Supporting a person in the later stages of dementia

What to expect in the later stages of dementia

The later stages of dementia (also known as ‘advanced’ or ‘severe’ dementia) can be hard to define and everyone will go through them in their own way. Advanced dementia is likely to cause considerable difficulties in most aspects of a person’s life. This means they will rely on others for much of their care.

As dementia causes changes to the person's brain, the symptoms will get worse over time. Eventually, the person with dementia may struggle to do many of the things they used to. However, even in the later stages they may experience moments of lucidity (being aware of their situation) and some of their abilities may return temporarily.

Our information is for anyone supporting someone in the later stages of dementia, including details on advanced dementia symptoms and the care and support available. It also includes advice on how to support the person and plan ahead for the later stages.

Planning for care

If the person with dementia has made their wishes known regarding care in their later stages, you can support them and help them to meet these plans.

As in any stage of dementia, care and support for the person should always be person-centred. This means it should take into account the person’s life history and background, relationships, needs and preferences. 

If a person with dementia has made their wishes known regarding their care, it is important to support these wishes where possible in the later stage. 

Planning ahead in England and Wales

In England and Wales people can write an advance decision. This is sometimes written as ADRT - advance decision to refuse treatment - and used to be known as a living will or advance directive. They can also write an advance statement to express their wishes about future care (though this is not legally binding). They may also wish to appoint a Lasting power of attorney for health and welfare.

Planning ahead in Northern Ireland

In Northern Ireland people can also make an advance directive and advance statement. They may appoint power of attorney under the Northern Ireland system, Enduring power of attorney and controllership.

We also have financial and legal tips for those in Northern Ireland.

Assessment for care and support

The local authority can carry out an assessment for care and outline a care plan. The plan shows what needs you and the person have and what care and support could meet those needs. The local authority will also carry out a financial assessment to decide whether they will pay for some or all of a person’s care.

Read our information on Assessment for care in England, Northern Ireland and in Wales.

Where could a person with later stage dementia live? 

As a person’s dementia progresses, you might need to think about where they should live. It is important to consider the person’s wishes and which place will suit their needs best.

• Their own home - some people continue to live at home with support from carers and/or health and social care services. Devices and equipment can also help someone at home. Read more about devices to help with everyday living.
• Sheltered and extra care housing - sheltered accommodation and extra care housing should have 24-hour emergency help available via an alarm system. Extra care housing also includes care and support on site (for example, meals may be provided).
• Care home - staff in care homes (including residential and nursing homes) can provide help with personal care (such as washing and dressing). Nursing homes have a qualified nurse on duty 24 hours a day. If the home is registered as a care home with dementia care, they should have staff qualified in supporting people with dementia. The person with dementia will still be able to access NHS services.
• Hospice - care in a hospice focuses on reducing distress and providing support to those who are important to the person. Hospice care is for people who have an illness that is no longer treatable, sometimes including people with dementia. Often this is near the end of a person's life. Read more about end of life care. 
• Hospital - people with dementia are less likely to be cared for in hospital for long periods during the later stages. However, they may have short stays in hospital, often because of another illness. If this is the case, make sure hospital staff are aware of the person's dementia and other information about the person.

It is important to consider the impact of living in a new place. Adjusting to a new environment in the later stages can be challenging. It's important that the person with dementia lives somewhere suitable for them where their needs can be met.

Making a complaint about care

If you are concerned about any aspects of the person's care, ask the service or organisation providing the care for their complaints procedure. If, after following this procedure, you feel that your complaint has not been properly addressed, you can take the complaint further. The next steps should be explained in their complaints procedure.

Medication for advanced dementia

There is good evidence that drugs commonly prescribed for the treatment of Alzheimer's disease (donepezil, rivastigmine and galantamine) have benefits for people in the later stages of the disease. Many doctors now continue to prescribe these for severe Alzheimer's disease.

Memantine is also recommended for people in the later stages of Alzheimer's disease, or in the moderate stage of Alzheimer’s where drugs such as donepezil cannot be taken. It can slow down the progression of symptoms including difficulties with everyday activities and disorientation. There is some evidence it can also help with symptoms such as delusions, aggression and agitation.

However, health professionals do not recommend treatment combining memantine and the other drugs already mentioned (donepezil, rivastigmine and galantamine). Memantine is also not suitable for people with other types of dementia.

Side effects and complications

All drugs have possible side effects. Some of the drugs often prescribed for behavioural symptoms in people with dementia can have severe side effects and may increase the person’s confusion and their risk of falls. Some people in the later stages of dementia are prescribed drugs that are no longer appropriate to their needs, or in doses that are too high.

If you are concerned about the effects of the person’s medication, talk to their GP about changing the dose or medication. 

Caring for somebody in the later stages of dementia

Caring for a person in the later stages of dementia can be rewarding, but also very challenging. When a person with dementia moves into residential care, it can have a big impact on the carer as well. 

It is important to seek support for any feelings you might have. For support or to find out what help is available in your area, call our support line or use our local services directory.