Alzheimer's Society

Someone with dementia may be admitted to a general or specialist hospital ward either as part of a planned procedure, such as a cataract operation, or following an accident, such as a fall. Hospital environments can be disorientating for a person with dementia, and may make them appear more confused than usual. However, there is much that can be done to help them adapt to the new environment. They will need reassurance, along with timely and sensitive support. This factsheet is designed for friends, family or caring professionals. It covers some of the issues that should be considered and explains the standards of care that people with dementia and carers should expect.

Help from hospital staff

Ward staff will not necessarily know that an individual has dementia, or may lack experience in working with people with dementia, so it is helpful if relatives and friends can give them information on how dementia is affecting the individual and suggest ways of assisting and communicating with the person. This will make it easier for ward staff to ensure that the person with dementia is comfortable.

Staff should be happy 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 (who is always a trained nurse) will be responsible for co-ordinating the person's care. This meeting will be an opportunity to discuss any concerns, and should provide a good basis for future communication. If any problems arise later, they can then usually be sorted out 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 the consultant.

Some hospital trusts provide a mental health service. Assessment and advice from a member of this team can help nursing and medical staff manage any difficulties the person may be experiencing as a consequence of their dementia. If you are concerned that the person's dementia is deteriorating, you may want to make an appointment with the mental health team.

You may also want to make an appointment to see the hospital social worker. The social worker can advise on a range of matters, such as:

• problems getting to and from the hospital to visit
• benefits
• residential and nursing care
• help at home
• difficulties for carers or friends or family, such as illness, disability, stress or other commitments that may affect their ability to visit or to continue to care for the person. These should also be discussed with the named nurse.

Information about the person with dementia

It is important that all staff are aware of the person's dementia. The named nurse should explain to other members of staff how dementia can affect the person's behaviour and communication. They should also tell staff how the person prefers to be addressed − for example, informally, such as 'Charlie', or formally, such as 'Mr Cohen'.

As information can become lost or forgotten, it can help if a friend, carer or family member writes down some important information about the person with dementia. This written information can be given to the named nurse at the first meeting, and should be held in the person's notes. One side of A4 paper is quite enough. The information should include:

• the name by which the person wishes to be known
• brief details of their normal routines, including whether they need reminders or support with washing, dressing, going to the toilet, eating and drinking or taking medication
• 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 the person likes to be active or inactive − for example, if they walk about − and what can calm them when they are agitated.

It may 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 and gain more insight into 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
• particular 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. You may need to describe what degree of supervision is required. You could also emphasise the benefit of involving the person in suitable activities on the ward.

Tips: how you can help

Practical assistance

If you choose, you may be able to help with the person'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:

• cleaning spectacles and checking on hearing aids
• making sure clothes are discreetly labelled in case they are mislaid
• thinking of enjoyable pastimes or items to occupy the person's time.

Providing reassurance

• Familiar objects, such as photographs on the bedside table of family members or a much-loved pet, can be very reassuring for a person with dementia on an unfamiliar hospital ward. 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.
• 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 and relax in peace.

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 if necessary, and don't assume that the person isn't hungry or doesn'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 extra busy at mealtimes, and may be grateful for any help you can offer in helping the person to eat. You may like to discuss this with the named nurse.
• 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 pureed 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 as a means to help a person 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 patient 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. It may be possible to reduce the dose or stop the medication altogether. If you have any concerns, discuss these with the doctor. (For more information about avoiding drugs unless they are really necessary, see Factsheet 408: Dementia: Drugs used to reduce behavioural symptoms.)

Complaints

If you have any problems with the person's treatment or care, discuss these first with the named nurse. He or she should explain why things went wrong and how they will be put right. Use the following tips to complain effectively:

• Try to start on a positive note by mentioning something you have appreciated about the person's care.
• Try to make the complaint specific − for example, on three occasions you came in and saw that the drugs on the table had not been taken. It may help you to have the details written down.
• Try to stay calm.

If it is not possible to sort the problem out on the spot, keep brief notes, as it is easy to forget details. The notes should include:

• what occurred and when
• who you contacted or discussed this with, and what their response was.

If the problem still cannot be resolved, ask to see the ward manager or make an appointment with the consultant. Alternatively, you may prefer to contact the patient advice and liaison service (PALS). PALS acts on behalf of patients and families, and liaises with hospital staff to help resolve problems and concerns quickly.

Discharge

Discharges should be planned, and carers or family should receive advance notice. However, decisions can often be made quickly, so you should begin preparations as soon as the person goes into hospital. The social worker can advise on the suitability of residential or nursing care, or on ways of helping when the person returns home. An occupational therapist can assess the home environment to advise on any aids to help support the person living at home. (See Factsheet 453, Hospital discharge.)

If the person has received specific advice and input from a specialist (for example, a dietitian) while on the ward, make sure follow-up care is arranged. Ask for contact numbers for further review once the person is back in the community.

At the end of life

• If the person is in the last stages of life, those who are close to them may want to stay with them outside visiting hours. Discuss possible arrangements with staff.
• Depending on the nature of the person's illness − for example, if the doctor feels the person is likely to have a heart attack − you may need to consider your views on resuscitation. The medical team and consultant should always discuss such issues and decisions with the main carer or family members. It may help to talk it through with family or friends. If anything is unclear, ask them to explain any terminology they use.
• The person may have set out their own wishes regarding resuscitation in an advance decision, in which case you need to simply follow their wishes (see Factsheet 463, Advance decision).

Your local Alzheimer's Society branch will always be willing to talk to you and offer advice and information to support your needs.

For more information, Dementia Catalogue, our specialist dementia information resource, is available on the website at alzheimers.org.uk/dementiacatalogue

Factsheet 477

Last updated: July 2008
Last reviewed: July 2008

Reviewed by: Polly Hauxwell, Head of Service Development, Alzheimer's Society