Information for people who use NHS dementia services
NICE has produced a quality standard for the NHS on dementia. A quality standard
describes the level of care that the NHS is working towards. It aims to help health and social
care providers set up and measure their services to deliver a high standard of care. This
document is a summary of the quality standard for dementia. It is written for people with
dementia in England and their families and carers but it may also be useful for anyone with
an interest in the condition
NICE and SCIE have also produced a clinical guideline about supporting people with
dementia and their carers, written for patients and carers (see ‘Understanding NICE
This summary and the ‘Understanding NICE guidance’ for the clinical guideline should be
What the NICE quality standard says
The standard of care your local NHS should aim to provide for people with dementia is
1. The health and social care professionals who care for you should have been trained in
the care of people with dementia.
2. If your GP or another healthcare professional thinks that you might have dementia, you
should be referred to a memory assessment service (this might be an appointment at a
special clinic or with a mental health professional).
3. Your healthcare team should talk to you, and/or your carer(s), and offer you written
information about your condition, your treatment and the support that is available in your
local area when you are diagnosed with dementia.
4. You should be given a care plan that records the support that you will receive, gives the
name of the person or people who will make sure the plan is followed and is written to
address your particular needs.
5. You should have the opportunity, while you are able, to discuss and make decisions,
together with your carer(s), about the use of:
– advance statements (a set of written instructions saying what is to be done if you are no
longer able to make decisions or communicate)
– advance decisions to refuse treatment (a set of written instructions saying which
treatments you do not want in the future)
– Lasting Power of Attorney (allowing you to choose someone to make decisions for you if
you are no longer able to make decisions for yourself)
– Preferred Priorities of Care (a plan that allows you to make decisions about your care in
the future, including where you would prefer to die).
6. Your carer(s) should be offered an assessment of their needs. If emotional,
psychological and/or social needs are identified, they should be given support, such as
psychological therapy and carer support groups.
7. If you develop symptoms that affect your mood and how you behave, which cause you
significant distress, or your behaviour becomes challenging (for example, aggressive or
agitated), you should be offered an early and thorough assessment. Treatments to help
improve this behaviour or the distress it causes you should be recorded in your care
8. If it is thought that you have dementia, or you have been given a diagnosis of dementia,
and you are admitted to hospital or you attend an emergency department, you should
have access to a healthcare professional specialising in dementia and older people’s
mental health, if needed.
9. If you are in the later stages of dementia, you should have your palliative care needs
(that is, care to help relieve the symptoms, such as pain or anxiety, of an illness that
cannot be cured) assessed by your GP and this information should be shared with other
members of your health and social care team.
10.Your carer(s) should have access to services which provide the opportunity to take
short breaks (or ‘respites’) that should be suited to their and your needs.