Background information

Where people with dementia receive care and support

An estimated 80% of people with dementia live at home, alone or with family. There is no significant information about the number of people with dementia living outside their homes.

The percentage of residents in general/non-specialised residential homes who have dementia is estimated at 30%. The same figure applies to those living in general/non-specialised nursing homes.

There is no information available on the ratio of staff to residents in specific types of residential or nursing homes. However, there are minimum ratios for all homes that depend on whether residents are "dependent" or "very dependent":

Non-profit organisations like Alzheimer Portugal can apply for separate, special agreements with the Social Security Ministry. These provide more financial support but carry requirements such as more staff and/or staff with higher qualifications. These agreements are possible because dementia is considered an "untypical" condition.

The organisation of care and support for people with dementia

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 healthcare programmes for elderly and dependent people.

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

There is no specific state department in charge of social support for people with dementia and carers. However, in 2006 the Ministry of Health and the Ministry of Work and Social Solidarity launched what they called “a new organisational model” to provide care to people in a dependency or lack of autonomy situation - The National Integrated Continued Care Network (Rede Nacional de Cuidados Continuados Integrados). This network gathers as partners a variety of different institutions, private companies and state services (hospitals, health centres, etc.) with the goal of providing quality health services of continued and palliative care.

Most of the services that support people with dementia are destined for older people and don’t 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.

In general, services only provide assistance to people at specific stages in the dementia process, and people often experience discontinued care. The services for older people that are available do not respond to the needs of early stage or younger people with dementia.

Unfortunately there are no specific services for people with dementia living in rural areas, but they are supported by services for older people (Aged People Services) which are run by non-profit organisations or the Church. There is no specific support for people with different kinds of dementia or for people with dementia and carers from ethnic minorities.

There is no specific organised care for people with dementia either, nor is their care and support addressed in national policy. Most (80%) of these people live at home, with or without home service and/or day care centre attendance.

There are very few nursing or residential homes specifically for people with dementia and these are operated by private companies or NGOs such as Alzheimer Portugal. These homes follow the same rules as any other nursing or residential home. There are some care quality certification systems in place, but institutions are not legally obliged to follow them. There are a very few state-run nursing homes, but these are very reluctant to accept people with dementia. In general, nursing homes do not have adequate resources to look after people with dementia.

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 association's Day Care Centre, In-Home care and other services are financially supported by the Ministry of Work and Social Solidarity.

Training

Which social and healthcare professionals provide care and support

The following table shows the type of social and healthcare professionals that provide care and support to people with dementia in residential care or living at home:

*Only if they are linked to the provision and organisation of care and support (i.e. not with regard to their role to provide medical treatment).

Nurses, socio-cultural animators and auxiliary workers are the only types of staff required in a nursing or residential home working team.

The type of dementia training that social and healthcare professionals receive

All employers in Portugal must provide 35 hours per year of certified training to their employees. This is a general rule - there is nothing specific for health or social care professionals or for dementia.

How the training of social and healthcare professionals is addressed

There is no official dementia training for health or social care professionals.

Alzheimer Portugal is a certified training organisation and regularly conducts a variety of training programmes. However, there is no unique programme officially recommended.

Support for informal carers

There is no official support for informal carers in Portugal.

Alzheimer Portugal supplies information in its offices, by telephone or email, through its newsletter, website and Facebook page and with leaflets and brochures. The association provides psychological support and training for informal carers and hosts social involvement activities such as Memory Cafes.

National Alzheimer Association

The table below lists services provided by Alzheimer Portugal.

References

National Institute of Statistics (2010). Accessed on 18 July 2013 at: www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_p_etarias&menuBOUI=13707095&contexto=pe&selTab=tab4

National Institute of Statistics (2012). Accessed on 18 July 2013 at: www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0000611&contexto=pi&selTab=tab0

Nunes, B., Silva, R.D, Cruz, V.T., Roriz, J.M., Pais, J. and Silva, M.C. (2010). Prevalence and pattern of cognitive impairment in rural and urban populations from Northern Portugal. BMC Neurology, 10, 42-54. www.biomedcentral.com/1471-2377/10/42

Acknowledgements

Maria Rosário Zincke dos Reis, Former Chairperson of the Board, Alzheimer Portugal

Tatiana Nunes, Public Relations Officer, Alzheimer Portugal

Ana Margarida Cavaleiro, Training and Projects Officer, Alzheimer Portugal

Ana Sofia Gomes, Social worker, Alzheimer Portugal