Caring for carers

Joan Martin, Carers Centre, Princess Royal Trust, Salford

Caring for someone with dementia can be a challenging experience.  According to the national carer’s organisation, there are approximately 5.7 million adult carers in the UK, of whom, an estimated 1 million care for someone for over 50 hours per week.  The fact that this work is unpaid means that carers save the government an estimated £57 billion per year.  Recognition of this has led to the development of a number of legal acts, organisations, and provisions to support carers in their often difficult and full-time roles.

Legal Rights

Two acts have been crucial in providing carers with rights of their own, independent of the person for whom they are caring:

  • Carers and Disabled Childrens Act 2000: This gave carers the right to have a community assessment of their own needs regardless of whether the patient requests support or not.  In some areas, the patient and carer are assessed together; in others, assessments are done independently.  The carer assessment should be reviewed every 6 months, and acts as your opportunity to tell social services about your needs.
  • Carers Equal Opportunities Act 2004: This act states that local authorities must make carers aware of their rights to an assessment, and also must take into account carers’ employment, leisure, and lifelong learning wishes.  Other organisations, such as the Primary Care Trust and the Hospital Trust must work together in responding to requests from social services in support of carers.

Support in the Community

Provisions vary across different regions.  However there are several organisations that might be able to help you:

Carers Centre
You can search for your local centre at  The carers centre is an independent organisation supported by donations and expertise from health and social services.  It is designed to support carers, giving advice and information.  It is not a service provider – it simply gives access to information about various topics such as:

  • Getting the best from other services
  • Local support groups
  • Training in caring
  • Help and advice on returning to work/managing commitments
  • Introduction to educational, training, or leisure activities
  • Advocacy in cases of breakdown with social services
  • Opportunities to help others from your own experience.

The carers centre also plays a role in the health and social community, by helping to train health professionals, and working on committees to challenge services in the area and improve service providers.  In doing so, they are responsive to carers’ needs and requests. 

Local informal support groups
In each area, there are likely to be a number of informal support groups, unattached to a national organisation.  These groups may be informative, or purely social.  Your local carers centre should be able to give you relevant contacts.

Age Concern
Again, your local carers centre should be able to point you in the right direction.  Age concern can offer independent advice concerning all aspects of care, and plays both a social and informative role.

This is a national federation, with each scheme being independent within its own area. Crossroads has a licence to provide care on behalf of the local authority. It is a care provider, and gives carers the opportunity to have some free time. It costs approximately £1.50 per hour, with a maximum of £12 per week. The type of care depends entirely on patients’ needs and requirements. For example, someone could be employed simply to stay in with your relative/friend, whereas others might prefer to go out walking together.

Flexibility in Care Provision

There is some flexibility in the way that you deal with your rights and benefits.  Direct Payments are a good example of this.  Basically, each Local Authority has a pot of money to provide services for carers.  By using Direct Payments, your entitlement to financial support can be allocated to you in cash so that you can pick and choose the services that you need.  In effect, you can use the money to ‘buy in’ services from your chosen organisation(s).  Inevitably, there is some paperwork involved, but the Direct Payments scheme should be able to help you to complete it.  The scheme has its own management system, and can advertise for carers for you.  It is now also possible for a relative to act as a paid carer.    


It is important to state that benefits advice is a highly specialised area of expertise.  Rules and regulations are constantly changing and every case is different, meaning that it is difficult to give generalised advice on the topic.  Joan maintains that the only safe way to talk about benefits is on a one-to-one basis with a qualified expert, from either the Welfare Rights Organisation or the Citizens Advice Bureau (CAB).  There were a couple of issues on which she was able to comment:   

Council Tax
If you own a property and care for someone who lives in that property who has lowered mental capacity, it can be possible to get your council tax band lowered to a certain degree. The confirmation of lowered mental capacity typically requires a letter from a doctor involved in your relative/friend’s care. The lowering of council tax bands is independent of council tax benefit. Speak to your local Council Tax Office for details.

Carers and Attendance Allowances
Unlike some of the other benefits available, neither carers nor attendance allowance are means-tested. Their purpose is to help carers to look after people who may need help with their personal care as a result of physical or mental disability. Attendance allowance is available for persons aged 65+. Disability Living Allowance may be an alternative for the under 65s.

Means-tested benefits
Even if you are refused means-tested benefits (e.g. Council Tax/Housing benefits), it is still useful to apply for them. In attempting to claim for such benefits, you become accredited as a carer, and this is recorded in your pension records. This can subsequently lead to an increase in your pension benefit.

Useful contacts


Carer’s centres: 

Age concern:  (0800 009966)

Crossroads:  (0845 4500350)

Direct Payments/Council Tax:

Citizens Advice Bureau: