Alzheimer's Society's view on regulation of dementia care

Find out what we think about the regulation of dementia care and how it related to people affected by the condition. 

Update 31 July 2020
Please note, the following content may not reflect the current situation and will be taken under review in the coming months.

What do we mean by regulation?

Regulation is vital to assuring high-quality care for people with dementia. Dementia makes people less able to assert their rights and complain and, consequently, more vulnerable to poor treatment.

In order to address current widespread failings, the regulatory system must be strengthened and incentivise high-quality provision. It must also recognise that people with dementia are a core group of service users and that providing services for people with dementia are a core function of the health and social care system.

The following four bodies regulate care homes and hospitals, and government-funded home care provision, in the UK:

  • The Care Quality Commission (CQC) in England
  • Regulation and Quality Improvement Agency (RQIA) in Northern Ireland
  • Healthcare Inspectorate Wales (HIW)  
  • Care and Social Services Inspectorate Wales (CSSIW) in Wales

What Alzheimer's Society calls for:

  • Recognition of dementia by regulators. 69% of people in care homes have dementia or significant memory problems (Alzheimer's Society, 2014) and, at any one time, it is estimated that 25% of hospital beds are occupied by people with dementia (Alzheimer's Society 2009). Research evidence shows that many hospitals and home care providers, and some care homes, provide an unacceptable level of care to people with dementia (Alzheimer's Society, 2013; Royal College of Psychiatrists, 2011; Older People's Commissioner for Wales, 2011; Alzheimer's Society, 2009; EHRC, 2011). Such widespread failures are unacceptable. The regulatory system must recognise that people with dementia are a core group of service users and services for people with dementia are a core function of the health and social care system.
  • More regular inspections. Inspection is vital to understanding the care provided to people with dementia and must be an integral part of any review system. In 2010-11, the CQC reduced the number of inspections they conducted by 70%. The Society is encouraged that, in 2013-14 in England, the CQC completed its full programme of inspections and is working to increase the number and quality of inspections (CQC, 2014). The Society will work to ensure that regulators in England, Wales and Northern Ireland continue to improve performance in this area. In addition, the Society believes that statutory lay monitoring of care settings, through organisations such as Healthwatch in England, should support the work of the regulator.
  • Sufficient powers. Standards for care must be robust enough to promote and incentivise high quality dementia care, rather than simply enforce minimum standards. The Society supports the tougher, legally-binding standards of care introduced by the Care Act in England. In Wales, Alzheimer's Society will be closely monitoring the development of the Regulation and Inspection Bill to see whether it delivers the required changes. The Society will work across England, Wales and Northern Ireland to ensure that regulations are enforced and translate in to improved care quality.
  • Regulation of social care commissioning. Local authorities are in a key position to drive up standards through their commissioning practices, in particular for homecare services where regulation and inspection is less effective. Current commissioning practice, however, is leading to poor quality care. Research evidences shows that local authorities are commissioning short visit times, of as little as fifteen minutes, on the basis of cost rather than quality (HCA 2012). In Northern Ireland, 28% per cent of visits were 15 minutes or less (HCA 2012). In Wales, a review of commissioning practices and found that local authorities and local health boards need to make major changes to the way they plan and commission services for people with dementia (Care and Social Services Inspectorate Wales, 2014). Alzheimer's Society believes that, given the central importance of commissioning, regulators should oversee this function and promote commissioning for quality, using tools such as the Society's Contracting for quality guidelines for care homes.
  • Effective and robust enforcement. There must be a rapid response to prevent harm and ensure confidence in the regulatory system when standards are not met. Regulators must have the capacity and resources to intervene early and to report to the public on enforcement actions, as this is integral to maintaining confidence in the system. Alzheimer's Society will campaign to ensure that the regulator intervenes early, takes action and provides support to improve performance. The Society supports the Westminster government's introduction of a special measures system to care homes, as part of a package of interventions to raise the performance of care homes, from October 2015 in England.
  • Involvement of people with dementia and carers in regulation. People who use services are the experts in how a service addresses their needs. Regulators should work with people with dementia to develop performance standards and assess care quality. In England, Alzheimer's Society supports CQC's use of "experts by experience" to support inspections. In addition, regulators should encourage and support people with dementia to provide feedback about service quality on an on-going basis to the regulator or other organisations such as Healthwatch in England.
  • Transparent, accessible information on care quality. Information about the quality of health and social care services is vital to making informed choices about care. However, people with dementia and their carers often say they find it difficult to access such information. Regulators should make information that gives a complete picture of the quality of a service, including the quality of dementia care, easily accessible in a range of formats. In England, the Society supports the CQC's introduction of easier to understand inspection ratings that will grade care homes as 'outstanding', 'good', 'requires improvement' or 'inadequate'.
  • Improved financial regulation. The failure of a service provider will have a big impact on service users and carers, particularly care homes. People with dementia may find themselves moved to an unfamiliar home, which can be a distressing experience, or without any access to alternative care. Alzheimer's Society supports the new system of market oversight in England, under the Care Act, which requires CQC to monitor the finances of the largest care companies from April 2015.

References and further information

  • All Party Parliamentary Group on Dementia (2011) The £20 billion question
  • Alzheimer's Society (2014) Dementia UK 2014
  • Alzheimer's Society (2009) Counting the cost: caring for people with dementia on hospital wards
  • Alzheimer's Society (2011) Support. Stay. Save.
  • Alzheimer's Society (2013) Low expectations
  • Alzheimer's Society (2011) Getting personal?
  • Care and Social Services Inspectorate Wales (2014), The National Review of Commissioning for Social Care in Wales 2013-14
  • CQC (2011) The state of health care and adult social care in England
  • CQC (2014) Annual reports and accounts
  • Commission for Social Care Inspection (CSCI) (2008) See me, not just the dementia
  • Equality and Human Rights Commission (2011) Close to home.
  • Equality and Human Rights Commission (2012) Human Rights Review 2012
  • House of Commons Committee of Public Accounts (2012) The Care Quality Commission: regulating the quality and safety of health and adult social care
  • National Audit Office (2007) Improving services and support for people with dementia
  • Older People's Commissioner for Wales (2011) Dignified Care? The experiences of older people in hospital in Wales
  • Royal College of Psychiatrists (2011) Report of the National Audit of Dementia Care in General Hospitals 2011
  • UK Home Care Association (2012) Care is not a Commodity
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