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Germany

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

Background information

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

Generally it is said that two thirds of people with dementia live in private households. A small proportion (most of them with beginning dementia) is living alone.

At home (with relatives or close friends)

Yes

Most of them with carers as partners and family members, a part with help of ambulant services

At home (with other people with dementia)

Yes

During the last ten years special “Wohngemeinschaften für Menschen mit Demenz” developed (especially in Berlin and Brandenburg). See definition below.

In general/non-specialised residential homes

Yes

 

In specialised residential homes for people with dementia

Yes

 

In general/non-specialised nursing homes

Yes

Those who do not live in private households mostly live in nursing homes (“Altenpflegeheime”). Most of them are not specialised and care for people with and without dementia. More and more nursing homes have special units for people with dementia (some are called “Hausgemeinschaften”).

In specialised nursing homes for people with dementia

Yes

 

In hospitals, special wards or medical units

Yes

Only a few people with dementia live in hospitals.

In psychiatric establishments

Yes

Only a few people with dementia live in psychiatric establishments.

 

A „Wohngemeinschaft“ is a big (private) apartment where 8 to 12 people with dementia live together and are cared for by an ambulant service (this does not have the status of a nursing home. Further information in German can be found at:  http://www.deutsche-alzheimer.de/fileadmin/alz/pdf/factsheets/FactSheet13_02.pdf. There are no official statistics but it is estimated that there are 1,000 Wohngemeinschaften for 8 to 12 people in Germany.

General/non-specialised residential homes such as “Altenheime” and, more extensively, “Seniorenresidenzen” are usually designed for a comfortable life of older people but not for care. There are no statistics but probably only a very small number of people with dementia live in such places.

With regard to general/non-specialised nursing homes, the results of epidemiological studies in “Altenpflegeheimen” suggest that two thirds of the residents have dementia (Weyerer and Bickel, 2007). Based on a probability sample of 609 long-term care institutions in Germany, a sample of 86 facilities was drawn by applying a two stage random procedure. Of the 4,481 residents assessed in 58 care facilities (mean age 82.6 years; 78% female) on average 68.6% were affected by a dementia syndrome and 56.6% by a severe dementia-syndrome Schäufele, et al., 2013). The researchers concluded that people with dementia form the major group of residents in German nursing homes”.  

The ratio of staff to residents (”Personalschlüssel” – the personnel quota) differs from one federal state to the next and depends on the care-level. In Baden-Württemberg, it is:

  • Nursing and care staff in relation to people with care needs. At least half of the staff have to be registered nurses (Pflegefachkräfte):
    • Care level I: 1:3.96 to 1:3.13
    • Care level II: 1:2.83 to 1:2.23
    • Care level III: 1:2.08 to 1:1.65
  • For the care of people with care needs, who in addition have dementia, the following ratios apply:
    • Care level I: 1:2.38
    • Care level II: 1:1.70
    • Care level III: 1:1.25

The organisation of care and support for people with dementia

The overall organisation of care and support

In Germany, the long-term care law (Pflegeversicherungsgesetz) is applicable to people in need of care (regardless of whether they have a physical or psychiatric condition or are young or old). An assessment determines whether someone needs care based on the definition in the law. People can choose between “Pflegegeld” (money which they can use themselves) and the use of outpatient services or, if necessary, of care in a nursing home. The amount paid by care insurance, depending on the level of care (i.e. 1, 2 or 3), only covers part of the real costs.

The long-term care insurance (LTCI) is primarily orientated towards somatic health problems. The system is not geared towards the needs of people with geronto-psychiatric diseases. It does not meet the special needs of people with Alzheimer’s disease i.e. supervision, motivation, activation, instruction/support though there have been some improvements since January 2013 (especially with regard to those without a care level but with a special need for supervision who can now get services from LTCI).

Many services and many nursing-homes do not respond to the needs of people with dementia even though a high percentage of their clients are people with dementia. Furthermore, there is a lack of information about existing services and how to get money or services from the LTCI.

Nursing homes are regulated by the laws of the federal states. Their laws about “living and care in institutions” are all somewhat different. The care in nursing homes is controlled by the “medical service” of the care insurance. 

In Germany there were, at end of 2011, more than 10,700 nursing homes with 723,000 residents. 54% belong to non-profit organisations like Caritas, Diakonie, the Red Cross, 40% are private and 6% belong to the municipality (Statistisches Bundesamt 2013).

There is a relatively small but growing number of provisions for people with dementia and carers from ethnic minorities. Most are for Turkish people. In Berlin, for example, the “AWO Landesverband” offers information days in Turkish and publishes ‟The 10 warning signals for Alzheimer’s disease” in Turkish. There are also special outpatient services in the Berlin region specifically for Turkish people but they are not greatly used as they are not known about. The organisation also tries to reach Muslims through the mosques. In Gelsenkirchen, there is a dementia service centre for migrants, which offers counselling, literature and special sport programmes. Other organisations providing assistance to immigrants have developed guidelines on how to care for older immigrants in a way that respects their cultural background. Further details can be found in Alzheimer Info 2/2006 published by the Deutsche Alzheimer Gesellschafte.V. For people with early-onset dementia it is difficult to find suitable services because most services are designed for people over 65 years of age. It is the same for people with fronto-temporal dementia.

How specific aspects of care and support are addressed

Several aspects of care and support are addressed in national policies.

  • Expert standards exist covering different themes (e.g. nutrition, prevention of decubitus). Information in German can be obtained at:

http://www.wiso.hs-osnabrueck.de/dnqp.html

  • The Medical Service of Health Insurances (Medizinischer Dienst der Krankenkassen) and the “Heimaufsicht” (a supervisory authority for nursing homes) of federal states are responsible for the control and monitoring of care and support.
  • Needs assessment is governed by the Medical Service of Health Insurances.
  • Access to support is governed by the “Pflegestützpunkte“ („Pflegeberatung der Pflegekassen“ according to § 7a SGB XI (Care insurance law).
  • The „Heimpersonalverordnung“ (regulation on staff in nursing homes) regulates the proportion of qualified staff in nursing homes.
  • The Deutsches Zentrum für Neurodegenerative Erkrankungen (German Centre for Neurodegenerative Diseases) and universities are doing research into care and support ("Versorungsforschung").
  • Funding and control bodies for care and support are partly governed by the Ministry for Research or the Ministry of Health or the Ministry for Senior Citizens.
  • The acquisition of communication skills with patients is part of healthcare professionals’ training and is not regulated at national level.
  • Complaint procedures are governed by the „Heimaufsicht“ of the federal states. 
  • The promotion of well-being and autonomy, as well as respect for individuality and cultural diversity, are covered by the “Charta der Rechte pflegebedürftiger Menschen“ (Charter for the Rights of People with Care Needs).
  • People with dementia are involved in decisions about care and support via legal instruments such as advanced directives (“Betreuungsverfügung“, „Patientenverfügung”.

 

There are numerous regulations concerning care and support which can be found in the German care insurance law (Sozialgesetzbuch XI).

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. Nursing carers (Krankenpflege) and carers of older people (Altenpflege)

Auxiliary staff

Yes

Allied health professionals

Yes

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

Yes, insofar as they are responsible for the prescription of ergotherapy etc. 

General practitioners

Yes, insofar as they are responsible for the presciption of ergotherapy etc.

Other

Yes. Social workers

The type of training that social and healthcare professionals receive

The official qualifications for nursing staff are usually obtained after 3 years’ study. For auxiliary staff, there are different training courses, partly licensed by the federal state. These courses have different titles and their duration also differs. With regard to social sector professionals, in some universities for social work, dementia is included in training,  but it is not known to what extent. The same applies to the training of allied health professionals.

The Law on Professions in the Care of Older People (“Gesetz über die Berufe in der Altenpflege“) is a law at national level which defines general standards. No reference is made to dementia. The content of education itself is managed at federal state level and covers a wide range of themes. The curriculum is vast and it is therefore difficult to make general statements. However, the training of auxiliary staff is likely to include basic knowledge about dementia, care and support of people with dementia and the behavioural and psychological symptoms of dementia.

Support for informal carers

The following support for carers is addressed or covered by national policies:

Respite

Respite care is addressed in the context of the long-term care insurance. It entitles carers to € 1,550 per year to pay for a substitute carer (“Verhinderungspflege”, § 39 SGB XI), day-care (§ 41 SGB XI) between € 450 and € 1.550 per month (depending on care-level) and short-term care (§ 42 SGB XI) up to € 1.550 per year. Further details in German are available from the Deutsche Alzheimer Gesellschaft (2013). 

Training

Training is addressed in the long-term care insurance (§ 45 SGB XI), according to which carers can participate in courses concerning physical and social care.

Consultation/involvement in care decisions

Consultation/involvement in care decisions seems to occur but is not part of legislation.

Counselling/support

Counselling/support is addressed in the long.term care insurance (§ 7 SGB XI).People in need of care and their family carers are entitled to couselling, especially by ‟Pflegestützpunkte" (care consulting centres).

Case management (insofar as this relates to care)

Case management (insofar as this relates to carers) is also addressed.in the long-term care insurance (§§ 7, 92). In fact case management is poorly financed. 

Other

The law on Family Care Time (Familienpflegezeitgesetz, 2012) covers release from work to care for somebody for a limited period of time.

The support of carers is mainly covered by the care insurance law.

National Alzheimer Association

The German Alzheimer Association 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

 

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

x

Alzheimer cafes

x

Respite care at home (Sitting service etc)

x

Holidays for carers

x

Training for carers

x

Support groups for carers

x

Day care

x

Residential/Nursing home care

 

Palliative care

 

References

Deutsche Alzheimer Gesellschaft. (2012).Informationsblatt 1: Das Wichtigste.Die Epidemiologie der Demenz.   Can be downloaded at: http://www.deutsche-alzheimer.de/fileadmin/alz/ pdf/factsheets /FactSheet01_2012_01.pdf

Deutsche Alzheimer Gesellschaft (2013).Informationsblatt 8: Die Pflegeversicherung. Can be downloaded at:  

http://www.deutsche-alzheimer.de/fileadmin/alz/pdf/factsheets/FactSheet08_2013.pdf

Schäufele, M, Köhler, L., Hendlmeier, I., Hoell, A. &Weyerer, S. (2013). Prevalence of Dementia and Medical Care in German Nursing Homes: a Nationally Representative Survey.PsychiatPrax,  40, 4, 200-206

Statistisches Bundesamt (2013).Pflegestatistik 2011. Pflege im Rahmen der Pflegeversicherung. Deutschlandergebnisse. Statistisches Bundesamt

Weyerer, S. and Bickel, H. (2007).Epidemiologie psychische Erkrankungen im höheren Lebensalter. Stuttgart: Kohlhammer

Acknowledgements

Sabine Jansen, Executive Director, Deutsche Alzheimer Gesellschaft

Hans-Jürgen Freter, Information Officer, Deutsche Alzheimer Gesellschaft

 

 
 

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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