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 person’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 ‘mental capacity’ 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.

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 person’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 persons’ 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 someone’s freedom is limited, this is known as a ‘deprivation of liberty’.

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. The assessment will also make sure that there isn’t another workable option that would be less restrictive. 

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 person’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 able to continue with their life as before. If the person lives at home, they may still benefit from extra support, such as:

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

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

In assisted living

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

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

As the person’s dementia progresses, their needs will change and increase. This means that a care home may be the most appropriate option for them.

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

In a residential care home

Maintaining independence can be helpful for people with dementia, so options for living at home or living with extra support should be considered first. However, some people with dementia will not be able to live independently – for example, if they cannot care for themselves or stay safe.

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

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

Some people have trial periods in residential care when they are discharged from hospital. This can help when deciding whether residential care is the best option for the person, without committing to it. 

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

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

If this happens, it can be useful to check the standard rate for care home fees in that area. 

In a nursing home

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

Like residential care homes, nursing homes support residents with their daily care needs, but they can also provide help with nursing care. They must always have a registered nurse present to provide the medical support 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 ‘means-tested’. This means that qualifying for that care will also depend on the person’s income and capital – 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?

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 person’s carer can also have their needs assessed by the local authority’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 ‘means test’. 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.

Some people with dementia qualify for free NHS care once they have left hospital. This is known as ‘NHS continuing healthcare’.

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. 

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

If they don’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 ‘Care provided by the local authority or trust’ above). The amount of money is different for people living in England, Wales and Northern Ireland.

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. 

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 ‘step-down’ 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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