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Changes in care: a stay in hospital

Going into hospital can be difficult for people with dementia due to the unfamiliar surroundings, people and routines, but there are many ways to help in this unsettling situation.

Hospital visits – planned or in an emergency – can be stressful, especially for someone with dementia and their carer. By preparing for hospital visits it can be a more positive experience for everyone involved. Here are some tips on what you can do to prepare you and the person you care for with dementia, for hospital visits.

Always keep an emergency hospital bag at home for ‘just in case’ so you can just grab it and go. Read ‘What to put in your emergency hospital bag’ (below) which suggests what you should put in the bag. (These suggestions will also help you to pack a hospital bag for a planned visit).

Involve the person with dementia as much as possible in the planning process and discussions of their hospital visit, so they don’t feel excluded.

Prepare a list of questions and concerns for the doctors and nurses – ask questions about anaesthesia, catheters, and intravenous medicines. Anaesthesia can have side effects, including increased confusion, so ask if you can be allowed into the recovery room if possible.

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.

Make a schedule with family and friends to take turns staying with the person with dementia while they are in the hospital. Having people with them will help them to stay calm and less frightened. Build a ‘team’ for care and support and develop roles for each person (spokesperson, hands-on carer, main contact, etc.).

Use a ‘telephone tree’ to keep others posted of progress. This can greatly reduce stress and make sure that you do not have to contact everyone or receive calls from everyone.

Make doctors and nurses aware that the person with dementia may not always be able to answer them accurately. Have an information sheet on the person with dementia, which you can share with the medical and care team.

Make nurses aware that the person with dementia may have difficulty remembering where the emergency button, toilets and bathrooms are. Offer your assistance to help with their daily personal care.

Personalise their bed space with photos, so they feel like they are in a familiar surrounding.

Help with filling out their menu requests and also assist with eating, if needed.

If the person with dementia gets upset in hospital, try comforting rituals such as reading, praying, singing, reminiscing, and listening to music. Remove personal clothes from sight and avoid talking about subjects that might upset them. Give comforting touches or distract them. Slow down and try not to rush them.

You know the person with dementia the best. If they seem more confused than usual highlight this to the nurses and doctors as they may have a fever, infection, dehydration, or are having a reaction to the medication. Consider ‘unexpressed pain’ e.g. furrowed brow, clenched teeth, fists, or kicking – tell doctors/ nurses, as this will help assist them with pain evaluation and treatment.

Stay calm and positive. Your feelings or behaviour may affect how the person with dementia is feeling.

Look after yourself too – take time to care for yourself, and take breaks while in hospital; like go for a walk, or go get a coffee.

Do not leave hospital without a follow-up plan. If you are going home, make sure you have all the instructions you need for follow-up care e.g. what to do if things get worse or do not improve.

Spending time in hospital is stressful for the person with dementia, their carer, and their family. Hospitals are doing their best to make the experience more positive for everyone involved – the patient and their support team – but being prepared as a carer can also make it a bit easier for everyone too.

If you’re caring for someone with dementia, have an emergency hospital bag already packed that you can keep at home for ‘just in case’ so you can just grab it and go without worrying, to reduce your stress.

Here are some suggestions of what you can put in the emergency hospital bag for you, the person you care for, and to help the hospital team out. (We also recommend that you use this check list as a basis for what to put in a hospital bag if your visit is planned too).

What to put in the emergency hospital bag…

…for the person with dementia:

  • Include a change of bed clothing, extra underwear, toiletries, moist hand wipes, plastic bags for soiled clothing, some photographs, comfort objects (i.e. like a blanket if used, a specific item of clothing, a radio/ music or media player (with earphones) if this soothes them) , and a small amount of cash.

…for you (the carer):

  • Keep a pen and paper handy so you can write down information you are told.
  • Keep important paperwork in the bag, so you have it at hand if needed, including: enduring or lasting power of attorney, living will (advance directive) and/or an original DNACPR (Do Not Attempt Resuscitation) order.

…to help the hospital team:

  • Include a list of medication that the person with dementia is on including dosage instructions, a list of medications they have had a bad reaction to, and a note of any significant illnesses or medical conditions (past and present).
  • Create a personal information sheet to help inform doctors. Include: the name the person prefers to be called; the language they communicate in; contact information for doctors, key family members, minister and helpful friends; whether the person wears glasses, dentures, hearing aid or needs mobility aids; the amount of assistance the person needs with personal care and mealtimes; regular daily routines they follow; how they express their needs and emotions; and background information on family and home life, important major life events, favourite foods and music.

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.

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.

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.

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.

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.

Call the Dementia UK Helpline

Our free, confidential Dementia Helpline is staffed by our dementia specialist Admiral Nurses who provide information, advice and support with any aspect of dementia.

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