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Prevalence and regulation

Introduction


Prevalence of dementia in residential care settings and regulation to improve the quality of care

Current estimates suggest that over 9 million European citizens (EU28) may have dementia (Alzheimer Europe, 2017, unpublished document). In Europe, the majority of people with dementia live at home in the community. However, due to different circumstances, and at different stages of the condition, some people will need or chose to move to a residential care facility. Also, some people may develop dementia after moving to residential care. It is still a challenge to estimate which proportion of people living in residential care facilities have dementia.  This varies greatly from country to country, but evidence suggests that this may range from 13.4% in Hungary to some 70-80% in Sweden (Froggatt et al., 2017 – see table 2 for further details). Also, it has to be borne in mind that, whilst an important number of residents may experience cognitive impairment or dementia, several never receive a diagnosis (Cahill et al., 2009, Froggatt et al., 2017).

There are different types of care facilities providing long-term care to older people in Europe. Froggatt and colleagues (2017) identified three different types of care facilities:

  • type 1: facilities providing care to the most dependent older people with on-site physicians, nurses and care assistants,
  • type 2: facilities with onsite nurses and care assistants which rely on external providers for provision of medical care, and
  • type 3: facilities providing care for older people with lower levels of dependency and where the on-site care is provided by care assistants.

They concluded that in the majority of countries included in their study, at least two of these three types of facilities providing care co-exist. Froggatt et al. (2017) highlighted that the situation of the long-term care sector is “continuously evolving with relevant changes happening in funding and organisational models” (Froggatt et al. 2017, 12).

The assurance and monitoring of quality of residential care for older people is particularly important (O’Dwyer, 2015). Nevertheless, this is a complex endeavour. Measures to assess the quality of care are improving, however they are still in the early stages in many Member States (European Commission, 2008). Among other factors that may have an impact on the quality of the long-term care, increasing patient choice and ensuring the capacity of the workforce in long-term care, have been identified as core factors (European Commission, 2008). Similarly, the Social Protection Committee and the European Commission (2014) highlighted that the provision of long-term care should be attuned and responsive to older people’s wishes and preferences. Other issues that have been identified in Europe as challenges to the quality of long-term care are inadequate accommodation, lack of privacy and excessive use of restraint and force (European Commission, 2008).

The development of minimum standards and the licensure and accreditation of facilities are some of the main instruments to regulate quality of care in institutional settings and can be considered as the “starting point” of quality assurance (OECD /European Commission, 2013). In several countries, accreditation or certification is either compulsory or a condition for reimbursement or contracting (OECD/European Commission, 2013, p.22). These processes recognise that the facility meets certain basic criteria and is fit to operate. The type and depth of information addressed in the standards and legislation varies, however, common requirements include aspects related to the living environment, workforce (ratios and qualifications needed) and administrative matters of care provision. Other areas such as human rights of residents, individualised care planning, reporting processes for complaints and specific standards for dementia care, also seem to play an important role, and in recent years, more attention has been given to such areas (OECD/European Commission, 2013).

Most countries have indicators of inputs, such as staffing and care environment, but only a limited number of EU countries collect information on quality systematically  (Social Protection Committee and the European Commission 2014). The work carried out by O’Dwyer on quality of residential care for older people, indicated the existence of three different regulatory regimes in Europe (O’Dwyer, 2015, p.122-124):

  • Self-regulatory approach, typically used in Northern Europe. In this approach, regional and local authorities are tasked with overseeing the quality of care services but the responsibility for the quality of the service provider is seen to rest primarily with the care providers. In these countries, there is a great focus on quality improvement and assurance and providers themselves are required to collect performance indicators.
  • Command and control approach, typically used in mainland Europe, Ireland and the UK, where independent, external bodies are responsible for monitoring the quality of care. In these countries, there are regular inspections and sanctions in case of non-compliance. The focus is on quality assurance and quality or performance indicators are not used.
  • Quality assurance with poor or underdeveloped oversight, typically found in Eastern Europe but also in some Mediterranean countries. Several countries fall in this category, and have poorly developed regulatory systems.

Whilst it is still unclear which approach could have better care outcomes, O’Dwyer’s work suggests that countries using the first approach (self-regulation) are more likely to have higher average standard of care. However, she argued, other factors may also influence this (e.g. the organisation of long-term care services in each country).


Table 2: Proportion of residents with dementia in long-term care facilities (LTCFs)

Country (date of data)

Proportion of residents living in LTCFs with dementia

Austria (2007)

52.5%

Denmark (2013)

66.6%

Finland (2012)

56% (health centres)

68% (nursing homes)

Germany (2007)

61% (60-74 years)

71% (75-84 years)

69% (85+ years)

Hungary (2008)

13.4%

Iceland (2014)

63.2%

Ireland (2012)

64.2%

Italy (2012)

22% (severe dementia in nursing homes)

70% (significant cognitive impairment)

Netherlands (2012)

57% nursing homes

35.6% residential homes

Norway (2007)

81%

Sweden

70-80%

Switzerland (2014)

60%

UK (2011/2013)

47.5% (dementia)

80% (significant memory impairment)

(Alzheimer Society 2011)

31% (cognitive impairment) (Kinley et al. 2013)

Reprinted with permission from “Palliative Care Systems in Long-Term Care Facilities in Europe”, by Froggatt et al., 2017 p.19.


Prevalence of dementia in nursing homes in Switzerland

Alzheimer Switzerland conducted two pieces of research in 2011 and in 2012 about the prevalence of dementia in nursing homes in Switzerland. For this work,  they used the RAI (Resident Assessment Instrument) and PLAISIR (Planification Informatisée des Soins Infirmiers Requis) data in Swiss nursing homes. According to the first of these studies, which involved 26,000 residents from 386 nursing homes in 15 cantons, 47.6% of the residents had a diagnosis of dementia and 16.9% had a CPS >=3 (Cognitive Performance Scale), which corresponds to suspected dementia.  The study conducted in 2012, in four French-speaking cantons (Genève, Jura, Neuchâtel and Vaud), suggested an even higher prevalence, with 83.3% of the residents having either a diagnosis of dementia or suspected dementia (CPS >=3).

 

 

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Last Updated: Friday 31 January 2020

 

 
  • Acknowledgements

    This Dementia in Europe Yearbook received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.
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