Things to consider after a person with dementia leaves hospital

There are different places a person with dementia may be discharged to after a stay in hospital. This will depend on their needs. There are also various options available if the person needs care and support after leaving hospital.

Deciding where a person with dementia will live after leaving hospital

After leaving hospital, the needs of a person with dementia may have changed. They may need more support than they did before going into hospital. If this is the case, where they move to may have to change.

Sometimes this will be temporary, such as being discharged to a smaller community hospital or care home until they fully recover. Sometimes, this change will need to be permanent in order to keep the person safe.

Who decides where the person with dementia will live after leaving hospital?

Depending on the personā€™s individual circumstances, all options for where they live should be discussed with:

  • the person themselves
  • any attorneys or deputies they have
  • the professionals involved in their care.

Generally, the person will choose where they wish to live once they are discharged from hospital. 

If the person with dementia is not able to decide where they will live, who decides for them?

Some people with dementia will be unable to make this decision for themselves. This is known as lacking ā€˜mental capacityā€™ to make the specific decision. 

If the person with dementia is not able to decide where they will live, someone else will have to make this decision for them.

Who makes this decision will depend on which country the person lives in, and whether they had already put plans in place.

If you live in England or Wales

Deciding where the person will live will depend on their situation. For example:

  • If the person has set up a Lasting power of attorney (LPA) for health and welfare, their appointed attorney may be able to make the decision.
  • If the Court of Protection has appointed a deputy for the person, the deputy may be able to decide. 
  • 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. They may also ask colleagues for advice.

Whoever the decision-maker is, they must consider what is in the personā€™s best interests.

Can family and friends of the person with dementia be involved in deciding where they will live?

Family and carers should always be asked for their opinion when deciding where a person with dementia will live.

Some people may not have friends or family who can help represent them. If this is the case, an independent mental capacity advocate (IMCA) should be appointed to help ensure that the personsā€™ views and wishes are taken into account. A professional (usually a doctor or social worker) should organise this.

How are the best interests of the person with dementia protected in this decision?

There may be concerns that moving a person who lacks mental capacity to a care home or nursing home may limit their freedom. This is because they would be supervised and would not be free to leave. If someoneā€™s freedom is limited, this is known as a ā€˜deprivation of libertyā€™.

If someoneā€™s proposed care may result in them being deprived of their liberty, the care will need to be ā€˜authorisedā€™. This means that an assessment will take place to ensure that the care is in the personā€™s best interests. The assessment will also make sure that there isnā€™t another workable option that would be less restrictive. 

If you live in Northern Ireland

If a person cannot decide where to live following discharge from hospital, this decision will be made by professionals as part of the discharge process.

The decision will usually be made by the social worker. They must consider the personā€™s needs and wishes, as well as any advice from the doctor or consultant. Carers and relatives should also be involved in these discussions.

Where should the person with dementia live after leaving hospital?

In their own home

Some people will recover in hospital and will be ableĀ to continue with their life as before. If the person livesĀ at home, they may still benefit from extra support,Ā such as:

  • equipment to help with daily living
  • visitsĀ from a paid carer.

These small changes could helpĀ someone with dementia keep their independenceĀ and help reduce the risk of returning to hospital.

In assisted living

Some people with dementia may be able to move inĀ with friends or family who can help care for them.Ā 

Sheltered housing or extra care housing may alsoĀ be options for the person. These are set up so thatĀ the person with dementia can live independently butĀ has support on hand should they need it. You shouldĀ check what is available locally and whether it canĀ provide all the help that is needed.

As the personā€™s dementia progresses, their needsĀ will change and increase. This means that a careĀ home may be the most appropriate option for them.

Moving more than once in a short period of timeĀ could make the person feel very disorientated orĀ unsettled. Take this into account when looking intoĀ options for assisted living and the level of care theyĀ are able to provide.

In a residential care home

Maintaining independence can be helpful forĀ people with dementia, so options for living at homeĀ or living with extra support should be consideredĀ first. However, some people with dementia will notĀ be able to live independently ā€“ for example, if theyĀ cannot care for themselves or stay safe.

If this is the case, they may need to move into aĀ care home, where staff can support the personĀ with daily care. This can include help with:

  • eating
  • washing
  • dressing
  • going to the toilet.

SomeĀ people have trial periods in residential care whenĀ they are discharged from hospital. This can helpĀ when deciding whether residential care is the bestĀ option for the person, without committing to it.Ā 

Before the coronavirus pandemic, people wereĀ sometimes able to stay in hospital until a roomĀ became available in their first choice of care home. Due to changes in the hospital discharge process,Ā this is no longer possible.

This may mean that theĀ person with dementia has to move into a careĀ home that is not their first choice. For example,Ā it may be further away from family, or cost moreĀ than the person is able or willing to pay.

If thisĀ happens, it can be useful to check the standardĀ rate for care home fees in that area.Ā 

In a nursing home

Staff in care homes support with daily living, butĀ do not provide nursing or medical care. If someoneĀ has difficulty moving, issues with continence orĀ medical needs, a nursing home may be betterĀ suited for them.

Like residential care homes,Ā nursing homes support residents with their dailyĀ care needs, but they can also provide help withĀ nursing care. They must always have a registeredĀ nurse present to provide the medical supportĀ that the residents need.

Who will pay if a person with dementia needs care and support after hospital discharge?

Coronavirus funding for care after discharge

During the coronavirus pandemic, any care that a person needed following a discharge from hospital was paid for. Since 31 March 2022, this funding is no longer available. 

Each local area now has their own agreement on how care may be funded once someone leaves hospital, prior to the assessment of their long-term needs. Ask the case manager responsible for the discharge what funding may be available, or ask for a copy of the hospital's discharge policy.

Assessment for longer-term care needs

If the person with dementia needs longer term care, these will be assessed, along with their finances.

The assessment should take place while the person is recovering, and their long-term care needs are clearer. Except in rare circumstances, the assessment should take place after the person has left hospital.

The person's care needs should always be assessed prior to their finances. Some types of care are also ā€˜means-testedā€™. This means that qualifying for that care will also depend on the personā€™s income and capital ā€“ for example their savings. How quickly the assessment will happen will vary between different areas.

What longer-term support is available to a person with dementia after hospital discharge?

Care provided by the local authority or trust

Some care services are provided by the local authority (or local council) in England and Wales, or the local trust in Northern Ireland.

Local authorities have a duty to assess the care needs of a person with dementia. This is part of the assessment arranged following hospital discharge. Any person has a right to this part of the assessment, even if they then end up paying for their own care.

The personā€™s carer can also have their needs assessed by the local authorityā€™s social services department. 

These assessments will be different for people living in England, Wales and Northern Ireland

If the care assessment shows that the person has care needs, the local authority will then look at how this care will be paid for. To do this, they will complete a financial assessment, also known as a ā€˜means testā€™. This will decide whether the person can fund their care themselves or whether the local authority will contribute to some or all of the cost.

The rules around paying for care will be different for people living in England, Wales and Northern Ireland.

NHS continuing healthcare

Some people with dementia qualify for free NHS care once they have left hospital. This is known as ā€˜NHS continuing healthcareā€™.

This is available to people who need healthcare, which is care that involves medical support. It is not available to people who only need social care, which is care that involves help with daily living, like washing or dressing.

The hospital discharge process should consider whether the person may qualify for continuing healthcare. This process starts with a short checklist. If this checklist shows that the person may qualify for continuing healthcare, the person will then go through a more detailed assessment.

This assessment should usually be completed after someone has been discharged from hospital because this can give a better idea as to how well the person can manage in the community.

It is always worth asking for an assessment if you feel the person with dementia may qualify for continuing healthcare. In most cases, only people with the highest levels of complex, intense or unpredictable healthcare needs will qualify for it. 

Funded nursing

Some people with dementia will be assessed as needing to enter a nursing home, rather than a residential care home.

If they donā€™t qualify for NHS continuing healthcare but do need a nursing home, they should receive NHS-funded nursing care. This is a set amount of money paid directly to the nursing home to help cover some of the nursing home fees.

The rest of the fees will be covered by the person themselves or by the local authority. This will depend on the results of the financial assessment carried out by the local authority (see ā€˜Care provided by the local authority or trustā€™ above). The amount of money is different for people living in England, Wales and Northern Ireland.

Care fees and the Mental Health Act 1983 (section 117 aftercare)

If the person was treated in hospital under section 3 of the Mental Health Act 1983, the local authority and NHS are responsible for providing and funding any related care that is needed after discharge. This can include any care that the person needs in their own home or in a care home. 

Intermediate care

The hospital discharge assessment might also consider whether the person with dementia would benefit from intermediate care. Intermediate care refers to a range of support services and equipment designed to help people regain independence after a stay in hospital. It is sometimes referred to as ā€˜step-downā€™ care.

This might involve the person staying in a residential rehabilitation unit to regain confidence, or it might mean that the person receives extra nursing and care services for a short period of time after discharge. 

Intermediate care generally lasts for a maximum of six weeks, though it can be extended, and is provided free of charge.

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