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The European voice for informal carers

GERMANY

Towards carer-friendly societies
Demographic background

In the period 2013-2060, the share of dependents in Portugal is set to increase from 8.5% to 13.4% of the total population, an increase of 57%. This is well above the EU-average increase of 36%. From 0.89 million residents living with strong limitations due to health problems in 2013, an increase of 57% is envisaged until 2060 to 1.1 million. Over the same period, the old age dependency ratio measured as 65+ as percentage of the 20-64-year-olds will rise from 32.0% (EU-28: 29.9%) to all of 69.3% (EU-28: 55.3%).

Life expectancy for men and women at age 65 is projected to rise from 17.1/20.4 years (EU-27: 17.2/20.7) in 2010 to 22.1/25.1 years (EU-27: 22.4/25.6) in 2060.

From 2005 to 2012 healthy life expectancy for men and women rose by 1.3 and 1.1 years, respectively.

Under an assumption of no policy change the Ageing Report scenario suggests that public expenditure as share of GDP would rise from 0.5% to 1.4% (EU-27: 1.6%-3.1%) by 2070. The impact of a progressive shift from the informal to the formal sector of care in Portugal would entail an estimated increase by 458% in the share of GDP devoted to public expenditure on long-term care (128% on average for the EU27).

Current Long-term care provision

Long-term care is delivered both by formal and informal providers. For many in the country though, informal care delivered by family members (mainly women) and neighbours at home or care within non-specialised residential institutions for the elderly remain the only available options.

The National Network for Integrated Continuous Care (Rede Nacional de Cuidados Continuados Integrados – RNCCI) is the main body responsible for the provision of formal LTC, integrating different levels of the health and social services. The expansion of the RNCCI services has entailed an increase in the number of places available, even though significant imbalances between institutional and homecare services, as well as important regional asymmetries continue to exist. State provision of community care services in Portugal is indeed seen as scarce, and overall access rates to RNCCI services are low throughout the country. Affordability also remains an issue, as publicly-funded LTC is limited to the poorest parts of the population and Portugal is the OECD country with the highest share of out-of-pocket funding for LTC.

Minimum standards within accreditation procedures allow to monitor the quality of services of formal LTC providers. However, healthcare assistants are usually poorly educated and trained. Besides, while job opportunities in the field exist, working conditions (status and remuneration) are far from being attractive.

While efforts have been made in the last few years to improve the coordination and integration of existing LTC schemes and actor, concrete steps towards technological innovation and opportunities to increase the value for money in LTC still seem to be lacking.

The LTC system in Portugal aims to provide humane, qualified and comprehensive care in a timely and personalised manner, via the creation of community services throughout the country. These principles are emphasised in the legislation that underpins RNCCI, as is the promotion of more equitable access to care. The focus is therefore on the response to growing social and demographic challenges: e.g. population ageing; the heterogeneous nature of social circumstances among the elderly; the prevalence of chronic incapacitating illnesses; as well as the decreasing availability of informal care. Both the health and the social security systems are involved in addressing these challenges.

Since 2016, new developments have occurred in the areas of mental health and palliative care. In June 2016, the strategic plan for the development of palliative care 2017-2018 (CNCP, 2016) was launched. In February 2017 the government announced the first 25 pilot projects, which were expected to create 366 places (i.e. about 20% of needs). The strategies defined for the implementation of RNCCI build on strong coordination between the different levels of health services, and between these and local/regional social services. Non-profit organisations and the private sector are also important partners/players in the programme.

The RNCCI has a specific financing model based on the types of services provided, which may include funding from both the Ministry of Health and the Ministry for Solidarity, Employment and Social Security, as well as from users themselves through user fees. The RNCCI comprises both public and private not-for-profit units (funded by the state). It provides three main types of health and social support care services which should provide a continuum of formal care, taking place in different types of units: institutional care services (convalescence, medium-term care, LTC and palliative care units); hospital services (intra-hospital palliative care support teams and specialised patient discharge teams); and home care services (integrated continued care teams and community teams for palliative support care). Patients must be referred by a hospital or health centre, following an assessment by the local coordination teams (ECL) of the RNCCI and/or by the hospital discharge management teams. The assessment is made in accordance with a set of criteria that include the degree of dependency and/or the presence of a serious illness or injury. In parallel, there are also private for-profit services providing LTC operating independently.

The assessment of the implementation of the 2016-2019 development plan for the RNCCI shows a positive quantitative evolution overall but some imbalances regarding the provision of institutional vs home care services are also identified.

No payment is required for convalescent units or for palliative care, which are funded by the national health system (and other subsystems). Users are expected to cover the costs related to social support. The exact amount of the co-payment depends on the household’s income. There is no legal obligation for family members to contribute towards the costs if the dependent person is unable to pay.

In Portugal, both carers and dependent persons are entitled to different types of publicly funded cash and in-kind benefits. However, there is a significant difference depending on whether the dependent relative is a child or an elderly person. There are considerable rights allocated to those caring for children, which is not the case for the care of dependent elders. Additionally, it is important to highlight that entitlement to cash benefits for dependent persons is not exclusively based on their level of dependency, but is partly based on their economic vulnerability.

Carer-friendly policy environment

Number of carers

According to the latest edition of the national health survey, in 2014 about 1.1 million people aged 15 years or more (12.5% of the total population) provided assistance or informal care to people in need because of ill health or old age. Over 85% of these provided informal care mainly to family members. More than half (57.4%) provided care for less than 10 hours per week. Women represented 61% of informal carers in total and 64.3% of those providing care for 10 hours per week or more (INE/INSA, 2016).

According to the results of the latest study on the accessibility and quality of continuing care, issued by the Health Regulatory Authority (ERS) in December 2015, Portugal had the highest rate of informal home care in Europe, as well as the lowest rate of non-home-based care and one of the lowest coverage rates of formal care (ERS, 2015).

As in other EU countries, the profile of the typical carer in Portugal is a woman aged between 45 and 75 years old. According to a national study, most carers have low educational achievement, and fewer than half are employed, although the large majority are of working age[1]. In 2016, the Association of Carers Portugal (Associação Cuidadores Portugal) estimated that the value of the work performed by informal carers reached almost EUR 4 billion annually[2].

[1] Teixeira et al., 2017

[2] Ibid. This amount was calculated on the basis of the minimum monthly salary.

Recognition and definition of carers

Even if some measures are already in place to support carers in the provision of good-quality care, the approval of a formal status for informal carers through the national Law (nº 100/2019) published on the 6th September 2019[1] is expected to trigger additional promising changes. This policy development is also crucial in the sense that it may provide more stable grounds for discussing financial sustainability, notably because the work performed by informal carers can be estimated as representing over 2% of the GDP − within a context where Portugal is expected to face the highest increase in healthcare costs in the EU, including LTC costs.

The new Law on the Statute of informal care defines the informal carer as a spouse or de facto cohabitant, relative or akin up to the 4th degree of the straight line or collateral line of the carer, who accompanies and takes care of the care recipient on a permanent basis, under the same roof, and this without receiving any remuneration for professional activity or for the care provided.

Besides recognition, the Law introduces a series of new rights for carers including the possibility to:

  • Be accompanied and receive training to improve their skills and the quality of the care they provide;
  • Receive information from professionals in the areas of health and social security as well as about the condition of the person they care for;
  • Have access to information and counselling;
  • Benefit from psychological support from the health services, whenever necessary, and even after the death of the cared-for person;
  • Benefit from rest periods aimed at their wellbeing and emotional balance;
  • Benefit from the support allowance to the main informal carer, as provided for in the law;
  • Reconcile their caregiving and professional responsibilities;
  • Benefit from the student worker regime, when attending an educational establishment; and
  • Be heard in the definition of public policies affecting informal carers.

[1] https://dre.pt/application/file/a/124500807

Identification of carers and assessment of their needs

Following the introduction of the Law on the Statute of informal care, various support measures are being developed. Informal carers will indeed be able to:

  1. Identify a health professional as their reference contact, depending on the health care needs of the car-for person;
  2. Access counselling, monitoring, capacity building and training via health professionals for the development of their care competencies, within a specific intervention plan;
  3. Actively participate in the elaboration of the above-mentioned intervention plan;
  4. Join self-help groups (to be created in health services) to share experiences, facilitate solutions and minimise their social isolation;
  5. Access training and specific information by health professionals in relation to the needs of the cared person;
  6. Benefit from psychosocial support, in coordination with the health care professional of reference, when necessary;
  7. Access counselling, information and guidance, shaped around the rights and responsibilities of both the carer and care recipient, by the competent social security services, as well as information on the services appropriate to the situation and, where appropriate, their referral;

In the light of these newly-established rights for informal carers in Portugal, it looks like the role of care professionals and social security services in the identification of carers and the assessment of their needs may be crucial.

Social inclusion of carers, access to education and employment

Financial support

Cash benefits available to dependent persons include:

The dependency supplement (complemento por dependência), which may be granted to a person requiring permanent assistance from a third person to perform the activities of daily living. The amount of the benefit varies according to the level of dependency as assessed by the social security services. The monthly amount varies between €103.51 and €186.31 respectively, for: a) persons who are unable to perform activities of daily living (feeding, mobility or personal hygiene) autonomously, and who receive monthly pensions of €600 or less; and b) persons who, in addition to meeting the above criteria for the first degree of dependency, are bedbound or diagnosed with severe dementia.

The attendance allowance (subsídio por assistência de terceira pessoa), which is granted to the informal carer of a disabled child or young person in need of permanent care. The care recipient must: i) be in a state of dependency and need care for at least six hours a day; ii) receive care from the carer who should be a parent living in the same household; iii) not be engaged in any occupation involving pay-related social security contributions or contributions to another similar entity; and iv) receive the child benefit plus a disability supplement, or a monthly life annuity. Currently, the attendance allowance amount stands at €108.68 per month.

Cash benefits targeted at carers to counterbalance the income loss arising from their caregiving include:

The allowance for care to a disabled or chronically ill child (subsídio para assistência a filho com deficiência ou doença crónica) is granted when a parent is prevented from working as a result of his/her caregiving for a (biological, adopted or stepchild) child living in the same household. The allowance represents 65% of the reference wage for the six months preceding the second month before the event, up to a maximum monthly rate of about €860. Both employees and the self-employed are entitled to the leave provided that they have worked and paid social security contributions for at least six months.

The child assistance allowance (subsídio para assistência a filho) and the grandchild assistance allowance (aubsídio para assistência a neto) consist of cash supports aiming to replace the income loss related to the ‘absence for the care of a child or grandchild’. The allowance may concern both the birth of or the provision of care to a grandchild. In the former case, the allowance corresponds to 100% of the reference wage. In the latter, it corresponds to 65% of the reference wage. The minimum amount of the benefit amouts to €11.44 per day. The leave period is taken into consideration in the social security contributions record, based on a reference income corresponding to the reference wage. However, the amounts received as benefit are not included in the calculation of personal income tax (ISS, 2017).

None of the aforementioned cash benefits has to be declared for taxation purposes. Tax deductions exist when care recipients share the household with informal carers but the ground for many of these deductions lies on the sharing of the household rather than on the provision of care.

 

Carer’s leave

Besides cash benefits, two types of leaves and corresponding benefits are available for parents (and in some cases grandparents) to provide care to their disabled or chronically-ill (grand)children.

The leave of Absence for the Care of a Child (Falta para Assistência a Filho) gives each parent the right to take up to 30 days per year off work, or during the whole hospitalisation period (however, both parents cannot use this right simultaneously), in order to provide pressing and indispensable assistance in case of illness or accident to a child under the age of 12 or without age limit to a disabled or chronically ill child. For children aged 12 or more, the maximum number of days is reduced to 15. Adult children must share the household with their parents in order for the article to apply. Article 50 establishes these same rights for grandparents in the case they replace parents in providing pressing and indispensable assistance to their grandchildren.

The Child Care Leave (Licença para Assistência a Filho) may be taken consecutively or in interspersed periods up to a maximum of two years or up to three years if regarding a third or subsequent child. If the child is disabled or chronically ill the leave has a maximum period of four years.

Parents of disabled or chronically ill children up to 1 year of age are entitled to a reduction of five hours per week in their working schedule or to other special working conditions in order to provide care. The reduction does not entail a loss of established rights except for salary. However, the latter may be kept unchanged if the number of unworked hours is deducted from vacation days, up to the annual limit.

Parents of children under 12, or of disabled or chronically ill children of any age, sharing the same household, are entitled to work part-time for a period of up to two years or up to three years for a third or subsequent child. If the child is disabled or chronically ill the leave has a maximum period of four years.

The parents of children under 12, or of disabled or chronically ill children of any age, sharing the same household, are entitled to flexible working hours. Each daily period should not last less than one third of the regular daily working period or more than 10 working hours. The employer may refuse the request for part-time work or to flexible working hours on the grounds of overriding demands regarding the company’s functioning or if it impossible to replace the worker deemed as indispensable.

In addition to the above, a set of services is also made available or supported by Social Security to dependent people and their families. Users are nevertheless expected to co-pay for these services, based on means-testing.

Besides providing services to the person with disability or impairment, the Centres for Care, Monitoring and Social Rehabilitation (Centro de atendimento, acompanhamento e reabilitação social) also support their families and/or carers by providing answers to the problems presented. This support may consist in capacity-building activities targeted at carers.

The Self-help groups, promoted by Social Security, bring together people facing similar challenges and aiming to find solutions through information and experience sharing.

The Centres for vacations and leisure (Centro de férias e lazer) are among the respite care options as the yprovide people with disability or impairment and their families with the possibility to take a break from their daily routines.

Conviviality Centres/Day Centres provide the elderly population with social, recreational and cultural activities, as well as meals.

Home Support Services ensure care and services such as meals, personal hygiene, home hygiene, laundry and ironing, etc.

Some municipalities and/or entities or projects also provide specific services at local level. This is the case, for instance, of projects to support carers of patients e.g. with Alzheimer and with consequences from cerebrovascular accidents in several municipalities. Support is granted mainly through psycho-therapeutic groups. Another example is the telephone help line for relatives of patients with Alzheimer, under the responsibility of the Portuguese Alzheimer Association, in place since mid-2014.

References
  • Lei n.º 100/2019, Aprova o Estatuto do Cuidador Informal, Diário da República, 1.ª série, N.º 171 – 6 de setembro de 2019
  • The 2018 Ageing Report, Economic and Budgetary Projections for the EU Member States (2016-2070), EC, 2018
  • ESPN Thematic Report on Challenges in long-term care – Portugal, EC, 2018
  • ESPN Thematic Report on work–life balance measures for persons of working age with dependent relatives, Portugal, 2016
  • Joint Report on Health Care and Long-Term Care Systems and Fiscal Sustainability, EC, 2016
  • Adequate social protection for long-term care needs in an ageing society, European Commission, 2014
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