The dementia guide: Support for carers

Support for carers: Looking after yourself

Carer relationship
If someone close to you has been diagnosed with dementia, it's important not to underestimate the impact this may have on you. Whether you're the husband, wife, partner, daughter, son, brother, sister or friend of the person, your relationship will change. Many people find that they have taken on the role of a 'carer' without making any decision to do so.

Caring for and supporting someone with dementia can be stressful and at times upsetting. It can also be very rewarding. It's important that you look after your own health and wellbeing, and turn to others for support when you need it. There is advice available to help you understand dementia and do all you can to support the person you care about.

Emotional support

When you're caring for someone with dementia, you're likely to experience a wide range of emotions at different times. These may range from positive feelings - you get satisfaction from supporting the person - to other feelings of loss, grief, guilt, embarrassment and anger. You may also feel awkward about any reversal of your previous roles. It can help to know that this is normal for lots of people caring for someone with dementia.

Try and take time to reflect on how you're feeling, and talk to someone you trust. You might choose a professional, a friend or family member, or someone at a carers' support group. You could try an online discussion and support forum like Talking Point. For more information see Alzheimer's Society services and support and Other useful organisations.

Practical support

Caring for a person with dementia can become gradually more demanding, physically and emotionally. Getting support will make it easier for you to cope and better for the person you care for.

There are many sources of support, including:

  • Social services and the carer's assessment - as a carer you're entitled to have your individual needs assessed by social services. A carer's assessment will consider the impact the care and support you provide is having on your own wellbeing and life. You may be eligible for support from the local authority, who will also offer you advice and guidance to help you with your caring responsibilities. The local authority might charge for some of these services, taking your income and some savings into account.
  • Friends and family - while it can be difficult to accept help, try to involve family members and share responsibilities as it will take the pressure off you a little.
  • Benefits and your employer - if you work, explore flexible working options with your employer. If you decide to stop working, take advice about your pension entitlements. Find out about any benefits you might be entitled to.
  • Support workers - many voluntary organisations have trained dementia support workers who can provide practical information, guidance and support about caring for someone with dementia. They can offer home visits or support over the phone.
  • Support groups - local carers' support groups give you a chance to chat to others going through similar experiences. You can share practical tips and get emotional support. Ask your memory service or local Alzheimer's Society about groups in your area.
  • Online discussion forums - these can be a helpful source of support at any time of the day or night. You can talk online with other people who are going through similar experiences to seek advice and share practical suggestions. 
  • National Dementia Helpline (0300 222 1122) - trained advisers can support you, provide information and refer you to other sources of support.

Your health and wellbeing

As a carer, it can be easy to put the other person's needs first and ignore your own. Looking after yourself is vital for your own health and wellbeing. It will also help make sure you can do your best to care for the person with dementia.

Your health

It's important to make sure that you eat a balanced diet and make time for regular physical activity. Even going for a walk can help.

See your GP about your own health regularly and check that you are on the carers' register at the practice. If you're having problems sleeping, ask your doctor for advice. If you have to help move or lift the person you're caring for, ask your GP to refer you to a physiotherapist for advice so that you don't risk injuring yourself. If you feel sad or anxious a lot of the time, talk to your GP about it as early as possible, as these could be signs of depression or anxiety.

'It's really important to try and get some time on your own, for yourself. I go and read a book upstairs, or I take the dog out. You need that little space.'   

Ann, Wiltshire, carer for a person with dementia

Your wellbeing

Try to make sure you have some regular time to relax or do something just for yourself - this can have a big impact on your wellbeing. Try to get out regularly to meet friends.

If possible, consider an outing or short break, as this can relieve stress and leave you feeling refreshed. Find out about day care or respite (replacement) support for the person you care for so that you can take time out knowing they are well looked after.

For more information see factsheet 523, Carers: looking after yourself

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