Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Germany
Long-Term-Care Insurance (“Pflegeversicherung”), hereafter referred to as LTCI, is a relatively new branch of the German social insurance system. It came into effect on 1.1.1995 for home care and on 1.7.1996 for long-term institutional care. There was an important amendment in 2001 (PfLEG). All members of the statutory Health Care Insurance (HCI) are automatically covered by the LTCI. It is designed for all who need care because of disabilities or chronic diseases, independent of age. About 2 million people are entitled to it. 85% of them are over 60 and most of them need care because of dementia.
The German system is characterised by a division between health care insurance (which covers medical cure, diagnosis, treatment, medical care such as injections and the care of people who are bed-ridden) and long-term care insurance (which covers long-term home and residential care). The two systems sometimes enter into conflict with each trying to reduce its costs.
The organisation of social support for people with dementia and carers
The Bundesministerium für Familie, Senioren, Frauen und Jugend (Federal Ministry for Family Affairs, Senior Citizens, Women and Youth) and the Bundesministerium für Gesundheit (Federal Ministry for Health) are responsible for the legal framework of social support to people with dementia. Actual social support services are commercial or organised by traditional non-profit organisations (Wohlfahrtsverbände) like “the Red Cross”, Diakonie, Caritas and others, which operate on a nation-wide basis. Some services are communal. Some of the projects of the Deutsche Alzheimer Gesellschaft (e.g. telephone help-line; production of information materials) are funded by the Federal Ministry of Senior Citizens etc. Other projects are funded by the Health Care Insurance. This is also the case for regional Alzheimer Associations.
Access to benefits under the LTCI is not determined by a specific diagnosis but by the level of care needed and benefits are given to the person who needs them, not the carer. The person in need of care can choose between private care and professional care, including care at home, day care at a centre and nursing home care. He/she can also decide whether to receive cash benefits which can be used to pay for services, even from relatives, or benefits in kind (i.e. non cash benefits) from professional service providers (known as “Sachleistung”). A combination of the two is also possible.
To be eligible, the person in need of care must be evaluated by the medical service of the statutory HCI (MDK) at home. The person’s current capacities are assessed by means of medical examinations, ADL codes and guidelines for the assessment process. Moreover, there must be a substantial need for care for at least 6 months in the following areas: personal hygiene, eating and preparing food, mobility (e.g. getting in and out of bed) and housekeeping.
There are three levels/categories of care (known as Pflegestufen):
- Level I (erheblich pflegebedürftig): considerable care needs - 90 minutes, including at least 45 minutes of basic care.
- Level II (schwerpflegebedürftig): severe care needs – 3 hours, including at least 2 hours of basic care.
- Level III (schwerstpflegebedürftig): extreme care needs – 5 hours, also at night, including at least 4 hours of basic care.
- In addition, there is fourth level, known as “special hardship” for which 7 hours of care are needed.
The overall funding of social support for people with dementia and carers
HCI and LTCI are obligatory for everybody, except those who are self-employed. Everybody has to pay a certain amount of their income (up to a limit). For the LTCI, employees pay 1.7% of their gross income and there is an income limit of €3,200. This amount is taken directly from their wages by the employer and transferred to the LTCI fund. Social welfare is financed by taxes and is means tested. Costs for long-term care (except medical care) are only partly covered by the LTCI (according to SGB XI). It is allowance based and not intended to fully cover costs. “Hotel costs” in nursing homes (costs for apartment and meals) are not covered. In addition, home care (provided by families) is where possible given priority over institutional care. Cash and in-kind benefits for care at home and in a nursing home are as follows:
Table 1: cash payments and in-kind benefits under the LTCI
Cash payments for home care
Professional services at home
Nursing home care
The legal framework surrounding the provision of social support
The most important acts and laws surrounding the provision of social support in Germany can be found in the volumes of the Sozialgesetzbuch (the “Social Code”), hereafter referred to as SGB:
- Sozialgesetzbuch (SGB) Fünftes Buch (V). Gesetzliche Krankenversicherung (SGB V) from 20.12.1988, last amendment 22.12.2006 (Statutory Health Care Insurance) (HCI)
- Sozialgesetzbuch (SGB) Neuntes Buch (IX). Rehabilitation und Teilhabe behinderter Menschen (SGB IX) from 19.6.2001, last amendment 2.12.2006. (Law on rehabilitation and participation of people with personal incapacity)
- Sozialgesetzbuch (SGB) Elftes Buch (XI): Soziale Pflegeversicherung (SGB XI) from 26.5.1994, last amendment 5.12.2006 (Long-term Care Insurance) (LTCI)
- Sozialgesetzbuch (SGB) Zwölftes Buch (XII): Sozialhilfe (SGB XII) from 27.12.2003 (Social assistance, welfare)
Important general reforms are underway, namely:
- the Health Care Insurance (reform underway since April 2007). It includes better rights for “geriatric rehabilitation”. The consequences for people with dementia are as yet unclear.
- the Long-Term Care Insurance (probably for 2008)
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
The 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. 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.
People living in rural areas
There are deficits in rural areas.
People from ethnic minorities
There are only a few 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. Other organisations providing assistance to immigrants have developed guidelines on how to care for elderly immigrants in a way that respects their cultural background. Further details can be found in Alzheimer Info, Ausgabe 2/06 published by the Deutsche Alzheimer Gesellschaft e.V.
Younger people with dementia and people with different types of dementia
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.
Services and support for people with dementia and their carers
Types of care
Day care centres exist but there are not enough and only some of them are suitable for people with dementia. Moreover, there are big regional differences and day care is expensive (€50 to €100 per day). The cost of day care is covered by the LTCI (§ 41 SGB XI) but only at the level of “Pflegegeld” for which there are three levels: I: €205, II: €410 and III: €665. Some of the costs may also be covered by Social Assistance.
“Night care” is mentioned together with day care in § 41 SGB XI: the patient lives at home and spends some hours at night in a special centre. However, this service does not exist in Germany.
Sitting services have to be paid out of pocket or using “Pflegegeld” from the LTCI. Those who choose money from the LTCI (“Pflegegeld”) can use it to pay for respite care in the home. There are commercial services (“Pflegen Daheim”) which provide care for 24 hours a day in the home, but they are expensive (about €100/day). There are also voluntary services which visit people at home for a few hours once or twice a week.
Short-term residential respite care for people with dementia exists but there are not enough places and those that are available are often inadequate. It is partly funded by the State through the LTCI (§ 42 SGB XI on short-term care) and partly by service users. People are entitled to up to 4 weeks per year (this is called “Kurzzeitpflege”) for which costs of up to €1,432 per year are refunded. Short-term residential care costs about €100 per day.
There are about 8,000 long-term care institutions in Germany. Very few offer specialised care for people with dementia although some have special units for people with dementia and some offer special care throughout the day. The conscientiousness and qualifications of the personnel have improved over the last years. Nevertheless, most long-term care units do not provide the necessary care. This is often due to staff shortages. Long-term residential care is funded by a combination of the LTCI, the service user and if necessary, social assistance. The LTCI pays, according to the different care-levels (“Pflegestufen”), I: €1,023, II: €1,279 or III: €1,432. This only covers a part of the costs which are between €1,800 and €3,200 per month. There are big regional differences.
There are only a few services in Germany offering palliative care in the home. Traditionally, they are specially designed for patients suffering from cancer. The Deutsche Alzheimer Gesellschaft and Hospiz Gesellschaft have together developed a curriculum for hospice volunteers. Palliative care in the home is partly funded by the State and partly by service users (according to § 39a of the HCI - SGB V). The reform of the HCI proclaims a right for patients to palliative care but this has not yet been put into practice.
Palliative care in palliative care centres or units is not normally available (unless the person with dementia also suffers from a somatic disease). One reason for this is that with dementia (unlike with cancer), it is difficult to define what actually constitutes the end of life. Consequently, the HCI does not pay at all.
Monitoring in the home via alarm systems
There are different organisations which provide monitoring/tele-alarm systems in the home but some people with dementia are not able to understand and use such services. The State does not provide funding for this kind of service as tele-alarm systems are not included in the official catalogue of assistive devices (the “Hilfsmittelkatalog”). Service users have to pay for it themselves and it usually costs about €20 per month.
General supervision and additional care
In 2002, the SGB XI was amended (Pflegeleistungs-Ergänzungsgesetz, § 45 a,b,c SGB XI) thereby making it possible for people with dementia to obtain additional benefits subject to the fulfillment of certain conditions. According to §45a, people with dementia, a cognitive handicap and mental diseases who have care requirements of level I, II or II, who are living at home (not in a nursing home) and who find themselves restricted in the their daily lives (due to cognitive problems and inability to plan and structure the day, resulting in dangerous situations) are entitled to general supervision and additional care services.
According to §45b SGB XI, an additional amount of €460 per year can be used for:
- Day and night care
- Short-term care
- Outpatient care (but not for basic care and housekeeping)
- Easily accessible forms of support (“niedrig-schwellige Betreuungsangebote”) like groups for patients (“Betreuungsgruppen”) and visiting services by trained volunteers.
Personal assistance and home help
Assistance with personal hygiene
Outpatient services which provide assistance with personal hygiene (e.g. bathing, washing hair, cutting nails, shaving etc) are available throughout the whole of Germany. Unfortunately, the people providing these services are often not qualified to work with people with dementia and very often, people with dementia are not given the time they need. Assistance with personal hygiene is partly funded by the State through the LTCI and partly by service users. The LTCI only covers part of what people with dementia really need. It does not pay for the actual time needed.
Supervision/assistance taking medication, eating and drinking and with mobility
Supervision/assistance taking medication is completely funded by the HCI and this is considered sufficient.
Assistance eating and drinking is partly funded through the LTCI but people with dementia are often not given the time they need.
Assistance with mobility (e.g. lifting, moving and walking) is available under the LTCI but only in the context of care. This means that walking for recreational or social purposes, for example, would not be covered by the LTCI.
Assistance dealing with incontinence and skin care
Services exist to provide assistance dealing with incontinence but there is often not enough knowledge about incontinence and promoting continence. The HCI pays for continence pads. The changing of incontinence pads etc. is part of the services financed by the LTCI. Assistance with skin care is available and partly funded through the LTCI.
Companionship/social activities and occupational therapy
Companionship/social activities are funded up to maximum of €460 through the LTCI (§ 45). There are groups of volunteers who are trained to help people with dementia, groups for people with dementia run by volunteers (known as Betreuungsgruppen) and visiting services, but these are not available throughout the whole country.
Occupational therapy/ergotherapy is funded through the HCI. Unfortunately, therapists often lack the necessary knowledge of how to deal with people with dementia. To be eligible for this service, it is necessary to have a doctor’s prescription (as is the case for physiotherapy).
Assistive devices and home transformation/adaptation
Assistive devices are available but this service is often insufficient. Devices are partly funded by the State and partly by those who need them. The HCI pays for continence pads, wheelchairs and other items listed in the “Hilfsmittelkatalog” (the catalogue of assistive devices). A doctor’s prescription is necessary.
Under the LTCI (§ 40 SGB XI), home transformations/adaptations can be refunded up to a limit of €2,557 per year. Service users must pay the rest themselves. This service is probably insufficient as many people do not know about it.
Assistance with housework
Assistance with housework is covered by the LTCI provided that the potential service user has been classed as being in need of care according to the criteria of the LTCI i.e. that he/she needs assistance with eating and drinking, personal hygiene and mobility. The LTCI only covers part of the cost.
Assistance with the preparation of meals (including meals-on-wheels)
Assistance with the preparation of meals and with eating is available on an outpatient basis but there is often not enough time. This is funded by the LTCI.
Some private firms and organisations like the Red Cross also deliver food to the home but do not help service users to eat it. People with dementia often do not know what to do with it. This service has to be paid for privately.
Assistance with shopping and laundry
The LTCI partly funds assistance with shopping and laundry services (both of which are classed as part of housework known as “hauswirtschaftliche Verrichtungen”) but as with assistance with housework only if the potential service user is in need of care according to the terms of the LTCI. Commercial laundry services can be found all over Germany.
Transportation to hospital or to the doctor’s for those who are ill is funded by the HCI (according to SGB V - Krankentransport). Special transportation services exist for those who are recognised as handicapped (according to SGB IX - Schwerbehinderung). These services are financed by the local communities (SGB IX). The Deutsche Alzheimer Gesellschaft considers this service insufficient, especially in rural areas.
Psychosocial support and training for people with dementia and carers
There are different information services which are funded by the State or NGOs. For example, there are 103 Alzheimer Associations and many counselling services for families, carers or older people which also do counselling in cases of dementia. However, there are not enough and those providing this kind of service are often not qualified to deal with people with dementia.
Counselling for people with dementia and carers
Counselling for people with dementia exists but is insufficient. It is partly funded by the LTCI. There are support groups (“Betreuungsgruppen”) but individual counselling and group therapy for people with dementia are not normally available.
Alzheimer organisations, other organisations and small local self-help groups offer counselling and support groups for carers. Groups are sometimes funded by the HCI (funding of “self help groups”) or the communities.
Holidays for people with dementia and carers
There are some possibilities for holidays for people with dementia and their carers, some with volunteers but this is not sufficient. Most are organised by Alzheimer associations and are partly funded by the LTCI (“Verhinderungspflege”).
Under the LTCI (§ 39 SGB XI - “Verhinderungspflege”), people with dementia are entitled to €1,432 per year to pay for a substitute carer, if the normal carer is not available because of illness, vacation etc. With this money another informal or professional carer (but not a close relative) can be paid. According to the Deutsche Alzheimer Gesellschaft, this amount of money only covers costs for about 2 weeks.
Training for carers
The HCI provides training for carers (“Pflegekurse”) which mostly concentrates on somatic care. Two years ago, the Deutsche Alzheimer Gesellschaft (in cooperation with Janssen-Cilag) set up a special programme for carers of people with dementia (“Hilfe beim Helfen” CD-ROM). It benefits from collaboration with one Health Care Organisation (Barmer Ersatzkasse) which funds the costs. Carers can benefit from up to €460 worth of training per year under the LTCI (§45 SGB XI). Most of these courses are organised by local Alzheimer Organisations. They get the money (up to €460 per participant) directly from the Health Care Organisation.
Work/tax related support for people with dementia
People with dementia are not entitled to any particular protection if in paid employment solely on the basis of a diagnosis of dementia. However, if it becomes clear that they have some form of personal incapacity (“Schwerbehinderung”), then they are covered by the law SGB IX which gives them better job security and more days’ paid leave.
The law SGB IX and the Law on Income (“Einkommenssteuergesetz”) entitle people with dementia to tax benefits on the grounds of their personal incapacity. The Law on Income also entitles them to tax refunds/incentives for employing a person to provide home care services. This falls into the category of special hardship (“besondere Belastungen”).
As mentioned in previous sections, people with dementia may be entitled to cash payments under the LTCI (SGB XI) which they can use to pay for services. This is based on their incapacity and the resulting needs rather than on their diagnosis of dementia. They may also be eligible for financial assistance to pay for home transformations under the LTCI.
People with dementia are legally entitled (SGB IX) to reductions on television and radio licences as well as reductions on public transport but only on the basis of their incapacity (not because they have dementia). From a degree of incapacity of 50 upwards and a walking incapacity local public transportation is free.
Work/tax related support for carers and carer allowances
Carers are not legally entitled to paid or unpaid time off work to care for someone with dementia or to flexible working hours (although they may be able to make a private arrangement with their employers).
According to § 44 of the Law SGB XI, people who provide at least 14 hours’ care per week and who work no more than 30 hours per week are entitled to subsidised pension fund contributions from the State. For example, if a carer reduces his/her working hours from 40 to 20 per week, the LTCI pays for 20 hours into the pension fund.
Although carers are not entitled to payment for the care they provide, they are entitled to a deduction of €946 on their income provided that the person with dementia does not receive money from the LTCI. This is covered by the Law on Income (“Einkommenssteuergesetz”).
Unless otherwise stated, information provided by Hans-Jürgen Freter (Deutsche Alzheimer Gesellschaft) in June 2007
- Bundesministerium für Familie, Senioren, Frauen und Jugend (2005). Möglichkeiten und Grenzen selbstständiger Lebensführung in Privathaushalten (MuG III).
- Bundesministerium für Familie, Senioren, Frauen und Jugend (2002). Vierter Bericht zur Lage der älteren Generation. Deutscher Bundestag
- Deutsche Alzheimer Gesellschaft (2007). Leitfaden zur Pflegeversicherung.
- Deutsche Alzheimer Gesellschaft (2005). Ratgeber in rechtlichen und finanziellen Fragen.
Last Updated: mercredi 15 juillet 2009