such as inability to comprehend spoken words? Is the person motivated? How safe is the activity?
Adapt the environment, not the person
Once the problem has been isolated then consider whether the environment can be adapted ( e.g. different bathing fixtures or a double lock on the door) or the activity changed or simplified. For example, changing the rules of the game, presenting only one utensil with a meal, or doing part of the activity so that the affected person can then complete it.
Create a sense of importance
We all need to feel we have something useful to contribute. Structure activities so that the affected person feels useful. Optimise assets. Avoid using childish motivators, such as sweets. Compliments are more effective when given immediately. Avoid communicating failure; instead of saying "that's wrong", say "try another way" and demonstrate if appropriate.
Last Reviewed: 09 March 2001
