Your care

If you think that your care does not match what is described in this information, please talk to a member of your care team.

Respect and an equal right to care

Health and social care staff should treat you with respect at all times. You should not be excluded from any services because you have dementia, because of your age, or because of any learning disability you may have. If it is thought that you may have dementia but you have not been diagnosed with the condition, you should still be able to use any dementia support services.

Information and helping you make decisions

You have the right to be fully informed about your care and to make decisions in partnership with your care team. Unless you decide otherwise, your care team should explain to you and your family:

  • the type of dementia that you have

  • details about symptoms and how the illness might develop

  • treatments

  • care and support services in your area

  • support groups and voluntary organisations for people with dementia and their families and carers

  • advocacy services

  • where you can find financial and legal advice.

You should also be given written information about dementia. This should be in your preferred language and in a format (for example in large print or Braille) that you and your family and carers can understand. Your care team should be able to arrange an interpreter if needed. Any psychological treatment should also be given in your preferred language.

You should be told about the possible benefits and risks of particular treatments. You can ask any questions you wish and can always change your mind about your care as your treatment progresses or your condition or circumstances change.

Consent and capacity

Your own preferences for care and treatment are important, and your care team should support your choices wherever possible. Your care team will always seek your consent (agreement) about your care. They should explain the options available to you and make sure that you understand what has been said.

All treatment and care should be given with your informed consent. However, as your circumstances change, you may no longer be able to make specific decisions (this is called no longer having 'capacity') and you may not be able to communicate your needs. If this happens, your care team have a duty to talk to your family or carers unless you have specifically asked them not to. There is more information about consent on the NICE website. You may also like to read NICE's information for the public on patient experience in adult NHS services and on service user experience in adult mental health. This sets out what adults should be able to expect when they use the NHS.

If you are worried about being able to make important decisions about your care in the future, you can make a set of written instructions (called advance decisions and advance statements) saying what treatments and other help you do and do not want in the future. These instructions may include a lasting power of attorney and a record of your preferred place of care. Your care team should discuss these with you while you are still able to make decisions and can help you write these instructions.

Confidentiality

You should have the opportunity to discuss matters in private with your care team at every stage of your illness. Your care team should explain that some information might need to be shared with other professionals or services. Only in very unusual circumstances, for example if there are serious concerns about your safety, will private information be discussed with other people without your agreement.

As the illness worsens, your care team may need to share some information with your carers. They will only do this with your best interests in mind and it should be done according to the Mental Capacity Act 2005.

Carers and relatives

If you agree, your carers and family members should have the chance to be involved in decisions about your care. Carers and relatives also have the right to receive the information and support they need in their role as carers. There is more information for carers in information for carers of people with dementia.

Your care team should talk to you sensitively about the effects of the illness on your relationships with your relatives and friends, including, if you have a partner, your sexual relationship. You and your partner, and your family or carers, should be given information about local support services.

Personal preferences

Your care should be suited to your individual needs. Your care team should take account of your sex and age and any religious or cultural needs you or your carers may have. They should also consider factors such as your physical health, whether you have a physical or learning disability, sight or hearing problems, and difficulties with English.

It is also important that the care team takes account of your life history, your family and other relationships, and your likes and dislikes (for example, with regard to food). Your needs and preferences should be written into your care plan (see planning your care).