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Maintaining quality of life in dementia care

Suzy Turner
Occupational Therapist

Most people suffering from dementia experience a gradual decrease in their ability to communicate as the condition progresses. Suzy Turner explains the three main types of dementia, and gives some advice for practitioners managing this vulnerable group of patients

Currently, there are 700,000 people with dementia in the UK. The proportion of people with dementia doubles for every five-year age group, and two thirds of people with dementia live in the community, while one third live in a care home.1 More significantly, it is thought that only one-third of people with dementia receive a proper diagnosis. Therefore, the implication for practitioners who work with older people is that, regardless of the practice setting, you will come into contact with varying levels of cognitive ability.

The National Dementia Strategy 2009 is a five-year plan, one of the main aims of which is to ensure that all health and social care staff receive the correct training to deliver effective treatment and support for people with dementia.2

This article will specifically focus on communication problems, beginning with a brief overview of the main neurological conditions, including Alzheimer's disease, vascular disease and dementia with Lewy Bodies. We will then look at the impact these conditions have on the way in which an individual with dementia communicates.

Neurological impairment
One of the most common features in all forms of dementia is memory loss. We need memories to start conversation, continue talking, use words and understand what people are telling us. The communication skills of individuals with dementia will vary; however, for most people there is a gradual decrease in their ability to communicate as their dementia progresses. The three main diseases that affect the parts of the brain involved with thought processes are Alzheimer's disease, vascular disease and dementia with Lewy bodies.

Alzheimer's disease
Alzheimer's disease, the most common form of dementia, causes a reduction in the amount of some brain chemicals (neurotransmitters); in particular, one called acetylcholine. These chemicals help to send messages between brain cells. Tiny deposits or "plaques" also form throughout the brain. It is not known why these changes in the brain occur, or exactly how they cause dementia.

Individuals with Alzheimer's disease may also experience the following communication problems:

  • Difficulty following the topic of a conversation.
  • Misunderstanding prolonged or complex conversation.
  • Difficulty maintaining attention.
  • Difficulty using the right words.
  • Difficulty following verbal instructions.
  • Repetitive questioning.
  • Incorrect use of words.
  • Withdrawal from conversation.

Vascular disease
Vascular disease is caused by problems with the small blood vessels in the brain. Tiny strokes throughout the "thinking" part of the brain prevent the blood from getting past, so the section of brain supplied by that blood vessel is damaged or dies.

An individual with vascular disease may have a mixture of communication difficulties, depending on the area of the stroke. You may observe:

  • Physical difficulties with speech muscles.
  • Feel depressed and becomes withdrawn.
  • Socially inappropriate statements - may be swearing and/or sexually explicit language.
  • Reduced motivation to interact.

There can be a variety of implications for practice when working with individuals with vascular disease, as the extent of the condition is highly dependent on the area of the brain affected.

Dementia with Lewy bodies
Dementia with Lewy bodies is thought to be due to tiny abnormal protein deposits that develop in nerve cells. It is not clear why such "Lewy bodies" develop but they interfere with the normal functioning of the brain. Each condition affects different areas of the brain, causing specific impairments that can result in different communication difficulties. If we can understand the different limitations people may have, we are in a better position to facilitate communication using those abilities still available.

Individuals who have dementia with Lewy bodies may also have:

  • Slowness of processing thoughts and ideas.
  • Physical difficulties with speech muscles.
  • Reduced eye contact, facial expressions and gestures.
  • Slurred speech.
  • Slow responses.
  • A mask-like expression.

It can be helpful to understand the impact neurological impairment has on an individual with dementia, but to ensure person-centred care we need to take time to understand an individual's personality, and how they have coped with situations throughout their lifetime. We also need to take into account a person's biography, what is important to them and what they couldn't live without.

It can be easy to assume that aspects of the person's behaviour and communication impairment are caused by their condition, but other physical and mental health problems can contribute to such changes. We also need to look at a person's interactions; if they are not given enough time to carry out a task or are belittled and embarrassed while doing so, they are more likely to experience feelings of frustration.3

Case study
Mr X is 79. He is married and has two children and five grandchildren. During his working life he ran his own garden maintenance business. He had always been a quiet type who didn't enjoy working alongside others. During his working life he was very methodical, and put a lot of thought into structuring his days. He was quite forgetful so was a fan of lists, diaries and the occasional verbal reminder from his wife, and he hated technology like computers. His wife was the social one who enjoyed finding new customers for her husband and liaising with existing ones. Mr X was a relatively healthy man, although he had a history of back pain and insulin-controlled diabetes.

Eighteen months ago Mrs X noticed that her husband was beginning to stumble over his words. Initially, he used humour to cover this up; however, soon afterwards she noticed him becoming more frustrated. Eventually, he withdrew to the garden whenever possible and avoided lengthy conversations with others.

About six months ago, Mrs X noticed that his moods appeared all over the place, occasionally being volatile towards his neighbours, and accusing them of digging up his plants. He had been forgetting to lock the back door and, occasionally, his wife had found him getting up in the night to water the plants. She was constantly reminding him to watch what he was eating and he had become disinterested in attending to his personal care. The doctor has recently diagnosed him with Alzheimer's disease. 

What do we know about Mr X's usual ways of communicating?
How can knowledge of Mr X's biography help us tailor a care plan to meet his needs?
How can Mr X be supported at home in order to remain independent?

Thinking about a person-centred approach, we know that Alzheimer's disease can cause problems with using words and engaging in communication. Therefore, we need to consider other methods of communication, eg pictures and written notes. Looking at his personality type and biography, we know he is quiet and that his wife is more sociable, so we may want to consider her role when communicating with Mr X. We also know that diabetes can cause mood swings if not controlled and that, if Mr X is in pain and unable to express this, both of these could be contributing to his behaviour and communication impairment.  

Effective communication strategies
Communicating effectively with the individual with dementia and their family is vital so that they can make informed choices about their care. It is far better to take into consideration an individual's usual ways of communicating rather than implementing new strategies; the person is already finding their condition and the environment in which they are living to be challenging.

Ways to encourage effective communication

  • Cut down noise and other distractions, such as the television.
  • Think about the positioning of chairs.
  • Make use of good body language.
  • Use short sentences; don't string more than one sentence together.
  • Use closed-ended questions that encourage one- or two-word answers; for example, "Would you like a cup of tea?".
  • Say when you have not understood.

In addition to effective communication, there are a variety of communication aids available for individuals with dementia that can improve quality of life. These include the following.

  • Whiteboards can be used to display information. Carers can encourage the individual with dementia to write down a list of tasks and reminders for the day/week ahead.
  • Pill dispensers with inbuilt reminders, operated by a sound or recorded message, can inform the user when it is time to take their tablets.
  • Photo phones can take the stress out of remembering a number; the user simply presses the photo of the person they are trying to contact.
  • With voice alert alarms, a relative can pre-record a message that, when activated, tells the person with dementia what to do, eg, stay indoors until carers arrive.

One of the key messages from the dementia strategy is that social environment is important, and that quality of life is as much related to the richness of interactions and relationships as it is to the extent of brain disease. It is the responsibility of healthcare practitioners to consider how best to meet the person's communication needs and, thus, help maintain their quality of life. 

Alzheimer's Society. Dementia 2010: The prevalence, economic cost and research funding of dementia compared with other major diseases. Available from:
Department of Health (DH). Living Well With Dementia: A National Dementia Strategy. London: DH; 2010.
Kitwood T. Dementia Reconsidered: The Person Comes First. Buckinghamshire: Open University Press; 2007.

Your comments (terms and conditions apply):

"A good informative article. The case study helped to understand communication challenges and ways of address them" - Diana Mukonoweshuro, Wandsworth