Hospital care

2. Going into hospital

Someone with dementia may have to go into hospital for a planned procedure such as an operation, during a serious illness or if they have an accident or fall. This can be disorientating and frightening and may make them more confused than usual. Hospitals can be loud and unfamiliar, and the person may not understand where they are or why they are there.

Help from hospital staff

Hospital staff will not necessarily know whether someone has dementia, or they may lack experience of working with people with dementia. It is important that all staff are aware of the person's dementia as it may affect the type or nature of medical treatment they receive.

Some hospitals may have a 'dementia identification scheme' where people with dementia are identified by a small symbol on their hospital identification bracelet. One example is the Butterfly scheme, which uses a butterfly symbol to help staff to recognise people with dementia or memory problems. You may want to ask the ward manager or nurse in charge about such schemes and ensure a note is made on patient notes to alert medical staff who may come into contact with the person with dementia.

Staff should be able to answer any questions and discuss any issues you may have. If they seem too busy to talk, ask to make an appointment - ideally with the named nurse. The named nurse will be responsible for co-ordinating the person's care. This meeting will be an opportunity to discuss any concerns you or the person with dementia may have, and should provide a good basis for future communication. If any problems arise later, they can then usually be dealt with through the named nurse. If you want to discuss the person's condition or treatment in more depth, ask to make an appointment to see the doctor or consultant.

Mental health staff
Some hospital trusts provide a mental health service (sometimes referred to as a 'hospital liaison team' or a 'Rapid Assessment Interface and Discharge' (RAID) team). This team might include psychologists, mental health nurses and mental health specialist doctors.

They can assess people with dementia and advise other nursing and medical staff about mental health issues related to dementia, such as depression. If you are concerned that the person's dementia is deteriorating or not being considered fully, you should make an appointment with this team.

Information about the person with dementia

It is helpful for relatives and friends to share information with ward staff on how the person's dementia affects them. You can also suggest tips on the best ways of assisting and communicating with the person. Any other information you can add is valuable as it will help staff to see and respond to the person with dementia as an individual. For example, tell staff how the person prefers to be addressed - informally, such as 'Charlie', or formally, such as 'Mr Cohen'. The named nurse should share this with other members of staff on the ward.

As information can be lost or forgotten, it can help if a friend, carer or family member writes down some important facts about the person with dementia. This can then be given to the named nurse at the first meeting and should be held in the person's medical notes. Alzheimer's Society has produced a leaflet called This is me which can be used to record this information. When filled in it provides a snapshot of the person with dementia, giving details about them as an individual, such as their personal background, needs, preferences, likes, dislikes and interests. The leaflet can be downloaded from alzheimers.org.uk/thisisme or ordered from Alzheimer's Society Publications Orderline on 0300 303 5933.

If you prefer to do this on paper, one side of A4 is usually enough. Useful information to give about the person includes:

  • the name they like to be called
  • brief details of their normal routines, including whether they need reminders or support with washing, dressing,eating and drinking, going to the toilet or taking medication
  • any difficulties the person may have with communication, and information on how best to communicate with them
  • information about foods they particularly like or dislike, or any difficulties they have eating
  • illness or pain that may bother them
  • any cultural or religious needs
  • information about sleeping patterns
  • whether they like to be active or inactive - for example, if they walk about - and what can calm them when they are agitated
  • whether they have an advance decision or a personal welfare Lasting power of attorney (LPA).

It may also be helpful to include some tips for staff. For example:

  • 'Mr Cohen finds it helpful if people talk slowly and give one piece of information at a time.'
  • 'Saul is more likely to understand if people maintain eye contact while they are talking to him.'
  • 'Miss Sellers can feed herself with a spoon if someone cuts her food up.'
  • 'Ravi often rocks and holds his tummy if he is in discomfort or pain.'

It may also help staff to communicate with the person with dementia if they have details of the person's:

  • close family members or friends
  • pets
  • living situation - for example, whether they live with others or alone
  • past occupation
  • interests.

If the person with dementia frequently walks around the ward, this may make staff anxious. If this is likely, explain that the person finds it comforting to walk around and that staff will need to accommodate this. It may help to point out that preventing the person from doing an activity they wish to do, such as walking, may make them feel threatened, agitated or angry. This must be balanced with making sure the person is safe and does not become lost.

You could also emphasise the benefit of involving the person in suitable activities on or away from the ward. Such activities may include chair-based exercises, and some wards have day rooms where people can watch a film while exercising. You may need to describe how much supervision would be required for this.

How you can help during a hospital stay

There is a lot that you can do for a person with dementia while they are in hospital. This can include practical help with things like eating and washing, as well as providing them with company, stimulation and emotional support.

Practical help
If you choose, you may be able to help with the individual's personal care - for example, taking them to the toilet or supporting them at mealtimes. If you would like to do this, discuss it with the named nurse. Other ways in which you can help might include:

  • making sure clothes are labelled in case they are mislaid
  • cleaning glasses and checking on hearing aids
  • checking the person's mouth for signs of soreness
  • thinking of enjoyable pastimes or entertaining personal possessions to occupy the person's time.

Providing comfort and reassurance

  • Familiar objects, such as photographs of family members or a much-loved pet, can be very reassuring. They can also provide staff with a good talking point.
  • If the person still reads, you could provide a notebook, so staff and visitors can write messages, reminders and details of when they are next visiting.
  • Familiar faces may bring comfort and reassurance. Talking to the person, reading to them, and providing them with emotional support can make a big difference.
  • Noise and bustle on the ward can add to the person's confusion and heighten their levels of anxiety or agitation - particularly at busy times, such as ward rounds or visiting hours. You could ask if there is a quiet room or day room that the person can visit to get away from the bustle.
  • If you think a person is in pain, mention this to a member of hospital staff and ask for an assessment. People behave differently when they are in pain (eg grimacing, rocking) and you will know best how someone you know acts when in pain.

Eating and drinking

  • Mealtimes in a busy hospital environment can be difficult and stressful for a person with dementia. Make staff aware of any difficulties that the person has at mealtimes and how they can help.
  • Make sure the person is given the option of eating in the dining room, if there is one, or at their bedside, if they prefer.
  • Make sure staff help the person with dementia to eat and choose food and support them with eating, if necessary. Don't assume that they are not hungry or don't want their food if they don't seem keen to eat it. Some people with dementia cannot eat their food without reminders and prompts at mealtimes.
  • Staff are often particularly busy at mealtimes and may be grateful for any help you can offer. You may like to discuss this with the ward staff. Some hospitals use cues, such as a different coloured plate or a sign by the bed, to alert staff if a person needs extra help to eat.
  • If a person is struggling to eat using cutlery, consider offering them foods such as bread rolls, potato wedges, celery sticks or seedless grapes that can be easily picked up and eaten with fingers.
  • If the person has difficulty swallowing, ask if they can be assessed by a speech and language therapist, or if food can be provided in a soft or puréed texture. If the person is not eating well, or is losing weight, the named nurse should contact the hospital dietitian. The dietitian will co-ordinate 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. Tube feeding may be suggested by the medical team as a means to help them receive food and fluids. The terms 'nasogastric' or 'gastrostomy' (PEG) tubes are often used. The decision to tube feed should only be made respecting the wishes of the person and in full discussion with carers or relatives.

Medication
Doctors should discuss the person's medication and any changes with the person with dementia and their carer or relatives. 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.

Additional support
Being in hospital can be a disorientating and frightening experience for a person with dementia, and they may require a lot of support from carers, family and friends. Not receiving stimulation and emotional support, or being left isolated and alone, can cause a person's condition to become worse.

Hospital staff are usually very busy and will not generally have the time to stay with the person for long periods, talk to them, read to them or do many of the things that a person with dementia needs to keep their condition from deteriorating.

Carers of people with dementia should be able to spend as much time as necessary with the person, whenever they need to. Some hospitals run a 'carer's passport' or similar scheme. This might allow carers to have unrestricted visiting hours on the hospital by using a card that can be shared among other family members or close friends. It may allow a carer to stay overnight with the person or offer free or reduced-fare parking. Ask the ward manager about this and extended or flexible access rights. Explain to them the effect that being in hospital can have on the person with dementia, and the benefit of this flexibility - working together with them. You are not being unreasonable to highlight this so present your case confidently as someone focused on the well-being of the person with dementia.