Social support systems
Organisation and financing of social support to people with dementia and carers
The organisation of social support for people with dementia and carers
According to legislation on communal social services, each commune is responsible to enable those in need of support to continue living at their own homes for as long as possible, in case of social problems. Support for people with dementia and their carers is based on this principle: to help people live in their own homes for as long as it is reasonable to do so. Direct services to private homes are mainly of two kinds, i.e. homecare, supplied and financed by the state, and home services, supplied and partly financed by the commune, and partly financed by the recipients of the services. The main difference is that while homecare relies on medical needs, and includes assistance in the handling of medicine, home services mainly address social needs, such as running a home. Far too little money, however, is allocated to these services, which is evident, for example, from the low salaries and the subsequent continued lack of staff. Thus people often do not receive the services that they are entitled to by law. An effort is being made to provide daycare for those who in need in specialised daycare centres, with 12 to 20 residents in each centre. They have been highly praised. Reports show that carers generally appreciate the day care centres and find care homes and hospitals to be lacking in spirit and comparison. The day care centres are mostly funded by the state (Public Insurance) with day fees, but communes and carers also share the costs.
Recently, a certain change of attitude has occurred with regard to services for people with dementia. Day care centres have been growing in number at an increased rate recently, and plans have been made for many new care homes. The Ministry/organisation responsible for social support to people with dementia/dependent elderly people is Félagsmálaráðuneytið .
In Iceland, a substantial portion of what in other countries counts as social services belongs to the Ministry of Health, e.g. the Public Insurance offices which handle all financial support and grants offered in social circumstances, due to ill health, as well as handling payments of the state’s share in medicine and care. The new government has pledged to transfer all matters concerning financial support and insurances to the Ministry of Social Services. These changes are currently underway.
The state and communes are responsible for running nearly all social and medical services in Iceland. However, due to a rather strong tradition, independent associations run care homes and day care homes for the elderly, and now day care centres for people with dementia. Private enterprise also exists in the domain of health care and is increasing. The main rule concerning these private service providers is that once permission has been granted for a privately run care home or day care centre, the state will grant the association or private enterprise comparable funding to what it grants its own institutions in the same domain. Authorisations and/or contracts about the state’s share also include clauses on reliability. The grant depends on the quality of the services provided and user fees not exceeding a certain amount.
The overall funding of social support for people with dementia and carers
Public social support is mostly funded through general taxation. There are exceptions to this rule in that all taxpayers, for example, are obliged to pay a fixed sum to the Management Fund of Elders, which is supposed to directly support the construction of services for the elderly.
FAAS is the only organisation in Iceland that focuses on dementia. Direct state support to FAAS has been negligible. FAAS receives no regular public funding and all attempts to apply for such have been refused. However, FAAS receives an annual grant from parliament, for which the association has to re-apply each year. The grant is insubstantial and totally inadequate compared to the extent of the problem of dementia or the association’s activities.
The legal framework surrounding the provision of social support
No legislation has been made in Iceland concerning people with dementia in general or Alzheimer patients in particular, but social service legislation, public insurance legislation and legislation on matters concerning the elderly all touch upon services needed by and available to people with dementia. Such legislation relies on constitutional clauses on human rights, which again rely on the European Convention on Human Rights, which has been signed by Iceland.
The four laws which most directly concern people with dementia are:
Lög um málefni aldra ð ra (125/1999 came into force on 11 January 2000) Law on Matters Concerning the Elderly .
Lög um almannatryggingar (117/1993 came into force on 1 January 1994) Law on Public Insurance . This legislation was republished in 2007 with various changes and clauses made and added since, as Law no. 100/2007, valid since 30 May 2007 – A recently elected government has declared that the law on public insurances will be thoroughly re-examined. The President of the State Public Insurance offices, Karl Steinar Guðnason, who is responsible for the application of this legislation, has described the current law as “rags so often stitched and patched, that they barely hold.“
Lög um félagslega a ð sto ð (118/1993 came into force on 1 January 1994) Law on Social Support . Republished in 2007 as Law no. 99/2007, on 11 May 2007, without a complete overhaul, valid since 30 May 2007.
Lög um félags þ jónustu sveitarfélaga (40/1991 came in force 17 April 1991) Law on communal social support
A new government was formed in spring 2007 consisting of a coalition between the Independence Party (conservatives) and the Alliance (social democrats). As elections approached, issues concerning the elderly and people with dementia were quite broadly covered and discussed, along with issues concerning the disabled. Many promises of reform were made in these domains. They are reflected in the government’s policy statement and its declarations about a total reform in the support systems for the elderly, sick and disabled. The work has formally begun, but it is as yet too soon to say where it will lead.
It is worth mentioning, however, that the new minister of social services has the support and trust of associations of patients, disabled people and the elderly, and has been known for a long time for her concern about these groups and their issues. She is familiar with issues linked to dementia.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
Law and regulations do not differentiate services on the basis of particular diseases or ailments, but aim to provide services for each person according to his or her needs. The LSH Dementia Reception at Landakot, Reykjavík, plays a vital role in prioritising patients and allocating them places and services. The main criterion is an evaluation carried out by a team of doctors, psychiatrists, nurses and social workers. The outcome of a the RAI evaluation is decisive with regard to assigned care and nursing. However, the services offered are scarce, specialists and specially trained staff are lacking, as well as staff in general, which has led to long waiting lists and some services which should be provided not being available at all.
Politicians and adminstrations tend to emphasise the creation of general rather than specialised services. In Iceland, in recent years, nursing places for the elderly have increased in number, but do not respond to the specific needs of people with dementia. Home services and home care are provided, but staff are neither prepared nor taught about the specific needs of people with dementia or their carers. Furthermore, staff are not allocated solely for services to people with dementia. Providing people with dementia with special services, other than those that their general health situation demands, is still merely a matter of discussion.
General services are rather good, but specialised services, other than day training centres and nursing places, are virtually non-existent.
People living in rural areas
In the urban area in and around Reykjavík services for people with dementia have grown much faster than in rural areas. There are, for example, no specialised day training centres for people with dementia outside the Reykjavík area, nor any clinics specialised in analysing dementia (dementia receptions), and residential respite care is only offered in the capital city. Many smaller municipalities show great determination to assist people with dementia and their carers more thoroughly than they do today, and in many places people with dementia have access to the same facilities as other elderly people. That is, however, far from sufficient, and FAAS puts great emphasis on the importance of strengthening specialised services for people with dementia and their carers in the countryside. Day training centres are their top priority, as they have, in their experience, been central in increasing awareness and an understanding about dementia.
People with different types of dementia
No distinction is made with regard to services based on different types of dementia. Services are merely provided on the basis of each person’s situation and needs at any given time.
People from ethnic minorities
There are no services specifically for people with dementia and their carers from ethnic minorities.
Younger people with dementia
Legislation covering services for the elderly, i.e. people aged 67 and over, which grants rights and access to various services, including nursing homes, does not include patients under the age of 67. The government has declared that this will be rectified.
FAAS, the day training centres and other parties have started support groups and given them financial support. These include a support group for younger people with dementia, run in association with a day training centre which provides younger patients with special care. Apart from this, younger people with dementia do not receive any particular support as such.
Services and support for people with dementia and their carers
Types of care
Day-care centres have had good results in Iceland and this has been widely noticed. Even if rural areas are still lagging behind and demand has not been satisfied in the Reykjavík area either, day care places have increased in number in recent years, and the state seems to have a clear policy of going further in that direction.
The state pays the major part or up to 90% of the costs of running day-care centres, but service users and carers have to pay the rest.
FAAS, the Icelandic Red Cross, the volunteer organisation Sjálfsbjörg and the Society of Senior Citizens joined forces in a common initiative to open Iceland’s first day-care centre in 1986. Currently FAAS runs two more day-care centres, and work is underway to establish even more. Other day-care centres are owned and run by municipalities. The state provides all the centres with a fixed amount for each person, regardless of which party runs the day-care centres, as long as all permits have been obtained and other demands fulfilled.
A service to provide respite care at home does not exist. However, FAAS tries to give its members as much support as possible, through experienced members helping newer ones.
Short-term residential respite care is available and completely funded by the state but there are constant complaints that it is far from sufficient in number and that it is far from satisfying needs and demand. Actually, only 2 beds are set aside for respite care, for 3000 patients, but individual institutes do their utmost to meet the more severe needs as they rise.
FAAS is currently working on a facility specifically intended for residential respite care in the same building as the association’s day care services. It is ready and will open once the Ministry of Health has pledged to support it.
Long-term residential care
Long-term residential care is completely funded by the state but there is actually none available. Individual institutions do their utmost to meet the most severe needs as they arise.
There are no services providing palliative care at home. Palliative care at a centre is only offered at one institute, situated in the area surrounding Reykjavík. It serves that area quite well but does nothing to cater for the needs of rural areas. The service provided is first-class and highly praised, but insufficient. It is completely funded by the state.
Monitoring in the home via alarm systems
Tele-alarm systems can be purchased privately from the private sector. The state does not provide any funding for this service.
Personal assistance and home help
“Home nursing” takes care of the patient’s day-to-day hygienic needs, assistance taking medication and assistance dealing with incontinence, if such support is deemed necessary. When there is enough staff offering these services, they are satisfactory but as with many other home nursing projects, there is often a lack of staff which might indicate that salaries in this field should be higher. Visits to assist taking medicine often drop from twice a day to once a day or from 3 times a week to 1 or 2 times a week etc.
Assistance with eating and drinking (not with the preparation of food) would be categorised as “home assistance” and as such should be available but it is often lacking due to staff shortages and lack of time. When available, it is partly funded by the state and partly by service users. As mentioned earlier, a distinction is made between “home nursing” and “home care” whereby home nursing is fully funded by the state and home care is partly funded by municipalities, and partly by the service user, depending on his/her income.
There are no services providing assistance with skin care, occupational therapy, home adaptations and mobility e.g. lifting, moving and walking. There are also no services providing companionship and/or social activities although experienced members of FAAS try to help others as much as possible.
There is a distinct lack of clarity concerning people’s rights to assistive devices and state support for their purchase or rental. The state’s share of the cost ranges from negligible to complete cover. Changes to official policy are constantly being made with regard to the amount and extent of state support, the price of each piece of equipment, and each distinct disease or disability. The state does not support the purchase or rental of assistive devices for people with dementia in specific, but people with dementia can make use of some of the general services from the State Insurance Offices’ Assistive Device Center, on the basis of general regulations about support.
The following services are available:
- Assistance with housework e.g. cleaning, dusting and tidying
- Assistance with the preparation of meals (including meals on wheels)
- Assistance with transportation
- Assistance with laundry
Assistance with shopping is not available.
People pay a fixed and reasonable amount for assistance with housework and the preparation of meals. However, too little time tends to be spent on housework and people cannot get help preparing all the meals they need, usually just assistance with one meal per day and not at weekends. Assistance with laundry is scarce and partly funded by the state. It is considered expensive for service users.
If an official evaluation has detected that a person needs driving to certain places for important purposes, a service is provided a few times per month for which the service user pays a small fixed fee. The remainder of the cost is borne by the state. However, the rules governing eligibility are narrow and not very useful for people with dementia.
Psychosocial support and training for people with dementia and carers
The following services are not available in Iceland:
- General information services about available services
- Holidays for people with dementia and/or carers
- Counselling for carers
- Training for carers
Counselling for people with dementia is available but is not sufficient. FAAS runs some support groups for which it covers most of the cost. Some funding is provided by the state but this is constantly being reduced.
Work/tax related support for people with dementia
In Iceland, there are no measures to protect people with a diagnosis of dementia who are still in paid employment. They are not entitled to tax benefits or allowances on the basis of incapacity or to employ a person to provide home care. Similarly, they are not entitled to direct payments to pay for services, grants for home adaptations or reductions on radio and television licences or on public transport.
Work/tax related support for carers and carer allowances
People caring for a person with dementia are not entitled to paid or unpaid leave or to flexible working hours. They are not entitled to subsidised pension contributions. They are, however, entitled to receive a direct payment from the State if they are under 67 years old and have an especially burdensome task of caring for a relative. They must prove that they had a job or income for some time before and that they lost it as a result of having to care for the relative. This is covered by the Law on Public Insurance ( Lög um almannatryggingar - 117/1993) which came into force on 1 January 1994.
Unless otherwise stated, information provided by Helgi Johann Hauksson from Alzheimer Iceland (FAAS) in September 2007.
Last Updated: mercredi 15 juillet 2009