Date Revised:

This is part of the Carers Road Map online guide for anyone who is, or may become, a carer for someone who is newly diagnosed with dementia.

Having a diagnosis of dementia which explains the changes in the person close to you is important. It means you can work together to put in place strategies to manage the dementia and consider the option of medication which can sometimes help the symptoms and slow the progress of the condition. Unfortunately, there is no cure for dementia at present, however people can live well with dementia for many years. See living well with dementia on NHS Choices.
 
A timely diagnosis can: 

  • Open doors to much needed services.
  • Give you access to extra finances.
  • Allow you and the person you care for time to plan for the future. 

Ensure you get the support you need as a carer. While caring can be rewarding it can also be stressful and exhausting. It is vital you take good care of yourself and know where to go when you need support and information.

Tips

 

Getting a diagnosis

You may find that getting a diagnosis for someone with dementia is not that straight forward. This is especially the case if the person with the condition is reluctant to seek help, or is still quite young. If you are unable to persuade the person you are concerned about to get help, this does not exclude you from doing so. Your local carers and dementia service will be able to offer you support regardless of whether the person you care for has been diagnosed with dementia. Also speak to your GP if you are struggling to manage as they may be able to give some practical advice. 

Being involved as a carer 

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.

As a carer you should be given every opportunity to be involved from the start when the person you care for is diagnosed with dementia, particularly regarding their care and the treatment of their symptoms. By involving carers and relatives in this way it can lead to better care for people with dementia.
 
It is important that:

  • You and other family members are consulted about your willingness and ability to care.
  • You are given information about the type of dementia, and its possible progress.
  • You are given advice and information in order to understand and manage changes in the memory and behavior of the person you care for, and make plans for the future.
  • You remember that we are all individuals and although there are some common symptoms, dementia will affect each person differently.

As a carer your experience will give you a certain amount of expertise. Speaking to the GP and consultants regarding the person you care for is important. As a carer you are likely to spend a large amount of time with the person with dementia. This will give you the knowledge and experience of how the dementia specifically affects the person you care for.
 
Most professionals working in dementia will be only too pleased to consult with carers. However, if you experience problems being heard and consulted, contact your local carers or dementia service for support and advice.

Confidentiality

Confidentiality is an issue which many carers are concerned about. GPs, consultants and other staff do have to abide by the patient’s rights and wishes in this area. However they must give you enough general information to enable you to care effectively. Professionals also have a duty to let a carer know if the person they care for is at significant risk. 

  • Confidentiality does not prevent the carer from giving the professional information about the person they care for.
  • Confidentiality works both ways so any information you give in confidence should not be passed to the person you care for. 

Northumberland, Tyne and Wear NHS Foundation Trust has produced an excellent guide for carers called Common sense Confidentiality. - please note that this link opens up a pdf.

You can also see our information about confidentiality and mental health.

Tips

  • If you are having trouble getting heard, where possible make a separate appointment for yourself, telephone or write to the practitioner concerned.
  • Remember, you can give the GP or consultant information, even if they are reluctant to give you any.
  • Ask questions if you don't understand (often a lot of medication terminology is used).
  • Contact your local carer service for advice and support.

Access to specialist teams

You might find it useful to get help with navigating NHS and social care services. Ask your GP or local memory service for help to understand what is available in your area, and who delivers each service. The person with dementia may be referred to a number of services that can help, for example:

  • Memory service
  • Occupational therapy
  • Physiotherapy
  • Community psychiatric services
  • Local dementia support and activity groups

These services may be able to help with advice including ways to approach and manage changing behaviour and medication to relieve symptoms.
 
There are also a number of voluntary organisations which offer support. As a carer you should be offered information and/or a referral to local carers and dementia services. They will be able to help you come to terms with the diagnosis, meet other carers and put strategies in place to help with everyday living, and planning for the future.

Advice and information about dementia-related medication 

You may find that you take on the responsibility of managing medication for the person with dementia so it is important to get help with this. Where possible, as a carer you should be included in the conversation about choices of medication, potential effectiveness and any side effects. This should not only be restricted to dementia medication but include all medication taken.
 
Community pharmacies now offer extended services and can be an excellent and easily accessible source of information on medication as well as minor ailments. See pharmacies and medicines.

Tips

 
Next in the Carers Road Map guide: When the carer takes on an active caring role

Next review due: June 2017