How to support a person with dementia during a hospital stay

Delirium is a condition that starts suddenly in someone who is unwell and is a different condition to dementia. However, 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. These can include constipation, pain, an infection, or dehydration.

Delirium is usually treated by treating the medical problem that is causing it. Symptoms of delirium can start over hours or a few days. They can also come and go from one moment to the next.

The person’s symptoms can be frightening and 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

• Look for changes in the person’s behaviour and speak to anurse or doctor immediately if you notice any. Family, friends and carers often recognise changes first 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 possible.
• Set up a dementia-friendly clock or a wipe board to remind the person of the date, time and where they are, if this helps them. Keeping the room light and airy during the daytime can also help, where possible.
• Try to stay calm when communicating with the person. Talk slowly and provide plenty of reassurance. Listen to their concerns, even if they don’t seem to make sense to you. Gently remind them where they are and what’s happening. Being understanding can help them stay calm.
• Help them to drink regularly as dehydration can make delirium worse

Having good relationships with ward staff can be useful. 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. You can then ask for a call or appointment with this named nurse. 

If you are worried about disturbing busy staff members, note down any questions you have and approach them during quieter times.

If you want to discuss the person’s condition or treatment in more depth, you could ask the nurse when the doctor or consultant is next due on the ward. This is a common question, so don’t worry about asking.

Hospital staff might not be aware that someone has dementia, or they may not all have experience of working with people with dementia.

It can be 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.

Helpful information 

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.
• Any communication difficulties and tips on how best to communicate with the person. For example, ‘Mrs Sellers finds it helpful if people talk slowly and give one piece of information at a time’.
• 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.
• Their usual sleeping patterns.
• How active the person likes to be. For example, if they usually walk about
• What can calm the person when they are agitated
• If 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.

Managing pain can be difficult when hospital staff don’t know the person well. Dementia and being in pain can affect a person’s ability to communicate. This can mean that they aren’t able to tell others how they feel.

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

How you can help

• Check for things that might be hurting the person if you cannot see an obvious cause for their pain. Examples include sores in their mouth or bruises on their body.
• Ask staff for an assessment if you think they are in pain. The doctor may prescribe medication that can help. Doctors should speak with you and the person before they make any changes to the medication.
• Consider alternative pain remedies that do not involve medication, such as heat pads or massage therapy. Hospitals will differ in what they can offer, so ask what is available

• Be aware of the risks of sedation. Hospital staff might prescribe a sedative if the person’s pain is making them agitated. 
  
  Sedatives do not treat pain and can make the person more confused. They should only be used if the person is putting others at risk, and after the doctor has looked into what could be causing their behaviour. Talk to the doctor if you have any concerns. It may be possible to reduce the dose or stop the medication. 

  If the person gets agitated, other solutions could include stimulating activities or extra support from a healthcare assistant.

Hospitals can be loud and unfamiliar places, and the person with dementia may not understand where they are or why they are there. If the ward is busy, such as during mealtimes and visiting hours, this can add to their confusion and increase their anxiety or agitation. 

How you can help:

• Talk to the person, read to them if you can, and provide emotional support. This can make a big difference because familiar faces can bring comfort and reassurance.
• Place a whiteboard next to their bed with answers to the questions they keep asking. This could be why they are in hospital, when they are leaving and where their personal items are kept.
• Check their 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 and type of glasses (such as ‘reading glasses’) if they have more than one pair. This is so they can see clearly, and the glasses can be returned if they misplace them.
• Ask if there is a day room where the person can visit to get a break from the ward, if this appeals to them.
• Bring in familiar objects, such as photographs of pets and family members. These can also provide staff with a good talking point.
• Leave a notebook so visitors can write messages, reminders and details of when they are next visiting.
• Consider packing casual clothes that are easy to wear. It may help the person feel more comfortable to wear their own clothes. It can also help them to settle into different routines for daytime and night-time.

Mealtimes in a busy hospital can be difficult for a person with dementia. Staff may be able to let you stay beyond usual visiting hours if you want to help. Staff are often especially busy at mealtimes and may be grateful for any help you can offer.

If the person is struggling to eat and drink, let staff know of any particular difficulties they may have at mealtimes. This can help them provide better care while you’re not there. 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

• Don’t assume that the person isn’t hungry if they don’t seem keen to eat. Try to make the food seem more appealing by talking positively about how it looks or smells.
• Be aware that the person’s food preferences may change. They may no longer like the same foods that they used to.
• Consider keeping snacks by their bed if they do not want to eat an entire meal and prefer to eat little and often. Speak to the named nurse first to make sure the snacks are suitable.
• Make mealtimes more sociable by having a snack or a drink at the same time as them. Talking to them about their favourite foods could help increase their appetite.
• Create a routine around meals. If the person can sit in a chair rather than lying in bed, this might prompt them that it’s time to eat.
• Consider foods they can eat with their fingers if they are struggling to use cutlery. Examples include bread rolls, potato wedges, spring rolls or samosas.
• Help the person stay hydrated. Hospital wards are often warm and staff may not have time to ensure that a person drinks enough. Offer drinks and hydrating snacks as often as possible. Water, tea, juices, jellies and soft fruits can all help.
• Ask if food can be provided soft or mashed if the person has difficulty chewing or swallowing. If you’re not sure whether their difficulty is with swallowing or something else, ask if they have been referred for an assessment from a speech and language therapist.
• Ask if the hospital has a separate dining room. This can offer a change of scene for the person with dementia.

If the person isn’t eating well, or is starting to lose weight, they should never be forced to eat. The named nurse should speak to the hospital dietitian who will set up a nutritional care plan with nursing and catering staff. This may involve high-energy drinks or specific foods.

If they are very unwell, they may not want to eat or drink at all. If this continues for a long time, the clinical team may suggest other ways of keeping the person well-nourished, such as feeding through a tube. When deciding if the person needs to be tube-fed, staff should speak with carers or relatives to discuss what’s in the person’s best interests.

Someone with dementia might try to get up and walk around the ward. It can be good for them to be active during a hospital stay, but it’s important that they are safe and don’t become lost. Never leave the ward with the person with dementia without informing ward staff.

How you can help

• Ask staff for adjustments to help them walk safely. They might let the person walk on the ward at quieter times or when visitors are with them. Some wards have rooms with space for people to walk around or watch a film while exercising. They may need to be supervised, so discuss this with staff beforehand.
• Explain to staff why walking might help. Some people can become stiff if they don’t move around, making them more likely to have falls when they do get up again. Other people may feel threatened, agitated or angry if they’re stopped from walking.
• Ensure all risks are considered. Agree on ways to reduce risk such as certain footwear, familiar routes or accompanied walks.
• Encourage movement. If the person likes to be active, it might help to involve them in suitable activities like chair-based exercises.
• Help them walk comfortably by bringing slippers or comfortable footwear.