National Dementia Plans
- MP Teresa Caeiro interview
- MPs call for creation of a working group
- Alzheimer Portugal calls for national plan
On 22 October 2010 the Portuguese Parliament approved two resolutions (see downloads below) proposing the recognition of dementia as a national priority and also called for a Dementia National Plan to be drafted. This development followed on from the call made by five Portuguese MPs made at the Alzheimer Portugal conference in October 2009 for a working group for action on dementia to be set up and also a campaign by Alzheimer Portugal to make policy makers aware of the 'pressing need to develop a national Alzheimer's disease plan'. In addition, early this year Alzheimer Portugal drafted a proposed national plan (see download below).
During Alzheimer Portugal’s conference in October 2009, Portuguese MPs pledged their support to develop a Portuguese Alzheimer’s Plan. In this article, Alzheimer Portugal speaks with MP Teresa Caeiro about the challenge dementia and Alzheimer disesase present as well as the action required to address it. (April 2010)
Alzheimer Portugal (AP)- Alzheimer's Disease and other forms of dementia now affect 7.2 million people in Europe. In Portugal there are, an estimated 153,000 people with dementia, 90,000 of whom have Alzheimer's disease. How do you evaluate the response of states to this problem?
Teresa Caeiro (TC) - Mental health, dementia and Alzheimer's disease will certainly be one of the great challenges of the twenty-first century European societies: A challenge that can only be faced with a combination of efforts in different areas such as health, social security and employment. The response of European states has not been consistent, in terms of the speed and style. In Portugal, we need to catch up and deal with the seriousness of the problem and with the political commitment, also with the disease itself and its effects on those people with dementia, their families and society. Unfortunately, it is an area where there are inadequacies at all levels: in access to medical specialty in the public health as well as in the home care to patients and to their families, but also with regard to social facilities which are able to receive these patients.
AP - Given the characteristics of its population - ageing and economic weakness – which, in your view, should be the policy priorities which would ensure that people with dementia and their caregivers are supported? What measures are present in this term?
TC – We must have Alzheimer's disease among the social and public health priorities in Portugal. First, it is necessary to make a realistic assessment of the situation of Alzheimer's disease in Portugal and an epidemiological facts projection in the short, medium and long term. Only then can we properly assess the needs that are unmet and act (politically and socially) accordingly. Next, you need to make this disease a budgetary and legislative priority, channelling funds (directly or indirectly) for the construction of an effective diagnostics, support, monitoring, treatment and care network to patients and their families. It is a priority to create legislation for caregivers, particularly for family caregivers, because the overwhelming majority of people with dementia are increasingly dependent on one or more family members. These, in turn, are dependent on this assistance as it becomes increasingly difficult to reconcile caring with jobs and reduced family budgets. Indeed, it is often the case that, family members are forced to stop working to be caregivers, which may remove the only source of income of the household.
I assume that it is the obligation of both the state and society to work together in this effort and support the families that (intentionally or unintentionally) care for people with dementia. I think there is an urgent need for a specific financial support aimed at helping these caregivers.
AP - What is the role of patient associations and the non-governmental sector?
I cannot imagine a system of social protection without a close and competitive non-governmental sector. The state is responsible to ensure the existence of a non-governmental sector, to be a regulator aware of their activities and of the funding needed to achieve the European social model that we can all be proud of.
Portuguese MPs Tersea Caeiro, Maria Antonia Almeida Santos, Fernando Negrao, Joao Semedo and Bernardino Soares speak at the Portuguese conference "Alzheimer's disease: What policies" in October 2009
Alzheimer Portugal gives an overview of their conference "Alzheimer's disease: What Policies?" held on 29th and 30th of October 2009 at the Calouste Gulbenkian Foundation, in Lisbon.
The quality of the presentations about Alzheimer's disease ensured that the conference “Alzheimer’s disease: What Policies?”, which took place in Portugal last October, was a success. Hosted by Alzheimer Portugal, this conference gave more than 250 people the opportunity to find out more about the current policies in several European countries.
The success of the conference was also due to the attendance of the Portuguese MPs Teresa Caeiro, Maria Antónia Almeida Santos, Fernando Negrão, João Semedo and Bernardino Soares. Alzheimer Portugal were honoured that these MPs, who represented all the Portuguese political parties, had accepted their invitation to support the goals of the Conference: discussing dementia policies.
Maurice O'Connell, President of Alzheimer Europe, and Jean Georges, the Executive Director, reported on the state of dementia in Europe and made a very positive overview of the European dementia movement. Under the leadership of Alzheimer Europe, the movement has made significant progress since the Paris Declaration, signed in 2006. Several European countries have created and are implementing plans, national strategies or significant policies for dementia. The European Commission, the Council and the European Parliament now recognise dementia as a European priority. We were encouraged by the Communication made by the Commission to the Parliament and the European Council about the European Initiative on Alzheimer's disease and other dementias of 22 July2009 and the Commission proposal for a Council Recommendation on measures to combat neurodegenerative diseases, particularly Alzheimer's disease, through a joint research program.
Mary Marshall, Emeritus Professor at the University of Stirling, Scotland, reflected on the wide picture of a disease that knows no borders and spreads around the world, at an disturbing speed.
Professor Charles Scerri, of the Malta Dementia Society, Andrew Chidgey, of the Alzheimer's Society UK, both responsible for the implementation of National Dementia Strategies in their countries, and Federico Palermiti, Head of the Department Social Studies of Fondation Méderic presented, with detail, the different National Plans for Alzheimer Disease.
With his presentation on the Portuguese situation, Dr. Celso Pontes, a Portuguese neurologist and Member of the Alzheimer Portugal Scientific Committee, made it clear that very little is known about dementia in Portugal: How many people are diagnosed? How many people are accompanied by a specialist, treated, and receive non-pharmacological intervention? Where are these people? At home, alone or with their families? In nursery homes or attending day care? Do they have access to home support services? And the caregivers, do they have any help? What are the direct and indirect costs associated with dementia?
In Portugal, given the lack of protection for the estimated 153 000 people with dementia and their caregivers, we were reminded that we must seize the opportunity created by this favorable European context, as well with the work and information gathered and organised by Alzheimer Europe, in projects such as Lawnet or Eurocode.
This demonstrated the need for a National Dementia Plan in Portugal.
Three aspects seem fundamental to a supportive environment for the creation of a National Plan for Dementia.
I – The gatheringing and organising of information in order to obtain a general view of the national situation. We must know before we act"
II – The execution of a nationwide campaign to improve awareness of the symptoms and early signs of dementia, and to combat the stigma associated with the disease, in order to reduce isolation and loneliness.
III – The organisation of a national debate involving all stakeholders - people with dementia, carers, policy makers, social and economic professionals, and the media, in order to clarify the urgent need to develop a national plan of Alzheimer Intervention covering three main lines of action:
a. To improve the quality of life of people with dementia and their caregivers, including issues associated with the pharmacological and non-pharmacological intervention, with social support and facilities through the creation and implementation of specific health and social support policies.
b. To carry out research about the causes, prevention and diagnosis of Alzheimer's disease and gathering of epidemiological data; -
c. To create a legal framework defining the rights of people experiencing disability, including the legal framework of care, intervention and research.
Before a responsive and demanding audience Teresa Caeiro, Maria Antónia Almeida Santos, Fernando Negrão, João Semedo and Bernardino Soares discussed the national situation and the priorities for dementia:
- Alzheimer's disease and other forms of dementia currently affects 7.3 million Europeans, 153, 000 of which are Portuguese, and it is anticipated that with the ageing population, this number will double by 2020;
- This disease is the leading cause of dependence, resulting in a considerable burden for caregivers and the Health Systems and Social Protection;
- It is essential a political commitment in the field of research, prevention, treatment, care and social protection, and the improvement of the legal framework of the Rights of People with Disabilities;
- Alzheimer's disease is a public health and social policy priority.
These MPs have assumed the commitment to propose the creation of a Working Group within the framework of the Parliamentary Health Committee and pledged to promote the discussion and monitoring of the Alzheimer's disease challenge, namely through the improvement of research, prevention, early diagnosis, treatment, access to care and quality of life of people with this disease.
Alzheimer Portugal is deeply grateful to all national and international participants and to the MPs for their support to this initiative, helping to create a more aware, responsive and responsible society.
Alzheimer Portugal calls for the creation of a national dementia strategy
In Portugal, at the moment, there is no Dementia National Plan or Strategy as there is in France, Norway and England for instance. We can say, however, that the first steps towards the establishment of a Portuguese Dementia Strategy are now being made. In October 2009, a group of Portuguese Members of Parliament agreed to propose in the Parliament’s Health Committee to constitute a working group that should contribute to better research, prevention, early diagnosis, treatment, care and quality of life of people with dementia.
Although no Parliamentary discussions have taken place until now, the result of the initiative has been that Alzheimer Portugal has become better known among political decision makers and has moved closer to its aim of being recognised as a reference for Alzheimer’s disease. Indeed, since 1988 we have been promoting the quality of life of people with dementia and their carers. We provide information, training, social and psychological support, day care and home care services specially conceived and developed for people with dementia.
Last May, the Health Minister invited us to a meeting to discuss dementia:
The Continuing Care Service Network Coordinator, Maria Inês Guerreiro, invited us to participate in the conception and implementation of a specific training programme for the Network professionals who care for people with dementia. In fact, as the Health Minister, Ana Jorge, states; “It has been assessed that the increasingly ageing population, and the heavy burden that chronic diseases represent for patients and their families, demands an earlier meeting of the deadlines initially set out. The ongoing reform includes a major investment in human resources, training and capacity building.”[i]
At the 3rd anniversary of the Continuing Care Service Network, the Health Minister declared, “We will prioritise the development of Day and Autonomy Promotion Units for people with Alzheimer’s and also Day Units for Palliative Care, that will allow keeping these people at home for a longer time.”
This means that the Health Minister recognises Alzheimer´s disease as a public health priority, or, at least an issue that deserves her attention, and felt the need for creating specific measures to address what we can call the 21st Century scourge of Alzheimer’s disease.
In fact, the number of people with dementia will double every 20 years yet the number of family carers, who are responsible for 80% of the care, will decrease in the near future because of the ageing of the European population.
Although the Continuing Care Service Network was not initially conceived to include people with dementia, now special day units are being built.
This means that the continuous increase in the number of people with dementia in Portugal is forcing the Government to address specific demands, such as specific training programmes for professional carers.
Finally, the preparations for the National Health Plan from 2011 to 2016 are already under way. Now the public discussion is open and Alzheimer Portugal is making its position known. Our aim is that the dementia priorities will be recognised in this plan and duly implemented in the coming years. In our opinion, the main focus must be on training, specificically training for professionals caring for people with dementia.
These are all good signs. The political decision-makers know that dementia exists. They can no longer ignore the numbers and the resulting social and economic impact. But these signs are not enough.
A National Plan or Strategy is needed. This is clear from the experience of other countries.
Alzheimer Portugal, as a 20-year-old nationwide organisation, assumes, as a mission, to raise awareness of the urgency for a National Alzheimer´s Plan or Strategy.
We may say that, due to the economical and social crises we are now experiencing, it is not a good moment to talk about it.
But, firstly, the number of people with dementia will increase irrespective of such crises.
Secondly, we can see dementia as an opportunity - an opportunity to create new jobs – for carers. This will mean reducing unemployment through the development of new skills and new training programmes, as well as the recognition of specialised care for people with dementia. Also, the setting up of care facilities, as with respite care, day care centres and home care, will create jobs.
Additionally, these new jobs would reduce the financial burden of carers. We know that informal carers receive a much lower pension and may be prone to neglect their own health and find themselves in a worse financial position because of the fact they provide care.
In conclusion: there is no time to lose and there is no excuse for not acting now!
Alzheimer Portugal, August 2010
[i] Public Service Review, European Union, Issue 19, p. 87.
Last Updated: Wednesday 14 March 2012