Denmark’s National Dementia Strategy

While it is great that Denmark has actively worked on developing a National Dementia Strategy, there are a few issues I am concerned about.

The first, is that the strategy ran for three years, from 2011-2014. As far as I can tell to date, there is no new version of the National Dementia Strategy. After some digging, I did find that Demensalliancen has set forth some goals in a national dementia plan through 2025. These 5 goals are given at the end of this post.

The second is that there was/is no formal plan set up to monitor and evaluate the goals set forth by the plan. This is quite the problem – and what’s the point of spending time on developing these recommendations if no one is going to follow up to see if they have been set in place and if and how they work? Dansk Folkeparti (Danish People’s Pary) and Kristendemokraterne (Christian Democrats) together with satspuljeaftalen (social reserve fund) had set aside around 30 million kroner (over $4.5 million USD) towards implementing these recommendations. I find it very hard to believe that no one pushed for having some type of evaluation to see if the investment worked.

Thirdly, only a CT scan is named as the required tool to diagnose dementias. It is surprising that standardized and well-accepted tools such as the MMSE and MoCA are not part of the required tools used in diagnosis.

Fourth, is the issue of research and finances allocated for this. The National Strategy decided to allocate money to the National Knowledge Center for Dementia (Nationalt Videnscenter for Demens). This center carries out research as well as professional courses and conferences. While this sounds good, it is quite limited. I was doing my PhD on technologies and quality of life in dementia care here in Denmark from 2009-2014 and did not receive any funding allocation from the National Strategy, nor has anyone attempted to contact me regarding the National Strategy. While that is fine, the part that really irks me, is that the Nationalt Videnscenter for Demens seems to be quite the closed group. I was in contact with one of their neuropsychologists during my PhD regarding the assessments we used in our study (MMSE and MoCA), but have not been able to get in contact with him again since about 2010. Furthermore, after finishing my PhD, I have tried to contact the Nationalt Videnscenter for Demens multiple times to inquire about their research and working there with them. The most response I have received is an email saying that, no, I couldn’t call to talk with them about this. This is quite frustrating for me, as they seem to be the national authority on dementia here in Denmark, yet seem to have no interest in even meeting with the one gerontologist in the country, who is also the only person in the country with a PhD in welfare technologies and quality of life in dementia care. So, most of the research money is tied up in the Center, and they don’t seem interested in taking me on as a new researcher. Furthermore, I tried to join Dementia Days 2015 this past May, which the Nationalt Videnscenter hosts here in Copenhagen, and found that there is no discount for unemployed dementia professionals and there was not even availability to volunteer at the conference. With tickets costing $380 at the early-bird rate, it was outside of my budget. Additionally, with individual courses from the Center costing from $100-$1000, it is simply unrealistic for me, as an unemployed dementia specialist, to attend.

However, despite my griping ;), the 14 recommendations set forth by the National Dementia Strategy are quite good. It would just be a bit better if there had been some plan to evaluate if and how they were implemented and what the effects were. You can find the entire plan (in Danish) here.

7 areas and 14 recommendations of the National Dementia Strategy in Denmark:

  1. Organizing and collaboration
    1. The working group recommends that all regions prioritize the use of a course program as the framework for dementia efforts and that course programs involve and continue the good experiences from cooperation models.
  2. Diagnostics
    1. The working group recommends that the National Board of Health prepared interdisciplinary clinical guidelines for assessment, treatment and control of dementia.
    2. The working group recommends that the possibility of the spread of the regional clinical data on dementia for all regions included in the analysis of clinical quality databases.
  3. Professional social efforts
    1. The working group recommends greater canvassed and gather knowledge about the use of different social work interventions, and that there is an increased systematic coordination experience with interventions.
    2. The working group recommends a strong focus on cross-cutting and binding cooperation the development and dissemination of welfare technology of dementia, including in auspices of the ABT-Fund (now called the Fund for Welfare Technology) and other contexts.
    3. The working group recommends the implementation methodology development and testing in compared to the professional and organizational effort for people with dementia with severe behavioral disorders.
  4. Law and dementia
    1. The working group recommends that awareness of the possibility of formulating a care testament disseminated.
    2. The working group recommends that local, regional and state focus on ensuring clear communication of the potential for unauthorized use of force against persons with dementia.
    3. The working group recommends that it be considered to be related to health law better possibilities for the treatment of permanently legally incompetent patients including people with dementia in word or action expressing opposition to the treatment, and which is not itself able to foresee the consequences of resistance.
  5. Collaboration with care partners and families
    1. The working group recommends that if a detailed study of relatives need with regard to relief and relief to assist municipalities in the prioritization and planning of the effort against relatives.
    2. The working group recommends that the future focus on promoting partnerships between local authorities and voluntary organizations for the development and improvement of day and respite in dementia.
  6. Education
    1. The working group recommends that both local authorities and regions continuously focuses on to ensure a more targeted and strategic use of continuing education in dementia, including cooperative further education, which transcends employees in hospitals, general practice and municipalities.
  7. Research and information
    1. The working group recommends that the priority is to continue the National Knowledge Center for Dementia beyond 2011.
    2. The working group recommends the implementation of an information campaign on dementia.

Background information about the National Dementia Strategy

Status and historical development of the National Dementia Strategy

In 2009, work was started under the auspices of the Ministry for Social Security and the Ministry for Health and Internal Affairs with the aim of establishing how people with dementia were treated both medically and socially.

A working group was set up by the Ministries and there was participation from “Danish Regions” (which are responsible for the hospital sector and GPs), and “Danish municipalities (KL)” which are responsible for social care. The Finance Ministry also participated in this group.

Several meetings were held in smaller groups to describe the field as thoroughly as possible and to find out what the obstacles are for the future development in this field.

This work resulted in 14 recommendations, which were put forward to the Danish Parliament in December 2010 and agreed on as focus points for the following years.

Duration of the National Dementia Strategy

The National Dementia Strategy runs from 2011 to 2014.

How the National Dementia Strategy is funded

A total of approximately Euro 4.1 million was allocated to the National Dementia Strategy.

Provisions or procedure for implementing the Strategy

The Plan has recommendations in many fields as indicated by the participation of three different ministries and other stakeholders. Each is responsible for the implementation of different parts of the strategy.

Procedure for monitoring progress made in achieving the goals set

There is no formal procedure to monitor the progress of the plan in achieving the goals set.

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

The Danish Alzheimer Association was involved in the drafting of the 14 recommendations mentioned above. However, in 2010, there was a conference on creativity in awareness raising campaigns which was inspiring but the Danish association was not invited to take part in the drafting of such campaigns.  This was not part of the National Dementia Strategy as it took place before the Strategy. A new campaign is being organised as part of the Strategy but it has not yet been implemented.

Alzheimer association’s overall assessment of the National Dementia Strategy

The Alzheimer Association was involved in discussions about patients’ rights and support for family carers such as Alzheimer cafés and respite care in care homes and at home.

Timely diagnosis in the National Dementia Strategy

Work is in progress under the auspices of the Danish National Health Board to issue “National clinical guidelines for Dementia”. The guidelines will cover the issue of establishing the diagnosis. Two basic questions will be addressed: 1. Does this patient have cognitive problems (and if so) 2. what is the underlying cause?

The relevant diagnostic procedures will be described. A group of professionals will finish their work on this within a few months. The Danish Alzheimer Association is represented in the group.

The guidelines will serve as “best practice” for all the hospitals involved in diagnosing and treating people with dementia. All hospitals are expected to comply with the guidelines.

Which healthcare professionals are responsible for diagnosing dementia

In order to be refunded for AD drugs, people with suspected dementia must have a CT scan which is carried out by a specialist (a radiologist). In order to see the specialist, they must first consult a GP which means that GPs are an essential part of the diagnostic process. Sometimes, older people are diagnosed with dementia without the diagnostic processes described in the clinical guidelines having been followed. This may happen, for example, when the GP thinks that nothing can be gained from medical treatment.

There are also dementia coordinators and nurses who are employed by local communities and are responsible for ensuring that people with dementia receive the support they need. Each locality has at least one dementia coordinator.

GPs do not have a fixed consultation time but most have consultation modules of 10 minutes. Some allow patients to book a block of two modules (i.e. one after the other). However, GPs would only be paid for one consultation. They would receive extra payment for carrying out an MMSE and for having consultations with the patient’s relatives.

Type and degree of training of GPs in dementia

The amount and content of training in dementia which GPs receive as part of their professional training to become a GP differs from one faculty to the next. Also, dementia is part of the curriculum for diseases in old age. It is therefore not possible to calculate the exact number of hours as such teaching is part of that for other subjects.

In Copenhagen, for example, dementia is part of the curriculum in neurology, which is compulsory for all medical students. All students have to attend to a two hour lecture on dementia. This is followed by 1 month in a neurological department where bedside education in dementia can be given, either in the ward or in an outpatient clinic.

In Aarhus, a one-hour lecture in dementia is provided, followed by two weeks in a neurological department including one day in the outpatient clinic.

In Odense, there is a two-hour lecture in dementia, followed by two or three hours towards the end of the study.

Postgraduate education is not compulsory for Danish GPs. However, the Danish Association of General Practitioners (DSAM) has produced an E-learning programme in dementia which doctors are free to use.

Required tests to diagnose dementia

A CT scan must be carried out and assessed by a specialist.

Issues related to medical treatment in the National Dementia Strategy

The issue of medical treatment will be part of the clinical guidelines. There will be recommendations on the appropriate medical treatment for the different types of dementia.

Another workgroup under the Ministry of Social Security is trying to find ways to improve the treatment of people with dementia who are difficult to treat because of BPSD. This work will probably tackle the issue of how, as far as possible, to avoid the use of psychotropic drugs.

The availability of medicines in general

In Denmark, medicines on a special list (essentially all prescription medicines) are covered up to a certain degree depending on the overall total expenditure on medicines of a patient during a year.

If the total expenditure on medicines in a year does not exceed DKK 890, the patient covers 100% of the drug costs.

For total expenditure on medicines of between DKK 890 and DKK 1,450, the patient covers 50% of the costs.

For total expenditure on medicines of between DKK 1,450 and DKK 3,130, the patient covers 25% of the costs.

For total medicines expenditure above DKK 3,130, the patient covers 15% of the costs.

Nevertheless, for cases where there is a well-documented need for extensive and permanent treatment, the reimbursement rate can go up to 100% of the part of the total co-payment which is in excess of DKK 3,655 (approx. EUR 492).

Finally, in special cases the health service can contribute to medicines not on the list or contribute fully to medicines for people who are dying[1].

The availability of Alzheimer treatments

All AD drugs are available in Denmark and are part of the reimbursement system. Reimbursement is dependent on prior authorisation by the Danish Medicines Agency according to the following procedure.

Conditions surrounding the prescription and reimbursement of AD drugs

An application for reimbursement has to be sent to the Danish Medicines Agency and any doctor can apply for reimbursement for a patient. Nevertheless, reimbursement is only granted if a specialist in neurology, psychiatry or geriatrics has made the diagnosis.

For patients with mild to moderate dementia a CT (or MR scan) of the brain has to be performed first. The physician also has to state that causes other than Alzheimer’s disease are excluded. The system does not provide upper or lower MMSE limits for treatment with different AD drugs, but reimbursement is dependent on a clinical grading. Reimbursement for donepezil, rivastigmine and galantamine is only granted to patients in mild to moderate stages and memantine to patients in moderate to severe stages.

The application has to be renewed every 12 to 15 months. Renewal of reimbursement of memantine depends on a statement by the physician that a continuous effect in the individual patient is still observed. There are no restrictions as to the access of people living alone or in nursing homes to available AD treatments.

Prescription and reimbursement

Donepezil

Rivastigmine

Galantamine

Memantine

Available

Yes

Yes

Yes

Yes

Reimbursed

Yes

Yes

Yes

Yes

Initial drug reimbursed if prescribed by

Specialist

Specialist

Specialist

Specialist

Continuing treatment reimbursed if prescribed by

No restrictions

No restrictions

No restrictions

No restrictions

Required examinations

Diagnostic protocol

Diagnostic protocol Diagnostic protocol Diagnostic protocol

MMSE Limits

None

None

None

None

Issues relating to research

The issue of research is only very briefly addressed in the National Dementia Strategy. However, it was decided to allocate money for “National Knowledge Centre for Dementia” which is initiating scientific research, both in the clinical field and in basic science subjects. At the same time, the Centre runs a range of courses for doctors, nurses, carers and other people with an interest in dementia.

The National Knowledge Centre has set up a network between all memory clinics in Denmark. Jointly they should have the capacity to carry out investigative research. A big project has started known as “ADEX” which is about exercise in people who have been recently diagnosed with dementia but who are still in good health. It is difficult to estimate how much money the government allocates to dementia research as The Knowledge Centre encompasses more than dementia research.

Denmark has a bio-bank and there are a lot of projects running in the psychosocial field. These projects face the same challenges as in other countries in that often, once they are completed, nothing is done with them. In order to prevent the projects just “disappearing”, the dementia strategy includes a provision that the Ministry of Social Security should collect all the information from these projects in order to establish good practices and to try to make the results available.

In Denmark, everyone has a number which consists of their birthdate and four digits. It is unique for each person and everyone must have one. This enables a diagnostic registry to be kept whereby each diagnosis is registered in a central register. Requests can be made for specific searches to be made (e.g. for the number of people diagnosed with dementia). The last four numbers are erased for anonymity.

Denmark is involved in the EU Joint Programme – Neurodegenerative Disease Research (JPND) but not in the Joint Action “Alzheimer Cooperative Valuation in Europe (ALCOVE)”. It is a prominent partner in the JPND project about biomarkers.

There are some Alzheimer research funds from a special fund called “The Alzheimer Research Fund” but these are very small and just cover the costs of a few PhD projects or contribute to them. The fund should be used to promote new PhD students and recruit new PhD students for future work.  The PhD projects running at the moment include 1. Downs syndrome and Alzheimer’s disease, and 2. Dementia and pain. There was a study on ethnic minorities which resulted in an approved thesis.

Acknowledgements

Anne Arndal, Chair, Danish Alzheimer Association

[1] European Commission (2012): MISSOC – Mutual information system on social protection : Social protection in the Member States of the European Union, of the European Economic Area and in Switzerland : Comparative tables

The Dementia Alliance National goals for 2025

To achieve the 2025 goals, there is a need for a coherent national effort to ensure the coordination and quality of efforts for dementia patients across the disease, specialties, and sectors. Denmark has had a national action plan for dementia effort in the period 2010-2014, and there are several areas where there has been significant progress. All regions developed course programs and health agreements of dementia efforts, created increased knowledge about both the medical and social intervention for people with dementia, and there is increased focus on the relatives’ challenges and the importance of their efforts. But we are far from the end goal.

We recognize the improvements that have happened – but dementia is, despite this, still a tremendous social problem because the demographic change is increasingly challenging. Therefore, it is necessary with a new, ambitious national effort to strengthen and accelerate the improvements, so that Denmark can really be a pioneer in dementia. Based on the necessary 2025 goals, the Dementia Alliance has identified a number of areas that can be initiated now, and in interaction with other initiatives in dementia, can ensure a society where no one is alone with dementia!

  1. Better disease course for people with dementia
    1. Development of investigation capacity and national monitoring, and ensuring the quality of dementia assessment, treatment, and care of people with dementia across the disease, specialties, and sectors
    2. Equal opportunity for timely and appropriate rehabilitation of all people with dementia, tailored to the individual and throughout the course of the disease
    3. Strengthening the health care efforts at care centers:  Staff 24 hours a day at care centers and at least two employees with a health professional. Permanent affiliated doctors at all care centers
    4. Dementia-friendly environments at all hospitals and special treatment for people with dementia who also have other diseases
  2. Better support for dementia patients and relatives
    1. Increased focus on targeted training and knowledge-based advice to people with dementia and their caregivers
    2. Multiple offers for physical activity, meaningful cognitive stimulation, and socially inclusive communities for people with dementia and their caregivers
    3. Better opportunity for respite and relief to relatives of persons with dementia both outside the home and within the home
    4. The same offer of help for individual transport for people with dementia as for people with physical disabilities
    5. Faster case processing in legal guardian cases
    6. Accompaniment scheme for people with dementia who are older than 65 years
    7. Recognition of Alzheimer’s and other progressive dementias as critical illnesses
    8. National campaign to reach at least 100,000 dementia friends by 2020
    9. Better opportunities for working families who have greater care tasks
  3. More dementia-appropriate housing
    1. More dementia-appropriate assisted living facilities
    2. Dementia-appropriate and dementia-secure requirements for new and existing care homes
    3. All nursing homes in 2025 must meet accreditation standards, which also includes requirements for residential environments
  4. Skill enhancement for staff
    1. All employees who work with people with dementia have knowledge about dementia and participation in appropriate and ongoing training in dementia
    2. Increased level of competences and specialized knowledge of dementia care centers, home care, and home nursing
  5. More information, research and prevention
    1. National research program in risk reduction, prevention and better treatment and care of people with dementia
    2. National Knowledge Center for Dementia in the finance law
    3. National awareness program about the opportunity and the benefits of early detection and investigation of possible dementia
    4. Study of the importance of employees working for the well-being, care, and treatment of people with dementia
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3 thoughts on “Denmark’s National Dementia Strategy

  1. Pingback: Webinar on bridging the dementia divide | Doctor Dementia and the Dementia Adventure

  2. Pingback: Dementia and Denmark’s 2015 election | Doctor Dementia and the Dementia Adventure

  3. Pingback: Disse mål skal nås inden 2025 | Doctor Dementia and the Dementia Adventure

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