Getting help and support as a carer

When you are caring for someone with dementia you are likely to need support at some point. Carers who get less support are more likely to feel stressed and depressed.

If you don’t have friends or family members who can help or give you a break, there are a number of other ways you can get help. This section describes different kinds of support – not every type of support suits everyone. You also might need different types of help and support at different times. Try a few options to find the right services for you. You might have to be persistent and push to get the help you need. This can be frustrating and you may feel you don’t have the energy, but it is important to carry on and get the support you need.

There are a range of people and organisations you can turn to for face-to-face support, as well as options for using online services. Some of these include:

• GPs, staff at memory clinics and other health professionals, such as dementia specialist nurses and occupational therapists – these people can support and give you advice on medical issues. For example, ask your GP for advice if the person you’re supporting needs your help to move around. They may refer you to a physiotherapist or an occupational therapist or local carers organisations who may provide training about how to lift a person. Contact your local carers organisation, GP or social services to find out what is available in your area.
• Local social services departments who can provide information on registering as a carer and arrange carer’s assessments. The GP may also be able to help with this.
• Local support groups including your local Alzheimer’s Society office, Age UK and Carers UK. These are available in many areas and can be a good source of information on what support is available in your area and how to access it. At the groups you can talk to other carers who understand what you are going through or are in a similar situation. You can share ideas, strategies and advice about caring. For details of local support groups contact Alzheimer’s Society (0333 150 3456) or Carers UK (see the section 'Other resources for carers'), or use our online Dementia Directory at alzheimers.org.uk/dementiadirectory
• Online discussion forums – these can give you practical suggestions or simply be a place where you can ‘let off steam’ after a difficult day. You can join online forums at any time. For example try Dementia Talking Point (alzheimers.org.uk/talkingpoint) which is free and is available 24 hours a day, every day of the year. Carers UK also runs a number of forums.
• Talking therapies, such as cognitive behavioural therapy (CBT) – these can help carers who feel anxious or depressed. Counselling can be very helpful because it gives you a chance to talk about how you feel in a non-judgemental and supportive environment. There are many different types of talking therapies.

Practical support

Download or order a free copy of our booklet 600, Caring for a person with dementia, which provides information and advice on many areas of living with, planning and caring for someone with dementia.

Other things that can help with everyday activities and your caring role include:

• Information – you can get lots of information about caring for a person with dementia. This may include suggestions about strategies to help you deal with difficulties you might be facing. You can also find information about dealing with behaviours that challenge, making decisions for a person with dementia and difficult emotions you may be experiencing. For more information see the full list of Alzheimer’s Society resources at alzheimers.org.uk/publications-list
• Adaptations to the home – you may be able to make changes to the home to make life easier for the person you care for. This could include making adaptations to support their mobility or to help them stay independent. This could also make life easier for you by giving you more time for yourself. For more information and ideas about specific adaptations you could make see the pages on 'Using equipment and making adaptations at home'.
• Technology – if it is used to help you care for someone with dementia, it is known as ‘assistive technology’. For example you could use the internet on a smart phone, tablet or computer for various everyday tasks. These include online banking and shopping. You can also use electronic devices to reassure you that the person you’re caring for is safe when you’re not with them. For example you could use movement sensors in the home or a ‘GPS locator’ device so that you know where the person is. See the pages on 'Using technology to help with everyday life', for more information about these devices and important things to consider, including getting the person’s consent to use them.

Listen to our helpsheet for an audio summary of the key ways that carers can get support:

Support from local authorities

Local authorities including social services departments and health and social care professionals can help people with dementia and their carers.

Your local authority may provide some or all of the following:

• homecare visits
• adaptations to the home
• day centres
• respite care (sometimes called ‘replacement care’)
• support from professionals, such as a dementia specialist nurse
• support groups
• counselling
• information that is tailored to your needs.

You might have to pay for some of these services. Ask your local authority social services department for details. Make sure you get all the support you’re entitled to. You’ll find more information on the pages 'Paying for care and support in England', 'Paying for care and support in Wales', and 'Paying for care and support in Northern Ireland'.

Consider registering as a carer with your local authority. Some local authorities have a Carers Card or Carers Passport scheme. These identify you as a carer and allow you to access support services and other benefits like discounts. Ask your local authority or your GP, or look online for more information.

Carer’s assessment

Both the person with dementia and their carer are entitled to an assessment of their needs. This is called a ‘needs assessment’. The local authority will use these assessments to decide what support you are eligible to receive. As a carer, your needs can be assessed even if the person you’re caring for chooses not to be assessed. The assessment will aim to:

• assess your abilities and how they affect your caring role
• work out your needs and what level and type of support you need.

There are some things you can do to prepare. For example, before you have a needs assessment, think about your role as a carer. How are you coping and what support do you need? Also think about the difficulties you are having now and what you may face in the future if you continue to give the person the same level of care. This can include:

• feeling stressed, depressed or anxious
• not getting enough sleep
• feeling tired from spending long hours caring and not getting enough breaks
• struggling to maintain your physical health
• struggling to combine caring with your work or other commitments
• finding it hard to make time for your other interests and hobbies
• difficulty maintaining relationships with your friends and family members
• practical difficulties, such as not being able to drive
• coping with behaviours that challenge (see our pages on 'Changes in behaviour')
• having no plan for emergencies – for example, if you unexpectedly become ill.

For more information on needs assessments see our pages on 'Assessment for care and support in England',  'Assessment for care and support in Wales', and 'Community care assessment' (for Northern Ireland).

Legal and financial support

Caring for a person with dementia can affect your legal and financial situation in a number of ways. For example you may be deciding whether to give up work. Check whether you can get support to stay in work, such as flexible working arrangements or help from your local authority. Carers have the right to request flexible working arrangements and employers have to give a good business reason to refuse their request.

If you do give up work but you don’t qualify to receive Carer’s allowance, you may still be able to claim Carer’s credit so that your pension won’t be affected. Carer’s credit is a National insurance credit for carers. For more information contact the Carer’s Allowance Unit (see the section ‘Other resources for carers’).

Make sure you and the person you are caring for receive all the benefits you’re entitled to. Age UK can give you advice about this. Or you can visit an advice centre like Citizens Advice to get a full benefits check. For more information see our pages on 'Benefits for people affected by dementia'.

Think about things that could help you manage your health and finances in the future, such as setting up a Lasting power of attorney (LPA). For more details see our pages on 'Lasting power of attorney' (for people living in England and Wales), and 'Enduring power of attorney and controllership' (for people living in Northern Ireland).

If the person with dementia receives benefits but they are no longer able to manage this income, you can apply to the Department for Work and Pensions (DWP) to become their ‘appointee’ so that you can manage this for them. Discuss these options with the person you are caring for. 

You might find it difficult to plan ahead. For example it can be upsetting to think about planning for when a person needs long-term care or they reach the end of their life. However many people find it helpful to find out ahead of time what the impact would be for their home, finances and benefits so that they are prepared.