After diagnosis of dementia: what to expect from health and care services
Published 17 May 2018
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Introduction
If you have been diagnosed with dementia, or are supporting someone with dementia, this information can help you to understand the kind of support and services that are available in England.
There are different types of dementia. The rate at which dementia progresses is different for each person. It can affect people in different ways.
This can mean people need support at different stages – whether they are the person with dementia or they are helping to support and care for a family member or friend.
1. Your care plan
Following your diagnosis of dementia, you should have a care plan. Your care plan sets out what sort of care you and the people who care for you might need. It sets out how you will get the care and support.
A local service will help to develop your care plan. The local service could be a memory assessment service, your local council or your GP. It can be a different local service in different parts of the country.
You and your carer and any other family members can help to create your care plan. You should get a written copy of it.
The care plan should include how you can keep doing the things that matter to you for as long as possible.
You may not need any extra care or support at this stage. If that is the case, your care plan may just be that you will have a check in the future to see if anything has changed for you.
2. A named person to support you
Your care plan should give you the name of the person who will coordinate all the different support you should get. This named person will be your care coordinator. They will be the main point of contact for you and anyone who is helping to support you. A care coordinator is also sometimes called a care navigator.
Your care coordinator can help you understand what help is available.
Your care coordinator should:
- make sure your health is monitored
- look at your care plan with you at least once a year to make sure you are getting support
- make sure you know about the help you can get
- work with your family or friends to make sure you are getting the help you need
3. Help with day-to-day activities
If you need help with day-to-day activities you can have an assessment.
A trained assessor will check if you need help with activities like washing or getting dressed. Friends and family can be with you for this.
Your local council will arrange the assessment. You can contact them direct through social services. Or your doctor or care coordinator can contact them for you.
After your assessment, the council will tell you what support it will give and if you need to pay anything towards it. If you do not need help now, another assessment can be done in the future to check if anything has changed.
4. Help for the people who care for you
Any family members or friends who regularly care for you should also get the help they need. If a person who cares for you appears to need support they should be offered an assessment. Help that the person might get could be:
- respite care to give them some rest
- financial support, such as Carer’s Allowance
Your local council, a doctor or your care coordinator can put your carer in touch with the right local organisation to help them find out more.
5. Getting medical treatment for dementia symptoms
There is no cure for dementia right now, but there are some things that can help the symptoms. Your care coordinator will make sure your physical and mental health is checked and that you are offered the right treatment.
6. Treatment for other medical conditions
If you have health issues that are not related to dementia, you should continue to get treatment for them. If any new problems develop, you should be able to start new treatment.
Your dementia care plan should link to any other care plans for other conditions.
Your care plan should look at how you can stay as healthy as possible. Your care coordinator will help make sure your physical and mental health is monitored. They will make sure you get advice on how to stay as healthy as possible.
7. How other health and care staff can help
All health and care staff should understand how dementia can affect people. They should know how to give you any extra help you or your carer might need.
You and your care coordinator should talk about which health and care staff you would like to know about your diagnosis. This will be set out in your care plan. As things change over time, you and your care coordinator can review your care plan.
8. If you need to stay in hospital
If you need to go into hospital, you should get any extra support you might need because of your dementia.
Before you are discharged from hospital, plans should be in place to make sure you get any extra support that you might need when you leave hospital. The people who assess you could be social workers, physiotherapists, occupational therapists or mental health nurses. They should listen to what you want. The people who care for you can also be involved in this.
9. Making decisions about your future
You may want to plan ahead for a time when it becomes harder for you to make decisions, or when you might not be able to make your own decisions.
Your care plan can cover the care you would like in the later stages of dementia. You can arrange for someone like a family member or friend to make decisions for you if that is needed. This is called a ‘lasting power of attorney’.
You can also make a general statement about your wishes for the future. This is called an ‘advance statement’. You can ask your care coordinator or your local council for more information about setting up a lasting power of attorney or making an advance statement.
There is also information on the Office of the Public Guardian website.
10. Taking part in research
You should be able to take part in research on dementia, if you would like to. You can register with a national website called Join Dementia Research so you can take part in research if there is a project suitable for you.
People who care for you should also be told how they can take part in research. You can ask your care coordinator for more information.
11. Telling people what you think about your care
You should be able to tell your council and the NHS what you think about the help they provide. This is so they can keep getting better at what they do. Your family and friends who care for you should also get the chance to have their say about the help you get.
If you are unhappy with the help you are getting you should tell your care coordinator or someone else who looks after your health and social care. If you want to make a formal complaint, they will be able to tell you what to do.
12. Local organisations that can help
You and the people who care for you should get help to carry on doing the things you enjoy. Your care coordinator can tell you about voluntary organisations that give advice and practical help with this.
You might live in an area that is a Dementia Friendly Community. There are likely to be Dementia Friends in your local area. These are people who understand what it can be like to live with dementia. They often do small, everyday things to support people with dementia and their families.
Your care coordinator can tell you about these schemes if you are interested in knowing more.
13. Care in the later stages
Your wishes about your care at the end of your life should be respected. Your care plan should include how you want to be cared for at the end of your life and the place where you would like to be when you die.
You and the people who care for you should be able to talk about this in a way that feels right for you, and with the information you need.
Health and care staff who work with you should know what your wishes are and act on them wherever they can. They should have the right training to be able to support people with dementia and their families at this stage of the illness.
14. Compassionate care at the end of your life
At the end of your life, the people who are looking after your health should keep your family members and carers informed as your condition changes. Care staff at a local hospice or hospital could also give specialist support if it is needed.
15. Where to go for more information
The following organisations have published information to support people living with dementia and their carers. Some of them also have helplines you can speak to: