For great hospital care, let’s focus on what patients with dementia can do, not what they can’t

Being admitted to hospital can be a confusing and stressful experience for a person who has dementia, so ward staff need to work together to provide the extra support they need. At Imperial College Healthcare NHS Trust, our dementia care team has written a best-practice guide for healthcare professionals, Excellent Dementia Care in Hospitals. Here, Jo James, Jules Knight, Josh Pettit and Lucy Gilby discuss how the book has helped them improve the care they provide in our hospitals.

Our dementia care team is made up of clinical nurse specialists and healthcare support workers. It’s by collaborating as a team, bringing together our different skills, that we are best able to provide care to people with dementia who have been admitted to the Trust’s hospitals and help them to feel safe and secure while they recover.

At the heart of everything we do in our team is person-centred care. In a nutshell, person-centred care means responding to each patient based on their individual needs, rather than delivering the same care to all patients. In order to make care in hospitals work for people with dementia, a person-centred approach is a necessity.

People with dementia cannot adapt their behaviour to fit the setting and routines of a busy ward as easily as other patients, and can find it more difficult to communicate when they are ill. We need to listen carefully to them to understand what works for them personally and then adapt the way that we support them to get better. It’s all about getting to know someone so that we can work with them and support them during their hospital stay.

Writing Excellent Dementia Care in Hospitals as a team

Last year, we were approached by Jessica Kingsley Publishers to write a book specifically about best practice for dementia care in hospitals. We wanted the book to be accessible to people working in all sorts of roles in hospital, so we incorporated the experiences of everybody in our team because this reflects how clinical nurse specialists and healthcare support workers use their different skills and strategies to give person-centred care. In order to make this happen, we shared out the task of writing – each member of the team wrote a chapter either individually or with others, fitting it in around their clinical work. We then peer-reviewed each other’s writing, to give constructive feedback and make sure the patient was always the focus of each chapter.

We begin each chapter with the story of a real patient we have cared for at the Trust and shape the chapter around an aspect of dementia care that was important to their experience in hospital. An example of a chapter that really illustrates the importance of applying a person-centred approach to nutrition is ‘Myrtle – Eating and Drinking’.

When Myrtle first came into our hospital, she was refusing food and water, which made her extremely unwell. We asked ‘Why is Myrtle reacting this way?’ By asking Myrtle and her relatives more about her likes and dislikes, our team discovered that Myrtle wasn’t eating because she didn’t like to be fed by someone else. We responded by letting Myrtle eat without providing physical assistance, giving her ‘finger foods’ in the form of bento boxes, that she could choose to eat by herself whenever she was hungry instead of large meals at strict times. She wasn’t drinking because she didn’t like the taste of water, so the healthcare support workers made sure she always had juice to hand, which she was happy to drink. When we accommodated Myrtle’s wishes, her condition rapidly improved – she was playing air guitar at a tea party two weeks later!

By sharing real-life examples of care we’re outlining practical ways that ward staff can practice strength-based care in the book. Instead of looking at what a patient can’t do, or what behaviour doesn’t fit in a hospital setting, we’re looking at their strengths – what they can do, or what they like to do, so we can facilitate this.

Relatives and carers play a vital part in helping us give strength-based care to people with dementia. That’s why carer advocates Nicci Gerrard and Julia Jones of John’s Campaign wrote a chapter about carers in the book. Crucially, they write, carers can provide a voice for a person who is finding it difficult to communicate their wishes, helping us get to know who they are. Allowing them to stay on our wards with their loved ones beyond visiting hours – thanks to the carer’s passport initiative – means that not only can they support the patient to feel calmer and safer, but also they can work with our staff to help us understand the patient’s strengths.

Each chapter ends with a table called ‘How to make best practice happen’. This is a step-by-step guide for both qualified staff and healthcare support workers so they can check what they should be listening for and how they can support the patient by working with their strengths.

Providing better care for our patients

By writing the book as a team we learned a huge amount that enables us to continue to improve the care we give people with dementia on our wards. We all had to do a lot of reading and research for our chapters, and we were also peer-reviewing chapters, so we learned a lot about dementia from each other. As a result, we’ve all gained a deeper understanding of the condition and changed the way we teach student nurses and other staff – we focus more on the reasons why getting to know each individual patient can help us provide better care to people with dementia.

Working on the book has also made us examine our own roles more closely. Where we wrote about how we as qualified staff and healthcare support workers specifically can implement best practice in dementia care, we got a stronger sense of the support we each can give in our day-to-day work.

Good dementia care is just good care full stop – finding out more about the patient and ensuring that we’re always asking how we can adapt our care to fit what they need. So although the book is called Excellent Dementia Care in Hospitals, we would argue that the person-centred approach we’re advocating in dementia care should be applied to all hospital patients.