Getting help and support as a carer

When you are caring for someone with dementia, there will come a time when you will need extra support. Carers who get less support are more likely to feel stressed and depressed. Asking for help when you need it, or before you think you need it, may make it easier to go on caring for longer.

There are different sources of support available from health and social care professionals. Dementia advice and support services may  also be available from many local authorities or charities, faith groups, or other local or national organisations. 

Ask for help 

Don’t be afraid to ask for help and support if you need it. Sometimes people don’t offer to help because they don’t know what they can do. Try suggesting specific ways that other people can help. If you’ve previously said you can manage without someone’s help, they may not think to offer again, even when your situation changes. Let people know how valuable their support is and how much it helps you.

Friends and family members can provide practical and emotional support. Seeing other people is important for your wellbeing. It can also help to speak to people who are in a similar situation. Our Dementia Support Forum can be a reassuring and helpful place for carers. 

If you’re working and want to carry on doing so, check with your employer if you can get support. This can include flexible working arrangements, which you have the right to request. If you decide to give up work, you may qualify for a carer’s allowance. 

If you would like to find out more contact the Carer’s Allowance Unit, Age UK or Citizen’s Advice.

GPs, health professionals and social services

It is important for everyone to keep a check on their general health. If something doesn’t feel right with your body or mind, make an appointment to see your GP. Your GP can help with any treatment you might need and prevent some problems from getting worse. It’s also important to let your GP know that you are a carer as this can be useful in accessing support.

Ask your GP if you can have a general health check. This is often provided for people over a certain age or with specific health conditions. See what is available to you.

Health and social care professionals provide important support. They include doctors such as GPs and consultants, different types of nurses and other specialists, such as social care workers. The GP should be your first contact for any concerns, and they can refer you to other specialists such as: 

• neurologist or geriatrician 
• psychiatrist 
• dietitian 
• occupational therapist 
• physiotherapist 
• speech and language therapist.

Different types of nurses are available to support people with dementia and those who care for them. These include community mental health nurses or community psychiatric nurses (CPNs), dementia nurse specialists or Admiral Nurses. 

Social care professionals can help with non-medical support. Social workers can assess both your needs, and the needs of the person you support. They can advise on finding support, including equipment and adaptations, and in finding care.  

Contact your local carers organisation, GP or social services to find out what is available to you. 

Local support groups 

Support groups can be of great comfort and reassurance, and they can provide you with a lot of practical and emotional help. These are available in most areas and can include local services from Alzheimer’s Society, Age UK and Carers UK . 

Support groups can also be a good source of information on what services are available in your area and how to access them. Plus, at the groups you can talk to other carers who are in a similar situation. You can share ideas and advice about caring. 

For details of local support groups, contact our Dementia Support Line.

Online discussion forums

Forums can help give you practical suggestions or simply be a place where you can find comfort after a difficult day. You can join online forums at any time. For example, try our Dementia Support Forum which is available 24 hours a day, every day of the year. Carers UK also runs a number of forums. 

Talking therapies

Talking therapy involves talking to a trained professional about your thoughts, feelings, and behaviour. Different types of talking therapy can give you a safe place to talk to someone if you are feeling stressed, anxious or depressed. Therapies can include counselling, cognitive behavioural therapy (CBT) or acceptance and commitment therapy (ACT). 

Different types of therapy may suit different people. However, they all provide the opportunity to talk about how you feel in a non-judgemental and supportive environment. They can help you to: 

• make sense of difficult life events 
•  resolve complicated feelings, or find ways to live with them
•  recognise unhelpful patterns in the way you think or act.
• Speak to your GP about what talking therapies are available in your area, and which might suit you best.  

We produce a large range of information about caring for a person with dementia. This includes practical aspects of managing money, benefits , driving and decision-making.

You’ll also find lots of advice and guidance to help you deal with difficulties you might be facing. This includes dealing with behaviours that challenge and tough emotions you may be experiencing. 

Support from your local authority

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:

• home care 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.

Consider registering as a carer with your local authority. Some local authorities have a carer’s card or carer’s 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 

People with dementia and carers are both entitled to an assessment of their needs. These are:

• a ‘care assessment’ for the person with dementia 
• a ‘carer’s assessment’ for the carer.

The local authority will use these assessments to decide what support you are able to receive.

As a carer, your needs can be assessed even if the person with dementia chooses not to be assessed. These assessments must be provided free of charge, no matter what your financial situation is, or the financial situation of the person you are caring for.

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. Consider how you are coping and what support you need. Particularly note if you are going through any of the following:

• 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 
• having no plan for emergencies – for example, if you unexpectedly become ill.

Bear in mind how things feel now and what difficulties you may face in the future. The person’s needs will increase and they will need even more support. It is important to be open and honest in these assessments even if this feels uncomfortable. This is so that the right level of care and support, for the right tasks, can be found for you.