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Parallel Session - Dementia policies

Abstracts and presentations

Dementia, disabling conditions, society and political priorities: Lessons learned from disability politics

Ursula Naue, University of Vienna, Austria,
Co-author: Thilo Kroll

In the context of an increasingly ageing society with a growing group of persons diagnosed with different forms of dementia, old- established social and health care policies are no longer appropriate. While policymakers have just started to react to this so-called ‘dementia challenge’, Alzheimer Associations have reacted with developing networks between relevant political actors and through standardising medical data and practices. Also, they have formulated political priorities of the Alzheimer movement. But so far, Alzheimer Associations do not build alliances with other societal groups which have a long tradition in the formulation of political priorities and experience similar forms of marginalisation. Although dementia is viewed by society as a disabling condition in older age, bridging knowledge between these two groups does not take place at the moment. Disability and dementia policies are based upon different presuppositions, but when it comes to participation and inclusion, both groups face the same prejudice – being understood as ‘not normal’ and ‘not healthy’. Obviously, it is important for funding dementia research that different forms of dementia are treated as medical conditions, but at the same time, persons with this diagnosis lose their status of a ‘normal person’, and policies mainly focus on care. Also, to focus primarily on caregivers may divert one’s gaze from the person diagnosed with dementia. Hence, to build on the knowledge and experience of disability groups could not only be helpful to find a way out of this dilemma. As formulated in the ‘Graz Declaration on Disability and Ageing’, it is broadly recognised that many of the disabling conditions for elderly persons are caused by society. Societal perceptions both of dementia and disability are predominantly negative and dismissive. While, for example, persons with intellectual disabilities consequently work on changing this societal gaze on disability (relational matter between society and individual), persons with dementia still represent dependency and loss (individual problem). The aims of this paper are to apply the social model to dementia and to address general and shared, but also individual needs of affected persons, as well as to discuss the challenges and opportunities of bridging know ledge between disability and dementia.

From National Dementia Plan to Local Reality

Maija Juva, Norwegian Alzheimer Association, Norway,
Co-author: Berit A. Holmlimo

In 2007, the Norwegian government launched the Dementia Plan 2015, Making the most of the good days. The Dementia Plan is based upon the recognition that current care services are inadequately developed and adapted for people with dementia. Three main areas are in focus: 1. Day programmes, 2. Living facilities that are better adapted to patient needs, 3. Increased knowledge and skills.

The Norwegian Alzheimer Association believes that the Dementia Plan 2015 has focused upon important and central areas of concern and that it will considerably improve the level of care for people with dementia in Norway if it is put into practice locally. Local governments administer their finances autonomously and determine their own priorities. Dementia care has to compete with schools, daycare, sports & culture, communication, etc. when local political priorities are decided. This is where our work begins. Since 2006, the Norwegian Alzheimer Association has arranged weekend courses for members of local dementia associations all over the country. The programme emphasises two important areas: 1. Legislation and the rights of people with dementia and family carers, 2. Lobbying. In addition to the training we provide to effectively lobby local government, we have also developed a strategy for lobbying the central authorities. An important part of the central lobbying is to point out to government officials and to representatives in the Norwegian Parliament (Stortinget) that we need better legislation and ear-marked funds in order to make sure that Dementia Plan 2015 will be a reality in each and every municipality in Norway.

The role of Alzheimer associations in campaigning for change

Marc Wortmann, Alzheimer’s Disease International, United Kingdom,

This presentation will focus on the lobby of Alzheimer associations around the world to make dementia a national and international health priority. Special attention will be given to associations outside Europe and the way in which several approaches have been spread around the global Alzheimer’s movement.

After years of intense lobbying from Alzheimer’s Australia, the government of Australia decided in 2004 to make dementia a national health priority and to allocate $ 200 million for a five-year plan to stimulate research and improve dementia care. Important success factors were the quality of the collected data, the involvement of all stakeholders from the field and the way leading politicians were made part of the process to develop a plan. The results in Australia inspired the Asia Pacific region to release an Asia Pacific Report on 21 September 2006. This report gave a lot of Alzheimer association access to their governments, often for the first time ever.

Alzheimer Europe was able to start the EuroCoDe project in 2006 to develop a dialogue with the main scientific networks across Europe to reach consensus about prevalence, treatment, interventions, economic costs, risk factors and social support systems. There are several other initiatives in the United States, Canada and Latin America that showed important results.

Alzheimer’s Disease International (ADI) brings together information about campaigns on an ongoing basis and organised two very successful Alzheimer University training courses in January 2006 and July 2007 to share proven approaches and develop new campaignS ADI also started approaching the World Health Organization (WHO) to put dementia on their agenda and make dementia a global health priority. As a first result, the WHO made dementia a priority in its Mental Health Global Action Programme that was release in October 2008. Part of this programme will be the development of a series of intervention packages during 2009 and a roll out of this programme to every Ministry of Health from 2010 on. ADI is involved in the development of these intervention packages.

Epidemiology and disease burden of dementia in Hungary

Katalin Érsek,Corvinus University of Budapest, Hungary,
Co-authors: Krisztián Kárpáti, Tibor Kovács, László Gulácsi

Objectives: To investigate epidemiology, health status, health care utilisation and costs of dementia in Hungary. Method: In 2008, a cross-sectional study of 88 consecutive dementia patients and their care givers from three GP practices and one outpatient setting was conducted involving physicians and nurses; performing the Resource Utilisation in Dementia (RUD), Mini Mental State (MMSE), and health related quality of life European Quality of Life 5 Dimension (EQ-5D) questionnaires. Based on database and prognosis of the Hungarian Central Statistical Office and previous studies from 1998-99, we established the proportion of the demented patients for the examined population and then extrapolated it to the total population. Assigning the disease related costs to the patients we estimated the burden of dementia in Hungary.

Results: Based on a previous survey (2001), the estimated prevalence of dementia in 2008 is for the 50-59, 60-69, 70-79 and above 80 years age-groups are 7%, 29%, 39% and 55%, respectively. That number of people with dementia was 756,000 in 2001 and 917,000 (9% of the total population) in 2008. As for the MMSE categories we can estimate 292,000 patients in the MMSE category 0-19 and 625, 000 in MMSE 20-26 group in 2008. In our cross-sectional survey (2008), 62.5% of the patients had Alzheimer’s disease. The average direct cost per patient was EUR 278 (sd. 532), while the indirect cost per patient amounted to EUR 52 (sd. 187). The average direct cost for the 65-75, the 75-85 and the 85+ age groups were the following: EUR160 (for MMSE groups ‘0-18’ is EUR 223, ‘19-24’ is EUR 89), EUR 283 (for MMSE ‘0-18’ is EUR 399, ’19-24’ is EUR144, ’25-30’ is EUR 52) and EUR 419 (for MMSE ‘0-18’ is EUR 565, ’19-24’ is EUR 257), respectively. At national level, the estimated total direct cost of dementia in 2008 was EUR 255 million (0.25% of the GDP), furthermore EUR 48 million indirect cost (0.05% of GDP).

The changing economic environment of Alzheimer’s disease in France

Paul-Ariel Kenigsberg, Fondation Médéric Alzheimer, France,

France will implement its new Alzheimer plan in a rapidly changing institutional and financial environment. As most policies are currently being discussed, there is still a great uncertainty about the exact measures that will eventually be implemented, in a context of severe public deficits, further aggravated by the economic crisis.

On an institutional perspective, healthcare and social care will be governed at a regional level by new regional health agencies. Precise limitations for social care still need to be defined. Long-term care will be considered as a new, specific risk for social security, to be administered by a new, specific agency. On a financial perspective, several challenges remain. For healthcare, dementia is recognised as a chronic disease, being 100% covered by the national health insurance system. However, sustainability of this system is challenged by its fast growth (+8% in the number of people with dementia between 2006 and 2007, reflecting a better access to diagnosis and care). For long-term care, a major issue is how to set a proper balance between public and private financing (including revenue, taxes, estate and long-term care insurance). Government and families are not satisfied with the level of out-of-pocket expenses for long-term care. Most people in institutions have an average income of EUR 1,000-1,200 per month, to cover an average cost of EUR 1,500 per month. Several allowances (social, autonomy, housing, tax incentives) overlap each other, and middle income classes do not benefit greatly from this system. The government is considering merging the different allowances into a unique, income-based, degressive one. A fierce public debate has emerged about autonomy allowance to be recovered on estate by local governments after beneficiary’s death, transferring the financial burden to the next generations. A proposed scheme would offer the choice, either to have access to public allowances recovered on estate, or no recovery on estate but no public allowance.

Concerning the Alzheimer plan 2008-2012 itself, financial resources will be drawn from expected savings by national health insurance, through patient co-payment and lower reimbursement of drugs, paramedical interventions and patient transportation. Resources should start with EUR 300 M in 2008, to reach EUR 500 M in 2012.



Last Updated: Wednesday 21 October 2009