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Luxembourg

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

Background information

Prevalence of dementia

Alzheimer Europe estimates the number of people with dementia in Luxembourg in 2012 as being 6,989. This represents 1.34% of the total population of 523,179. The number of people with dementia as a percentage of the population is somewhat lower 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

188

103

292

60 - 64

27

118

145

65 - 69

185

148

333

70 - 74

257

354

611

75 - 79

456

639

1,095

80 - 84

653

1,136

1788

85 - 89

410

1,248

1,659

90 - 94

127

733

859

95+

24

182

206

Total

2,327

4,662

6,989

According to Insight SantéSécu, an information publication of the Ministry of Health, dementia and cognitive impairment rank second among the main causes for dependency in Luxembourg. Dementia affects 33% of the beneficiaries of the ‘dependency insurance’. 

The average age of the beneficiaries of this insurance was 82.9 in 2010 and the majority of these were in nursing homes.  Insight SantéSécu also gives a dementia prevalence ratio of 2.6 females to one male (Insight SantéSécu, 2013).

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

+/-  5%

At home (with relatives or close friends)

Yes

+/- 10%

At home (with other people with dementia)

Yes

+/- 2%

In general/non-specialised residential homes

Yes

No data

In specialised residential homes for people with dementia

Yes

No data

In general/non-specialised nursing homes

Yes

+/- 10%

In specialised nursing homes for people with dementia

Yes

+/- 40 %

In hospitals

No

 

In psychiatric establishments

Yes

 

The percentage of people living in general/non-specialised residential homes who have dementia is unknown. The lack of data also goes for the number of people with dementia living in general/non-specialised nursing homes.

However, according to the Ministry of Health in 2000, 46% of people receiving support under the dependency insurance lived at home and 54% in a nursing or residential home. In 2010, the figures were 45% and 55 % respectively (Ministry of Health, 2013).

The ratio of staff to residents in general/non-specialised residential homes, general/non-specialised nursing homes,  specialised residential homes for people with dementia and in specialised nursing homes for people with dementia is also unknown

The organisation of care and support for people with dementia

The overall organisation of care and support

In Luxembourg, the care of people with dementia is organised by the Parliament and the Ministries that are competent in this domain. If a person needs to go into a care home, this person is responsible for payment of the rent, food and washing. Medicine and care assistance are paid by the national dependency or care insurance schemes of Luxembourg.

Information on dementia and how to use care allowances is provided by the Alzheimer Luxembourg Association, the Parliament, Ministries, the long-term insurance body, nursing and care institutions. “Memory walks” are also opportunities to provide information.

The long-term care insurance – ‘Assurance dépendance’

Long-term care insurance (the so-called ‘dependency insurance’) came as a response to the demographic ageing of the population and the lack of adequate support in the existing structures. Following a report on the dependence of older people in 1992, some recommendations were made: set up a global project to manage the dependency of older people, promote a flexible organisation of care around the older person, set up training in geriatrics, brainstorm on the management of psychological dependence, reform the nursing homes for older dependent people, reinforce the efficacy of home care and introduce the idea of a forum that would link up all actors on the ground. 

The long-term insurance law was voted in 1998 and came into force in 1999. Dependence then became a risk covered by the Social Security of Luxembourg. The dependency insurance became the fifth pillar of the social security system; it became obligatory with the objective of protecting citizens against the danger of poverty linked to the high costs of long-term care. Access to this insurance was unconditional, i.e. not dependent upon age or place of residence.

The law has four leading principles: priority is given to home care before resorting to nursing home care; rehabilitation prior to care; support in kind before support in cash; as well as continuity in care.

Dependency is clearly defined in the 1998 law. The central concept of the definition is the need for support supplied by a third person:

  • The cause of dependency must be a mental disease or a similar deficiency.
  • The care need must cover activities of daily living.
  • The intensity threshold of the need is 3.5 hours a week.
  • The physical capacity to engage in activities of daily living as well as the psychological and mental capacity of the person must be considered with the exclusion of any other consideration.
  • The care need must be for at least six months.

Having access to an independency allowance is an individual measure, based upon the support and care required. Based on the information gathered by the professional in charge of the evaluation, the necessary support and care are laid out in a care plan.

The law was modified in 2005. The modifications did not affect the fundamental aspect of the 1998 law but the concept of quality was introduced to the support and care provided.  This also applies to the health professionals and informal carers. In 2008, the Committee for the quality of allowances (Commission de qualité des prestations) set up a pluri-annual work plan insisting on the improvement of the quality of the information targeted at users.  The 2005 modifications also introduced greater flexibility in the access to care.

The new law provided for the setting up of a couple of new bodies (Ministère de la Sécurité Sociale, 2013):

  • the Committee for the quality of allowances: its mission is to propose reference norms and standards for the quality of support and care, for technical aids and home adaptation.
  • the Evaluation and Orientation body was given control over the quality of the support and care provided to the dependent person as well as control over the appropriateness of the support given to the dependent person. 

Services in kind and direct payments

Services in kind can be converted into direct payments. This is limited to the support and care that allow the person to engage in activities of daily living:

  • For up to seven hours of support and care to enable activities of daily living, the allowance can be converted in full.
  • Between seven and fourteen hours, half of the allowance can be converted
  • Over fourteen hours, no conversion is possible.
  • The maximum that can be received in cash corresponds to 10.5 hours per week (Kerger, 2013).

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

The dependency insurance is financed by the State budget (35% of the spending in 2012 and 40% in 2013), part of the ‘electricity tax’, and the tax-payers dependency contribution (Kerger, 2013).

The contribution base is made up of the professional income, substitution income (revenus de remplacement) and patrimony.

The dependence contribution rate is currently fixed at 1.4% ((Ministère Sécurité Sociale, 2013)

Now that the dependency insurance has been in existence for 15 years, it is observed that spending increases 1.8 times more rapidly than the number of beneficiaries. In 2010, the average total annual cost was EUR 31,500.  Costs related to activities of daily living remain the highest costs. They have tripled since the introduction of the dependency law. Support care activities, however, show a far sharper increase.

The financial stability of the dependency insurance is fragile: the reserve gradually diminishes. The balance will become negative in 2013. To keep a viable system, the contribution rate necessary to keep the balance between income and spending is estimated at 1.43% in 2013. It should reach 1.73% in 2013 (Insight SantéSécu, 2013).

In-kind support is paid directly to the providers. Cash support is given directly to the dependent person (Kerger, 2013).

Organisation of the long-term insurance (dependency insurance)

  • The National Health Fund (Caisse Nationale de Sécurité – CNS) takes the decisions and establishes the budgets.
  •  The Consultative Committee gives advice on the measuring instruments that assess dependency.
  • The Evaluation and Orientation body will assess dependency as well as the quality and quantity of the allowances.
  • The Quality Committee sets up standards for the quality of care. 

Four types of service-providers match the living place of the dependent person: networks of support and care, semi-stationary centres, long-term care nursing homes and intermittent care nursing homes. 

The conditions for the service-providers to be accredited are clearly spelled out: the service provider must have an accreditation from the relevant ministry and adhere to the framework convention that defines the relationship between the Caisse Nationale de Santé (CNS – National Health Fund) and the providers by signing a support and care contract.   

The service providers are members of COPAS, the Confederation of care and service suppliers (Confédération des Organismes Prestataires d'Aides et de Soins) (Kerger A., 2013; Ministry of Health, 2013)

The dependency insurance stipulates that each support or care activity is granted a standard duration. This will be used to evaluate the threshold of the allocated allowances.

The need of care must cover the essential tasks of daily living. The minimum requirement is 3.5 hours per week for at least six months (Insight SantéSécu, 2013).

How specific aspects of care and support are organised

The provision of care and support is addressed by national policies in the area of residential and home care.  This covers standards of care and support, continuity of care and support, interdisciplinary cooperation and coordination, staffing levels, the promotion of well-being and autonomy, the respect of individuality and cultural diversity, the involvement of people with dementia in decisions about care and support.

Types of care

  • Day care

The long-term care insurance – dependency insurance covers specialised day care.

In the case of home care, in-kind and cash allowances can be combined so the beneficiary gets optimal care. This is referred to as mixed or combined allowances.

The dependency insurance stipulates the following; basic life activities: 24.5 hours per week, 38.5 hours per week in exceptional situations, support activities: 14 hours per week, housework activities: 2.5 hours per week with another 1.5 hours for exceptional housework activities.

  • Palliative care

Palliative care in hospitals is covered by the national health insurance, under the hospital budgets. The law concerning palliative care, advance directives and end-of-life care was voted in 2009.

Extra-muros (outside hospital) palliative care is covered by the dependency insurance. It concerns support and care in activities of daily life, support for house-keeping, an allowance for the purchase of necessary cleaning and care products. Medical and therapeutic care is covered by the national health insurance.

Since 2004, the Ministry for the Family and Integration provides financial support for palliative care at home, on the basis of a convention (Ministry of Health, 2013).

Today, the average cost of palliative care per beneficiary for the dependency insurance is EUR 6,207 euros.  The average daily cost paid by the dependency insurance is EUR 154.96. The Ministry for the Family and Integration and the national health insurance contribute another EUR 150 and the national health insurance pays for the GPs, nursing care and physiotherapy. However, it is not always easy to say if this support is always linked to end-of-life care.

The Hëllef Doheem Foundation and the Help network, have created specialised units for the delivery of palliative care at home:

Home adaptations

Home adaptations are covered by the dependency insurance. The first law of November 1999 laid out the modalities and limits to support home adaptations. Since 2007, the formalisation of the procedure aims at finding optimal and functional solutions for the beneficiary.

The support of the dependency insurance can only be granted with a view to maintain the individuals in their home (article 23 of the December 2006 law). Home adaptations can be supported up to EUR 26,000 (Kerger, 2013).

Training

Which social and healthcare professionals provide care and support

The following social and healthcare professionals are involved in the provision of care and support to people with dementia in residential care or living at home.

Social or healthcare professional

Involved in the provision of care and support to people with dementia in residential care or at home

Nursing staff

Yes

Auxiliary staff

Yes

Allied health professionals

Yes

Specialists (e.g. psychiatrists, gerontologists, neurologists)*

Yes

General practitioners*

Yes

Other

Yes (psychotherapists)

* 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).

The type of training that social and healthcare professionals receive

The training of social and healthcare professionals is not covered by any healthcare or social policies. The national dementia strategy that was that was adopted in March 2013 includes a measure that will evaluate the continuous training needs of the professionals in various settings (long-term nursing homes, hospital settings) (Ministry of Health, Ministry of the Family and Integration, 2013).

How the training of social and healthcare professionals is addressed

The training about dementia for social and healthcare professionals is at the discretion of the establishment where these professionals work. In general, the nursing staff, auxiliary staff, social sector professionals and allied professionals such as language therapists, physiotherapists, dieticians and podiatrists do receive some training.

The training of social and healthcare professionals employed in residential or home care settings also depends on the establishments where these people work.  They receive specialised knowledge about dementia, basic/elementary knowledge about dementia, training about the care and support of people with dementia as well as palliative or end-of-life care training.

The training of healthcare professionals is in the form of continuous training for the staff and other people working in the domain of care.

Support for informal carers

Respite

All the daily activities organised to care for a dependent person also seek to provide respite care to the informal carer.

Nuetswaach, an experimental project, carried out by the Hëllef Doheem Foundation in collaboration with the Evaluation and Orientation Body between March 2011 and February 2012, sought to provide respite care to the informal carers by organising a night watch of the dependent person (Ministry of Health, 2013).

Since then, a measure of the national dementia strategy includes the possible introduction of a new item under the dependency insurance, namely a night watch.

Another measure of the national dementia strategy is awareness-raising amongst informal carers about existing respite care support.

Counselling / support

With the introduction of the dependency insurance, support groups have been set up all over the territory. The Hëllef Doheem Foundation and the Help network organise support groups to help informal care for the affected family member.

A measure of the national dementia strategy is to provide information accessible to a wide public about the various forms of dementia and the existing care support. With the support of new communication technologies, this measure should reach out to the carers of people with dementia.

Case management

Another measure will seek to evaluate the information, orientation and counselling needs of people with dementia and their carers. A contact point would be identified to help the family to navigate the system.

Alzheimer Association

The Alzheimer Association of Luxembourg provides the following services and support:

Helpline

x

Information activities (newsletters, publications)

x

Website

x

Awareness campaigns

x

Legal advice

x

Care coordination/Case management

x

Home help (cleaning, cooking, shopping)

 

Home care (personal hygiene, medication)

 

Incontinence help

 

Assistive technologies / ICT solutions

 

Tele Alarm

 

Adaptations to the home

x

Meals on wheels

 

Counselling

x

Support groups for people with dementia

x

Alzheimer cafes

x

Respite care at home (Sitting service etc)

 

Holidays for carers

 

Training for carers

x

Support groups for carers

x

Day care

x

Residential/Nursing home care

x

Palliative care

x

References

Insight Santé Sécu (2013). Informations du ministère de la Santé et du ministère de la Sécurité sociale.Accessed on November 2013 at: http://www.mss.public.lu/publications/infoletter/il027/il_201301.pdf

Kerger A. (2013).L’assurance dépendance et le financement des soins de longue durée au G.D de Luxembourg. Presentation made during the visit of the SSMG in Luxembourg on 31 May 2013.

Ministère de la Sécurité Sociale (2013).Bilan sur le fonctionnement et la viabilité financière de l’assurance dépendance.

Ministry of Health, Ministry of the Family and Integration (2013). Demenz. Rapport final du Comité de pilotage en vue de l’établissement d’un plan d’action national « maladies démentielles » tel qu’approuvé par le Conseil de Gouvernement en date du 13 mars 2013. Accessed online on November 2013 at: http://www.sante.public.lu/publications/rester-bonne-sante/sante-mentale/plan-action-national-maladies-dementielles/plan-action-national-maladies-dementielles.pdf

Acknowledgements

Andrée Kerger, Cellule d'Evaluation de l'Assurance Dépendance

Alain Tapp, Association Luxembourg Alzheimer

 

 
 

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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