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Portugal

Social support systems

Organisation and financing of social support to people with dementia and carers

Background information on the social/healthcare system in Portugal

Portugal has been a constitutional democratic republic since 1974 when the Salazar-Caetano regime, which had lasted 48 years, was overthrown. After the revolution of 1974, considerable changes took place in the organisation of health care services. In 1976, the citizen’s right to health was incorporated into the Portuguese constitution. This was followed in 1979 by the establishment of the National Health Service which was to be universal, comprehensive and free of charge (Bentes et al. 2004).

The organisation of social support for people with dementia and carers

There is no specific state department in charge of social support for people with dementia and carers. Although the situation of these people was the subject of a study conducted by the Social Security Department, no serious measures were taken or services created to respond to the requirements identified in this study.

APFADA, the Portuguese Alzheimer Association, is currently the leading organisation in providing aid to its target population, even though new players, mainly in the private sector, are arriving on the scene and creating new services.

The Ministry of Work and Social Solidarity, through the Assistant Secretary of State, has the jurisdiction in matters related to the rehabilitation and integration of elderly people or people with disability. The Ministry of Health, through the Assistant Secretary of State, is also responsible for the development and coordination of health care programmes for elderly and dependent people.

Recently, the Ministry of Health and the Ministry of Work and Social Solidarity created the grounds for the establishment of a National Integrated Continued Care Network (Rede Nacional de Cuidados Continuados Integrados). This network will gather as partners a variety of different institutions, private companies and state services (hospitals, heath centres, etc) with the goal of providing quality health services of continued and palliative care.

The Ministry of Work and Social Solidarity, through the Social Security and SNRIPD (National Secretary for Rehabilitation and Integration of People with Disability), has been funding APFADA’s Day Care Centre, In-Home care and other services. With the institution of the National Integrated Continued Care Network, several new players from the private sector and non profit organisations will be establishing partnerships with state departments.

The overall funding of social support for people with dementia and carers

Support for people with dementia and their carers is funded by general taxation, SNS (the National Health Service) service fees and service co-partnership.

The legal framework surrounding the provision of social support

The following table contains information taken from the Constitution of the Republic of Portugal and various Portuguese laws which are relevant to the provision of social support to people with dementia and carers.

The Constitution of the Republic of Portugal

Part I: Fundamental rights and duties

Title III, Economic, social and cultural rights and duties
Chapter II, Social rights and duties

Article 63, Social security and solidarity

3. The social security system provides protection for citizens in sickness or old age or when disabled, widowed, orphaned or unemployed, and in all other situations in which the means of subsistence or the capacity to work have been lost or impaired.

Title III, Economic, social and cultural rights and duties
Chapter II, Social rights and duties

Article 64, Health

1. Everyone has the right to have his or her health safeguarded and the duty to defend and foster it.

2. The right to the safeguarding of health shall be met by:

b. The creation of economic, social, cultural and environmental conditions that guarantee, specifically, the protection of children, the young and the old; the systematic improvement of living and working conditions; the promotion of physical fitness and sports in schools and among the people; the development of health education for the people and practices of healthy living.

Title III, Economic, social and cultural rights and duties
Chapter II, Social rights and duties

Article 67, Family

2. The State has the duty of protecting the family, in particular by:

b. Promoting the establishment of, and guaranteeing access to, a national network of day-care centres and other social facilities for family support, and a policy for the aged;

Title III, Economic, social and cultural rights and duties
Chapter II, Social rights and duties

Article 72, The Elderly

1. Old people have the right to economic security and to conditions of housing and of family and community life that respect their personal autonomy and prevent or surmount their isolation and marginal position in society.

2. The policy for the old shall also include economic, social and cultural measures that aimed at providing old people with opportunities for self-fulfilment through active participation in the life of the community.

Part II: Organisation of the economy

Title I, General principles

Article 81, Primary duties of the State

In economic and social matters the primary duties of the State are:

a. To promote an increase in the social and economic well-being and quality of life of the people, in particular of those most underprivileged, in the context of a strategy of sustainable development;

ACTS (from the government):

-Decreto-lei nº 123/97 de 22.05

Torna obrigatória a adopção de um conjunto de normas técnicas básicas de eliminação de barreiras

arquitectónicas

Decree about the access to public buildings, and on the streets to people with incapacity.

-Despacho Conjunto nº 18

891/2006 de 06.06

Definição de procedimentos das Entidades prescritoras e financiadoras de ajudas técnicas

Dispatch regarding funds to assistive devices for people with incapacity.

-Despacho Conjunto MS/MESS, de 01.07.1994

Despacho Conjunto MS/MSSS, de 04.07.1996 (DR n.º 204, II Série, de 03.09.1996)

-Despacho Conjunto MS/MSSS, de 24.07.1997 (DR n.º 192, II Série, de 21.08.1997)

-Despacho Conjunto MS/MTS n.º 407/98, de 15.05.1998 (DR n.º 138, II Série, de 18.06.1998)

Criação e regulamentação do Programa de Apoio Integrado a Idosos

Joint Acts by Health and Social Security and Work ministries creating and regulating the Integrated Support Programme for Elderly People.

- Decreto-Lei Nº64/2007

Define o regime jurídico de instalação, funcionamento e fiscalização dos estabelecimentos de apoio social geridos por entidades privadas

Decree that defines the rules for the creation, running and inspection of social support settings.

- Despacho Normativo n.º 62/99, de 12.11

Aprova as normas que regulam as condições de implantação e funcionamento de Serviços de Apoio Domiciliário

Dispatch from the government ruling the home care service.

- Despacho Nº4250/2007, de 23.03.2007

Determinações sobre a comparticipação do Estado nos medicamentos para o tratamento da doença de Alzheimer.

Ministerial dispatch about the NHS support/co-partnership of Specific Alzheimer Disease medication.

- Decreto-Lei nº 100/2006, 06.06

Cria a Rede Nacional de Cuidados Continuados Integrados.

Decree from the government establishing the National Integrated Continued Care Network. This law improves services like intermediate care, long-term care and rehab care.

- Decreto-Lei n.º 265/99,de 14 de Julho

Altera o Decreto-Lei n.º 329/93, de 25 de Setembro, que estabelece o regime de protecção na velhice e na invalidez dos beneficiários do regime geral de segurança social. Confere aos idosos dependentes, entre eles os que apresentem “quadros de demência grave” um complemento de pensão.

Decree that rules the General Regime of Social Security. Grants an additional financial support for people with Dementia in latter stages.

     

The suitability of social support for people with dementia and carers

Adequacy and accessibility in general

There is still a lack of information on health services, community services and general information about dementia and its consequences. This fact is obstructing early stage diagnosis and intervention.

Most of the services that support people with dementia are destined for elderly people and do not have the physical structure or human resources to provide quality care. These services are managed by non-profit organisations, partly funded by the State and difficult to access, especially the long-term care facilities and nursing homes.

Most of the services only provide assistance to people at specific stages in the dementia process, and people often experience discontinued care.

People living in rural areas

Unfortunately there are no specific services for people with dementia living in rural areas, but they are supported by services for the elderly (Aged People Services) which are run by non-profit organisations or the Church.

People with different types of dementia

Support provided in Portugal does not take into account different kinds of dementia.

People from ethnic minorities

There are no services that are specifically for people with dementia and carers from ethnic minorities.

Younger people with dementia

The services for the elderly that are available do not respond to the needs of early stage or younger people with dementia.

Services and support for people with dementia and their carers

Types of care

Day care

Day care centres exist. They are partly funded by the State, partly by service users. The average cost of a Day Care Centre is €23 per day and families have to pay 40% of their total income, up to that maximum. If that 40% is not enough to pay for the service, the State will then pay the rest. When day care is private, the service is totally paid by the service user.

Respite care

Respite care at home is available but this is very much on a small scale and is provided by voluntary or non-profit organisations. When the service is part of the agreement between the In-Home Care provider and the service user, it is partly paid by the user and partly by the State.

Very few short-term respite services exist i.e. not more than 5. Those that do are partly funded by the State and partly by service users. For private short-term respite, service users must pay the total cost themselves.

There are no long-term respite care services in Portugal.

Long-term residential care

With regard to long-term residential care, it was estimated by the social security service in 2004 that 30% of clients in certified nursing homes had some form of dementia. This estimate did not take into account non-profit or non-certified organisations. Private companies charge clients about EUR 50 per day. If managed by non-profit organisations, they are funded by the State and the client. In such cases, means testing is applied and clients have to contribute 70-85% of the family income up to a certain maximum which in 2007 is about EUR 26 per day.

Palliative care

Palliative care services, either at home or in a palliative care centre, are not available.

Monitoring systems

A tele-alarm system is available and is sufficient. It is partly funded by the State and partly by service users. However, it is not used by people with dementia as up until very recently, the available systems were unsuitable and expensive.

A few months ago APFADA established an agreement for a GPS device called “Localiser Find Me”. People with dementia can now buy this for 50% of its market value which means that it would cost them €250. Existing devices were too complicated to use, very expensive (around €1500) and limited (they could only be used inside the house or in care settings).

Personal assistance and home help

Personal assistance

The following services are available and are partly funded by the State:

  1. Assistance with personal hygiene
  2. Assistance with eating and drinking
  3. Assistance with mobility e.g. lifting, moving and walking

The Portuguese Alzheimer Society considers these services sufficient. They can also be obtained from private companies but in that case, service users must pay the total cost.

Assistance/supervision taking medication, dealing with incontinence and/or skin care is also available and provided by private companies and Community heath centres. Palliative care providers offer assistance with skin care, but palliative care services do not respond to current demand or are too expensive. It is possible to ask the Social Security for financial support for technical aids, incontinence products, medication or a private nursing home, but each case is analysed individually. Although assistive devices are available, they are not generally used by people with dementia.

Companionship and social activities are provided by volunteers. This is not sufficient.

Occupational therapy/ergotherapy is available. It is partly funded by the State, partly by service users and is not sufficient.

There are a few schemes operated by town councils that adapt people’s homes in accordance with their needs. This is completely funded by the State but is insufficient.

Home help

Assistance with housework and with shopping is only provided by private companies and must be completely financed by service users. It is therefore insufficient.

Help with the preparation of meals (including meals-on-wheels) is available. This service is partly financed by the State and partly by service users. If the service is provided by private companies, then service users must pay the full cost themselves. On the whole, this service is considered to be sufficient.

Transportation is provided by fire departments and private companies. The State may partly or fully contribute towards the costs of the service but some users have to pay for it completely themselves. This service is not considered sufficient.

Laundry services exist and they are considered sufficient. The State may contribute partly towards the cost of this kind of service.

Psychosocial support and training for people with dementia and carers

APFADA provides information on services that are available for people with dementia and carers. There are no other organisations providing this service and it is therefore considered insufficient.

Other services provided by APFADA include:

  1. Counselling for people with dementia
  2. Counselling for carers
  3. Holidays for people with dementia
  4. Holidays for carers (or replacement carers to enable carers to have a break)
  5. Training for carers

These services are considered insufficient. Moreover, APFADA does not receive financial assistance from the State for the provision of these services. The holidays for carers can only be provided to a small group of people with funding from a few private companies. With regard to the training of carers, APFADA has recently signed an agreement with an insurance company that will support financially the increase of training for carers.

Work/tax related support for people with dementia

There is no legal protection for people with dementia who are still in paid employment. People with dementia are not entitled to tax refunds on the grounds of their incapacity or for employing someone to provide home care services for them. There are no grants for home adaptations, no reduced rates on television licences or public transport and no entitlement to direct payment to pay for services. There are general arrangements for people with disabilities.

However, people with dementia, who are in need of constant attendance by another person, are entitled to a payment from the State. This is covered by: Decreto-lei nº 265/99, de 14 de Julho; Decreto-lei nº 309-A/2000, de 30 de Novembro and Portaria nº1357-A/2006, de 30 de Novembro. If eligible for this allowance, they receive a regular payment of between €79.68 and €159.35 per month in addition to their pension. If they do not have any income or a pension, the State adds €34.39 to the pension of their husband or wife.

Work/tax related support for carers and carer allowances

Carers are not entitled to time off work for caring (either paid or unpaid), flexible working hours, tax benefits or pension contributions for the services they provide.

Bibliography

Unless otherwise stated, information provided by Rui Barros de Abreu (on behalf of APFADA, the Portuguese Alzheimer Society) in April 2007

 

 
 

Last Updated: mercredi 15 juillet 2009

 

 
 

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