An estimated 982,000 people in the UK have dementia and this is predicted to rise to 1.4 million by 2040, says the Alzheimer’s Society.
While specialist nurses provide expert support, nursing staff in a wide variety of settings – including the community, general practice and emergency departments – are likely to encounter people living with dementia. So it’s vital all nursing staff understand the condition and how they can best support individuals and their loved ones. Here’s what you need to know.
What is dementia?
“Dementia is an umbrella term for a range of progressive conditions that affect the brain,” says Jo Roche, a former Admiral nurse, now a ward manager at the University Hospital of Wales in Cardiff, and a member of the RCN Older People’s Forum.
“There is no cure for dementia, so it’s a palliative diagnosis, and this means all care and treatments should be person-centred and aimed at keeping people comfortable and independent for as long as possible.”
Are there different types of dementia?
There are more than 200 subtypes, says Dementia UK. The most common are Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal and mixed – with Alzheimer’s and vascular being the most likely combination. While dementia can affect people of any age, it’s more common in those aged 65 or above.
How does it affect someone?
It’s very individual. “We always repeat dementia expert Professor Tom Kitwood’s words: once you’ve met one person with dementia, you’ve met one person with dementia,” Jo says. “Typically the word dementia is used to describe the common symptoms, including memory loss, confusion, and speech and understanding difficulties, all of which will get worse over time.”
Progression can happen slowly or quickly, depending on various factors. These include the type of dementia, someone’s general health, their age and their lifestyle.
Top tips to help your patients
- If the person is in hospital, encourage their family to bring in personal items, says Jo. “A familiar blanket, cushion or photos that the person recognises are a good distraction technique if someone becomes distressed,” she says.
- Try not to restrict patients to their bed. “People living with dementia may like to walk around, this can reduce their distress and where possible, staff should support this,” says Jo. “We must balance what the person wants with a careful risk management plan.”
- If someone is distressed, consider whether it’s because they might need to use the toilet, eat or drink, but are unable to vocalise that, Jo suggests.
- For those who struggle with verbal communication, picture menus may help at mealtimes. “And if they find eating difficult, consider adaptive cutlery or whether they need assistance,” says Jo.
- Always be guided by the individual and what’s important to them, says Jo. “Care should always be person-centred and as we always say, ‘no decision about me, without me’.”
- Endorsed by the RCN, ‘This is me’ supports those living with dementia to record some personal details, so health care professionals better understand them. This may include their culture and family background; important people, places and events; their likes and dislikes; and their routines.
- Find out what local support is available, so you can signpost.
- The bookcase analogy can help you understand the impact of dementia. “It’s a really good way to understand how people with dementia lose their memory,” says Jo. Read about the analogy on the Dementia Friends website.
What can I do to support diagnosis?
Getting a diagnosis can be a slow and arduous process, says Jo. “It’s not done as well as it could be in many places across the UK,” she says. “But we need a diagnosis so that the proper support can be put into place, including any medications that might help alleviate some symptoms.”
-
Read next: How to use music in dementia care
Nursing staff are well placed to spot early signs of memory loss, including patients forgetting their appointment or turning up on the wrong day. “They may also forget their date of birth or their relatives’ names, fail to recognise familiar staff, or struggle to understand and retain information you’re giving them,” says Jo. They can also appear to be confused or distressed, but can’t explain why.
If symptoms are sudden or recent, it’s worth ruling out reversible causes first, such as an infection, and whether the cognitive changes are due to a delirium rather than dementia, Jo advises. Otherwise, the patient should be referred to their GP, who can set further tests in motion.
How can I help patients with dementia get the most from health care?
It’s vital all nursing staff have some essential knowledge about how to communicate with people living with dementia. “Speak clearly and slowly,” Jo says. “Use short sentences and give very simple choices. Don’t overload a question. Always make eye contact and give the person enough time to respond.”
If someone is becoming distressed, you need to remain calm, kind and patient, and don’t show any frustration, says Jo: “Smile, be positive and friendly, so they know you’re someone they can speak to. Getting down on their level can also be helpful.”
Scheduling routine health care appointments at the time of day someone is usually at their best – whether morning or afternoon – is also a good idea, Jo suggests. Family members should be included and involved as much as possible. Read about John's campaign to find out more about family involvement.
How can I support the person’s loved ones?
For those looking after someone living with dementia, carer burnout can be common, says Jo. “They might suffer from depression and loneliness too,” she says. Loved ones may also experience anticipatory grief and a feeling of bereavement. “A lot of carers say they’re looking after someone they don’t know anymore,” she adds.
Nursing staff can help by using every interaction with carers or loved ones as an opportunity to check in on how they’re doing, and whether they might benefit from some extra support or counselling, Jo advises.
What resources are available?
- Find a range of dementia resources in the RCN Library’s guide to the condition: Dementia subject guide.
- Explore the RCN clinical guide to dementia.
- Join the RCN Older People’s Forum.
