Key learning points:
– Dementia in its various forms diminishes a person’s ability to communicate over time
– As much as 90% of communication with people with dementia is nonverbal. Nurses can often grasp a person’s meaning by carefully observing their behaviour and paying attention to their own nonverbal communication
– Dementia varies from one patient to another and a person centred approach that involves carers and family members is crucial to delivering good dementia care
Dementia is one of the greatest challenges facing health and social care today. There are 850,000 people in the UK living with dementia. Currently, there is no cure and there have been no new treatments for Alzheimer’s disease for over 10 years.1 The condition imposes huge emotional, social and financial costs for the patients, their families, carers and society.
Dementia itself is not a disease. It is an umbrella term for a set of symptoms that affect memory, thinking, problem-solving, concentration and perception. Alzheimer’s disease is the most common cause – but there are also other types including vascular dementia, dementia with Lewy bodies and frontotemporal dementia. Whatever its form, dementia is progressive and will cause a decline in a person’s ability to think, communicate and process new information.
The overall economic impact of dementia in the UK is £26.3 billion, which works out at an average annual cost of £32,250 per person.2 Alarmingly, these numbers will escalate rapidly in the coming years as the population grows and ages. The Alzheimer’s Society estimates that there will be more than one million people with dementia by 2021.3
Although the Prime Minister’s Challenge on Dementia4 has helped to raise awareness and bring dementia to the forefront of the public agenda, there is still a huge social stigma that hinders diagnosis, care and research. A recent study by the Alzheimer’s Society5 found that more than half of people said they put off seeking a diagnosis because they felt this would mean their life was over.
Furthermore, according to an Oxford University study,6 dementia research gets 13 times less funding than cancer, even though the cost of caring for Alzheimer’s disease is significantly higher. Academics say this is partly because people incorrectly believe dementia is a natural part of ageing. The social stigma and misconceptions make it difficult for researchers to get a clear understanding of how the disease first develops and how people with dementia view their illness.
Dementia progresses in a series of stages (early, middle and late). In the early stages a person with dementia may have difficulty finding the right words, particularly the names of objects. They may substitute an incorrect word, or not find the word at all. In the later stages, words may be lost completely. Difficulties with communication can exclude the person from involvement in their care and are upsetting and frustrating for both them and those around them.
The Alzheimer’s Society website (see Resources) has useful tips to help nurses understand and communicate with a person living with dementia. These include:
– Where possible, approach the person with dementia from the front.
– Be careful with names. Some patients may respond more positively if initially addressed more formally such as 'Mr Smith' or 'Mrs Jones'. When the patient becomes more comfortable with you they may be happy to be addressed by their first name.
– A person with dementia will read your body language and tone of voice. Agitated movements or a tense facial expression may upset them, and can make communication more difficult. It can help to read the body language of the patient if they are finding verbal communication hard.
– Make sure no-one speaks down to or over the person with dementia or treats them like a child. No one likes being patronised.
The effect of dementia on the ability to communicate varies with the stage of the disease. A one-size-fits-all approach to care won’t work. Each patient’s difficulties are unique. A person-centred approach to care will aid communication and improve overall wellbeing.
The Alzheimer’s Society and the Royal College of Nursing (RCN) have created ‘This is me’, a practical tool for people with dementia to tell staff about their needs, preferences, likes, dislikes and interests.7 It helps health professionals gain a greater insight into their patient so they can tailor care.
It can help to reduce distress, particularly in unfamiliar surroundings like a hospital or respite care. It can also help to prevent more serious conditions such as malnutrition and dehydration.
It is also important to recognise that as much as 90% of communication with dementia patients is nonverbal.8 When dementia progresses into the moderate and advanced stages, speech becomes increasingly difficult. If dementia patients are in pain, it often goes untreated because they cannot get their message across verbally in a way people can understand.9
Rachel Greenbeck, Quality Matron at Northern Lincolnshire and Goole NHS Foundation Trust, who has five years’ experience dealing with dementia patients, says nurses can grasp a person’s meaning by carefully listening and observing their behaviour. The behaviour in particular is an important indicator of how a person with dementia might be feeling.
In order to facilitate verbal communication, nurses should pay great attention to their own nonverbal communication and make sure they have the person’s attention. They can do this by:
– Making good eye contact
– Gently touching the person’s arm
– Being at the same level as them
– Minimising competing noises – eg other people’s conversations
– Allowing them to retain control
Rachel Greenbeck’s tips for encouraging verbal communication in people with late-stage dementia include:
– Give simple choices and use pictures or objects to help as patients will often decide on the last thing you said.
– Reduce the amount of information you are trying to convey. Keep it short and simple.
– Give them time to respond. Don’t fill silence with further repeated questions.
– Rephrase questions so they are easier to understand.
– Know as much as possible about the individual’s likes and dislikes.
Why it’s important to involve carers
Another effective way to identify needs and communicate with Alzheimer’s patients is by involving the carer and using their knowledge. A collaborative approach between nurse, patient and carer can help get things right the first time.
The Carers Trust and the RCN developed the Triangle of Care for Dementia to improve the relationship with the patient, healthcare staff and carers to promote safety, support communication and sustain well being.10 It emphasises the need for nurses to engage with carers as they provide significant support and have crucial information that could assist with treatment plans.
Indeed, carers who are not invited to be involved might withdraw from sharing vital information and history.10
Dementia and other health conditions
Many people with dementia will have one or more comorbidities, for instance, high blood pressure, depression, heart disease or diabetes.
As the dementia progresses, it can have serious consequences on a person’s ability to manage their other health conditions. For instance, a diabetes patient has to carry out self-testing and administer insulin at certain times of the day. Their ability to carry out this task will deteriorate as their memory and cognition worsens, and that responsibility will eventually fall to a carer.11 Mismanagement of a health condition can lead to an emergency hospital admission.11
Primary care nurses will sometimes be the first to notice signs and symptoms of dementia and they should refer the person to their GP for a diagnosis.
A full list of signs and symptoms of dementia can be found on the Alzheimer’s Society’s website12 (see Resources).
Communication is central to providing good dementia care. As the disease progresses, the patient’s language skills will gradually decline, making it difficult for them to express their needs verbally. Nevertheless, each patient is unique and changes in their ability to communicate will vary from one person to another.
Nurses will undoubtedly be faced with challenges, particularly when caring for those in the later stages of the condition, and will need skill and patience to interpret non-verbal communication such as body language and facial expressions. Regardless of the stage of their condition, people with dementia do not stop experiencing pain, distress, anxiety or wellbeing. Partnership working with carers and family will also be key to enhancing quality of care and ensuring people with dementia continue to live as well as possible.
Alzheimer’s Society –alzheimers.org.uk
1. Alzheimer's Society. Drug treatments for Alzheimer's disease, 2014. alzheimers.org.uk/site/scripts/documents_info.php?documentID=147 (accessed 11 July 2016).
2. Alzheimer's Society. Financial cost of dementia, 2014. alzheimers.org.uk/site/scripts/documents_info.php?documentID=418 (accessed 11 July 2016).
3. Alzheimer's Society. Dementia UK Update, 2014. alzheimers.org.uk/site/scripts/download_info.php?fileID=2323 (accessed 11 July 2016).
4. Department of Health. Prime Minister’s challenge on dementia, 2015. gov.uk/government/uploads/system/uploads/attachment_data/file/414344/pm-dementia2020.pdf (accessed 11 July 2016).
5. Alzheimer's Society. Over half of people fear dementia diagnosis, 62 per cent think it means 'life is over', 2016. alzheimers.org.uk/site/scripts/news_article.php?newsID=2606 (accessed 11 July 2016).
6. Knapton S. Dementia research gets 13 times less funding than cancer, figures show, 2015. telegraph.co.uk/news/health/news/11532982/Dementia-research-gets-13-times-less-funding-than-cancer-figures-show.html (accessed 11 July 2016).
7. Alzheimer's Society. This is Me, 2013. alzheimers.org.uk/site/scripts/download_info.php?fileID=1604 (accessed 11 July 2016).
8. Alzheimer's Society. Advice for nurses and other healthcare professionals, 2016. alzheimers.org.uk/site/scripts/documents_info.php?documentID=1211&pageNumber=2 (accessed 11 July 2016).
9. The National Council for Palliative Care. How Would I Know What I Can Do? ncpc.org.uk/sites/default/files/How_Would_I_know.pdf (accessed 11 July 2016).
10. Worthington A, Lead PR. The Triangle of Care Carers Included: A guide to best practice in acute mental health care, 2013. static.carers.org/files/caretriangle-web-5250.pdf (accessed 11 July 2016).
11. APPG. Dementia rarely travels alone: Living with dementia and other conditions, 2016. alzheimers.org.uk/site/scripts/documents_info.php?documentID=1583 (accessed 11 July 2016).
12. Alzheimer's Society. Should I be worried about memory problems? alzheimers.org.uk/site/scripts/documents_info.php?documentID=864 (accessed 11 July 2016).
13. Alzheimer's Society. Developing better ways to talk to people with Alzheimer's disease about their illness, 2016. alzheimers.org.uk/site/scripts/documents_info.php?documentID=2672 (accessed 11 July 2016).
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