Our opinion on ...
This position was adopted by the members of Alzheimer Europe on 21 December 2007.
The present paper constitutes the position of Alzheimer Europe and its national member organisations on the availability of anti-dementia drugs and their reimbursement under national health systems.
This position reflects the current state of the art with regard to the treatment of Alzheimer's disease. Alzheimer Europe may revise this position as new scientific information becomes available.
Alzheimer Europe recognises that not all patients will benefit from the available treatments, but believes that patients should have the opportunity to try these drugs which should be made available to them under national health systems for the following reasons:
- Enough clinical evidence exists to support the use of anti-dementia drugs since clinical trials have shown them to be effective not only in improving memory, but also for beneficial effects on behaviour and activities of daily living.
- This clinical data on the effectiveness of anti-dementia drugs is supported by testimonies of great numbers of people with dementia and their carers.
- Cost-effectiveness models fail to duly take into account effects on quality of life of carers of people with Alzheimer's disease.
- The existence of anti-dementia drugs has contributed to the development of dementia care through an expansion of memory clinics and other specialised services offering early diagnosis, advice and support for people with dementia and their carers.
- The discontinued prescription of anti-dementia drugs would take away one of the main reasons for people coming forward for an early diagnosis of their condition who would therefore no longer benefit from other significant advantages of an early diagnosis.
- European citizens should have equal rights to protection and access to health care regardless of their country of residence.
Alzheimer Europe is therefore convinced that governments and regulators should not further restrict the access to anti-dementia drugs. Treatment should be offered as one part of a care package taking into account the various needs of people with dementia and their carers and anti-dementia drugs should be made available under national reimbursement systems for people with Alzheimer's disease in all Member States of the European Union. Doctors should be encouraged to discuss the likely benefits and side effects with people with Alzheimer's disease and their carers in a realistic way without raising false hopes.
Alzheimer Europe position on anti-dementia drugs
Below, Alzheimer Europe outlines its views on the existing treatment options for people with Alzheimer’s disease which support their continued use.
The efficacy of anti-dementia drugs is supported by clinical evidence
There is a large body of published scientific data on the clinical effectiveness of the four drugs available for the treatment of Alzheimer’s disease. These drugs have been shown to have significant, measurable and positive effects for people with dementia.
In particular, reviews carried out by the Cochrane collaboration confirm this efficacy:
- For donepezil (Aricept), the Cochrane review finds that "Clinical efficacy is confirmed" 
- For galantamine (Reminyl), the Cochrane review "shows consistent positive effects for galantamine" .
- For rivastigmine (Exelon), the Cochrane review states that it "appears to be beneficial for people with mild to moderate Alzheimer's disease" .
- For memantine (Ebixa), the Cochrane review concludes that "there is a beneficial effect [...] for patients with Alzheimer's disease" .
Existing guidelines of some professional organisations, such as the American Academy of Neurology therefore recommend that "Cholinesterase inhibitors should be considered in patients with mild to moderate AD"; as a standard in its practice guideline .
The efficacy of anti-dementia drugs is supported by consumer evidence
The effectiveness of anti-dementia drugs is supported by testimonies and reports by carers collected by a number of carers' associations.
In particular, two surveys carried out by the Alzheimer's Society  showed that between 73% to 76% of respondents replied positively to the question: "When taking everything into consideration, do you feel that the drug treatment you have received worked?"
Asked in an open question about the benefits of treatment, the respondents cited amongst other the following:
- Slowing or stabilisation of illness,
- person with Alzheimer's disease is happier, brighter, more aware or more active,
- Improvement or help with memory loss,
- Less aggression,
- Increase in independence,
- Improved conversation, speech,
- Less confusion,
- Better quality of life,
Cost-effectiveness models are inadequate for neuro-degenerative diseases such as Alzheimer's disease
It is recognised that the cost of dementia is high in terms of both public and private resources, yet the real cost to society of neuro-degenerative diseases is more difficult to assess. A recent comparison of socio-economic studies of brain diseases thus found that "The cost of care for patients with dementia can be measured by collection of empirical data. The cost due to dementia, however, cannot be measured directly" 
Similarly, the Alzheimer's Society warns against using traditional socio-economic evaluations, since "conventional pharmacoeconomic evaluations cannot be applied to drug therapies for dementia. [...] many of the benefits that a treatment may bring affect indirect costs through reduced carer burden and an increase in a person's quality of life. These are outcomes that are not easily amenable to cost-benefit analysis." 
The effects of anti-dementia drugs on development of dementia care
The introduction of anti-dementia drugs has been accompanied by a number of other positive developments which could be negatively affected by the decision of regulators and governments to no longer prescribe anti-dementia drugs within national reimbursement schemes.
Jim Jackson, Chief Executive of Alzheimer Scotland - Action on Dementia states that "These drug treatments have led to diagnostic services being improved and recognition that better services throughout the illness are required" and fears that changing reimbursement systems "would take us back to a time where people with dementia and their families were ignored and left to cope as best as they could."
Benefits of early diagnosis
The availability of treatment is undoubtedly one of the reasons why people with Alzheimer's disease will seek a diagnosis when confronted with the early symptoms of dementia. Taking away this motivation may lead to great numbers of people with Alzheimer's disease no longer actively seeking a diagnosis.
Similarly, informing people about a diagnosis of Alzheimer's disease is a process considered to be difficult by medical professionals. If medical professionals are no longer able to prescribe treatment, they may be even more reluctant in sharing the diagnosis with people with dementia and their carers.
Alzheimer Europe and its member organisations campaign for the right of people with dementia to be informed about their diagnosis and fear that reimbursement restrictions would negatively impact the growing trend of informing people. Such disclosure does not only open the door to possible drug treatments, but also to a wealth of other information and support services.
Furthermore, an early diagnosis allows people with dementia to take a more active part in decisions affecting their future life through the appointment of health care proxies or the writing of advance directives.
Stigma and ageist prejudices
People with Alzheimer's disease and their carers report a high degree of stigma still attached to the disease, which may result in social exclusion and isolation. Although Alzheimer's disease does not only affect older people, age is the main risk factor for the disease.
Attitudes towards older people are often ageist and they are viewed as unproductive members of society. This is exacerbated by the fact that memory loss is still often considered as a normal result of ageing rather than as a symptom of a disease.
These ageist prejudices also seem to exist within the medical profession and there is anecdotal evidence that doctors are less inclined to start treatments for older persons than for younger persons with the same condition.
Equality of access to care and treatment
As a European umbrella organisation of national Alzheimer associations, Alzheimer Europe campaigns for equal access of European citizens to health care services and treatment options. In a survey of 31 reimbursement systems, Alzheimer Europe found only three countries (Estonia, Lithuania and Malta) in which cholinesterase inhibitors were not covered under any circumstances under national health systems.
Based on the arguments described above, Alzheimer Europe is convinced that governments and regulators should not further restrict the access to anti-Alzheimer's drugs.
Treatment should be offered as one part of a care package taking into account the various needs of people with dementia and their carers and the existing anti-dementia drugs should be made available under national reimbursement systems for people with Alzheime's disease.
Doctors should discuss the likely benefits and side effects with people with Alzheimer’s disease and their carers in a realistic way without raising false hopes.
This position was adopted by the members of Alzheimer Europe on 21 December 2007.
 Birks J., Harvey R., Donepezil for dementia due to Alzheimer's disease (Cochrane Review) in The Cochrane Library, Issue 1, 2004
 Olin J., Schneider L., Galantamine for dementia due to Alzheimer's disease (Cochrane Review) in The Cochrane Library, Issue 1, 2004
 Birks J., Grinley Evans J., Iakovidou V., Tsolaki M., Rivastigmine for Alzheimer's disease (Cochrane Review) in The Cochrane Library, Issue 1, 2004
 Areosa Sastre A., Sherriff F., Memantine for dementia (Cochrane Review) in The Cochrane Library, Issue 1, 2004
 Practice parameter: Management of dementia (an evidence-based review) Report of the Quality Standards Subcommittee of the American Academy of Neurology R.S. Doody, MD, PhD; J.C. Stevens, MD; C. Beck, RN, PhD; R.M. Dubinsky, MD; J.A. Kaye, MD; L. Gwyther, MSW; R.C. Mohs, PhD; L.J. Thal, MD; P.J. Whitehouse, MD, PhD; S.T. DeKosky, MD; and J.L. Cummings, MD in Neurology (2001) (Please note that this guideline was published in 2001 and predates most of the clinical data for memantine)
 Alzheimer's Society: Drugs for the treatment of Alzheimer's disease, Submission to the National Institute of Clinical Excellence (June 2004), Appendix IV : Results of the questionnaire survey completed in January 2004
 Jönsson L., Economic evidence in dementia: a review in A review of European studies on the economic burden of brain diseases;, The European Journal of Health Economics, Volume 5, Supplement 1, October 2004
 Alzheimer's Society: NICE submission, op. cit.
Last Updated: Wednesday 15 July 2009