DOWN'S SYNDROME AND
ALZHEIMER'S DISEASE
Approaches
Helping the individual
What are we trying to achieve when helping the person with Down's syndrome
who is also affected by Alzheimer's disease? It is a deteriorating condition
and as yet there are no cures. We cannot remedy it or put it right. So we are
looking for ways to combat (or compensate for) the effects of it. In this way,
we hope to maintain the person's lifestyle as best we can. Because of the
nature of the condition this really means trying to combat the increasing loss
of skills, emotional difficulties, and dependence on help from others. We need
to monitor the person constantly and adapt his/her environment.
Since people retain their individuality, their likes and dislikes, live in
different environments, and have different levels of skill and ability, their
needs will vary. Also the course of Alzheimer's disease varies for each person
so they follow their own path. This makes it difficult to prescribe the best
way of helping an individual. In fact, to try to give an overall recipe of what
to do would be inappropriate. Each case has to be seen individually and carers
really have to use a flexible trial and error approach in seeking what is most
helpful.
But there are some common themes which can guide us and ideas which have
been found to work with other people with this type of dementia. Some of these
are described below, to give an idea of what can be done.
Maintaining skills
The priority is to try to maintain skills and independent functioning. A key
problem is the person's deteriorating memory, so anything that can be done to
prompt memory or compensate for it is helpful. Examples are given below.
Everyday functioning
Laying out clothes in the order they are to be put on may help people to
continue to dress themselves. Similar sequences for bathing, brushing teeth,
and laying tables, can also work. For people who can read or follow picture
prompts, these can also help to keep them helping themselves (e.g. how to use
the washing machine, telephone, etc.).
There is a natural urge in all of us to help people who are struggling and
so take over many simple everyday tasks. Often the speed of life prevents us
from having the time and patience to help them do it themselves. But, in most
cases, the consequences for the people concerned are not helpful. They will
lose their skills and self-respect and may deteriorate more quickly. Help,
therefore, needs to be directed to making it easier for individuals to carry on
doing things for themselves.
Reality orientation (1)
Memory loss causes people to become disoriented in space and time.
Establishing a pattern of referring to the day and time is helpful. This can be
done in everyday conversation, for example: "It's a nice day for a
Tuesday, isn't it?", or: "Is that the time? 11 o'clock already. Time
for a break.".
It can also be achieved by continual reference to a calendar or diary, and
by making lists of daily events or routines. This attempts to reduce the load
on memory by establishing and simplifying routines - for example, a noticeboard
kept in the same place on which the day of the week and date are written, and
the main events of the day are listed in order.
For people who cannot read, one can use pictorial symbols and/or have a
regular pattern of discussing the day and events at set times. If the person
cannot cope with a whole day, then smaller sections of time are needed which
correspond to main daily events (e.g. outlining morning activities at
breakfast, and doing the same at lunchtime for afternoon events, etc.).
Organising the physical environment is also helpful, so that people are
helped to remember where things are and how to get them (e.g. keeping important
things like keys, money, television remote controls, in the same place). We
know of a woman with Down's syndrome and Alzheimer's disease living in a large
residential home who was able to maintain her independent use of the toilet by
following a patterned frieze along the wall at eye level.
It is very important for individuals to feel they have some control over
their lives and know what is going to happen. Uncertainty often leads to
anxiety and emotional distress. By being in control and retaining as much
independence as possible, they can maintain their dignity.
Communication
In some people, Alzheimer's disease results in reduced communication skills
(although we have been told of situations where someone's speech has actually
improved in the early stages of the condition). The key points in communicating
with anyone who has some difficulty in this respect are to:
- establish good eye contact and ensure that the person is paying attention,
i.e. knows that you want to communicate something to him/her
- use a simpler speech pattern (shorter phrases communicating small bits of
information at a time, but in a conversational style)
- slow down the communication and give the other person time to take in what
you say, work out what you mean, and respond
- use more non-verbal communication (gestures and touching)
- try to make the communication fit with the person's level of interest and
understanding, following the leads you are getting as much as possible
Support
Some people in the early stages of Alzheimer's disease may be very aware of
their loss of abilities. It seems only fair that they should be told they have
an illness, whilst reassuring them that they will be fully cared for and
supported. Other people in their lives may also need to be told so that they
are more understanding of things like forgetfulness and wandering into others'
rooms. We have been told of many situations where people with Down's syndrome
and Alzheimer's disease have been well supported by other people with learning
difficulties, once it has been explained to them in straightforward terms (e.g.
that someone has an illness which makes them forget things and behave
differently from usual).
It is also very important to maintain the social part of a person's life.
With social support we all get pleasure from a healthy social life. Without it
we tend to become more isolated, stressed, and anxious. Hence it is important
to help people in the person's social network to understand the condition and
how to deal with it. This applies to carers as well. Carers need support and a
quality of life as well, to enable them to cope better with the condition of
the affected person.
Past memories
Our memories of past experiences are an important part of our identity. As
we become older this becomes increasingly important. Difficulties with memory
can cause confusion in the feeling of identity, and hence distress. Thus
reminiscence, exploiting the familiarity of the past, is very useful for anyone
where an ageing process is taking place. This can be encouraged by:
- visits to familiar places and old friends
- talking about past experiences; this can be helped by using old
photographs, videos, music, and souvenirs which have significance for the
person
- * making a life-book; this has been
found to be particularly useful for people with Down's syndrome who have
Alzheimer's disease (2); essentially it is a photographic
record of someone's life history, supplemented by magazine articles, event
programmes, etc, which illustrates their interests and experiences; video tape
and audio tape recordings can also be used for this purpose
Relatives often find work on reminiscence can be supportive, not only
because they are doing something positive, but because it expresses a life that
has meaning and value for them. Carers who have not known the individual in the
past find life books very helpful because they can get to know the whole person
better, as well as have a focus for communication and reminiscence.
Accepting the tendency of the disoriented elderly person to live in the
past, and to work with it, is the basis of a particular theory and approach
called "validation". Instead of forcing the individual to be
orientated to the present, this approach allows people to express whatever it
is they wish to about their past, thus validating them and their personal
history. (3)
Other needs
It is very important that the general health of a person with Alzheimer's
disease is reviewed regularly. For example, anaemia or infections can make the
individual even more confused. There are many other needs which will be
particular to individual people. Wakefulness at night is quite common and can
present many problems for carers. Sometimes it can be resolved with relatively
simple measures like preventing napping during the day and ensuring physical
exercise. Sometimes medication can help. However, wakefulness can often become
a serious drain on the resources of carers.
Similarly, problems in behaviour, like wandering off or hostility to others,
increase the need for closer supervision. Deterioration in physical abilities
leads to further demands in terms of basic care.
Inevitably the task of caring for someone with Alzheimer's disease is, by
turns, frustrating, tiring, and stressful. Carers need not only to take care of
themselves, but also to be supported in their caring role.
References
1. G Prosser (1989). Down's syndrome,
Alzheimer's disease and reality orientation: a review. Mental Handicap vol.17,
p50-53.
2. J Hogg, S Moss and D Cooke (1988). Ageing and Mental
Handicap. Croom Helm: London
3. N Feil (1982) Validation: The Feil Method. Winslow Press:
Bicester
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