A quick guide for people with dementia and their family and carers
A diagnosis of dementia may create very mixed emotions. Coming to terms with it, making decisions and planning ahead are all part of living well with dementia.
Getting information and support when you need it from people working in health and social care can make a real difference.
What information to expect
When you are diagnosed with dementia you should be offered information relevant to the stage of your condition, including:
- Your type of dementia and how it will affect you.
- Any further tests, treatment, activities or therapies that might help you.
- Who will provide your care and how to contact them, including
the professional who will coordinate your care.
- Support groups and charities that can help you.
- How dementia can affect your driving and what you need to do.
- How your employer should support you if you work (or are
looking for work).
- Any research studies you could take part in.
This information should be explained to you and given to you in writing. You can ask for it to be provided in a format that you find easy to understand. If you don’t need this information straight away you can ask for it when you do.
The right information and support will enable us to live better with dementia.
You should also have the chance to talk about:
Consent. Do you agree to services sharing information about you? Who can they share information with and what are you willing for them to share?
Information. Do you know who to contact for more advice if your needs change?
Future contact. You may not need any help or further appointments now. If that is the case, would you like to be contacted again and if so, when?
Planning for now
After your diagnosis, you should be directed to the services that can give you more information and support. You should also be given the name of a professional who will co-ordinate any care and support you might need.
The named professional should:
- Arrange a meeting to assess your needs.
- Give you information about services and how to get in touch with them.
- Involve your family or carers (if you wish).
- Help you make a plan for your care and support – they should give you a copy of this and agree how often to check it with you.
If you are unable to make decisions about your care, your views and wishes should still be taken fully into account. There is support available to help you with this.
Help to express your wishes
You should be told about local advocacy services. An advocate can help you express your needs and wishes. They can help you to understand the different options and to make decisions. They can also help you find services, make sure the correct procedures are followed, and challenge decisions on your behalf.
Planning for your future
Thinking ahead may feel difficult but advance care planning can be helpful in making sure people are aware of your wishes for the future. When you feel ready for this discussion, you should be offered support and information to discuss:
- Why it’s helpful to plan ahead.
- Your wishes, preferences and beliefs for your future care (advance statement).
- Whether you want to refuse any specific medical treatment at some time in the future (advance decision).
- Making legal decisions about your health and welfare, and property and money if you can no longer make them yourself (lasting power of attorney).
- Where you would prefer to be cared for, including at the end of your life.
You should be offered the chance to check that any advance statements and decisions are still right for you each time your care and support is reviewed. You can change any decisions you wish to.
Support for carers
As a carer for a person living with dementia, you should be offered:
Training to help you understand dementia, provide care and communicate with the person who has dementia, look after yourself, find out about services, plan activities and think about the future.
Support that is flexible and right for you and what you want to achieve, that helps you support your relative or friend, and that is available when you need it. This may be as part of a group or online.
Advice about how to get an assessment of your own needs (a ‘carer’s assessment’) and about how to get a short break or respite care.
- Dementia: assessment, management and support for people living with dementia and their carers – NICE guideline
- The dementia guide – Alzheimer’s Society Telephone helpline 0300 222 1122
- After diagnosis of dementia: what to expect from health and care services
– Department of Health and Social Care
- Living with young onset dementia – Dementia UK
- Admiral Nurse Dementia Helpline – Telephone 0800 888 6678
- Dementia – SCIE
- Join dementia research – National Institute for Health Research
- Making decisions – Office of the Public Guardian
- Dementia Carers Count – Royal Surgical Aid Society
This content has been co-produced by NICE and the Social Care Institute for Excellence (SCIE). It is based on NICE’s guideline on dementia – discussing and planning support after diagnosis.