Supporting people to live well with dementia

The Social Care Institute for Excellence explores person-centred approaches to supporting people with dementia

High-quality support for people with dementia begins with the recognition that each person is an individual with their own needs, preferences and life story. An understanding of the experiences of the person with dementia, of their strengths and abilities, combined with a multi-disciplinary team approach, will ensure the person’s quality of life is enhanced.

There are many forms of dementia and they all involve permanent and progressive damage to the brain. It is not an inevitable consequence of ageing. Despite images that show people with dementia as disoriented or dishevelled, in reality they look like everyone else. This means that unusual behaviour caused by dementia may be misunderstood by other people.

For example, we may assume that a person will remember us if we have met them on a number of previous occasions, but for a person with dementia the damage to the brain may have caused short-term memory loss or facial recognition problems, rendering them unable to recognise a face that should be familiar.

What appears to be exceptional forgetfulness, or even rudeness, is in fact the result of physical changes in the brain.

Focus on positives

Living with dementia is difficult and distressing. It evokes fear and discomfort in others and carries a great stigma. Some people describe it as coping with the loss of oneself.

Although it is sometimes assumed that people with dementia do not have insight into their own condition, many do, even if they have some difficulty expressing it. Also, it is often the case that a person’s difficulties become the focus of attention for both the carer and the person with the condition. However, there is plenty that can be done to improve the lives of people with dementia and approaches to care have changed over recent years.

Instead of regarding dementia as a hopeless condition, people should be supported to “live well” with dementia, rather than suffer from it – a key theme of the Department of Health’s national dementia strategy for England. By focusing on what the person can do, rather than what they can’t, they can be helped to face the daily challenges of living with impaired mental functioning.

Life story

The starting point for support should be to establish strong two-way communication. Listening carefully is vital to understanding each individual’s experience of dementia and to getting to know their needs, strengths and abilities. The aim should be to understand their past life before the onset of dementia, as well as their current situation.

A person’s life history is central to their identity, and events and occupations from their past influence their actions and needs today. Learning about the background of a person with dementia can help a carer gain a better understanding of their needs. It will also help them to keep their sense of identity intact.

Speech and language

There can be many difficulties in communicating with a person with dementia, particularly as the disease progresses, but there are ways to ease the process.

  • Language should be kept simple because unfamiliar words will be difficult to understand, as will unfamiliar accents.

  • Speech should be paced slowly and the person allowed to respond in their own time.

  • Sentences should be kept short, making just one point at a time, because problems with memory and attention may mean that the person cannot remember the beginning of the sentence by the time the speaker has reached the end of it. It may be necessary to make the same point several times.

  • Background noise and other distractions will make communication more difficult. If the speaker appears unfamiliar, the person may not feel that they can trust them.

  • Where dementia is advanced, words may become entirely incomprehensible and it will be as if the speaker is using a different language. At this point, communication needs to be non-verbal, by using touch and simple gestures, for example.

By focusing on the person with dementia and learning about their past and present, we can understand the person much better and work out the best way of supporting them as an individual.

Case study

Sometimes the behaviour of people with dementia can be explained by their personal history. Knowledge about a person’s past life can help care staff to understand their behaviour and accommodate it within the daily routine of a care home. This was the case with Barry, who had dementia and lived in a care home.

A practitioner who worked with Barry says: “Barry used to choose to sit in a wide corridor, but often when people walked past he would shout at them and become anxious and upset. We didn’t understand why, until we discovered that, during his active service in the war, he had responsibility for guiding his troops through heavily landmined areas. We realised that his shouting was his attempt to keep us safe. We listened and realised he was trying to give us directions.

“So we followed his directions and let ourselves be guided by him to find a safe passage down the corridor. When we reached the end of the corridor we’d turn back and thank him. It didn’t take us any longer to get down the corridor but each time we did so Barry felt a sense of pride and achievement.”

Practitioners’ messages

  • People with dementia are individuals, so treating them as unique people with individual histories, experiences and strengths should be the cornerstone of supporting them.

  • Dementia is not visible externally so the actions of people with dementia can be misunderstood.

  • Learning about the history of people with dementia can provide crucial insights into their needs and requirements.

  • Focus on what people with dementia can do rather than always thinking of the problems and difficulties they face.

  • Effective two-way communication may be difficult, particularly as the condition progresses, but it is vital that the carer puts every effort into establishing and maintaining the best possible communication.

Further information

SCIE Dementia Gateway

Alzheimer’s Society

Research abstracts

Author STOKES Graham

Title And still the music plays: stories of people with dementia

Publisher Hawker, 2008, 244p, bibliog

Abstract Graham Stokes explains that relying on the disease model encourages care staff to avoid analysing the behaviour of the person with dementia. In all chronic diseases, it is sensible to look for the person behind the label. The stories provide examples of care workers relying on an explanation of dementia, rather than trying to understand the person’s behaviour in the context of their life story. The author states that “wandering” may be the most misused label in dementia care, and provides a thoughtful definition of this.

Author Department of Health et al

Title Living well with dementia: a national dementia strategy: implementation plan

Publisher Department of Health, 2009, 35p

Abstract This describes arrangements for national and regional support and programmes that have been put in place to support delivery of the national dementia strategy. This refreshed plan replaces the one that was issued alongside the strategy in February 2009. The plan is in four sections: the implementation task; implementation support; implementation programme; and performance assessment.

Author HOBBS Lesley

Title Communication and dementia: how can we help families?

Publisher Journal of Dementia Care, 17(2), March/April 2009, pp20-21

Abstract Helping families and friends come to terms with a person’s dementia and learning to see every form of behaviour, challenging or otherwise, as a form of communication should be a priority for all care staff. This article gives some practical advice that can be shared with relatives, friends and care staff. It covers adapting to change and better ways to communicate.

Author UNIVERSITY OF BRADFORD, Bradford Dementia Group

Title Enriching opportunities: unlocking potential: searching for the keys

Reference University of Bradford, Bradford Dementia Group, 2006, 30p

Abstract The Enriched Opportunities Programme is an intervention developed by the ExtraCare Charitable Trust and Bradford Dementia group to improve the well-being and activity of people with dementia living in long-term care. The programme has five key elements: specialist expertise; individualised assessment and case work; activity and occupation; staff training; and management and leadership. This research evaluates the impact of the intervention on residents and tenants and on the staff caring for them. It also aims to develop the intervention into a workable practical model in extra care housing and nursing home care.

This article is published in the 5 November 2009 edition of Community Care magazine under the headline Supporting people to live well with dementia 

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