Carers: looking after yourself

4. Getting help and support

If you are caring for someone with dementia, you may want or need support at some point. Carers who have less support are more likely to experience stress and depression. If you don’t have friends or family who can help, or you are struggling to take a break, there are a number of organisations that help.

These include voluntary organisations, health and social care professionals and local authorities. You might need different types of help and support at different times. Not every type suits every carer and there may be an element of trial and error in finding the right services for you.

The types of help and support you might want to think about include:

  • GPs, counsellors and other health professionals (eg dementia specialist nurse, occupational therapist) – these can offer support as well as advise on medical issues.
  • Local support groups – these are available in many areas and are a good source of information. You will be able to talk to people in a similar situation and share ideas, tips and strategies about caring. For details of local support groups, contact Alzheimer’s Society or Carers UK (see ‘Other useful organisations’).
  • Online discussion forums – these can also be helpful and may offer practical suggestions, or simply a place where you can let off steam after a difficult day. You can access them at any time. You could try Alzheimer’s Society’s Talking Point at alzheimers.org.uk/talkingpoint. Carers UK also run a number of forums.
  • Information – there is lots of information available on all aspects of caring. This can help if you are struggling with anything from financial issues and activities to depression or eating. 
  • Adaptations to the home – you may be able to make improvements to your home that make life easier for the person you care for. This in turn could make things easier for you. These adaptations could improve a person’s mobility or help them to maintain their independence. For more see our page: Using equipment and making adaptations at home.

    Support from local authorities

    Local authorities can provide help for people with dementia and their carers. Both the person with dementia and their carer are entitled to an assessment of their needs (called a ‘needs assessment’ or ‘community care assessment’). The local authority will use this to decide what support you are eligible to receive. They may be able to provide some or all of the following:
    • information tailored to your needs
    • day centres
    • support groups
    • support from professionals (such as a dementia specialist nurse)
    • counselling
    • adaptations to the home
    • respite care (sometimes called replacement care).

    There may be a charge for some of these services. Speak to your social services department for details.

    As a carer, you can be assessed even if the person you care for chooses not to be. If you decide to ask for an assessment, there are some things you can do to prepare. Think about your role as a carer, how you are coping, and what support you need. Also consider the difficulties you have now, and those you may face in the long term if you continue caring at the same level. These may include:

    • feeling stressed, depressed or anxious
    • not getting enough sleep
    • struggling to combine caring with work or other commitments
    • coping with behaviours that challenge, such as walking about
    • making time for the other interests in your life
    • feeling tired or fatigued due to long hours spent caring and not getting enough breaks
    • difficulty maintaining relationships with your family and friends
    • having no plan for emergencies, such as if you become ill
    • practical difficulties such as not being able to drive.

    For more information see: Assessment for care and support in England: Assessment for care and support in Wales, or, Community care assessment, for those in Northern Ireland.

    Legal and financial support

    Your legal and financial situation may be affected if you are caring for a person with dementia. There are a number of areas to think about, such as those listed below.
    • If you are planning to give up work, check whether flexible working, alongside help from the local authority, might allow you to stay in work. Carers have a right to request flexible working and employers have to give a good business reason for refusing the request.
    • If you do have to give up work, you may be able to claim Carer’s credit (a National Insurance credit for carers) so that your pension won’t be affected. For more information contact the Carer’s Allowance Unit (see ‘Other useful organisations’ at the end of this page).
    • Make sure you and the person you are caring for are receiving all the benefits you are entitled to. Age UK can advise on this, or you can visit an advice centre such as the Citizens Advice Bureau to get a full benefits check. For more information see: Benefits, and ‘Other useful organisations’ at the end of this page.
    • Think about ways to help manage your financial, health and welfare affairs in the future, and talk about it with the person you care for. This may be through a Lasting power of attorney. If the person with dementia receives benefits and is no longer able to manage this income, you can apply to be an appointee to manage this for them. For more see: Lasting power of attorney and Financial and legal affairs. For Northern Ireland, see our page: Enduring power of attorney.
    • Check your own position in terms of home and finances if the person you are caring for goes into long-term care or dies. See: Financial and legal affairs.