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United Kingdom (England, Wales and Northern Ireland)

2013: National policies covering the care and support of people with dementia and their carers

Background information

Where people with dementia receive care and support

The following table provides estimates of the number of people with dementia living at home, in various types of residential care and in hospitals or psychiatric institutions.

Place of residence

 

YES or NO

Estimated number/

Additional information

At home

Yes

Two thirds (of which one third live alone)

In a care home (type not specified)

Yes

Two thirds

In hospitals

Yes

Up to a quarter of hospital beds at any given time

In psychiatric establishments

 

No statistics or estimate available

In the UK, one-third of people with dementia live in a care home and two-thirds live in the community (Knapp and Prince, 2007).  From the proportion that lives in the community, one-third of these live alone in their homes (Mirando-Castillo, 2010).  At any one time, up to a quarter of hospital beds are occupied by people with dementia (Alzheimer's Society, 2009).

Recent research indicates that 80% or more of care home residents in the UK have dementia or significant memory problems (Alzheimer's Society, 2013). The ratio of staff to residents in various care establishments varies locally and regionally.

The organisation of care and support for people with dementia

The overall organisation of care and support

A wide range of health and social care services are available to people with dementia and their carers. There are many different types of health and social care services, including home care and day care as well as the services provided by doctors and nurses. The services available, and the way they are organised, vary from area to area. Some services are in short supply in some areas and many have to be paid for.  Many services are arranged through the National Health Service (NHS) or through local authority social services. Some services are also provided by private businesses and voluntary organisations.

Many care services can be arranged through the local authority social services department. How services are organised, and the kinds of services offered, differs from one local authority to the next, but services often include equipment and adaptations, meals on wheels or frozen food delivery, home care, respite or short break services, day care and care in a care home. Many local authorities offer these services in partnership with other organisations. The local authority’s role may include making a community care assessment (described in more detail in question 17) and helping to build a support plan. They may also undertake monitoring and reviews.

Care assistants may help with personal care, such as getting the person up, washed and dressed, helping with continence, changing bedding and emptying commodes, doing laundry, supervising meals to make sure the person eats properly, supervising taking medication, providing company and social activities, and putting the person to bed at night. A support plan should outline the needs and aspirations of the person with dementia and the services that are necessary to enable these needs to be met.

In England

The majority of health services, including emergency care, elective hospital care, and community and mental health services are now commissioned by Clinical Commissioning Groups (CCGs), of which there are 211 in England.  This process is supported by NHS England.  Social services are managed by local authorities, of which there are 152 in England.

In Wales

There are seven Local Health Boards (LHBs) in Wales which are responsible for planning and securing delivery of primary, community, secondary care services in their areas. There are also 3 NHS Trusts in Wales which have a specialised national remit.  Social services are managed by local authorities, of which there are 22 in Wales.

In Northern Ireland

There are six Health and Social Care (HSC) Trusts in Northern Ireland.  Trusts manage and administer hospitals, health centres, residential homes, day centres and other health and social care facilities and they provide a wide range of health and social care services to the community.

How specific aspects of care and support are addressed

Care services in the UK are regulated to ensure that they demonstrate adherence to essential standards.  In England these standards are set out in the Care Quality Commission’s (CQC) Essential Standards of Quality and Safety.  In Wales, care services are regulated by the Care and Social Services Inspectorate Wales (CSSIW) according to minimum standards for care homes for older people, domiciliary care agencies, and nurses’ agencies.  In Northern Ireland, health and social care is regulated by the Regulation and Quality Improvement Authority (RQIA) according to the minimum standards.

A major barrier to people with dementia accessing the advice, information and support (emotional, practical and financial) that they need from social services, voluntary agencies and support groups is the fact that diagnosis rates are so poor.

Once a diagnosis of dementia is confirmed, their GP should arrange to see the person with dementia from time to time to assess changes and discuss any problems. He or she may refer the person with dementia to a specialist for help in assessing changes, and for advice on ways to deal with specific difficulties. The GP is also responsible for the general health of the person with dementia.  The GP and a hospital specialist may jointly prescribe treatment, depending on the person's situation, where they live, and what medication they are already taking.  Some services, such as community nursing, are arranged through the GP, either directly or after discussion with social services.

If a person is confused, has memory problems or has dementia and may need support, under the NHS and Community Care Act 1990 their local authority social services department should carry out a community care assessment.  The 'community care assessment', also referred to as a 'care assessment' or a 'needs assessment', enables social services to find out what the person's care needs are, and to decide which services could help to meet those needs. This could be a range of services, as described in question 9.

The local authority must provide services to meet the needs of the person, if those needs are such that they fall within the eligibility criteria that have been set locally for the level of needs the local authority will meet.  Services may be provided directly by the local authority or arranged through other agencies, such as health or housing departments, or voluntary or private organisations.  The local authority can adopt up to four separate bands of needs, depending on their own financial resources, that reflect the severity of risk to a person's independence if these needs are not met. These are: critical, substantial, moderate and low needs. Due to financial pressures on their resources, most local authorities will only meet critical and substantial needs.  This means that many people with dementia are not receiving the support that would help them to live well with their condition.

The local authority can charge for the services it arranges. However, only the person receiving the services will be financially assessed. The assessors will ask questions about the person's financial circumstances to see how much, if anything, they can contribute towards the cost of services.  People on low incomes are exempt from payments. The procedures for charging for care in the person's own home and the amounts charged vary among local authorities, but government guidance sets out a broad framework for the local authority to follow.  However, these charges can add up to a considerable sum of money over time.  This ‘dementia tax’ punishes people for not developing a condition which would be covered by the NHS.  Proposals for a cap on care costs in England are currently going through the legislative process, but Alzheimer's Society does not believe that these proposals go far enough.

Rather than receive services arranged by the local authority, the person with dementia or their carer may instead choose to be given a 'direct payment' from the local authority so they can arrange the services themselves. The local authority must be satisfied that the person is willing and able to manage a direct payment, either alone or with assistance.

Training

Which social and healthcare professionals provide care and support

The following social and healthcare professionals are involved in the provision of care and support to people with dementia in residential care or living at home.

Social or healthcare professional

Involved in the provision of care and support to people with dementia in residential care or at home

Nursing staff

Yes

Auxiliary staff

Yes

Allied health professionals

Yes

Specialists (e.g. psychiatrists, gerontologists, neurologists)*

No

General practitioners*

No

* Only if they are linked to the provision and organisation of care and support (i.e. not with regard to their role to provide medical treatment).

To work as a nurse in the NHS you must have a degree in nursing.  Nursing degrees are offered in four different areas: adult, children, learning disabilities and mental health.  Nurses who want to specialise in dementia care tend to follow the mental health nursing route.

No formal qualifications are necessary for some entry-level healthcare assistant roles.  However, it is possible to start work as a healthcare assistant through an apprenticeship.  There may be the opportunity to obtain qualifications in Healthcare Support Services or Clinical Healthcare Support, which may lead to roles with greater responsibility.

Many social care jobs will not require any qualifications to start with, depending on the level or type of job.  It could be possible to enter the sector as an apprentice or to undertake a variety of qualifications, for example a level 2 Health and Social Care Diploma to be a care worker, a level 3 Health and Social Care Diploma to supervise others or a degree to become a social worker or an occupational therapist.

Health Education England (HEE) was established as a Special Health Authority in June 2012 to provide leadership for the new education and training system in England.  HEE supports healthcare providers and clinicians to take greater responsibility for planning and commissioning education and training through the development of Local Education and Training Boards (LETBs), which are statutory committees of HEE.

There are no comparable organisations in Wales and Northern Ireland.

The type of training that social and healthcare professionals receive

Access to training in dementia care varies considerably across the caring professions.  There is no mandatory dementia training for staff providing care in the home or working in residential homes. Details of the content of the training in dementia mentioned in the previous section are not known.

How the training of social and healthcare professionals is addressed

The training of social and healthcare professionals is addressed in national policies.

England

Objective 13 of the Living Well with Dementia: a national dementia strategy (2009) is ‘An informed and effective workforce for people with dementia.  Health and social care staff involved in the care of people who may have dementia to have the necessary skills to provide the best quality of care in the roles and settings where they work. To be achieved by effective basic training and continuous professional and vocational development in dementia.’

Actions that will be taken by the Department of Health to take on board the implications of the dementia strategy include:

  • The Department to work with representatives of all bodies involved in professional and vocational training and continuing professional development to reach agreement on the core competencies required in dementia care.
  • These bodies to consider how to adapt their curricula and requirements to include these core competencies in pre- and post-qualification and occupational training.
  • Such changes also to inform any review of national health and social care standards.
  • Commissioners to specify necessary dementia training for service providers.
  • Improving continuing staff education in dementia.

The strategy states that the ambition is for curricula for undergraduate professional qualifications and continuing professional development for doctors, nurses, therapists, other relevant health service staff and social care staff to all contain modules on dementia care.  There is currently a range of training and education providers in dementia care but no nationally recognised system of quality assurance for this training.

The Prime Minister’s Challenge on Dementia (2012), commits to working with the sector to identify how best to improve early diagnosis of dementia through improvements in awareness, education and training and through potential improvements to the General Practitioner (GP) contract.

Wales

Improved training for those delivering care is one of four priority areas outlined in the National Dementia Vision for Wales (2011).  In this vision, Welsh Government makes the commitment to improve training in dementia care by:

  • developing training packages to be delivered to health and social care professionals and local authorities on dementia;
  • creating training packages (learning resources) to support carers;
  • oroviding additional training to Community Advice Listening Line staff.

Northern Ireland

“Improving Dementia Services in Northern Ireland: a regional strategy” (2011) commits the Department of Health, Social Services and Public Safety’s (DHSSPS) HR Directorate, Health and Social Care Board, Public Health Agency and HSC Trusts to co-ordinating a training and development plan across primary, community and secondary care, in statutory and non-statutory sectors, to improve knowledge and skills in providing care to people with dementia. This plan will include the needs of those providing informal care to people with dementia.

Support for informal carers

The issue of support for informal carers is addressed in national policies.

England

The carers’ strategy “Recognised, Valued and Supported” sets out actions to support carers for 2010-2014.  Priorities include:

  • supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages
  • enabling those with caring responsibilities to fulfil their educational and employment potential
  • personalised support both for carers and those they support, enabling them to have a family and community life
  • supporting carers to remain mentally and physically well.

Wales

The Carers Strategy was last updated in 2007.  Between November 2012 and February 2013, Welsh Government consulted on a refresh of the Strategy.  We expect this to be launched in June 2013.

Northern Ireland

Northern Ireland’s carers strategy Caring for Carers was published in 2006.

With regard to the support of carers in general, just as people with dementia should receive a community care assessment, unpaid carers over the age of 16 are entitled to an assessment of their own needs, if they are providing, or intending to provide, a substantial amount of care on a regular basis.  Local authorities can provide carers with services in their own right. These are subject to charges or may be covered by direct payments in the same way as services for people with dementia.  The same issues around the level of eligible need also apply to carers and limit the number of carers who receive support.  Furthermore, many carers do not even have a needs assessment; carers may not be aware that they are entitled to this and local authorities do not proactively aim to identify people who are providing unpaid care.

Carers who spend more than 35 hours a week looking after someone with substantial care needs are also eligible to receive Carers Allowance.

National Alzheimer Association

The Alzheimer’s Society provides the following services and support.

Helpline

x

Information activities (newsletters, publications)

x

Website

x

Awareness campaigns

x

Legal advice

 

Care coordination/Case management

x

Home help (cleaning, cooking, shopping)

x

Home care (personal hygiene, medication)

x

Incontinence help

 

Assistive technologies / ICT solutions

x*

Tele Alarm

 

Adaptations to the home

x*

Meals on wheels

 

Counselling

 

Support groups for people with dementia

x

Alzheimer cafes

x

Respite care at home (Sitting service etc.)

 

Holidays for carers

x*

Training for carers

x

Support groups for carers

x

Day care

x

Residential/Nursing home care

 

Palliative care

 

* The Alzheimer’s Society sells some AT devices and home adaptation items in its shop and sometimes organises day trips for carers.

References

Alzheimer’s Society (2009).Counting the Cost: caring for people with dementia. Alzheimer’s Society

Alzheimer’s Society (2013).Low expectations. Alzheimer’s Society

Department of Health, Social Services and Public Safety (2006).Caring for carers: recognising, valuing and supporting the caring role. Department of Health, Social Services and Public Safety. Available at: http://www.dhsspsni.gov.uk/ec-dhssps-caring-for-carers.pdf

Department of Health. (2009)Living well with dementia: a national dementia strategy. Available at: https://www.gov.uk/government/publications/living-well-with-dementia-a-national-dementia-strategy

Department of Health (2010).Recognised, valued and supported: next steps for the carers strategy.Department of Health. Available at:

https://www.gov.uk/government/publications/recognised-valued-and-supported-next-steps-for-the-carers-strategy 

Department of Health, Social Services and Public Safety. (2011).Improving dementia services in Northern Ireland: a regional strategy. Department of Health, Social Services and Public Safety. Available at:

http://www.dhsspsni.gov.uk/improving-dementia-services-in-northern-ireland-a-regional-strategy-november-2011.pdf

Department of Health (2012).Prime Minister’s challenge on dementia. Department of Health

Knapp, M. and Prince, M. (2007). Dementia UK: the full report. LSE, King’s College of London and Alzheimer’s Society. Can be downloaded freely at: http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2

Mirando-Costillo, C., Woods, B. & Orrell, M. (2010). People with dementia living alone: what are their needs and what kind of support are they receiving?International Psychogeriatrics, 22, 4, 607-617

Welsh Assembly Government (2011).National Dementia Vision for Wales. Available at: http://wales.gov.uk/docs/dhss/publications/110302dementiaen.pdf

Acknowledgements

Alice Southern, Policy Officer, Alzheimer’s Society

 

 
 

Last Updated: Tuesday 25 February 2014

 

 
  • Acknowledgements

    The above information was published in the 2013 Dementia in Europe Yearbook as part of Alzheimer Europe's 2013 Work Plan which received funding from the European Union in the framework of the Health Programme.
  • European Union
 
 

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