Communication could hold the key to successful dementia nursing in the community
Zoë Elkins, Head of Care Strategy, The Good Care Group
Zoë trained as a psychologist and has worked with people with dementia for the past 11 years. A lifelong interest in brain and behaviour, and a passion for dementia care and the problem solving that comes with this has led Zoë to work extensively with people with dementia in both the care home and domiciliary care sectors. Currently, she works for The Good Care Group – a high quality provider of live in care services enabling older people to stay in their own homes and communities with round the clock support. The Good Care Group specialise in providing care and support for people living with dementia and aim to promote well being and a better quality of life for their clients.
The Good Care Group: www.thegoodcaregroup.com Tel 08000 234 220
The importance of community nurses
Community nurses play a crucial role in the primary health care team, particularly for people with dementia who may be living at home but find it harder to get out of the house for health care appointments. As well as providing direct care, community nurses also have a teaching role, working with patients to enable them to care for themselves or educating family members. Community nurses play a vital role in keeping hospital admissions and readmissions to a minimum and ensuring that patients can return to their own homes as soon as possible.
There are over 800,000 people in the UK living with dementia at present, including 17,000 younger people and 25,000 people from black and ethnic minority groups. By 2021 the total number will exceed 1 million. Only one third of people with dementia are living in care homes, with the remaining two thirds living in their own homes and communities [1]. A recent report by the Alzheimer’s Society [2] found that 83 per cent of respondents (people with dementia or their carers) said enabling the person with dementia to stay at home was critical, and 59 per cent said being an active part of the community was important to the person with dementia.
It is clear that community nurses play a vital role in enabling people with dementia to remain safe and well at home, so ensuring that these nurses have the skills and support needed to achieve this is critical.
The ‘Difference in Dementia Nursing Vision and Strategy’ [3], states that all nurses need to be dementia aware, and that those working with people with dementia should have verified dementia care skills. Pauline Watts, Department of Health Nurse Lead for Dementia, said:
“Dementia is every nurse’s business – with a change in mindset, practice, commissioning and education, nurses can make a real difference to people living with dementia and their carers and families” [3].
Communication is a challenge
Providing care and treatment for people with dementia in the community is not without its challenges. In the author’s clinical experience, communicative difficulties can lead to problems with reporting symptoms and the effects of medication, as well as trouble understanding what different treatments are actually for. Non compliance with treatment plans and medications is not uncommon, and behavioural challenges can exacerbate this.
Difficulties with language and communication can occur in all forms of dementia, and in many instances language skills will vary from day to day and time to time [4]. It is well known that most patients with Alzheimer’s experience word finding difficulties which become worse as the disease progresses [5]. Early signs can include problems finding the right words, substituting incorrect words or finding no words at all [4]. Other factors may also affect the ability of the person to communicate, including pain, discomfort, illness or the side effects of medication [4]. The speech patterns of patients with Alzheimer’s is sometimes described as ‘empty’ because it contains a high proportion of words or utterances that convey little or no information to the casual bystander [5]. For example, Alzheimer’s patients produce a low ratio of propositions to words, the thoughts they express are often left incomplete [6] and they tend to overuse ‘empty’ words such as thing, it, do [7].
Communication difficulties can impact on many aspects of nursing provision. The identification and successful management of pain can be inhibited by communicative barriers – both because pain may not be clearly reported by the patient [8] and because pain can be a cause of aggressive or challenging behaviours – one study found that the presence of pain makes it six times more likely that aggressive behaviours will be demonstrated [9], which in turn can further impact on the ability to provide medication, treatment and support. Behavioural challenges are now widely regarded as an expression of unmet need [10]. Communication difficulties between carers and people with dementia may increase stress, resulting in behavioural problems [10]. Behavioural problems can therefore act as a barrier to successful nursing care. Compliance with medication is known to be substantially affected by the presence of dementia [11]. Impaired cognition has been identified as the main predictor of preventable medication related hospital admission [12].
Kitwood’s theory of dementia suggests that successful collaborative communication increases well being and quality of life [10]. If community nurses were equipped with dementia specific communication skills, vital care and treatment may be delivered more effectively to people with dementia who are living in the community. By improving nursing outcomes for people with dementia, community nurses may be better able to fulfil their vital role in preventing hospital admissions, reducing morbidity and mortality and improving well being for their patients.
Understanding the person with dementia
In the author’s experience, carers and care-workers often believe that people with dementia know how they are feeling, even though they may not know why. This idea is now supported by neuro-imaging evidence from Iowa which has shown that whilst the areas of the brain associated with memory and cognition become damaged with dementia, the areas of the brain associated with emotional experience remain active [13]. People with dementia are also known to have more problems with formation, storage and accessing of new memories than with the accessing of older memories [14]. Recent memory is affected first in AD because the hippocampus and nearby entorhinal cortex are the first brain areas damaged by the disease. As a result, a person with AD may remember every detail of a childhood event but be unable to recall something that happened yesterday or an hour ago.
This pattern of damage also can lead to confusion about the past and present. A person may think a long-deceased relative is still alive, for example, because his or her memory of the relative from long ago is stronger than the memory of the relative's more recent death [15]. People with dementia will continually make sense of the present by using past information, looking for memories which match their current emotional state [16]. Thus a patient who has had a great morning with her carer doing the things she loves, may have no recollection of these activities. However, she will find herself in a pleasant and calm emotional place. She is just as likely to use old memories to help her make sense of the ‘here and now’ and may well comment about her parents or young children, but she will do so in a relaxed and comfortable way. Conversely, a patient who has had a traumatic morning because someone tried to make her take her clothes off to have a shower, may have no recollection of those specific events, but will still be feeling very scared and angry. She may still make use of old memories to explain her current emotional state, and she is now likely to find old memories which contain the same fearful and agitated feelings she is experiencing in the present – leading her to relive old trauma. This way of understanding dementia was first described by Penny Garner in 2008 in her account of an approach to dementia care known as the SPECAL method and provides an explanation of what dementia might be like to live with, day by day, for the person with dementia [17].
Understanding dementia in this way is the first step towards successful communication. The tips below are known as the Three Golden Rules and all arise from a special understanding of dementia which underpins the SPECAL method and which is described in the book Contented Dementia, by Oliver James [18].
Tips for successful communication – the ‘3 Golden Rules’
- do not ask direct questions – these can leave the person with dementia flummoxed – struggling to find information which may not have stored or be easily accessible to them. Even the most seemingly benign question such as ‘would you like a cup of tea’ can have dire consequences as the person searches recent memory for the information they need to respond (would I like a cup of tea? Have I just had one? Is anyone else having one? Should I be doing something else right now? Have I got time? Do I have to pay for this tea?, etc) and finds to their horror that they are drawing a blank. Panic soon follows [17,18]. Instead, try using statements as a way of soliciting a response and presenting choice – such as ‘Hmm, I fancy a cup of tea’ or ‘Time for a cup of tea, perhaps...’. You are presenting a platform from which a clear choice can be made and communicated (or ignored, if the person so wishes!) –you are not putting undue pressure on the person with dementia. By taking this approach you avoid causing any feelings of panic or distress. This enables the person with dementia to remain in a calm state of well being, which in turn will have a positive effect on their ability to communicate [17,18]
- do not contradict the person with dementia. People with dementia will often say things which we may not agree with- ‘I saw my mother this morning’ may be a prime example. Resist the tendency to ‘correct’ the person. This will serve no good. Your ‘correction’ is likely to leave the person feeling upset, foolish or even angry. However, the actual information you have tried to impart is unlikely to be stored 15. The person with dementia will not ‘learn’ that their mother did not come to see them today – instead they will just become more upset and distressed without necessarily even knowing why they are feeling this way. Feelings are so much more important than facts for the person with dementia and our job is to avoid causing additional distress wherever we can –especially as it serves no benefit in the short or long term [17,18]
- listen to the person with dementia and learn from them [17,18]. Listen to the questions the person with dementia is asking, and consider very carefully what the best answer might be from their perspective rather than your own. It is crucial that the information they receive generates good feelings for them. We owe it to the person with dementia to avoid leaving them with anxieties that they cannot, only moments later, explain. So we must search for the information and the language that is most acceptable to them. People using this approach have found that the person’s anxious questioning gradually subsides [19]
“Dementia is every nurse’s business – with a change in mindset, practice, commissioning and education, nurses can make a real difference to people living with dementia and their carers and families”
Pauline Watts
To find out more about the SPECAL Method see www.contenteddementiatrust.org
To find out more about The Good Care Group see www.thegoodcaregroup.com