A guide to caring for people living with dementia
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A guide to caring for people living with dementia

Lynne Pearce Health journalist

Advice on symptom management and how to tailor communication to the individual’s needs

With more than 900,000 people in the UK living with dementia, nursing students on placement in a variety of settings – from the emergency department to the community – are likely to encounter patients at different stages of the condition throughout their training.

Nursing Older People. 35, 2, 18-19. doi: 10.7748/nop.35.2.18.s7

Published: 03 April 2023

‘Nursing students can play a massive role in supporting people with dementia and their families,’ says Sharon Yates, academy lead Admiral Nurse (professional development) with charity Dementia UK.

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Picture credit: iStock

What are the most common types of dementia?

According to Dementia UK, there are more than 200 subtypes of dementia, which is a catch-all word for a range of disorders affecting the brain. Alzheimer’s disease is the most common, accounting for around 60% of diagnoses in the UK.

Vascular dementia is the second most common, affecting around 150,000 people. Then a further 10-15% are diagnosed with dementia with Lewy bodies, with around 10% of younger people with dementia having this form.

The fourth most prevalent form is frontotemporal dementia (FTD), which affects around one in 20 people who have a dementia diagnosis. FTD covers a group of dementia forms that mainly affect the frontal and temporal lobes of the brain.

At least one in every ten people diagnosed will have mixed dementia, with the most likely combination being Alzheimer’s disease and vascular dementia. Mixed dementia is much more usual in those aged 75 or over, says the charity.

Getting the right diagnosis is crucial, because of what this means for symptom management, prognosis and treatment, says Ms Yates. ‘Someone with vascular dementia, for example, will have an underlying condition that needs treatment, such as managing cholesterol or high blood pressure.’

But it can sometimes be difficult to confirm diagnosis, especially when there is mixed dementia. ‘That can be when we’re not sure, because someone is displaying lots of different symptoms,’ says Ms Yates.

What are the common symptoms people with dementia experience?

Everyone has their own experience of dementia and symptoms vary between individuals, who may have some or all of the following:

Memory issues

  • » Increasing forgetfulness

  • » Difficulty retaining new information

  • » Getting lost in places that used to be familiar

  • » Struggling with names

  • » Misplacing things frequently

Cognitive ability

  • » Difficulty understanding time and place – for example, getting up in the night to go to work, even when retired

  • » Struggling with decision-making and reasoning

  • » Difficulty with choosing what to buy and paying when shopping

  • » Loss of interest in activities once enjoyed

  • » Restlessness – including pacing, fidgeting and trying to leave the house

Communication

  • » Struggling to find words

  • » Repeating themselves often

  • » Difficulty making and following conversations

  • » Difficulty reading and writing

  • » Becoming quieter and more withdrawn

  • » Loss of interest in socialising

  • » Loss of confidence

  • » Changes in personality and behaviour

  • » Mood swings, anxiety and depression

Source: Dementia UK

What is the best way to communicate with someone living with dementia?

Good communication is an important aspect of living well following a diagnosis of dementia, says the Alzheimer’s Society. It helps people keep a sense of self, sustains relationships and maintains a quality of life.

In contrast, if someone with dementia cannot express themselves, they can lose confidence, feel anxious or depressed, or become withdrawn. An inability to communicate in the ways they are used to may also lead to frustration, says the charity.

‘Greet the person as you would anyone else and look positive,’ advises Ms Yates. ‘People living with the condition are still very aware, but they may not be able to verbalise, so they pick up on your body language and any non-verbal cues, such as your facial expressions. Look warm, friendly and approachable – and smile.’

Avoid making assumptions that people with dementia cannot engage, she says. ‘If we engage in the right ways, people are able to communicate in some form,’ says Ms Yates. ‘Don’t lose sight of them as a person.’

How does dementia affect informal carers and loved ones?

Every aspect of someone’s life and those of the people closest to them will be affected by dementia, says Dementia UK academy lead Admiral Nurse (professional development) Diane Drain, and the condition does not just affect older people. ‘Those under 65 can also have dementia,’ she says. ‘For these individuals, they may still be working and have younger children.’

Day-to-day activities, such as cooking, cleaning, socialising and self-care can all be affected. ‘It’s important to remember that once you’ve met one person with dementia, you’ve met one person,’ says Ms Drain. ‘You may have two people living next door to each other, both with Alzheimer’s, and they could be living very different lives.’

Sometimes carers feel they are losing themselves, as their social circle changes or they become more isolated. A dementia diagnosis can also have a big emotional impact on family and friends, says Dementia UK. They can feel distressed about how the person is changing, but try to conceal their emotions for fear of upsetting the person.

‘Families can find it difficult to understand and process the changes their loved one is going through,’ says Ms Yates. ‘They may feel they’re losing the person they knew before,’ she says.

‘They may not feel connected to them any more. It’s a type of grief, but the individual is still alive. Nursing students need to be aware of those kinds of feelings, so they’re able to offer better support.’

Nursing students can also help carers recognise why someone may be behaving differently. ‘Understanding what’s making someone present in a particular way can be helpful,’ she says. ‘Our job is to improve carers’ understanding so they can develop strategies to manage situations.’

Tips on communicating with people who have dementia

  • » Try to find a quiet and calm environment with good lighting. Turn off distractions, such as a radio or television

  • » Ensure other needs, such as pain, hunger or thirst, have been met before a conversation starts

  • » Listen carefully to what the person says and offer encouragement, including non-verbal signals such as eye contact and nodding

  • » Allow someone the time to respond and try not to hurry or interrupt them. Do not assume you know what they are going to say

  • » Try to be at eye level, where the person can see and hear you as clearly as possible

  • » If someone is upset, listen

  • » Communicate clearly and calmly, using short, simple sentences, rather than long, complex ones

  • » Use conversation rather than continual questions, which can feel tiring and intimidating

  • » Try to stick to one idea at a time. Too many options can be confusing and frustrating. Questions with a yes or no are easiest to answer

  • » Make sure your body language and facial expressions match what you are saying

  • » Visual prompts can be helpful, for example, cue cards or a book of pictures

Source: Alzheimer’s Society

How can I support someone with dementia, their carers and family?

Read as much as you can about dementia, suggests Ms Drain. Understanding more about the unique role of Admiral Nurses in supporting the individual with the diagnosis and their loved ones is also important for nursing students, she says.

It’s also key to find out as much as possible about the individual. ‘What were they like before they had their diagnosis? What was important to them?’ she says. ‘Really get to know the individual. Chat to their family members.’

She also suggests trying to avoid correcting people living with dementia. ‘It causes stress,’ says Ms Drain. ‘If someone asks where their mum is, rather than replying “she’s not here”, which can cause agitation, talk to them about their mum, asking what she’s like. It’s getting on their level and using a little bit of distraction.’

Those who care for someone with dementia are entitled to a free carer’s assessment, says the NHS. Assessors can make recommendations, on practical help, benefits and local support groups.

For carers, listening and giving them time to talk can be significant roles for nursing students, says Ms Yates. ‘They can also make them feel included and valued, recognising the contribution they’re making to that person’s care,’ she says.

While not every area of the UK has an Admiral Nurse, services can still be accessed via Dementia UK, including virtual appointments, says Ms Yates. ‘Be aware of what’s available,’ she says. ‘Carers can still get some support, including the helpline.’

See Evidence & Practice, page 28

Find out more

Alzheimer’s Research UK (2021) Dementia with Lewy Bodies.

Alzheimer’s Society (2023) Alzheimer’s Disease.

Alzheimer’s Society (2023) Frontotemporal Dementia (FTD).

Alzheimer’s Society (2023) What is Vascular Dementia? alzheimers.org.uk/about-dementia/types-dementia/vascular-dementia

Dementia UK (2023) Types of Dementia. www.dementiauk.org/about-dementia/types-of-dementia

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