Changes in care: a stay in hospital

If a person with dementia is going into hospital for planned treatment or an operation, these tips may help to prepare them.

• Read any information that you have been given by the hospital
• Consider completing a Care Passport which provides information about the person to help hospital staff support them – you could use ‘This is Me’, produced by Alzheimer’s Society, or ‘Reach Out to Me’, produced by the Butterfly Scheme
• Ask if the hospital has a dementia specialist Admiral Nurse who can support you and the person with dementia during their stay, or call our Helpline to find out: see Sources of support, below
• Involve the person in packing their hospital bag. Include things that will give comfort and pass the time, like a smartphone or tablet, books, magazines, a personal radio, puzzles, family photos, and a favourite blanket or pillow
• Make a list of their property and label everything with their name
• Remember to pack glasses, hearing aids and dentures

Sometimes, a person with dementia may be admitted to hospital in an emergency. It may be useful to keep a list of things to pack in their hospital bag (described above) in case this happens.

On admission, talk to the hospital staff to ensure they know that the person has dementia, and let them know if they have any communication needs.

Carers, family and friends are often a vital source of support when someone with dementia is in hospital, so ask the staff about visiting hours.

Many hospitals participate in John’s Campaign, which allows unrestricted visiting for family carers of people with dementia – see Sources of support, below.

Between visits, or if you’re unable to visit, you might be able to phone or video call the person.

Try to build a good relationship with ward staff so you can discuss the person’s care. If they are very busy, ask to arrange an update meeting rather than trying to catch them at the person’s bedside.

If you cannot visit in person, regular phone calls with ward staff can be helpful.

Many people with dementia like to be able to walk around. They may feel agitated or angry if they’re prevented from walking.

Ask staff if it’s possible for the person to walk around the ward or visit the day room, with support if needed.

They may also be able leave the ward with a visitor to go to the hospital café or grounds.

When people are ill and in hospital, their appetite may be reduced. These tips may help.

• Tell staff about the person’s food and drink preferences, and record these in their Care Passport
• Ask if there are picture menus to show what the food looks like
• Snack menus are often available as an alternative to full meals
• Ask if you can visit at mealtimes to support the person
• Some hospitals have a ‘red tray’ scheme or can put a sign above the person’s bed to highlight that they might need extra assistance

If there are concerns around the person’s food intake in hospital, the Dietitian Team can offer support.

If they have difficulty swallowing, they may be assessed by a Speech and Language Therapist. They may need softer food and thickened drinks to aid swallowing.

Please see Sources of support, below, for our information on eating and drinking.

Being in pain can cause distress, but some people with dementia cannot communicate clearly that they are in discomfort.

It’s important that ward staff know what to look out for – eg groaning, shouting out, or holding the part that hurts.

If, when you visit, you feel the person is in pain, make sure you tell the staff as soon as possible.

Please see Sources of support for our information on pain in dementia.

Delirium is a state of increased confusion that develops suddenly over a few hours or days.

It commonly affects people with dementia who are in hospital, especially if they are feeling unwell or in pain.

A person with delirium might:

• become restless
• struggle to concentrate
• become drowsy or withdrawn
• have difficulty communicating, eg rambling or jumping from one topic to another
• not know where they are
• see things that are not there (hallucinations), or believe things that are not true (delusions)

Delirium is treated by treating the underlying cause, such as pain, infection or dehydration. In the meantime, the person may need extra support and reassurance.

Please see Sources of support, below, for more information on.

If you have concerns about how the person with dementia is being cared for, you can often resolve the problem by talking to their named nurse.

Try to remain calm and be specific about your concern, eg: “On two occasions, the person’s meal was taken away before they had finished.”

Be clear about how you would like them to resolve your complaint.

If you’re not satisfied with their response, ask to speak to the Ward Manager. If the concerns are dementia-related, the Admiral Nurse or Dementia Team may be able to help.

It’s a good idea to keep a record of who you spoke to and when, and what was said and done.

If you remain concerned, the hospital’s Patient Advice and Liaison Service (PALS) can help you resolve problems.

When a person with dementia is in hospital, important questions can arise relating to their care, but they may lack the mental capacity to make informed decisions.

A lasting power of attorney (LPA) is a legal document that appoints another named person to make decisions on their behalf.

It must be authorised while the person with dementia still has capacity, so it’s important to make an LPA in advance if possible.

LPAs can be made in England and Wales. There are similar provisions called Power of Attorney (PoA) in Scotland, and Enduring Power of Attorney (EPA) in Northern Ireland.

If there are no legal arrangements in place, you and the person’s hospital team may need to make a ‘best interests decision’.

If the person has an Advance Care Plan, this can guide any decision-making.

If they have made an Advance Decision to Refuse Treatment (ADRT), which states which medical treatments they do not want, this is legally binding.

See Sources of support, below, for information on Advance Care Planning.

When the person with dementia is ready to leave hospital there should be a discharge planning process involving key health and social care professionals.

It’s important for you and the person with dementia (if possible) to be involved in this process.

The discharge plan considers the person’s needs, where they will live and who will provide care or support.

It should be reviewed in the community after discharge to ensure that it meets the person’s needs.

You can also contact Social Services to request:

• a Needs Assessment to establish what support the person with dementia needs
• a Carer’s Assessment to establish what support you or other unpaid carers need in your caring role – see Sources of support, below, for more information

If possible, any equipment and adaptations to help the person return home should be in place prior to discharge – for example grab rails, toilet frames or hoists.

If someone is nearing the end of their life in hospital, they will usually be supported by the Palliative Care Team.

This is a specialist team that aims to make sure that patients are as comfortable as possible and receive care tailored to their needs and preferences.

They may support the person with dementia in hospital, arrange transfer to a hospice, community hospital or care home, or discharge them home where they will continue to offer support, including pain and distress management.

To speak to a dementia specialist Admiral Nurse about a stay in hospital or any other aspect of dementia, please call our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email  helpline@dementiauk.org.

If you prefer, you can pre-book a phone or video call with an Admiral Nurse at dementiauk.org/get-support/closer-to-home.

Dementia UK resources

• Advance Care Planning
• Lasting power of attorne
• Capacity and decision-making
• The Carer’s Assessment
• Dealing with restlessness
• Delirium
• Eating and drinking
• False beliefs and delusions in dementia
• Pain in dementia
• Understanding dying
• Making the home safe and comfortable for a person with dementia
• Recognising the later stages of dementia and moving to end of life care

Other resources

• What is PALS (Patient Advice and Liaison Service)?
• John’s Campaign
• Getting a Needs Assessment