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Netherlands

2012: National Dementia Strategies (diagnosis, treatment and research)

Background information about the National Dementia Strategy

In the past, Alzheimer Nederland (the Dutch Alzheimer Society) initiated and participated in two national programmes to improve dementia care. The first was the National Dementia Programme, a four-year programme (2005-2008). Alzheimer Nederland coordinated with the Ministry of Public Health, Welfare and Sport and the Netherlands Institute for Care and Welfare (Vilans) a programme for regional providers of care, welfare and the treatment of dementia to improve dementia care from a client’s perspective. It was a bottom-up programme. The participation of regional networks of care providers was voluntary. The results were impressive: 90% of the country participated with 206 improvement projects fitting the needs of patients and families. Providers of care, welfare and treatment worked together with volunteers from the Alzheimer Nederland. Alzheimer Nederland collected the wishes and demands of families of patients in 160 focus groups and by means of a survey amongst caregivers (N=1500). Nevertheless, more incentives were necessary to integrate help for people with dementia and their families from the beginning until the end of the dementia. The budget for the first National Dementia programme was EUR 2.82 million.

Therefore, in 2008 the second programme started: ‘Purchasing integrated dementia care’. What was new about this programme was the participation of the national umbrella organisation representing the healthcare insurance companies (ZN) in the Netherlands. The goal was to provide and purchase integrated support including case management. A purchase guide was developed with a description of the “ideal region” for people with dementia and families from the beginning until the end of the dementia, based on the clients’ perspective. ZN made guidelines to finance the integrated care. Care providers who developed integrated dementia care, including case management, received an extra budget. Again, volunteers participated as patients’ advocates, being spokespeople for people with dementia and their families in the region. At the end of the programme (end of 2011) 90% of the country participated in purchasing integrated dementia care. Alzheimer Nederland organised the evaluation (focus groups and questionnaire) of the programme from a client perspective. The annual budget for purchasing integrated care during the four-year programme was around EUR 10 million. For 2013, EUR 15.5 million has been allocated to purchase integrated dementia care.

From January 2011 until May 2012, the national standard for dementia care was developed. This is the first national integral standard on dementia and it includes welfare, care, treatment and housing standards which meet the wishes of patients and their families. It encompasses all professional guidelines, best practises and evidence-based interventions. Alzheimer Nederland was project leader. In total, 28 branch organisations and associations of professionals in dementia care were involved. From 2012, the standard will be used to purchase integrated care in 85 dementia care networks. Case management for people with dementia is a crucial part of the national standard.

In the summer of 2011, Alzheimer Nederland, VUmc Alzheimer Centre and the national umbrella organisation of medical university hospitals (NFU) took the initiative for a new national plan. The new national plan is called the “Delta Plan Dementia”. The name “Delta Plan” was chosen as it reflects the increase in the numbers of people with dementia in a similar way to the expected flood of 1953. After the flood, a national strategy was formed to fight a possible new flood. Embankments along the coast and dikes in river areas were built and great pieces of land were reclaimed.

Status and historical development of the National Dementia Strategy

At the start of the initiative, several national companies were invited to support and take part in the coalition. Rabo Bank, Achmea (the biggest health insurance company) and PGGM (a leading Dutch pension administrator with its roots in the healthcare and social work sector) were the first to join. A first meeting was organised at the Ministry of Health, Welfare and Sports with attendance of three directors (long-term care, treatment and public health) of the ministry. The Delta Plan Dementia was presented with a strong focus on scientific research and two other elements: a national e-health platform for patients, carers and professionals and a national patient registry to improve the quality of diagnostics, treatment and care. The total amount of money requested is EUR 200 million.

After the initial meeting other companies expressed their interest such as Philips, Nutricia, CZ (another health insurance company), KPMG (consultancy), Vital Valley (computer technology) as well as the national confederation of industry and employers (VNO-NCW) and the national organisation of health research and development (ZonMw). They together formed a steering committee which in the past months worked out the plan in terms of a project plan, business case, requested budgets and so on. It was envisaged to present the plan to the Minister in May 2012. However, in April the government fell and new elections were organised for September. The plan will be presented to the minister after the formation of a new government.

Duration of the National Dementia Strategy

The Delta Plan Dementia will last for 8 years. We think it will start after the new government has given its financial commitment for the plan. In December, a meeting with the Minister (Ms Edith Schippers, Labour Party, also minister in the last period) and State Secretary (Mr Martin van Rijn, Socialist Party, former CEO of PGGM) is scheduled. The Minister has declared her interest in the Delta Plan in the parliament. The newly appointed State Secretary was chairman of the steering committee of Alzheimer Nederland’s initiative.

How the National Dementia Strategy is funded

Funding is intended to come both from public sources (government and national research funds) and private sources. Alzheimer Nederland will invest a part of its budget for scientific research. It will draw up a communication and marketing plan to raise funds together with the parties involved in the Delta Plan.

Provisions or procedure for implementing the Strategy

Alzheimer Nederland formed a broad alliance of public and private parties. Umbrella organisations are informed on a regular basis and will be involved in setting up the research programme and developing the e-health platform and national registry. Alzheimer Nederland also involved Vilans (the Netherlands Institute for Care and Welfare) which has access to regional networks of care providers.

Procedure for monitoring progress made in achieving the goals set

Each element of the Delta Plan has a separate project plan and will be organised by the participants in the way which seems best. Each element will be led by a project leader who will be appointed by a steering group. Progress is monitored by the steering group on a monthly basis.

Involvement of the Alzheimer association (and/or people with dementia)

Alzheimer Nederland was one of the parties which took the initiative to develop the plan. The Delta Plan fits completely with the strategic plan of Alzheimer Nederland which was recently set up for the period 2012 to 2015. In the context of the new strategic plan, a research agenda was developed with the involvement of people with dementia, family caregivers, lay people and scientists. The development took three quarters of a year and involved focus groups and interviews. This research agenda will be followed in the Research Programme that is part of the Delta Plan. This serves as an excellent base for the further participation of people with dementia and family caregivers in the research field.
 Alzheimer Nederland has been invited by the other parties to take a leading role in the Delta Plan Dementia.

Alzheimer association’s overall assessment of the National Dementia Strategy

As mentioned, the Delta Plan Dementia fits very well within the strategic plan of Alzheimer Nederland. Alzheimer Nederland’s aim is to spend EUR 20 million on research in 2020 (in 2011 about EUR 2 million was spent. The DPD supports our ambition to find solutions for both the patients of today as well as the patients of the future.

Diagnosis, treatment and research

Issues relating to diagnosis

Which healthcare professionals are responsible for diagnosing dementia

GPs may diagnose dementia but should refer patients to a basic memory clinic in case of comorbidity, behavioural problems, psychiatric problems, severe system problems and/or refusal of care. In general, neurologists and geriatricians diagnose patients in memory clinics assisted by geriatric nurses and/or psychologists. In some cases, referral to a specialist memory clinic is necessary because of the complexity and/or necessity of specific diagnostic equipment.

GPs can charge for double consultation time and diagnostic tests in the case of dementia. Patients must ask for an extended consultation. Such requests are not always granted. There is no further incentive for GPs to improve or increase timely diagnosis.

Type and degree of training of GPs in dementia

GP’s receive almost no professional training in dementia in their basic education. Therefore, the association of GPs has started a programme to train GP’s in the care of frail older people including people with dementia. This will result in a growing number of GPs having a specialisation in the care of frail older people.

GPs have a obligation for continuing education in general to update their knowledge.

Required tests to diagnose dementia

GPs and specialists each have a set of guidelines which are slightly different for each group. The guideline for GPs was recently published (NHG Standard, July 2012). A new guideline for specialists is announced for the end of 2013. Although guidelines are well known, they are not always followed. There is also a national care dementia standard which encompasses all professional guidelines and tries to address inconsistencies between different guidelines. Alzheimer Nederland developed the national care standard which was finished in May 2012. The care standard guides health insurance companies to contract regional dementia care.

Issues relating to medical treatment

The availability of medicines in general

The health insurance system in the Netherlands is a mixture of private and public insurance schemes. In 2006, there was a huge change in the system. Hospital and GP care, drugs and other short-term care are now insured by private insurance companies, within the framework of public rules about acceptance, settlement of bad risks and price. Long-term care is still part of public insurance.

Only pharmaceutical products with a marketing authorisation are added to a positive list by the health ministry.

Products with a reference price are listed in annex 1a. If a reference price cannot be allocated to a product it will be placed in annex 1b. When deciding about the reimbursement of products in annex 1b the therapeutic value of the product is considered. If the therapeutic value of a product is low, it will not be considered eligible for reimbursement. Some drugs in the positive list are classified into annex 2. These drugs are reimbursed only if certain criteria are fulfilled. The criteria could be, for example, that the prescription must be written by a specialist physician. 

The availability of Alzheimer treatments

With the exception of donepezil, AD drugs are available in the Netherlands and are part of the reimbursement system. Since these drugs are on annex 2 of the positive list, certain criteria need to be fulfilled prior to reimbursement. Treatment with acetylcholinesterase inhibitors is for people with MMSE scores between 26 and 10 and memantine for MMSE scores between 14 and 3.

There are no restrictions in the Netherlands for the reimbursement of these treatments for people living alone. Although there are no restrictions in theory for the access of people in nursing homes, Alzheimer Nederland stresses that reimbursement remains problematic, since the cost of treatment would need to be covered by the budgets of the nursing home and may thus be dependent on a positive decision of the home in question.

Conditions surrounding the prescription and reimbursement of AD drugs

GPs and specialists can both make the initial and follow-up prescriptions of AD drugs but the initial prescription would only be reimbursable if made by a specialist.

Prescription and reimbursement

Donepezil

Rivastigmine

Galantamine

Memantine

Available

No

Yes

Yes

Yes

Reimbursed

N/A

Yes

Yes

Yes

Initial drug reimbursed if prescribed by

N/A

Specialist

Specialist

Specialist

Continuing treatment reimbursed if prescribed by

N/A

No restrictions

No restrictions

No restrictions

Required examinations

N/A

Diagnostic protocol

Diagnostic protocol

Diagnostic protocol

MMSE limits

N/A

26-10

26-10

14-3

Issues relating to research

Alzheimer Nederland was founded in 1984 and the statutes laid down provisions to optimise research. However, it took until 2000 to actually allocate money and effort to research. Initially Alzheimer Centres for research were launched in university hospitals, in Maastricht (2000), Amsterdam (2001), Nijmegen (2005) and Rotterdam (2012) respectively. This means that in half of the university hospitals an Alzheimer Centre has been founded. Since 2010, Alzheimer Nederland has been organising a call for proposals. The first call had a focus on diagnostics. In 2011, the theme of the annual call was “psychosocial interventions”. In 2012, the theme was “origins of the disease”. In 2011, Alzheimer Nederland also launched a fellowship programme which enables researchers to travel to other countries and then return and practice what they had learned. Currently, Alzheimer Nederland is the biggest non-profit organisation for research in the field of dementia in the Netherlands.

It is not possible for the State to say how much it spends on dementia research.  Alzheimer Nederland estimates this figure to be around EUR 10 million, but this is for research into brain, cognition and frail older people programmes, not specifically on dementia itself.

In 2011, the Society drew up a common research agenda with patients, carers, scientists and lay people. The same issues were identified by each group: 1. diagnostics, 2. origins of the disease, 3. psychosocial interventions, 4. medical interventions, 5. prevention, and 6. care research. In the context of the JPND initiative, the Society also carried out an inventory on the strengths of dementia research and the results suggest that basic research was not considered as good but research on genetics, imaging and bio-markers, clinical research, and the establishment of a brain bank, psychological interventions and technical innovation (e-health and housing) all ranked as good.

The Delta Plan Dementia is close to the JPND research agenda. Contributions by the government into JPND will be organised with the Delta Plan Dementia. The Netherlands is involved in the EU Joint Programme – Neurodegenerative Disease Research (JPND) and is a collaborator in the Joint Action “Alzheimer Cooperative Valuation in Europe (ALCOVE)”. However, Alzheimer Nederland itself feels it is not involved in the way it should be.

Acknowledgements

Marco Blom, Director Scientific Research

Julie Meerveld, Manager Advocacy

 

 
 

Last Updated: Tuesday 14 May 2013

 

 
  • Acknowledgements

    The above information was published in the 2012 Dementia in Europe Yearbook as part of Alzheimer Europe's 2012 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received from the Alzheimer Europe Foundation for the preparation and publication of its 2012 Yearbook.
  • European Union
 
 

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