**4. Estimation of the burden of carers in Portugal**

It has been estimated that the number of people with dementia in Portugal, in 2012, was 182,526 in a population of less than 10 million people. This number represents about 1.7% of Portuguese population, and it is higher than the EU averages of 1.55% [19] (Alzheimer Europe 2019). Considering that 60–70% of those patients with dementia suffer from Alzheimer's disease, it means that currently there are more than 110,000–128,000 Alzheimer's patients in Portugal. It is estimated that in the next 20 years, the number of Alzheimer's patients in this country will be around 322,000 [9].

The current health expenditure (CHE) in Portugal directed for long-term care (LTC) has two functions, both social and health. Despite the inexistence of the EU average reference and comparing with Sweden which has some well-functioning long-term care system, Portugal presents a low share of expenditure (CHE) in long-term care expenditure for health but a reasonable level for long-term care expenditure for social support (**Figure 5**).

Public aid to informal caregivers in Portugal is in its infant stages, and the formal care is insufficient for the current demand. This national institutional framework pushes nearly all the care of Alzheimer's patients to their families, who have stood for the overwhelming task of taking care of them, even if they do it with affection and love or even if they have no conditions to do so.

#### **4.1 Method for collecting data**

To collect data for Portugal, a questionnaire based on RUD, which includes questions about the informal caregiver concerning their socio-demographic characteristics, health status, received external support, professional status, activities performed and time management, was used [20].

This questionnaire was applied over 5 months, in 2018, in the Neurology Services of the Hospital Centre of the University of Coimbra, Portugal, to informal caregivers of Alzheimer's patients. This study has been approved by the ethical commission of the hospital centre, and participants have signed an informed consent form. Confidentiality and anonymity are guaranteed to participants in this study.

#### **Figure 5.**

*Share of LTC expenditure in total current health expenditure. Note: LTC, long-term care expenditure. Source: Based on Eurostat [hlth\_sha11\_hc] [8].*

The study includes 86 Alzheimer's patients and 97 informal caregivers. The difference in these numbers is due to the fact that some patients have more than one carer.
