Carers: looking after yourself

When you're caring for someone with dementia, it can be all too easy to ignore your own needs and to forget that you matter too. This factsheet highlights the importance of looking after your own health and well-being to help you cope, and shows where support is available.

Time to yourself

Make sure you have some regular time to relax or do something just for you.

• Put aside some time each day for yourself - have a cup of tea and read the paper, listen to some music, do the crossword or go for a short walk.
• Get out every week or so to meet a friend, have your hair done, pursue an interest or take part in local activities, for example. It is important to do something that you find enjoyable and that keeps you in contact with the outside world.
• Take regular weekends away or short breaks to recharge your batteries.

Remember, there are plenty of options to help you meet your own needs without compromising the needs of the person you're caring for.

If the person you are caring for can't be left alone, ask friends or family whether they could pop in for a short time, or whether they could come and stay with the person for a few days. Find out what support services are available in your area, such as home care, day care or respite residential care, and what they cost (see 'Getting support', below).

Your health

It is important that you look after yourself. Caring can be hard work, and you need to be healthy and happy if you are to manage it.

• Try to eat a well-balanced diet, with at least five portions of fruit and vegetables a day. This will make you feel better and give you more strength and energy.
• Taking regular exercise is vital for your health and will give you more energy. Walk in the fresh air each day if you can, or do some exercises at home. Ask your GP for advice.
• Make sure you get enough sleep. If your sleep is frequently disturbed by the person you care for, talk to your doctor, social worker or community psychiatric nurse about it.
• If you have to help the person move around, make sure you don't damage your back. Ask your GP to refer you to a community physiotherapist for advice.
• See your GP on a regular basis to check up on your own health. Make sure they are aware of any stress or problems you are experiencing.
• If you start to feel depressed, anxious or stressed, see your GP as soon as possible. There are a number of options available, and these problems are easier to tackle at an early stage.

Your financial well-being

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 before you make changes to your circumstances.

• Before you give up work, check whether flexible working combined with additional support from the local authority might allow you to remain 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, check the position with your pension.
• Make sure you and the person you are caring for are getting all the welfare benefits you are entitled to. If you have had to give up work because of caring, it is a good idea to ring a helpline or visit an advice centre to get a full benefit check (see Factsheet 413, Benefits and 'Useful organisations', below). 
• Think about the best way to manage the financial affairs of the person with dementia when this becomes necessary. This may be through appointeeship or a Lasting Power of Attorney (see Factsheet 472, Enduring Power of Attorney and Lasting Powers 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 Factsheet 467, Financial and legal affairs).

Getting support

If you are caring for someone with dementia, be prepared for the fact that you will need support at some point. You will probably need a lot of different types of help and support, ranging from practical care to give you time off caring, to having someone to talk to about your feelings and concerns. Think about what help you might need, and where you can get it, before you actually need it. That way, when the time comes, you'll know where to turn.

Be explicit about what support you need, especially when you are seeking support in the form of services, and be assertive and persistent. Make it clear that you cannot continue with your caring role unless you receive the support that you need for yourself.

Support from local services

Local authorities may provide help for people with dementia and their carers. Both the person with dementia and their carer are entitled to separate assessments of their needs, and the carer can be assessed even if the person with dementia chooses not to be. If the assessment finds that the person with dementia is eligible for any services, the local authority has a duty to provide these services. Although they do not have a duty to provide services for carers (unless they themselves have a disability), in practice they will generally provide some services.

If you are being assessed as a carer, prepare for the assessment carefully. Think about your role as a carer, how you are managing, and what support you may need to continue. Think about the difficulties you have now, and those you may experience in the long term if you continue caring at the same level. These may include:

• stress, depression or anxiety
• lack of sleep
• struggling to combine work with care
• coping with challenging health problems such as incontinence
• lacking time for the other interests in your life
• fatigue due to long hours spent caring and lack of breaks
• difficulty maintaining relationships with your family and friends
• inability to plan for the future for yourself and/or the person you're caring for
• no contingency for emergencies, such as if you are ill
• if someone else could help you in the tasks that you do, would you have more time to look after the person you're caring for and/or yourself
• lack of practical skills such as being able to drive, or knowing how to lift properly.

Then, think about what would help you to cope. Solutions may include respite care, training, adaptations to the home or counselling. The local authorities may charge for some of these services, taking your income into account.

For more information, see Factsheet 418, Community care assessment.

Support from family and friends

Even though you may be coping well now, caring for a person with dementia may gradually become more demanding, both physically and emotionally. These are some ways you could relieve some of the responsibility from yourself.

• Try to involve other family members right from the start so that the responsibility doesn't all rest with you. Even if they can't offer day-to-day care, they may be able to look after the person while you have a break, or they might be able to contribute financially to the cost of care.
• Always try to accept help from friends or neighbours when they offer it. If you say you can manage, they may not think to ask again.
• Suggest ways that people can help. Perhaps ask them to stay with the person for an hour, or to go for a walk with them, so that you can get on with something else.
• Tell people that you value their support. Remind them what a difference it makes when they pop in for a chat or phone regularly to see how you are.
• Explain to your family and close friends how dementia can affect a person's behaviour. Tell them what life is like for you, and for the person you care for. This will account for apparent contradictions in the person's behaviour, and will help them understand how much you do.

Emotional support

Every carer needs support and people with whom they can discuss their feelings. You can get different types of support from:

• friends and family
• understanding professionals, such as GPs or counsellors
• local support groups where you can chat to others who have had similar experiences and who really understand what it's like. For details of local support groups, contact Alzheimer's Society, your local social services department, the Citizens Advice Bureau, or Carers UK
• online discussion forums. These can be a helpful source of out-of-hours support or practical suggestions, or simply a place to let off steam after a difficult day. Carers UK runs a number of forums, or you could try Alzheimer's Society's Talking Point, see 'Useful organisations' for details.
  

Your relationship with the person with dementia may change and this can have an effect on how you feel towards them. It is important to be able to talk about these feelings with someone you trust. You should not be afraid to say how you feel - it is natural to be confused, upset or even angry at times.

Coping with conflicting demands

Try to pace yourself - you can only do so much. Many carers feel torn between responsibilities - especially if they are trying to care for children, look after someone who is unwell, or go to work as well as caring for the person with dementia.

• Find out whether there are any services available for the person with dementia that could relieve you of some of the stress. Alzheimer's Society National Dementia Helpline can help you to find services in your area.
• Make sure that others close to you understand what you are going through and tell them that you need their support.

Congratulate yourself

At times, caring can feel like a thankless task. The person with dementia may no longer seem to appreciate your efforts, and others may be unaware of how much you do.
Pat yourself on the back from time to time, for:

• managing to cope, day in, day out, with a very difficult situation
• becoming ever more flexible and tolerant, and finding new strengths and skills that you did not know you possessed
• being there for someone who needs you.

For details of Alzheimer's Society services in your area, visit alzheimers.org.uk/localinfo
For information about a wide range of dementia-related topics, visit alzheimers.org.uk/factsheets

Useful organisations

Acas (Advisory, Conciliation and Arbitration Service)

Brandon House
180 Borough High Street
London SE1 1LW
T 08457 47 47 47 (helpline open 8.00am-6.00pm weekdays and 9.00am-1.00pm Saturdays)
E Email via the website (see below)
W www.acas.org.uk

Independent body offering free, confidential advice on employment relations and rights, and providing arbitration between employees and employers.

Age UK

York House
207-221 Pentonville Road
London N1 9UZ
T 0800 169 8787 (general enquiries)
  0800 169 6565 (advice line)
E contact@ageuk.org.uk
W www.ageuk.org.uk

Provides information and advice for older people in the UK. Age UK has been created by the merger of Age Concern and Help the Aged.

Alzheimer's Society

Devon House
58 St Katharine's Way
London E1W 1LB
T 020 7423 3500 (general enquiries)
   0300 222 11 22 (helpline)
E info@alzheimers.org.uk
W alzheimers.org.uk

The UK's leading care and research charity for people with dementia and those who care for them. The helpline provides information, support, guidance and referrals to other appropriate organisations.

Alzheimer's Society Talking Point

W alzheimers.org.uk/talkingpoint

Online discussion board run by Alzheimer's Society for people with dementia and carers to exchange messages with others who may be in a similar situation.

Benefit Enquiry Line (BEL)

Red Rose House
Lancaster Road
Preston
Lancashire PR1 1HB
T 0800 88 22 00 (free helpline open 8.30am-6.30pm weekdays and 9.00am-1.00pm Saturdays)
   0800 243 544 (textphone)
E BEL-Customer-Services@dwp.gsi.gov.uk
W www.direct.gov.uk/disability-money

National, free telephone advice and information service on benefits for people with disabilities, their carers and representatives. Note that advisers can send out forms and give advice but they have no access to personal records.

Care and Social Services Inspectorate Wales (CSSIW)

Cathays Park
Cardiff CF10 3NQ
T 01443 848450
E cssiw@wales.gsi.gov.uk
W www.cssiw.org.uk

Supports the improvement of care, early years and social services in Wales by raising standards, improving the quality of services, promoting best practice, and through regulation, inspection and development.

Care Quality Commission (CQC)

National Correspondence
Citygate
Gallowgate
Newcastle upon Tyne NE1 4WH
T 03000 616161
E enquiries@cqc.org.uk
W www.cqc.org.uk

Regulates, inspects and reviews all adult social care services in the public, private and voluntary sectors in England. Formerly the Commission for Social Care Inspection (CSCI).

Carers Trust

32-36 Loman Street
London SE1 0EH
T 0844 800 4361
E info@carers.org
W www.carers.org

Works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.

Carers UK

20 Great Dover Street
London SE1 4LX
T 0808 808 7777 (free carers' line, Wednesday and Thursday 10am-12pm and 2pm-4pm)
E info@carersuk.org
W www.carersuk.org
www.carersuk.org/Forums   (online discussion forum)

Provides information and advice to carers about their rights, and how to access support. See in particular its factsheet about Carers' assessments.

Citizens Advice Bureau (CAB)

Various locations
W www.citizensadvice.org.uk
www.adviceguide.org.uk

our local CAB can provide information and advice in confidence or point you in the right direction. To find your nearest CAB look in the phone book, ask at your local library or look on the citizens advice website (above). Opening times vary.

Factsheet 523

Last updated: April 2012
Last reviewed: July 2010

Reviewed by: Cathy Baldwin, Programme Delivery Manager, Knowledge and Learning, Alzheimer's Society