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2007: Social support systems

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Organisation and financing of social support to people with dementia and carers

Background information on the social/healthcare system in England, Wales and Northern Ireland

Prior to 1948, healthcare was a luxury that not everyone could afford. Workers on a low wage had access to free doctors but everyone else had to pay. For those who could not pay, there was the Royal Free Hospital which initially relied on consultants giving their services free of charge and money from legacies, donations, subscriptions and fund-raising events. There were also other charitable and voluntary hospitals. Elderly people who could not care for themselves sometimes ended up in work houses, later known as Public Assistance Institutions.

In 1942, the Beveridge Report recommended a universal and comprehensive service covering all people and all needs. The National Health Service (NHS) was formed and started to function in 1948. Although initially intended to provide free health care, within 3 years it was necessary to charge a small contribution from service users. (Source: NHS, 2007 and Lowe, 2002)

The organisation of social support for people with dementia and carers

Responsibility and overall coordination

The Department of Health is responsible for social support to people with dementia. The National Health Service Act 1977 requires NHS bodies and local authorities to co-operate with one another in order to secure and advance the health and welfare of people of England and Wales.

Ideally, health and social care teams should work together at a local level and nationally, but this is often not the case. There are mechanisms to support joint working for example – power to pool budgets, jointly commission services and create Care Trusts – which are a type of NHS body introduced in 2002 to provide better-integrated health and social care. The idea behind care trusts is that by combining both NHS responsibilities and local authority health responsibilities under a single management, care trusts can increase continuity of care and simplify administration.

S.A.P. (Single Assessment Process) is a standardised holistic assessment framework across health and social care which ensures that duplication is minimised and an individual receives timely and proportionate assistance appropriate to their risks and needs. The Single Assessment Process aims to put individuals at the centre of their own assessment and subsequent personalised care planning. Originally brought in for older people, it is increasingly being used as the framework for other adult groups.

Joint Commissioning is key to providing effective social care for adults and children. It is the process by which social services and health authorities decide how to spend their money to get the best possible services for local people.

Organisation of health services and social care

Many people with dementia and their families have multiple needs, which can be identified, assessed and addressed by more than one agency or sector. In particular people with dementia may receive support from both or either of the health and social care systems. An added complication is that the support and care needed by people with dementia and their families could be delivered by government, private or voluntary organisations. However, most support and care is not provided through structured organisations but by individuals, whether unpaid family members, other unpaid caregivers or – increasingly by individuals employed under direct payment or individual budget arrangements.

Health services

In the UK the lead specialty that has evolved to diagnose and treat people with dementia is old age psychiatry. However, even within the UK, diagnosis and treatment might also be carried out by a geriatrician (e.g. if there is concomitant acute physical illness requiring admission to a general hospital), a neurologist (e.g. where the person is relatively young) or a GP (where the GP has a particular skill or interest in the area).

It is UK policy that all areas should have a specialist old age psychiatry service and data held by the Royal College of Psychiatrists’ faculty of old age psychiatry suggest that is now the case. The traditional model of old age psychiatric service delivery combines first assessment either at home following a GP request for a consultant domiciliary visit or more rarely in an out-patient clinic. Follow-up may then be by further consultant home visits, out-patient attendance or community psychiatric nurses (CPNs).

Social care services

Many of the needs of older people with dementia stem from deterioration in their health and are usually met appropriately by health care services. Other needs are better met by social services, but the boundaries between the two are sometimes hard to draw and potentially have implications for access and level of care, and for the balance of funding.

Social services can organise care at home as well as long term and short term residential care. A significant change in the service portfolio for older people over recent years has been the development of ‘extra care housing’ as an alternative to long-term care and as a community focus for intermediate care schemes’ (SSI 2003 p.7). Earlier manifestations of these services were called ‘very sheltered housing’ and ‘housing and care’ schemes. Retirement communities can come within this category (e.g. see Croucher et al 2003 on Hartrigg Oaks in York). Most extra care housing is provided by the social rented sector (local authorities or registered social landlords). Extra care housing still only provides a small proportion of accommodation for people with dementia.

Interaction between the State and voluntary associations/NGOs

The Voluntary Sector Compact is the agreement between government and the voluntary and community sector to improve their relationship for mutual advantage and community gain.

Whilst there are many government departments that offer funding to voluntary organisations, the main department for Alzheimer’s disease and dementia is the Department of Health. There is a special programme of funding called Department of Health Section 64 funding to enable charities to develop services and resources. The following website gives more details:

The overall funding of social support for people with dementia and carers

How support is funded depends on whether the services required are to be provided by the National Health Service (NHS) or social services.


The NHS is largely free at the point of delivery and is funded out of centrally collected general taxation. However, set charges apply to most adults for prescriptions, optician services and dentistry.

Social care

Services provided or arranged through social services departments of local authorities are funded from central and local taxation and are subject to user chargers (personal care is means tested in England, Wales and Northern Ireland).

If care is provided via social services all or some of the cost can be passed on to the person receiving the services depending on their financial position. A nationally applicable means test takes account of an individual user’s income and assets.

Home care

Most local authorities charge for home care and will ask anyone with savings over a certain limit to pay all of their home care costs. Each local authority can decide its own charges for home care. Variation in charges therefore exists between different local authorities, although charges must be ‘reasonable’ and anyone who feels that they are excessive has a right to complain.

Nursing home care

If a person has been assessed as fulfilling continuing NHS health care criteria (where the primary need is a health need), the NHS will pay for all of their care. Anyone living in a nursing home should automatically have been assessed for continuing NHS care.

If a person in a nursing home has not been assessed as eligible for continuing NHS care, they will be entitled to financial assistance with the cost of their nursing care. This is known as the registered nursing care contribution. The amount that the NHS will contribute towards a person’s nursing care is determined by an assessment of the level of nursing care needed. This places the level of need in one of three bands (high, medium or low), with each band corresponding to a level of funding.

Residential care

People living in residential care homes have usually not been assessed for continuing NHS health care and services provided would be means tested.

The legal framework surrounding the provision of social support

The following acts (presented in chronological order) are relevant to the provision of social support.

National Health Act 1946 (came into power 1948):

Due to the National Health Act, free and comprehensive health services are provided.

National Assistance Act 1948 (came into power 1948):

The National Assistance Act creates a duty for local authorities to provide accommodation for persons aged 18 or over who by reason of age, illness, disability or any other circumstances are in need of care and attention which is not otherwise available to them and for the local authority to charge that person for accommodation, following a financial assessment (section 21).

Local authorities may also make arrangements for promoting the welfare of persons who are over 18 and blind, deaf, or dumb or suffer from any mental disorder or who are substantially and permanently disabled (section 29).

The Chronically Sick and Disabled Persons Act 1970:

The Chronically Sick and Disabled Persons Act creates a duty for local authorities to inform themselves of the number of persons to whom they have to provide assistance and existence of welfare services in their area. They are also required to inform people who use those services of any other service that may be relevant to them. Under section 2 of this act local authorities are also required to make arrangements to provide assistance to anyone who falls under section 29 of the National Assistance Act 1948 – including amongst other things meals, equipment, transport to reach any services provided under section 29 and practical assistance for the person in their home.

Guidance published in 2002 under section 2 of this Act introduced Fair Access to Care Services (LAC(2002)13). This introduced a national framework for councils to use when setting their eligibility criteria. The framework is based on risks that arise from needs associated with various forms of disability, impairment and difficulty, and will help councils to promote the independence of those seeking their help. The guidance prioritises the risks faced by individuals into four bands - critical, substantial, moderate and low - and requires councils to adopt these bands in determining their criteria. The risks within the framework relate to both immediate and longer-term risks. The guidance stated that in setting their eligibility criteria councils should take account of the resources locally allocated and available to adult social care. Many councils now only provide services to those in the substantial and critical bands.

The National Health Service Act 1977:

The National Health Service Act sets out the services that should be provided by the NHS, for example hospital accommodation, medical, dental, nursing and ambulance services and any other services for the diagnosis and treatment of illness. It also gives local authorities the power to provide some services, including day centres and home help and laundry services (it is a duty of the local authority to provide the latter two services to people who are unwell or disabled).

When requested to do so by a disabled person, his/her authorised representative or someone who provides care for him/her, a local authority shall decide whether the needs of the person call for the provision by the authority of any services under section 2 of the 1970 Act.

Also, it gives the local authority a duty to take into account the abilities of a person’s carer to carry on caring when it is assessing the needs of an individual.

The Mental Health Act 1983:

This act covers the care and treatment of mentally disordered people. It gives the criteria for compulsory detention in hospital.

The Disabled Persons Act 1986:

This Act strengthened the provision surrounding the meeting of various needs of disabled people in respect of the Chronically Sick and Disabled Persons Act 1970.

National Health Service and Community Care Act 1990:

This act was brought in to promote community care. Each local authority should prepare and publish a plan for the provision of community services in their area and keep this under review. The local authority should consult any health authority, housing authority (if relevant) and relevant voluntary organisations within their boundaries when developing this plan. The responsibility places a duty on authorities to assess people for social care and provide the support they require (section 47(1)). The act established the familiar procedures of 'care management' (social services) or 'care programme approach' (NHS) which the statutory departments now operate to. A mixed economy of care is promoted with the independent, private and voluntary sectors being encouraged to provide resources.

Carers (recognition and services) Act 1995:

A carer may request that the local authority carry out an assessment of their ability to carry on providing care, before assessing an individual under section 47(1) a of the National Health Service and Community Care Act 1990.

Community Care (Direct Payments) Act 1996:

If a local social services or social work department has a direct payments scheme, people can, if they prefer, ask to be given the money to pay for the care services themselves.

The Carers and Disabled Children Act 2000 (came into force in April 2001):

The Carers and Disabled Children Act gave carers the right to an assessment of their own needs to help them to continue to care, irrespective of whether the person they are caring for has had their own needs assessment. The assessment is available to any carer who provides or is intending to provide regular and substantial care. There is no definition of 'regular and substantial care’; this is decided by social services.

Care Standards Act 2000:

The Care Standards Act established a regulatory framework for social care. It established the independent National Care Standards Commission (NCSC) (now Commission for Social Care Inspection) which regulated and inspects social care providers and the Commission for Health Improvement (CHI) (now the Healthcare Commission) which assesses and reviews the performance. It also introduced national minimum standards for care homes and domiciliary care providers.

Health and Social Care Act 2001:

This Act makes provisions for local authorities to make ‘direct payments’ in lieu of direct provision of services to individuals assessed as requiring care.

Health and Social Care (Community Health and Standards) Act 2003:

This Act abolished the NCSC and CHI and created the Commission for Social Care Inspection and the Commission for Healthcare Audit and Inspection (the Healthcare Commission). The majority of the NCSC's functions transferred to CSCI, with the exception of those functions relating to the provision of independent healthcare, which transferred to the CHAI. All of the CHI's functions transferred to the CHAI.

The National Health Service Act 2006, The National Health Service (Wales) Act 2006 and The National Health Service (Consequential Provisions) Act 2006:

The many amendments to the legislative foundation of the NHS – the NHS Act 1977 – leave the law very complex and inaccessible. To remedy the risk of misunderstanding and errors in relation to the law, Ministers agreed in 2002 that the Law Commission should undertake the law reform exercise of consolidation. Most health legislation made since 1977 has therefore been summarised within three Acts of Parliament. They received Royal Assent on 8 November 2006 and came into effect on 1 March 2007 (subject to a few exceptions). The consolidation is primarily one of the structure and operation of the NHS. It will include most, but not all, of the health legislation since 1977. Therefore, the NHS Act 1977 and much of the subsequent legislation has been repealed and replaced.

The Acts affected by consolidation are as follows:

Health and Social Care (Community Health Standards) Act 2003; National Health Service Reform and Health Care Professions Act 2002; Health and Social Care Act 2001; Health Act 1999; National Health Service (Private Finance) Act 1997; National Health Service (Primary Care) Act 1997; National Health Service (Residual Liabilities) Act 1996; Health Authorities Act 1995; National Health Service and Community Care Act 1990; Health and Medicines Act 1988; Hospital Complaints Procedures Act 1985; Health and Social Security Act 1984; Health Services and Public Health Act 1968; and Ministry of Health Act 1919.

The suitability of social support for people with dementia and carers

Adequacy and accessibility in general

There is no shortage of evidence from various parts of the UK that mental health remains one of most common unmet needs of older people (e.g. Department of Health 2001, Holmes et al 1995; Social Services Inspectorate 1997; MRC-CFAS 1999). Recognition of dementia among health and social care staff is poor and while GP knowledge of dementia is growing, there are still problems in this area resulting in delays in getting a diagnosis and referral to specialist services.

When the Audit Commission followed up their 2000 report on mental health services for older people, Forget Me Not, they still found many areas in England without specialist teams for older people with mental health problems, and many teams did not have all the recommended core professions represented. Respite care was hard to access, day hospital services were not available in more than half the areas surveyed, and only a third of the areas had jointly agreed assessment and care management procedures. Almost a quarter of all areas studied had no clear service goals or plans. The physical environments in which respite and hospital services were provided were unsuitable for older people with mental health problems in over a third of the areas, and specialist settings – where available – had ‘consistently good quality physical environments’ in only half the areas.

Many services for people with dementia are provided by generalist services, which often have insufficient training in the specific needs of people with dementia.

People living in rural areas

In general, there is a higher prevalence of dementia in rural and coastal local authorities, and a lower prevalence in urban and metropolitan authorities.

This regional variation will have an impact upon the adequacy of local funding to meet the health and social care needs of people with dementia. Apart from the higher proportion of people with dementia, rural authorities with their dispersed populations may face increased costs and logistical difficulties in providing home-based care in the community (Dementia UK report, 2007).

Transport can be a difficulty for people with dementia and carers living in rural areas without access to private transport and where public transport is infrequent or difficult to use. This can mean that services are less easily accessed if transport is not provided. The NICE dementia clinical guidelines recommend that transport should be provided for carers to enable them to access services such as respite care.

People with different types of dementia

Early diagnosis and assessment of dementia is essential as only then can people with dementia and their carers access the services, information and drug treatments that they may need. The subtype diagnosis should be established. The NICE dementia clinical guidelines state that a diagnosis of subtype of dementia is required and recommend structural imaging (MRI or CT scanning) to help establish the type of dementia. However, there are barriers to using this equipment.

In a National Audit Office report (2007) census, 26 per cent of Community Mental Health Teams used MRI scans regularly, while 66 per cent used CT scans regularly. Average waits were 10 weeks for MRI scans and seven weeks for CT. Half of CMHTs were waiting more than two months for an MRI scan and a quarter waited more than 2 months for CT. Some memory services pay acute trusts for scans whilst others have in-house facilities, which may affect their use of scanning.

People from ethnic minorities

Recognition of the mental health needs of older people from Black and minority ethnic groups may be lower than in the white population (Lloyd 1993, but see Odutoye and Shah 1999). Adamson (2001) found limited knowledge of dementia among families of South Asian and African/Caribbean descent, which could cause difficulties in the planning of community-based services. Gaining a better understanding of the mental health needs of minority ethnic communities has been stated as a policy aim in Wales and England (Welsh Assembly Government 2003, Social Services Inspectorate 2003).

Support for ethnic minorities is available but insufficient. It is funded by a combination of the State, the service users and charities.

Younger people with dementia

There is also a shortage of specialist services for younger people with dementia – leaving no option for them than services set up for older people, which may not meet their needs.
Services and support for people with dementia and their carers

Types of care

Day care

Day care centres exist. They are partly funded by the State and partly by the service users.

Respite care

Respite care in the home is available. It is means tested (Social Services Department). It can also be purchased privately. Short-term and long-term residential respite care services are also available.

Recent surveys have found that day care and respite care provision is not always adequate:

  • In a web forum survey of service users and unpaid carers, over half (51 per cent) of respondents felt the amount of day care provided to them was too little. For 17% of respondents no respite care was available at all when requested (National Audit Office report, 2007).
  • A survey of Community Mental Health Teams (CMHTs) for older people (a key mechanism for delivering services to people with dementia at a local level) showed that some cannot provide or cannot fund services such as day care and respite care. More than a fifth said that funding was a barrier to providing day care and respite care.
  • When CMHTs were asked if they would be able to provide day care at the level required locally, responses were: Yes – 74.4%; No (not available) – 3.3%; No (is available but not funding for it) – 19.2% (National Audit Office report, 2007).
  • When CMHTs were asked if they would be able to provide respite care at the level required locally, responses were: Yes – 66.6%; No (not available) – 6.2%; No (is available but not funding for it) – 23.2% (National Audit Office report, 2007).

Given that family carers play a vital role, day care and respite services may make the difference between a person with dementia being able to live at home or having to enter a care home (National Audit Office report, 2007).

Long-term residential care

Long-term residential care is available for people who meet the criteria. It is partly funded by local authorities on the basis of a financial assessment which takes into account both income (including state or private pensions) and capital (savings, investment and the value of a person’s home). If the person with dementia has over a certain amount of capital (up to £21,500 in England and up to £22,000 in Wales), he/she will be expected to refund the whole cost. The value of a home is usually counted as capital but in some cases it is not e.g. if a husband, wife, partner, relative over 60 or incapacitated person under 60 still lives in the home. Income in the person’s own name may also be counted but there are a few exceptions and the Local Authority has to allow the resident to retain a personal expenses allowance of £20.45 per week for his/her own use.

Palliative care

Palliative care, either at home or in a palliative care centre, is not generally available but there are a few exceptions. For instance, there are isolated examples of services for palliative care at home, some of which provide a good service. Although there is no comprehensive service for people with dementia, there are Palliative Care Teams for older people. If provided at all, palliative care is partly funded by the State and partly by the service users. There are also hospices, which are funded by charitable donations, but they do not usually offer palliative care to people with dementia.

Monitoring in the home via alarm systems

Tele-alarm systems are available which are partly funded by the State. The Church, Age Concern England and the Red Cross also provide tele-alarm services.

Personal assistance and home help

Personal assistance

The following services are available:

  1. Assistance with personal hygiene
  2. Supervision/assistance taking medication
  3. Assistance eating and drinking (not preparation of food)
  4. Assistance with mobility e.g. lifting, moving and walking
  5. Companionship/social activities.
  6. Occupational therapy
  7. Assistive devices
  8. Home adaptation/transformation
  9. Assistance dealing with incontinence
  10. Assistance with skin care

The first eight services are partly funded by the State, partly by service users. Assistance with skin care and incontinence is totally funded by the State.

Some services are provided by NGOs and volunteers. For example, DIAL UK and the Disability Living Foundation provide assistance with mobility and there are a few associations which provide advice and training related to continence.

The Alzheimer’s Society does not consider any of the above services to be sufficient. For example, people with dementia and carers have frequently reported problems with assistance in eating and drinking in hospitals. People with dementia need help to eat and drink, for example having food cut up and being reminded to take fluids. The Alzheimer’s Society regularly receives reports of people losing significant amounts of weight during stays in hospital because they have not been adequately nourished. The causes of this include lack of time, skill and understanding, and poor choices of food. This also makes people with dementia more susceptible to hospital-acquired infections and can delay recovery.

It also regularly receive reports on its helpline of people with dementia in hospitals being found soaked in urine and of long delays before the issue is remedied. In some instances carers report having to change someone’s clothes themselves or clean them up, without assistance. There are a number of reasons why people with dementia could become incontinent. These include forgetting to go, mistaking other things for the toilet and not knowing where the toilet is. These reasons can be easily remedied with practical considerations and appropriate training for staff, but can be a problem in hospitals if no one takes responsibility for this.

Home help

The following home help services are available:

  1. Assistance with housework e.g. cleaning and dusting
  2. Help with the preparation of meals (incl. meals-on-wheels)
  3. Transportation
  4. Laundry

They are all partly financed by the State. The Alzheimer’s Society and Age Concern England are both charities which provide a transportation service. There are no services available to help people with dementia with their shopping.

Home care support services are not sufficient. National Audit Office report (2007) found that access to and quality of home care could be improved. In practice there are a very small percentage of older people receiving intensive home care packages and these focus on those with the greatest need. Surveys have shown that two thirds of local authorities were only supporting people with severe or critical needs. It has been predicted that based on current trends, nobody with lower level needs will receive support by 2009 (Local Government Association, 2006).

Access to care services must be widened to allow people with lower level needs to receive support. The report Dementia UK (2007) makes the following recommendation:

People with dementia need improved home care support packages, including low-level support to retain their independence and dignity.

Stated national policy focuses on early identification and intervention. However, local authorities across the country have been skewing access to home care support towards people with the highest levels of need. It is now very difficult for people not classed as having substantial or critical levels of need to access services. As the population ages and the number of people with dementia increases, this situation will worsen. People with dementia can stay at home for longer with their families if the right support is put in place.

  • The number and extent of home care packages must be increased.
  • Home help services such as help with cleaning, shopping, DIY and gardening must be brought back.
  • The opportunities for people with dementia and carers to access direct payment and individual budgets must be increased.

Psychosocial support and training for people with dementia and carers

NGOs and charities such as the Alzheimer’s Society provide general information about access to services. This is partly financed by the State.

Counselling services are available for people with dementia and for carers, but there are very few for people with dementia and those for carers are insufficient. They are partly funded by the State and partly by charities.

Holiday services for people with dementia are available but insufficient. They are partly financed by the State and partly by the service users. Vitalise is a national disability charity which provides holidays for people with dementia. It works with volunteers so as to also enable carers to have a break from caring. In general, carers wishing to take a holiday have limited possibilities for respite care.

Services providing training for carers are funded by the State, the service users and charities, but they are insufficient. The Alzheimer’s Society also provides some training for carers.

Work/tax related support for people with dementia

Protective measures

The Disability Discrimination Act (DDA) of 1995 protects people with dementia who are still in paid employment. Some of the core concepts of the DDA are that disabled people must not be treated less favourably than non-disabled people, some of their duties should be allocated to another person and that they should be granted leave for rehabilitation, assessment or treatment.

Tax benefits

People who are severely mentally impaired (i.e. they have a severe impairment of intelligence and social functioning which appears to be permanent) are entitled to council tax reductions. This is covered by the Local Government Finance Act 1992. They are not, however, entitled to tax benefits for employing a person to provide them with home care services.

Allowances and grants

The Disability Living Allowance (DLA) grants a tax-free benefit for children and adults up to the age of 64 who need help with personal care or have walking difficulties because they are physically or mentally disabled. The rules for DLA can be found in sections 71-76 of the Social Security Contributions & Benefits Act 1992, and The Social Security (Disability Living Allowance) Regulations 1991.

The Attendance Allowance (AA) is a tax-free benefit for people aged 65 or over who need help with personal care because they are physically or mentally disabled. The rules for AA are in sections 64-67 of the Social Security Contributions & Benefits Act 1992, and the Social Security (Attendance Allowance) Regulations 1991.

Whilst not entitled to reductions or benefits for TV, radio or transport on the grounds of dementia, people with dementia over the age of 65 are, like other people of the same age, entitled to reductions on television licences and to free transport.

Under the Health and Social Care Act 2001, local councils are obliged to offer the option of direct payments in place of services currently received for anyone who has been assessed as needing help from social services.

People with dementia can apply to the local authorities for a Disabled Facilities Grant to adapt their homes. This is means tested and at the discretion of the local authorities.

Work/tax related support for carers and carer allowances

Time off work and flexible working

Paid compassionate leave is available, but is at the discretion of the employer, and is not specifically for the needs of carers. However, if time off is needed to cope with personal circumstances which do not fall under emergencies involving a dependant (see below) a carer may have a right to time off as compassionate leave under their contract of employment.

Employees (working under a contract of employment) have the right to take a reasonable amount of unpaid time off work to deal with unexpected or sudden emergencies involving a dependant. A dependant is defined as a husband, wife, child or parent, anyone living in a household as a member of the family, or anyone who reasonably relies on an individual for assistance. Dependency leave is usually unpaid but some employers have policies which allow paid leave to be taken.

Both of the above-mentioned possibilities are covered by the Employment Relations Act 1999.

The current flexible working law (Employment Act 2002) is to be extended from April 2007 to give carers of adults the right to request flexible working (under the Work and Families Act 2006). The law currently enables parents with a child under 6 or a disabled child under 18 to make a request for flexible working, and places a duty on employers to consider such request seriously and only reject them for good business reasons.

Benefits and payments

The Home Responsibilities Protection (HRP) serves to protect the basic State Retirement Pension position of carers in the UK. If an individual receives Income Support and does not need to register for work, because they are caring for someone who is sick or disabled, they will receive HRP automatically. If an individual is regularly spending at least 35 hours a week looking after someone who is receiving Attendance Allowance, Disability Living Allowance at the middle or highest rate for personal care, or Constant Attendance Allowance, they can apply for HRP. If an individual gets Carers Allowance they will get national insurance credits and will not usually need HRP.

Carer’s Allowance and income support. Carers can claim the Carer's Allowance if they are aged 16 or over and spend at least 35 hours a week caring for a person getting Attendance Allowance, or Disability Living Allowance (at the middle or highest rate for personal care), or Constant Attendance Allowance. They may be able to claim income support if aged 16 to 59 and caring for someone who is sick or elderly. If also entitled to Carer's Allowance, carers may be able to get an extra amount included in Income Support. This is called a carer premium.

The Carer’s Allowance is covered by the Social Security Contributions and Benefits Act 1992 and The Regulatory Reform (Carer's Allowance) Order 2002. Income support is covered by the Social Security Contributions and Benefits Act 1992, the Social Security Administration Act 1992, and the Social Security Act 1998.

Carers may receive a 25% council tax discount if they provide care for at least 35 hours a week and live with the person they care for, are not the partner or parent of the person being cared for, and care for someone who receives either the highest rate of the care component of DLA (Disability Living Allowance) or the higher rate of attendance allowance or constant attendance allowance. This is covered by the Local Government Finance Act 1992 and The Council Tax (Additional Payments for Discount Disregards Regulations) 1992.


Unless otherwise stated, information provided by Clive Evers (Alzheimer’s Society) between March and September 2007 with the assistance of Louise Lakey and Samantha Sharp.

  • Adamson, J (2001), Awareness and understanding of dementia in African/Caribbean and South Asian families, Health & Social Care in the Community. 9(6):391-396.
  • Department of Health/Social Services Inspectorate (1997), At home with dementia: inspection of services for older people with dementia in the community. HMSO, London.
  • Department of Health 2001 - National Service Framework for Older People, Department of Health, London.
  • Holmes C, Cooper B, Levy R (1995), Dementia known to mental health services: first findings of a case register for a defined elderly population, International Journal of Geriatric Psychiatry, 10, 875-81.
  • Knapp, M., Prince, M. et al. (2007) Dementia UK (A report to the Alzheimer’s Society on the prevalence and economic cost of dementia in the UK produced by King’s College London and London School of Economics). Alzheimer’s Society: London.
  • Lloyd (1993), Depression and Anxiety Among Afro-Caribbean General Practice Attenders in Britain, International Journal of Social Psychiatry, Vol. 39, No. 1, 1-9
  • Local Government Association (2006), Meeting the challenges ahead: LGA autumn statement 2006
  • Lowe, R. (2007), Financing health care in Britain since 1939:
  • MRC CFAS and RIS MRC CFAS (1999) Profile of disability in elderly people: estimates from a longitudinal population study. BMJ: 318: 1008-11
  • National Health Service (2007), official website:
  • National Audit office (2007) Improving services and support for people with dementia. London: The Stationery Office.
  • Odutoye K and Shah A (1999) The characteristics of Indian subcontinent origin elders newly referred to a psychogeriatric service, International Journal of Geriatric Psychiatry, 14, 446-53.
  • Social Services Inspectorate 2003 - SSI (2003), Improving older people's services: an overview of performance, Department of Health: London.



Last Updated: Friday 02 April 2010