On 28 September 2021, Alzheimer Portugal organised a debate about a recent study on “The Cost and Burden of Alzheimer Disease in Portugal”, with the support of Biogen. The study was conducted by Professor João Costa from CEMBE – Center for Evidence Based Medicine. CEMBE is a structural unit of the Lisbon School of Medicine.
Starting with the presentation of the study by its author, the debate had as its participants Victor Herdeiro, President of the Executive Board of the Central Administration of the Health System (ACSS), Manuel Gonçalves Pereira, psychiatrist and researcher at Nova Medical School, António Leuschner, President of the Mental Health National Council and coordinator of the Health Strategy for Dementia, and Alzheimer Portugal Vice President, Rosário Zincke. The debate was chaired by Dulce Salzedas, a journalist specialised in health issues.
The study included only Alzheimer’s disease, not other forms of dementia, throughout the year 2018 and only in continental Portugal (i.e. excluding Madeira and the Azores). Alzheimer Portugal reports that the study revealed very strong figures which are extremely important to share and which must imperatively be seen by policy decision makers. “They can no longer ignore the importance of recognising dementia as a public health priority”, said Alzheimer Portugal. According to the study, Alzheimer’s disease is responsible for 7% of the total of the years of life lost by premature death in Portugal. Premature death is responsible for 63% of the disease burden and the total burden associated with Alzheimer’s disease in 2018 was of 122,663 years of healthy life lost due to disability (Disability -adjusted life years DALYs). Concerning costs, Portuguese society spends about EUR 2 billion (corresponding to about 1% of the Portuguese GDP) every year on the disease, mainly for non-medical costs (about EUR 1,8 billion) including informal care (1.1 billion) and social support (551 million).
Regarding informal care costs (54% of the total costs), these were estimated according to the proxy good method that is based on the time spent on caregiving at the labour market prices of a close market substitute, in this case the national minimum wage. This percentage highlights the important role informal carers play in Portuguese society, and it is very clear to Alzheimer Portugal that the legislation that regulates rights and duties and foresees some measures to protect carers are not enough to recognise the value of caring, sometimes provided by neighbours and friends and not only by family members, or by family carers that have to completely leave their professions to care for their loved ones full time.
At the debate, Alzheimer Portugal took the opportunity to ask the President of the Executive Board of the Central Administration of the Health System when the Government will implement the Dementia Health Regional Plans, which was promised in the Portuguese Recovery and Resilience Plan, in the framework of The Mental Health Plan Reform. After some hesitation, he responded, “soon”.
Alzheimer Portugal truly hopes so, as the Plans have been ready since 2019 and must be seen as the priority not only to improve the quality of life of people living with dementia and their carers but also to allow a rational approach based on prevention, early detection, availability of clinical and comprehensive diagnosis, therapeutic intervention at primary care level, hospital and specialised care, and defining a care pathway.
There is no time to lose, insists Alzheimer Portugal, as the number of people living with dementia will not stop growing. Alzheimer Europe’s Dementia in Europe Yearbook 2019 – Estimating the Prevalence of Dementia in Europe estimates that by 2050 there will be 346,905 people living with Alzheimer’s disease or another form of dementia, in Portugal. This number corresponds to 3,82% of the country’s population.
Recognising dementia as a priority is not only an ethical and legal demand - as no one should be left behind - but also a political obligation. Indeed, there is a written commitment from the Government to implement the Dementia Health Regional Plans and the National Health Plan, which states the following goals:
1) Reduce premature mortality (under 70 years old) by 20%
2) Increase the health life expectancy at 65 years old by 30%
3) Reduce non-communicable diseases risk factors.
The right strategy - based on prevention, early diagnosis, and defining a care pathway – would not only fulfil political goals but also reduce costs, stresses Alzheimer Portugal, insisting it will not miss this opportunity to call upon the Portuguese Government to finally recognise dementia as a priority.
