The later stages of dementia

12. Treatment and care

Medication

There is good evidence that drugs commonly prescribed for the treatment of Alzheimer's disease known as the cholinesterase inhibitors (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. 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.

Memantine is recommended in the guidance used by health professionals as part of NHS care for the treatment of severe Alzheimer's disease, or in the moderate stage of Alzheimer's where drugs such as donepezil cannot be taken.

There is some evidence that both memantine and cholinesterase inhibitors (known as 'combination treatment') can be helpful. However, the guidance for health professionals does not recommend combination treatment.

Memantine is not suitable for people with other types of dementia.

For more on the drug treatments available see factsheets 407, Drug treatments for Alzheimer's disease, and 408, Drugs for behavioural and psychological symptoms in dementia.

Planning for care in the later stages

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. These may consist of various things.

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 and preferences about future care (though this is not legally binding). They may also wish to appoint a Lasting power of attorney for health and welfare.

For more information see factsheets 463, Advance decisions and advance statements (which includes a form to create an advance decision), 460, Mental Capacity Act 2005, and 472, Lasting power of attorney.

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. For more information see Northern Ireland factsheet NI467, Financial and legal tips, and factsheet NI472, Enduring power of attorney and controllership.

Where will the person be cared for?

As the person's dementia progresses, think about the most suitable place for them to live based on their wishes and needs, as well as the support
available to them. This includes whether other people are able and willing to care for them. The local authority can carry out an assessment of need for everyone who may be in need of community care support.

For more information see factsheets 418, Assessment for care and support in England, W418, Assessment for care and support in Wales, or in Northern Ireland NI418, Community care assessment.

Wherever the person is cared for, if staff have information about the person and their life, condition, behaviour and routines, they will be able to provide better, person-centred care. Alzheimer's Society has a support tool called This is me (1553) that can be used to record this information for a person who has communication difficulties. When completed, it provides a snapshot of the person with dementia, giving information about them as an individual, such as their specific needs, preferences, likes, dislikes and interests. It is also helpful to communicate regularly with the professionals caring for the person. People in the later stages of dementia can live and be supported in different places. Find out whether the person's needs can be met in these settings.

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 sometimes support the person to remain at home. For more information see factsheet 437, Assistive technology - 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 physical and psychological 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. For more information see factsheet 531, 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.

If you're thinking about the person moving in the later stages consider the impact this will have on them. Adjusting to a new environment in the later stages can be challenging. It's important that the person lives somewhere suitable for them where their needs can be met.

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.