How to support a person with dementia during a hospital stay

Hospitals differ in what they offer people with dementia and their families. They may have:

• specialist services such as liaison psychiatry services
• specialist staff such as a dementia lead
• tools like carer passports to allow for longer visiting times
• identification schemes such as a butterfly symbol to raise staff awareness and help provide appropriate care.

Ask what is available for you.

You may not feel able to provide all or any of this support for the person yourself. For instance, the hospital may have visiting restrictions or it may not be possible for you to visit the hospital easily. It can help to build up a good relationship with ward staff.

Staff should be able to answer any questions and discuss any issues you may have. If they seem too busy to talk, ask for the name of the nurse who is responsible for setting up the person’s care. Then ask for a call or appointment with this named nurse.

If you want to discuss the person’s condition or treatment in more depth, ask for an appointment to see or speak with the doctor or consultant. 

Try to remain friendly and open with everyone involved in the person’s care, including non-medical staff such as catering assistants and cleaners. You may be able to pass on some of your knowledge about the person to them. This can encourage better communication and help the person feel more at ease on the ward.

Hospital staff might not know that someone has dementia, or they may not have experience of working with people with dementia. So it’s helpful for family and friends to share information with ward staff on how the person’s dementia affects them. 

Any information you can give about the person is useful as it will help staff to understand and respond to them as an individual.

How you can help

As information can be lost or forgotten, it can help to write down some important facts about the person with dementia. This can then be given to the named nurse and held in the person’s medical notes. Useful information you could give about the person includes:

• the name they like to be called and the way they prefer to be spoken to – for example, in a casual way, such as ‘Charlie’, or formally, such as ‘Mr Cohen’
• details of their normal routines, including whether they need reminders or support with things like washing, dressing, eating and drinking, going to the toilet or taking medication
• details about any difficulties the person may have with communication, and tips on how best to communicate with them – for example ‘Mrs Sellers finds it helpful if people talk slowly and give one piece of information at a time’
• information about foods they like or dislike, or any difficulties they have when eating – for example ‘Ravi can feed himself with a spoon if someone cuts his food up for him’
• details of any cultural or religious needs
• information about their usual sleeping patterns
• details of how active the person likes to be – for example, if they usually walk about
• advice on what can calm the person when they are agitated
• whether they have an advance decision or a personal welfare Lasting power of attorney (LPA)
• any other information that can help staff build a friendly relationship with the person – such as details of hobbies, pets or their past occupation.

Hospitals can be loud and unfamiliar, and the person may not understand where they are or why they are there. If the ward is busy and noisy, this can add to the person’s confusion and increase their levels of anxiety or agitation – particularly at peak times, such as ward rounds or visiting hours.

How you can help:

• check hearing aids are on and at the right level for the person’s new surroundings
• make sure glasses are clean and labelled with the person’s name so they can see clearly and the glasses can be returned if the person loses them
• ask if there is a day room that the person can visit to get a break from the ward
• bring in familiar objects, such as photographs of family members or a pet. These can also provide staff with a good talking point
• give them a notebook, so staff and visitors can write messages, reminders and details of when they are next visiting
• talk to the person, read to them, and give emotional support. This can make a big difference because familiar faces can bring comfort and reassurance 
• consider packing some casual clothes that are easy to wear if the person would feel more comfortable wearing their own clothes during the day. This can also help the person to settle into different routines for daytime and night-time.

Delirium is a condition that starts suddenly in someone who is unwell. It is common for people with dementia to become delirious when they are in hospital.

This is because delirium has a range of causes and is usually the brain’s reaction to a separate medical problem, such as constipation, pain, an infection, or dehydration.

Delirium is usually treated by treating the separate medical problem that is causing it.

Symptoms of delirium can come on over a matter of hours or over a few days. They can also appear and disappear from one moment to the next.

The person’s symptoms may include:

• being unusually sleepy or agitated
• becoming disorientated – not knowing where they are or what day it is
• being unable to concentrate
• having disturbed patterns of sleeping and waking
• showing changes in behaviour and having mood swings
• experiencing hallucinations
• having abnormal or paranoid beliefs.

There are different types of delirium and these are treated in different ways, depending on the person’s needs.

How you can help

• If you notice a change in the person’s behaviour, speak to a nurse or doctor immediately. Family, friends and carers are often well placed to recognise changes as they know the person best.
• Try to make the person’s surroundings familiar to them by bringing in objects from their home. Visits from people they recognise can also help, if this is possible.
• Set up a dementia-friendly clock or a wipe board to remind the person of the date, time and where they are. Keeping the room light and airy during the daytime can also help with this.
• For some types of delirium, it can help to dim the lights and reduce any noise for a short period of time.
• Although delirium can be frightening, try to stay calm when communicating with the person – talk slowly and provide plenty of reassurance.
• Even if they don’t seem to make sense to you, listen to any concerns that the person has and ask how you can help.

Mealtimes in a busy hospital can be difficult and stressful for a person with dementia. If ward mealtimes fall outside of visiting hours, it’s worth asking the hospital staff if you can stay beyond these. Staff are often especially busy at mealtimes and may be grateful for any help you can offer. 

As you may not always be around to help, it’s also a good idea to make staff aware of any difficulties that the person has at mealtimes. This can help them provide better care for the person. For example, some hospitals use reminders, such as a different coloured plate or a sign by the bed, to alert staff if a person needs extra help to eat.

How you can help

• Some hospitals have a separate dining room. This can offer a change of scene for the person with dementia, so give them the option of eating there, if possible.
• Don’t assume that the person isn’t hungry or doesn’t want their food if they don’t seem keen to eat it. Instead, try to engage them in different ways. Try to make the food seem more appealing by talking positively about how it looks or smells. 
• Make mealtimes more sociable by having a snack or a drink at the same time as the person does. Try speaking to the person about their favourite foods – this could help increase their appetite.
• Some people with dementia cannot eat their food without reminders at mealtimes. If the person can sit in a chair rather than lying in bed, this might prompt them that it’s time to eat.
• If a person is struggling to eat using a knife and fork, consider selecting foods that they can eat with their fingers, such as bread rolls, potato wedges, celery sticks or seedless grapes.
• If the person has difficulty swallowing, ask if their food can be provided soft or mashed. If you’re not sure whether their difficulty is with swallowing or something else, ask for an assessment from a speech and language therapist.

If the person is not eating well, or is starting to lose weight, the named nurse should speak to the hospital dietitian. The dietitian will set up a nutritional care plan with nursing and catering staff, which may involve prescribing high-energy drinks or specific foods.

If the person with dementia is very unwell, they may not want to eat or drink. If this continues over a long period of time, the medical team may suggest tube feeding – when a person is fed through a tube in their nose. These are sometimes called ‘nasogastric’ or ‘gastrostomy’ (PEG) tubes. This will make sure the person receives the food and fluids that they need. When deciding if the person needs to be tube-fed, staff should speak with carers or relatives and make sure to respect the person’s wishes.

Managing pain can be difficult when someone is in hospital and ward staff don’t know them very well. Being in pain can affect a person’s ability to communicate and mean that the person is not able to tell others how they feel.

If a person is in pain and can’t communicate it properly, they may start to behave differently. For example, the person may scrunch up their face or rock backwards and forwards.

How you can help

• If the person looks as if they might be in pain, but you cannot see an obvious cause for this, check for things that might be hurting them, such as sores in their mouth or bruises on their body.
• If you think the person may be in pain, mention this to a member of staff and ask for an assessment. The doctor may prescribe medication that can help. Doctors should speak with you and the person before they make any changes to the person’s medication.
• Consider trying pain remedies that do not involve the person taking medication, such as heat pads or massage therapy. Hospitals will differ in what they can offer, so ask what alternatives are available.
• If the person with dementia is in pain, they may become agitated. If their behaviour is challenging for hospital staff, the person may be prescribed a sedative. Sedatives are not prescribed to treat pain and should only be used if the person is putting other people at risk. The doctor should always look into what might be causing the person’s behaviour before prescribing sedatives.
• If the person is prescribed sedative medication, this may make them more confused. If you have any concerns, discuss these with the doctor – it may be possible to reduce the dose or stop the medication altogether. If the person gets agitated again, the medical team may be able to offer alternative solutions, such as engaging the person in stimulating activities or getting extra support from a healthcare assistant, if available.

Someone with dementia might try to get up and walk around the ward, and this might make staff anxious. It’s important that the person is safe and does not become lost. However, it can be good for the person to be active during a stay in hospital.

How you can help

• If the person wants to walk around the ward, and it is safe and possible for them to do so, ask if the staff could help with this. Explain to staff why walking might help the person. For example, some people can become stiff if they don’t move around, and this can make them more likely to have falls when they do get up again.
• If the person is being prevented from walking around, it may make them feel threatened, agitated or angry. Ask the staff if they can make any adjustments to support the person. For example, they might let the person walk on the ward at quieter times or when the person has visitors.
• If the person likes to be active, it might help to involve them in suitable activities on or away from the ward, like chair-based exercises.
• Some wards have day rooms where people can watch a film while exercising. Ask if the hospital has any room where the person can go to walk around. The person may need to be supervised if they do this, so discuss this with staff beforehand.
• If it’s possible for the person to walk around the ward, bring in some slippers or comfortable footwear to support them with this.