Advice and information for people affected by dementia on the hospital discharge process.
Discharge is the term used when a person leaves hospital. This should only happen once a doctor at the hospital decides that the person is 'medically fit'. A person with dementia may have complex needs that should be considered before they can be safely discharged. For example, they may need to move into a care home or need adaptations made to their existing home, such as a stair-lift. Others may need support in their own home or in the home of a relative or friend.
Every hospital has a hospital discharge policy. This is a public document that anyone can ask to see. It should include details of how the hospital staff will arrange the discharge.
Plans about the date and time of discharge should be discussed with the person and their carer, if they have one. Ideally these plans will start to be discussed a reasonable period of time before discharge, and will include details about where the person will be living and the care that they will need.
Hospital staff must ensure that transport to the person's home or care home has been arranged. They should also take extra care when making plans to discharge someone on a Friday or during a weekend or a public holiday as it may be difficult to contact homecare workers and GPs on these days.
The hospital discharge process should include:
- an assessment of the person's needs and living environment, with consideration given to the people involved in supporting them - often referred to as their 'support network'
- a written care plan that records these needs
- a system for monitoring and, if necessary, adjusting the care plan to meet any changes in needs
- confirmation that any required services are in place in time for the discharge - for example, home visits needed to help with personal care, or grab rails in the home to help with support and stability
- an assessment to see if the person qualifies for NHS continuing healthcare (see 'NHS continuing healthcare' below).
Assessment for hospital discharge
Before a person is discharged, their physical, psychological and social needs must be assessed. Any support or care services that are required should be arranged before they leave hospital. Any organisations that will be providing these services must be informed of the date and time of the person's discharge, and when they should start to provide the services.
If the person's needs have changed considerably since they were admitted to hospital, they may require an assessment involving several health and social care professionals. This might involve a hospital consultant, nursing and ward staff, physiotherapists, occupational therapists, social workers, psychiatrists and registered mental health nurses. It may help to make a list of the names of people you have spoken to and their contact details.
The person with dementia and someone involved in their day-to-day care should be fully involved in this assessment. The assessment may include the person returning home briefly before they are discharged to see how they will cope and what help and adaptations they might need. This brief return home might highlight whether and where certain adaptations are needed, such as grab rails or a ramp. It will also allow these adaptations to be arranged before the person returns home. If the person's needs have not changed considerably, they may need a more brief assessment.
At the time of the assessment, the person with dementia, their carer or relatives are entitled to have explained to them in writing:
- the health authority's national eligibility criteria for NHS continuing care (see 'NHS continuing healthcare' below)
- any services that the health services will provide (in England this will generally be by the local clinical commissioning group (CCG), in Wales by the local health board, and in Northern Ireland by the Department of Health, Social Services and Public Safety)
- the services that the local authority will provide or arrange, including the likely cost of these and any welfarebenefits that the person or their carer may be able to claim to help pay for them
- the complaints procedures of the healthcare provider and local authority.
It's also important to note that the person's carer is entitled to have their needs assessed by the local authority's social services department as well. For more information see our pages: Assessment for care and support in England; Community care assessment in Wales; or Community Care Assessment, for those in Northern Ireland.
Deciding where the person will live
Generally, a person will choose where they wish to live once they are discharged from hospital. However, some people with dementia will be unable to make this decision for themselves, and so someone will have to make it for them.
The ability to be able to make a decision like this is called 'mental capacity'. Some people with dementia will not be able to do this and so are said to 'lack capacity'. There is a legal test for assessing someone's mental capacity. This is outlined in: Mental Capacity Act 2005. There is currently no capacity law in Northern Ireland, so this section is mostly about decisions made by people in England and Wales.
England and Wales
Who decides where a person will live will depend on their circumstances. If the person has set up a Lasting power of attorney (LPA) for health and welfare, their appointed attorney will make the decision. An LPA is a legal tool that allows someone to appoint another person to make certain decisions on their behalf in the event that they are no longer able to make them for themselves. For more information, including information about the previous Enduring power of attorney, see: Lasting power of attorney.
Alternatively, the Court of Protection (see 'Other resources') can appoint a deputy to make these decisions for the person. If this has been done, the deputy will decide. For more information see our page: Becoming a deputy for a person with dementia.
If there is no deputy or attorney, the decision will be made by a health or social care professional, such as the hospital social worker consulting with colleagues. Whoever the decision maker is, they must consider what is in the person's best interests, and they should ask family and carers for their opinion. In the event that the person doesn't have any friends or family to speak on their behalf, an independent mental capacity advocate (IMCA) should be appointed to help ensure that their views and wishes are taken into account. A professional (usually a doctor or social worker) should organise this.
It may be that the person's needs will be best met living at home. Alternatively, it might be that they are best met in supported housing or residential accommodation. This decision must be made in the person's best interests.
There may be concerns that moving a person with dementia who lacks mental capacity to a care home may deprive them of their liberty. This is because in a care home they would be under continuous supervision and would not be free to leave.
If someone's proposed care may result in them being deprived of their liberty, the care will need to be 'authorised'. This means that an assessment will take place to ensure that the care is in the person's best interests, and is the least restrictive option. This is an additional safeguard to ensure that, when someone's freedom is being restricted, it is the right thing to do and in the person's best interests. For information see: Deprivation of Liberty Safeguards (DoLS).
In Northern Ireland, if a person cannot decide for themselves where they will live following discharge from hospital, this decision will be made by professionals as part of the discharge process. This will usually be by the social worker, and they must consider the person's needs and wishes, as well as any doctor's or consultant's recommendations. Carers and relatives should also be involved in these discussions.
Equipment and adaptations
The planning that happens when a person is discharged from hospital should include arranging to provide any equipment and adaptations they will need to help them live safely at home - for example, wheelchairs, hoists or grab rails. Care homes providing nursing care (nursing care homes) will usually have this sort of equipment.
For advice on equipment, adaptations and the financial help that is available see: Equipment, adaptations and improvements to the home.
The hospital discharge assessment might take into account whether the person with dementia will benefit from intermediate care. Intermediate care refers to a range of support services and equipment designed to help people regain some or all of their independence after a stay in hospital. This may mean they can go home with the reduced risk of an incident (eg a fall or urinary tract infection) that might cause a return to hospital.
Intermediate care could be a stay in a residential rehabilitation unit to regain confidence, or nursing and care services for a short period of time after the person is discharged.
Intermediate care generally lasts for a maximum of six weeks and is provided free of charge. Other rehabilitation services can be provided for a longer period and may be charged for.
Care provided by the local authority (council) or trust
Services provided by the local authority in England and Wales, or the local trust in Northern Ireland, are often means-tested. This means the person with dementia might have to contribute towards the cost, although they (or their carer) might be eligible for certain benefits to help them pay for this. The hospital discharge assessment should consider this.
For more information on the rules around paying for care see the pages: Paying for care and support in England, Paying for care and support in Wales; Paying for care and support in Northern Ireland.
The Care Act (2014) says that everyone who has eligible care needs in England must be allocated a personal budget. This is money that must be used to pay for the things agreed in the person's care plan in order to meet their needs. The local authority has a duty to offer direct payments (meaning the person receives the personal budget as a cash sum), but the person has the option to refuse and request that social services manage their personal budget for them. More information can also be found in our section: Personal budgets.
Many people in Wales will also be allocated a direct payment. For specific information on direct payments in Wales see the wales.gov.uk website.
NHS continuing healthcare
Some people with dementia are entitled to free NHS care once they have left hospital, known as 'NHS continuing healthcare'. This is available to people whose primary need is for healthcare, rather than social care. In most cases, only people with significant healthcare needs will be eligible.
Before leaving hospital, the hospital discharge assessment should consider whether someone is eligible for continuing healthcare. This process starts with a brief initial assessment, and if this shows that someone may be eligible, they will receive a more detailed assessment.
Some people with dementia who are eligible to receive it may not currently be receiving it. It is always worth asking if you feel you or the person you are caring for may be eligible.
For more see Alzheimer's Society's booklet 813, When does the NHS pay for care?
Delayed discharge from hospital
The Care Act in England and the Community Care (Delayed Discharge) Act 2003 in Wales aim to ensure that people do not stay in hospital longer than necessary (sometimes referred to as 'bed blocking').
When a person is becoming ready for discharge, the hospital must inform the local authority. They must assess the person's needs and arrange any necessary services within a certain period of time so that the person can be discharged safely and in a timely manner. If the local authority does not make these arrangements on time, it may have to pay a fine to the hospital (or relevant NHS body).
The processes that the local authorities and hospitals must follow to comply with this can result in people feeling pressured to leave hospital quickly and to accept a care home placement they do not want. If this happens it is sometimes appropriate to make a complaint. For more information see the 'Complaints' section below.
At the end of life
Some people with dementia will unfortunately not be well enough to be discharged home and will live their last days in a hospital ward. This can be a very distressing time for everyone involved. However, hospitals have certain procedures to make things more comfortable for the person with dementia and their family, friends and carers.
Things to consider:
- 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.
- People at the end of life may be able to be moved from a main ward to a quiet side room.
- 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 and these should be followed (see Advance decisions and advance statements, or Northern Ireland, Financial and legal tips).
Most UK hospitals have specific guidelines for care at the end of life. These ensure that:
- decisions about care are made in accordance with a person's needs and wishes
- staff communicate regularly and sensitively with the person and their relatives
- the person at the end of life and their relatives are involved in treatment and care decisions.