EUROPEAN PAPERS ON THE NEW WELFARE

Dementia and Diagnosis — The Discrepancies in Response across Europe

1. Introduction
The inexorable growth of our ageing population has led to a rise in the global prevalence of dementia syndrome. The word dementia, coming from the Latin de meaning “apart” and mens from the genitive mentis meaning “mind”, is a descriptive term, describing the pattern of symptoms of brain disorder which involve the progressive damage and eventual death of brain cells. The result is the devastating loss of cognitive and intellectual functions that is often accompanied by changes in psychological and emotional states such as depression, agitation, aggression and apathy.
As a result of our success in increasing longevity, we are now paradoxically facing what one British Minister described, as a “Tsunami” of dementia.1 It is estimated that in 2006, 7.3 million Europeans (across the 27 Member States) between 30 and 99 years of age had some form of dementia. Within this group, more women (4.9 million) than men (2.4 million) are affected. It is expected that by 2050 the number of people with dementia in the EU will have grown to 15 million. Every 24 seconds a new case of dementia arises in Europe with individuals and families left counting the cost.
According to the available epidemiological data, across the EU fewer than 50% of people with dementia receive a diagnosis. However the number of people affected is probably significantly higher.2 The vast majority of people with dementia similarly do not receive a specialist diagnosis in terms of identifying the specific type of dementia, be it Alzheimer’s disease, Vascular dementia and mixed dementia (which is a mixture of Alzheimer’s disease and dementia) or the rarer types of Lewy body dementia, dementia in Parkinson’s disease and Frontotemporal dementia.
This paper will explore why there are variations in the diagnosis of dementia across the continuum of care in different EU Member States and consider what the reasons may be for the differences in approach. It will also consider the dynamics which have led certain EU Member States to become perceived leaders in the field of diagnosis. The later part of the paper will explore the respective merits of different policy interventions in the field of dementia diagnosis and will argue that early diagnosis constitutes good value for the public purse.

2. Dementia and Diagnosis

It is critical to understand that dementia is not part of the normal ageing process. While dementia is predominately a disorder of later life, it can affect people of all ages. The vast majority of people with dementia either do not receive a specialist diagnosis at any time in their illness, or do so only late in the disorder, or at a time of crisis. This has profound repercussions for the individual’s access to treatment and care.
The conceptualisation and stigma attached to dementia in societies affects diagnosis rates in many different ways. For many individuals and families across Europe a lack of awareness surrounding the condition proves to be a major barrier to people seeking help and receiving an accurate diagnosis and referral. Research by the Alzheimer’s Society in 2002, entitled ‘Feeling the Pulse’ found that on average people in the UK wait up to three years before reporting symptoms of dementia. A lack of recognition of the symptoms of dementia, the severity of symptoms, and denial and fear were also identified as significant barriers to early diagnosis.3
Widespread ignorance, prejudice and stigma surrounding dementia must also be considered a significant barrier to early diagnosis, impacting not only the attitudes and behaviour of the general public, but also their treatment by clinical professionals. In Belgium for example there is an ongoing national debate on dementia and euthanasia, with one view emerging that suffering from dementia reflects an undignified existence.4 This affects the referral rates by GPs in Belgium and the disclosure of the diagnosis. In 2004 the individual was told of his or her diagnosis in only 44% to 55% of cases.5
It has also been argued that for many GP’s there are sometimes perverse incentives not to diagnose linked to the stigma and discrimination they associate with dementia.6 They may assume for example that the individual may not want their cognitive impairment labelled as dementia, believing a diagnosis will have implications for independence and lifestyle choice of the individual. This could have an impact for example in terms of driving.
However the relationship between dementia and stigma should not be over-emphasised, the health and social care funding systems of Member States also play a significant role. In Spain and Portugal for example, physicians were found to be particularly resistant to providing a diagnosis. This was not accountable to stigma or prejudice though, but rather the anomalies of their respective social care systems. In Portugal avoidance of the dementia label is related to resources, for a diagnosis of dementia may preclude access to nursing home care.7
In many European Member States dementia remains inextricably linked to the process of ageing. Across Europe as a whole, 58% of carers identify the symptoms of dementia as a normal part of the ageing process.8 Higher diagnosis rates can be found in countries where the ‘normal ageing’ explanation is challenged. This has been attributed in particular to the campaigning activities of national Alzheimer’s charities for example in the UK and Netherlands.9 It is important to note rates of diagnosis are dependent on several factors. The range of different systems, for example memory clinics or specialist old age psychiatry services and who carries out the diagnosis and treatment are also hugely influential.

Sally-Marie Bamford: Senior Researcher, ILC-UK, 11 Tufton Street, Westminster, London SW1P 3QB – www.ilcuk.org.uk/ .
1 Phil Hope MP, (July 2009) National Dementia Research Summit.
2 European Commission (July 2009) Communication on a European Initiative on Alzheimer’s disease and other dementias.
3 Alzheimer’s Society (2002) Feeling the Pulse.
4 Vernooij-Dassen M (2005 Recognition and diagnosis of dementia across Europe: from awareness to stigma in International Journal of Geriatric Psychiatry.
5 Lepeleire de (2004) Disclosing the diagnosis of dementia: the performance of Flemish general practitioners.
6 Professor IIiffe, (2009) Dementia dinner and debate, House of Lords.
7 Iliffe S, De Lepeleire J, Van Hout H, Kenny G, Lewis A, Vernooij-Dassen M; DIADEM Group. (2005) Understanding obstacles to the recognition of and response to dementia in different European countries: a modified focus group approach using multinational, multi-disciplinary expert groups. Ageing and Mental Health, Volume 9, Number 1, January 2005, pp. 1-6(6).
8 Bond, J, Stave, C. Sganga, A.; O’connell, B.Stanley, R. L. Inequalities in dementia care across Europe: key findings of the Facing Dementia Survey, International Journal of Clinical Practice, Volume 59, Supplement 146, March 2005, pp. 8-14(7), Blackwell Publishing.
9 Vernooij-Dassen MJ, Moniz-Cook ED, Woods RT, De Lepeleire J, Leuschner A, Zanetti O, de Rotrou J, Kenny G, Franco M, Peters V, Iliffe S. Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. Int J Geriatr Psychiatry. 2005;20: 377-386.
10 Lustman, F (2009) House of Lords dinner debate on dementia.



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