Staying hydrated in dementia: Admiral Nurses support the creation of national leaflet 

September 26, 2022

We spoke to Admiral Nurses, Caroline Ellis, Elizabeth Seward and Rachel Murray who are based in the South West of England, about how they have been involved in creating a national leaflet on hydration. This is an issue which affects many families with dementia and can result in other long-term physical, psychological, and mental health issues. 

How big of an issue is hydration for families with dementia? 

Caroline: Hydration is a universal issue as it helps to prevent infections, regulate body temperature and keeps our organs working properly. Dehydration can cause low blood pressure too, which has a knock-on effect on mood and cognition. 

Due to issues with cognition, people with dementia can find it challenging to remember to drink the suggested hourly amount of water for health and wellbeing. Unpaid family carers may be pressured to make sure that relatives and others close to them with the condition are staying hydrated.  

Some of the main reasons why people with dementia are admitted into hospital include falls, constipation and infection. Some of us have been involved in supporting families out of hospital and in the community and dehydration issues play a big role. Focusing on hydration therefore helps reduce hospital admissions. 

Can you tell us a bit about the creation of the leaflet? 

Rachel: It all started from the management of long-term conditions course I attended at Bournemouth University through Dorset Healthcare Trust last year. As part of the research for this particular course, I couldn‘t find any resource for carers which bridged dementia and hydration in an accessible way. We also realised that such a resource could support clinicians’ advice for family carers.

What’s in the leaflet itself? 

Caroline: The leaflet contains further signposts to where people with dementia can go for help. For example, if someone is very dehydrated and the family carer has tried everything, there are clearly defined lines of communication of what they need to do next. 

It’s all been designed as something you can stick on your fridge and refer to later. There are lots of links to visual aids, including the urine colour chart and the Bristol stool chart. These help with engagement and accessibility, particularly for people who may have difficulty processing lots of information or who are involved in busy caring routines.  

Where can people access the leaflet? 

Elizabeth: We’re looking at a range of settings: carers’ groups, community hubs, and day care centres to name but a few. People can also access the leaflet on the Dementia UK website as well as print it out so that they can refer to it more easily. It’s a great resource not just in healthcare but in social services as well.

What kind of support has Dementia UK offered you to get this leaflet off the ground? 

Rachel: Dementia UK continually supports and develops dementia specialist Admiral Nurses through their award-winning programme of CPD within their Admiral Nursing Academy. We couldn’t have developed this leaflet without their incredible support and Academy which empowered us through leadership training, proactive networks and resources.  

The opportunity to share the creation of this leaflet and have insight from other Admiral Nurses on the issue of hydration was an added boon. In fact, it was through the charity that Liz, Caroline and I linked up during our clinical supervision groups for Devon and Exeter – they’re an opportunity for Admiral Nurses to reflect and share best practice.  

What would be your advice to Admiral Nurses who are looking to be involved in a similar project? 

Rachel: Go for it, put those feelers out and get people on side. One thing that is so exciting about Admiral Nursing is that we all share a passion for positive change, with family carers and the person with dementia at the heart of everything we do. If you have an idea, take it forward as you will be supported by Dementia UK, with the opportunity access invaluable resources through their Admiral Nurse Academy.  

Michelle McGowan, an Admiral Nurse from Yorkshire and former carer for her mother who is living with Alzheimer’s disease, has experienced first-hand the challenges around hydration.

“Mum always loved coffee; she’d drink about 10 mugs a day. But, as her Alzheimer’s disease progressed, she could no longer make a cup of coffee by herself, marking the beginning of what would be a steep journey.

“In 2017, mum fell in the supermarket and fractured her hip – she was in the hospital for four weeks following the accident. During her stay, we would sometimes feed her, but we really struggled to get her to eat and drink as she said that everything tasted awful. Eventually, I worked out that it was a side effect of the pain patch she was prescribed, and after removing it, things did improve. We discovered that knowing what she liked best, such as mango and apple juice, and tempting her with sticky chocolates – which she loves – often had the benefit of making her thirstier. She also enjoyed ice cream from the hospital shop and fresh, juicy melon and pineapple.

“Nowadays, she can’t always drink from a cup, and her fluids have to be thickened for her to be able to consume them safely. Some days she can drink from a straw and other days she just gets angry, and you will end up wearing that drink. However, I’ve come to learn that kindness, patience and persistence are key virtues.

“As a specialist dementia Admiral Nurse, I’m lucky to have this understanding about hydration and dementia, but many people supporting a person with dementia don’t have this. It’s so important that health and social care professionals, as well as carers, can spot the signs that someone might be dehydrated and have the knowledge to mitigate this to avoid serious health implications.”

For more information around hydration and dementia, you can download the leaflet here: https://www.dementiauk.org/wp-content/uploads/2022/05/Good-hydration-for-a-person-with-dementia.pdf 

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