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Let's stand up for people with dementia

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VOL: 98, ISSUE: 38, PAGE NO: 34

Penny Smith, RMN, is head of the Petherwin dementia care unit, Kernow House, Launceston, Cornwall

The care of older people has traditionally not been a popular career choice for nurses, with caring for those with dementia an even less attractive option. Working in a nursing home with this client group used to be seen as 'career suicide' and the specialty was often considered a ghetto in which nurses with little skill or ability ended up. Nothing, however, could be further from the truth.

The care of older people has traditionally not been a popular career choice for nurses, with caring for those with dementia an even less attractive option. Working in a nursing home with this client group used to be seen as 'career suicide' and the specialty was often considered a ghetto in which nurses with little skill or ability ended up. Nothing, however, could be further from the truth.

To provide quality care for people with dementia, nurses need a range of skills and an ability to think creatively. The professional challenges posed by this condition, the incidence of which is rapidly increasing, have guaranteed it a prominent position on the health care agenda and dementia care now presents career opportunities that would have been unthinkable in the past.

The term dementia describes a group of symptoms caused by changes in the brain. Although each person with dementia is unique and will experience the condition in an individual way, the symptoms typically include problems with memory, speech and perception. Dementia gradually robs people of their independence, as simple, everyday tasks become impossible to perform without help.

Although it is a degenerative disorder, the speed of progression varies between individuals. Alzheimer's disease accounts for about 60% of all cases of dementia (Alzheimer's Society, 2002).

Professionals who support and care for people with dementia are responsible for ensuring that their dignity is preserved and that their individual skills and abilities are maximised and retained for as long as possible.

Dementia can be difficult to diagnose in its early stages. In many cases the symptoms can be mistaken and dismissed as depression, absent-mindedness or preoccupation. With hindsight, carers often realise that something was not quite right long before the diagnosis was made. The most common test used to diagnose the condition is the Mini-Mental State Examination (MMSE, see box).

Many GPs and nurses are poorly informed about dementia. The Audit Commission (2002) found that less than half of GPs felt that they had received sufficient training to enable them to diagnose and manage dementia. It also found that only half of all carers were told what the problem was or how dementia was likely to affect their relative.

Residential care
In most cases the person with dementia will eventually require full-time care. When the dementia has reached the stage where carers, who are often relatives, are no longer able to provide the necessary level of care, it is usual to move the patient into a 24-hour care environment.

People with dementia may become incontinent or need a high level of support to meet their nutritional requirements. They may begin to wander away from their homes or put themselves and their families at risk in other ways as a result of forgetfulness. They may also have disturbed sleep patterns or behavioural difficulties.

It is also possible that people with dementia will no longer recognise the people caring for them. In my experience, this is what finally tips the scales for many carers. They often find that they can keep going as long as their loved one seems to appreciate them. Once recognition has gone, the process of caring may appear to be an impossible, thankless task. Relatives often describe feeling worse than if they had been bereaved. The person has not died but their personality has often disintegrated beyond recognition.

If residential care becomes necessary, it is vital that this is delivered and monitored by trained and experienced people. People with dementia are often inappropriately placed, causing distress and upheaval for them, their families and others around them. Inappropriate placement can speed up the progression of the disease, particularly if another move becomes necessary.

When people with advanced dementia need residential care, community staff have a responsibility to ensure that they obtain all the information necessary for appropriate referral and placement. It is important that families are made aware of all the suitable options, which will enable them to make an informed choice, because the patient concerned will not be capable of making such a decision.

A thorough assessment of need must be carried out by nurses before admission. This must address all aspects of the person's physical, psychological and social care. Where possible, the family should be encouraged to take part in this process. Formal assessment tools such as the MMSE serve little purpose at this stage because scores will be predictably low (or nil). However, they are useful in the earlier stages of dementia as a way of monitoring the progression of cognitive deficit.

Maintaining activities
When people with dementia go into residential care the focus should be on finding out what they can still do independently, rather than what they cannot do, and what they still seem to enjoy. The next step is to determine how these skills can be preserved. Helping people to retain skills for as long as possible fosters a sense of dignity and purpose.

The value of reminiscence and reality orientation has long been recognised, but in my experience the most useful thing those caring for people with dementia can do is help them to engage in a variety of activities. These can often succeed in 'reaching' people with dementia, even if traditional means, such as verbal communication, can no longer be relied on because of cognitive deficit. Activity can take many forms: it may be that simply listening to music together stimulates a response.

The options are as limitless as the carer's or professional's imagination: art, drama, dance, play, exercise, cooking, washing-up and creating music with simple instruments have all been used. The activity need not be complex: great satisfaction and pleasure can be derived from enabling people to do ordinary things. Professionals are often caught up in so much legislation that we think these things are too risky, but taking risks - after completing a risk assessment - can enable us to reach people. The fact that patients are allowed to take part in everyday activities can make them feel useful and give them a sense of purpose.

Planned or organised 'entertainment', which is often provided with the best of intentions, can be interpreted as patronising or demeaning by the people in our care. There is nothing wrong with providing this sort of activity, but much satisfaction and pleasure can be achieved with a lot less effort and stress. Like the rest of us, people with dementia are generally content to feel useful and do not require all-singing, all-dancing, round-the-clock entertainment. They may no longer be able to express their wishes verbally, but their emotions remain intact and they still need a chance to express their feelings. What they need most is to feel safe, loved and valued.

The need to feel secure
When teaching people about dementia, I ask them to imagine how they feel when they wake up suddenly and for a moment cannot work out where they are. I believe that for people with dementia, this can be an almost constant state.

Miesen (1992) attaches great significance to the idea that people with dementia need to feel safe, likening it to 'parent fixation' and attachment behaviour. People with dementia often display searching behaviour, which has been described as aimless wandering, but Miesen believes this may occur because they feel frightened, abandoned and unsafe. These feelings lead them to search for, and try to access, an attachment figure, such as a parent, in order to feel safe.

Constantly referring to a deceased spouse or parent as if they were alive could be viewed in psychiatry as delusion, hallucination or having illusions, and may be treated with medication. However, when this behaviour is seen from the angle of attachment behaviour, other ways of managing the person's distress may be found. Similarly, agitation or aggression can be explained as a normal reaction to feeling insecure when viewed in this way.

Assisting feelings of security
It is vital that the prime aim of caring for people with dementia should be to make them feel secure. This can be achieved in a variety of ways:

- Staffing should be organised so that there is continuity;

- Changes in staffing should be kept to a minimum, so that faces and voices are familiar;

- The environment should be structured in such a way that residents do not become lost: for example, long, plain corridors can lead to confusion and distress;

- Smaller, more homely, environments will give residents the chance to become familiar with their surroundings.

Daily activities in residential care should, where possible, mirror a person's habits before they were admitted. Taking a detailed history will help this process. The more we find out about individuals' likes and dislikes, the better able we are to avoid potentially distressing situations.

Communal living can never be the same as living in a small family home. When I took four residents with dementia on holiday recently, I was amazed to discover how much more capable they became when living in a 'normal' environment. The staffing ratio for the week was one-to-one, and I am certain that this affected the changes we saw in behaviour. We were free to give as much time as necessary to each resident.

The staff's relaxed attitude allowed closer relationships to develop with residents, and by staying in small family bungalows the residents and staff were able to live as a family unit. Meals were cooked and eaten together, and clearing up, laundry and other chores were shared. Since our return, we have made changes on the unit in an attempt to incorporate some of the lessons learned on that holiday.

Future practice
Nurses working in this field have a responsibility to raise the profile of people living with dementia. We need to share and celebrate the satisfaction to be gained from working with this patient group and continue to challenge stereotypical images of the disease. Discriminatory attitudes, both in and outside nursing, need to be challenged, but this can be done only if people have the courage to stand up and act as advocates of the people in their care.

- For further information see:

The winner of this year's Award for Excellence and Innovation in Dementia Care Nursing, which is sponsored by the Queen's Nursing Institute and the Alzheimer's Society, will be announced latest this year.

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