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Belgium

2013: National policies covering the care and support of people with dementia and their carers

Background information

Belgium is a Federal State, composed of 3 regions and 3 communities: the Flemish community, the Walloon community and a small German-speaking community. The responsibilities for healthcare and support to older people are shared among the three authorities. Laws, regulations and decrees fall to each respective authority.

Prevalence of dementia

Alzheimer Europe estimates the number of people with dementia in Belgium in 2012 as being 191,281.This represents 1.77% of the total population of 10,787,788. The number of people with dementia as a percentage of the population is somewhat higher than the EU average of 1.55%. The following table shows the estimated number of people with dementia between 30 and 59 and for every 5-year age group thereafter.

Age group

Men with dementia

Women with dementia

Total

30 - 59

3,591

2,001

5,593

60 - 64

650

3,009

3,658

65 - 69

4,497

3,754

8,251

70 - 74

6,353

8,894

15,247

75 - 79

12,057

17,420

29,477

80 - 84

17,066

30,863

47,929

85 - 89

12,668

35,393

48,061

90 - 94

5,317

21,681

26,998

95+

772

5,294

6,067

Total

62,972

128,309

191,281

It has not been possible for Ligue Alzheimer-Alzheimer Liga (LINAL) to make a distinction between the people diagnosed with Alzheimer’s disease and those with other types of dementia. As the specific examinations and evaluations needed to make a diagnosis are not always offered to the person with dementia symptoms, it is very difficult to evaluate the number of people who have not been diagnosed with dementia but still have the disease (Ylieff et al., 2006).

Nevertheless, LINAL estimates that some 185,000 people have dementia in Belgium (9% of the people aged 65 and over). In Brussels, LINAL estimates the number of people with dementia to be 13,684. It seems there are 98.53 people with dementia per square kilometre in Brussels, again according to LINAL (rtbf, 2013).

In 2010, in Flanders, it was estimated that 100,000 people had dementia. About 2,000 of them were people below 65 years of age (Vandeurzen, 2010).

In their book, Ylieff et. al. (2006) refer to the latest epidemiological study that was carried out in Belgium in 1994. This study shows that 9% of the population aged 65 and over had dementia.

In Flanders, the figures are the following (Vandeurzen, 2010):

  • Over 10% of people over 65 have dementia,
  • Over 20% of people over 80 have dementia,
  • More than 40% of people over 90 have dementia.

Where people with dementia receive care and support

The following table provides estimates of the number of people with dementia living at home, in various types of residential care and in hospitals or psychiatric institutions.

Place of residence

 

YES or NO

Estimated number/

Additional information

At home (alone)

Yes

There is no specific breakdown for each proposal.

By deduction from the King Baudouin Foundation report, 55% of people with Alzheimer’s disease live at home. (KCE, 2009)

 

In Flanders, 70% of people with dementia live at home. Family members or people in the neighbourhood give care to these people. The majority of caregivers are over 50 and are women (Vandeurzen, undated).

At home (with relatives or close friends)

Yes

 

At home (with other people with dementia)

Yes

 

In general/non-specialised residential homes

Yes

45% of people with Alzheimer’s disease live in an institution (KCE, 2009).

 

 

 

In specialised residential homes for people with dementia

Yes

 

In general/non-specialised nursing homes

Yes

 

In specialised nursing homes for people with dementia

Yes

 

In hospitals, special wards or medical units

 No

Hospitalisation is for a limited period of time and cannot be considered as a residential place (Van Audenhove et al., 2009).

 

In psychiatric establishments

 Yes

Figures are unknown

There are no official data as to the percentage of residents who have dementia in general/non-specialised residential homes or in general/non-specialised nursing homes. 

Ingeneral, non-specialised residential homes inBelgium, staff norms for 30 beds vary between 4.5 to10 full time nursing staff (nurses and auxiliary nurses). Also, one nursing staff member must be present night and day for 75 beds (Van Audenhove et al., 2009).

In the Walloon community, nurses and auxiliary nurses must permanently be in a position to respond to calls from the residents and do day and night watches. In addition, at least one nurse or auxiliary nurse must be present night and day for a capacity of up to 60 beds, 2 for a capacity of between 60 to 129 beds, 3 for a capacity of between 130 and 199 beds and 4 for a capacity of over 199 beds in residential and nursing homes as well as in short stay residences (Wallex, undated).

Ingeneral/non-specialised nursing homes,5 full time nurses (including one chief nurse) must be available for a capacity of 30 beds, 5 full time auxiliary nurses and one full time allied health professional (occupational therapist, physiotherapist, speech therapist) (Van Audenhove et al., 2009).

In the Walloon community, in 2008, there were 196 beds inspecialised residential homesaccredited by the Region, 985 beds not accredited by the Wallonia Region and 304 non-accredited beds in the Brussels region (Van Audenhove et al., 2009).

The government in Wallonia has produced specific norms for the admission and care of disoriented people in specialised units (Walloon government decision of 15 October 2009 relative to the enforcement of the decree of 30 April 2009, relative to the accommodation of elderly people) (Wallex, 2009).

The organisation of care and support for people with dementia

In line with initiatives organised by political parties, associations or independent actors, the care of people with dementia is organised as follows (non-exhaustive list):

Extra-muros:

  • home care and support,
  • coordination services,
  • integrated home care,
  • family and older people support services,
  • nursing care,
  • family support services,
  • home care,
  • tele-assistance,
  • home help, meals on wheels,
  • mental health services,
  • psycho-social interventions,
  • telephone helplines,
  • family associations,
  • volunteers,
  • memory clinics accredited by the national health insurance (INAMI-RIZIV).

Inta-muros:

  • day centres,
  • day-care centres,
  • night-care centres,
  • short-term care centres,
  • serviced residential homes,
  • rest homes,
  • rest and care homes,
  • care centres for disoriented people,
  • small-scale standardised residences.

At Federal level:

  • INAMI -RIZIV finances memory clinics. (http://www.inami.fgov.be/care/fr/revalidatie/convention/hospitals-memory/)
  • INAMI- RIZIV finances the training of the dementia referent.
  • INAMI -RIZIV finances ‘Protocole 3’ (this protocole was signed between the Federal Government, the Communities and the Regions. It foresees the provision of dedicated finances to study alternative care and support for old vulnerable people). The conditions under which the INAMI-RIZIV may agree conventions is spelt out by the Royal Decree of 02 July 2009. 

In Belgium, the provision of care and support is addressed in some national policies:

At regional level:

In Wallonia, the Alzheimer Plan has 13 objectives around 3 axes that will help to improve the provision of care and support to people with dementia and their carers.

  • Axis 1: ensure a better understanding and management of dementia and a pertinent management of dementia at a community level.
  • Axis 2:  improve the quality of life of people with dementia and their carers during the different stages of the disease.
  • Axis 3:  gain a better understanding of the disease and set up an action plan.

In Flanders, the Flemish Dementia Plan 2010-2014 also addresses the provision of care and support (Vandeurzen, 2010). This plan focuses on a limited number of goals:

  • Change the way society conceptualises dementia and communicates about the disease. Negative phrasing like ‘a tsunami of dementia’ can result in ‘excess disability’, in unnecessary harm.
  • Promotion of healthy living, healthy ageing.
  •  Support of the autonomy of people with dementia and their social network.
  • Special focus on young people with dementia and other specific groups.
  • Innovation through science and research.
  • Towards a dementia-friendly Flanders.

At the time of producing this publication, the Brussels Region was still working on an Alzheimer Plan.

Training

Which social and healthcare professionals provide care and support

Different healthcare professionals work in different settings: nurses work in institutions and old people’s homes; auxiliary nurses work in institutions; auxiliary family helps provide home- support; allied professionals such as language therapists, physiotherapists, dieticians, podiatrists work in institutions and provide support at the person’s home; specialists such as psychiatrists, gerontologists and neurologists provide ambulatory care; while general practitioners work in their private practice or at the person’s home. Other people, like volunteers provide support in institutions and at home.

The type of training that social and healthcare professionals receive

The training for various competences is addressed by different bodies: the Federal Public Health Service and the INAMI-RIZIV, the Federation of Home Services or the public social services centres (CPAS  - Centres Publics d’Action Sociale),  the French Community social promotion training, independent training centres, Alzheimer Liga in Flanders, Ligue Alzheimer asbl in Wallonia and Brussels, Expertise Centre Dementia Flanders.

Nurses have to follow an A1 and A2 training so they can work in institutions and people’s homes while auxiliary nurses need to have followed higher secondary studies to be able to work in institutions.

(A1 nurses can work in all areas of nursing care while A2 nurses scope of activity is more reduced. They cannot work in intensive care, emergencies, for instance).

In the Walloon region, healthcare professionals must follow a 1 to 2 day continuous training on a yearly basis, depending on their role and qualifications. This training is general and not specific to dementia. Nevertheless, it is possible to choose specific training modules related to dementia. A testimony / acknowledgement of participation is given for the majority of the trainings.

The majority of the trainings in Wallonia are accredited by an ‘attestation de participation’ (paper that officially recognises that the person has participated in the training) except for one training: The exception is the training at Federal level, of the ‘dementia-referent’ that leads to a certification. This enables a nursing home to benefit from the financing of a part-time position for the staff members that have completed this certification.

How the training of social and healthcare professionals is addressed

At Federal level, training to become a dementia reference person lasts 60 hours and is accredited by the Federal Public Health Service and the INAMI for the staff in nursing homes.  This training may lead to the financing of a part-time job in a nursing home if the professional has a basic training matching clear criteria and if 25 people with dementia are living in a nursing home.

At Regional level, the regions have formally spelled out the obligation to put in place a continuous training for health and social care professionals (Decree of 30 April 2009 relative to the accreditation of home care and support coordination centres with a view to obtaining subsidies – Moniteur Belge of 15/06/2009 or the Walloon community decision towards the execution of Decree of 30 April 2009 relative to the admission and care of older people). This training is general and not specific to dementia.

The French Community gives an accreditation to the ‘ACCORDé’ training for professionals who work at people with dementia’s homes and nursing homes.

Wallonia has an Alzheimer Plan. Objective 10 of the plan is to ‘develop a specific dementia training for professionals’.

In Flanders, Alzheimer Liga provides training to its core members and volunteers (caregivers, relatives).

The “Expertisecentrum Dementie Vlaanderen” (Expertise Centre Dementia Flanders and the 9 regional centres for dementia focus primarily on professional trainings (for instance professionals working in residential care).  They also deploy initiatives to reach relatives and informal carers.

In Flanders, other actors, such as mutual insurance associations and universities, also offer training (through symposia, workshops or other initiatives) for nursing staff, auxiliary staff, or social sector professionals.

The Flemish Alzheimer Plan 2010-2014 includes training for dementia referents and for dementia consultants in order to (Vandeurzen, 2010):

  • Improve and speed up diagnosis,
  • Encourage research,
  • Eliminate stigma,
  • Provide tailored residential care: in cooperation with the home care and in accordance with the residential decree, offer people  with dementia differentiated day-care, stays, night-care and small-scale housing.
  • Ensure early care planning is more timely and examines the extent to which medical-
  • Ensure more autonomy for the people with  dementia and carers,

       technical support meets patient needs.

  • Specific attention given to young people with dementia and "forgotten groups':   immigrants, the poor, people with disabilities, with Down’s syndrome.
  • Innovation through science and research.
  • Dementia-friendly Flanders: this encompasses teamwork with other authorities and actors on the ground, including: people with dementia, their carers and their associations and organisations.

The courses for social and healthcare professionals are taught by the Dementia Expertise Centre in Flanders and are commissioned by the Flemish government for health, family and welfare.

The Flemish Alzheimer’s Association also provides training to its volunteers and carers.

At the time of printing this book, the Brussels Region was developing an Alzheimer Plan.

Support for informal carers

At regional level, in Wallonia, the Alzheimer Plan specifically supports carers under Axis 2: improve the quality of life of people with dementia and their carers during the different stages of the disease.

In particular, Objective 3 will seek to ensure the provision of quality information for the people with dementia and their carers and Objective 4 will seek to support informal carers and family members as prime actors in the support of people with dementia.

In addition, the following groups provide support to the carers:

  • Family associations,
  • Sickness funds,
  • NGOs and political groups,
  • Ligue Alzheimer ASBL (Alzheimer Cafés, Information sessions, free phone help line, annual conference, Alzheimer Café Day).
  • Flemish Alzheimer's Association: family groups for carers and relatives for (young) people with dementia (peer support groups), conferences, free-phone helpline training, World Alzheimer’s Day.  The Flanders region is working towards dementia-friendly communities. This region has engaged in team-work with authorities and various stakeholders on the ground (people with dementia, their carers, Alzheimer and carers associations).

Ligue Alzheimer in Wallonia created and promoted the concept of dementia-friendly cities “Ville Amie Démence” or “ViADem” (http://www.ville-amie-demence.be/)

In Flanders, the King Baudouin Foundation, the Association for cities and municipalities, and other organisations (such as the Flemish Alzheimer’s Association and the Expertise Centre Dementia Flanders) support dementia-friendly projects.

The organisation also provides trainings (including ‘dementia referent’ trainings), organises meetings where people can talk and exchange experiences and conferences all over Wallonia and Brussels.  

National Alzheimer Association

The National Alzheimer Association of Belgium provides the following services and support

Helpline

x

Information activities (newsletters, publications)

x

Website

x

Awareness campaigns

x

Legal advice

 

Care coordination/Case management

 

Home help (cleaning, cooking, shopping)

 

Home care (personal hygiene, medication)

 

Incontinence help

 

Assistive technologies / ICT solutions

 

Tele Alarm

 

Adaptations to the home

 

Meals on wheels

 

Counselling

x

Support groups for people with dementia

 

Alzheimer cafes

x

Respite care at home (sitting service etc)

 

Holidays for carers

 

Training for informal carers

x

Support groups for informal carers (peer groups)

x

Day care

 

Residential/Nursing home care

 

Palliative care

 

References

KCE (2009).Interventions pharmaceutiques et non pharmaceutiques dans la maladie d’Alzheimer.  KCE reports 111b, p. 67.

https://kce.fgov.be/sites/default/files/page_documents/d20091027328.pdf

rtbf (2013). La Ligue Nationale Alzheimer lance un "plan national Alzheimer". Accessed online on 9 November 2013 at:  http://www.rtbf.be/info/societe/detail_la-ligue-nationale-alzheimer-lance-un-plan-national-alzheimer?id=7842767

Van Audenhove C., Spruytte N., Detroyer E., De Coster I., Declercq A., Ylieff M., Squelard G. & Misotten P. (2009).  Les soins aux personnes atteintes de la Maladie d’Alzheimer: perspectives et enjeux.Série: Apprivoiser la maladie d’Alzheimer (et les maladies apparentées).Accessed on 9 November 2013 at: http://www.kuleuven.be/lucas/pub/publi_upload/2009_7_CVA_NS_ED_IDC_AD_Les%20soins%20aux%20personnes%20atteintes_frb.pdf

Wallex (2009). Arrêté du Gouvernement Wallon portant sur l’exécution du Décret du 30 Avril 2009 relatif à l’hébergement et à l’accueil des personnes âgées.Moniteur Belge du 12/11/2009, p.71995. Accessed online on 9 November 2013 at: http://wallex.wallonie.be/index.php?doc=15717&rev=16374-11824

Vandeurzen J. (undated). Dementieplan Vlaanderen 2010 -2014. Alzheimer Liga. Accessed online on 9 November 2013 at: http://www.alzheimerliga.be/LinkClick.aspx?fileticket=324C416E6139734D7847773D&tab

Vandeurzen J. (undated). Vergeet dementie, onthou mens. Een dementievriendelijke samenleving start in je hoofd.CD&V. Accessed online on 9 November 2013 at: http://jo.vandeurzen.cdenv.be/sites/jvandeurzen/files/Cijfers%20en%20feiten%20over%20dementie_0.pdf

Ylieff M., De Lepleire J. & Buntinx F. (2006). Soins aux personnes démentes en Belgique. Résultats et recommendations de l’étude Qualidem. Accessed on 9 November 2013 at: http://books.google.be/books?id=fy4KzmD2Pr8C&printsec=frontcover&hl=fr&source=gbs_ge_summary_r&cad=0#v=onepage&q&f=false

Acknowledgements

Sabine Henry, Chair, Ligue Alzheimer LINAL

Hilde Lamers, Director, Flemish Alzheimer’s Association LINAL

Céline Schrobiltgen, Ligue Alzheimer LINAL

Jan Steyaert, Expertise Centre Dementia Flanders

 

 
 

Last Updated: Tuesday 25 February 2014

 

 
  • Acknowledgements

    The above information was published in the 2013 Dementia in Europe Yearbook as part of Alzheimer Europe's 2013 Work Plan which received funding from the European Union in the framework of the Health Programme.
  • European Union
 
 

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