Examples of good practice
Social Support Systems
- Dignity and autonomy
- Social inclusion
- Living at home
- Minorities and rural areas
- Respite care
- Services and support
Respecting dignity and autonomy
Respecting freedom of movement (Norway)
Staff at the “Blidensol” residential home in Norway have developed a procedure designed to respect individual freedom of movement whilst at the same time taking measures to promote safety. People with dementia with sufficient capacity can, with the head of the unit, sign a written agreement which outlines the conditions for going out alone. Then, whenever they go out, they tell staff when they will be back. If they are not back by the agreed time, steps are taken to find them. First, staff call them on their mobile phone; if unsuccessful, they then go out to look for them. If they do not find them, they contact relatives. Finally, as a last resort, they contact the police.
Respecting individuality and different rhythms of life (France)
A small residential care centre in the Beaujolais region of France offers individualised, tailored activities at night which take into account people’s wishes and different rhythms of life e.g. making cakes with a former baker, watching films with a film enthusiast etc. This is reported to have resulted in calmer nights with less anxiety and a reduction in the use of sleeping tablets.
There are also some nursing homes in Germany which offer a similar service which they call the night café.
Assistance with paperwork and administrative formalities (Luxembourg)
Under the long-term care insurance in Luxembourg, people are entitled to “support” for up to 14 hours per week. One of the services which falls into this category is help with official paperwork. This is particularly important for people with dementia who do not yet have a power of attorney or some form of guardianship.
Protecting the rights of people with dementia still in paid employment (England, Scotland)
In the United Kingdom, the Disability Discrimination Act 1995 prevents discrimination on the grounds of disability. Employers have a duty to make reasonable adjustments to a job or workplace (e.g. delegating responsibilities or changing the nature of the person’s tasks) if they are aware of a person’s disability and to grant special leave for rehabilitation, assessment or treatment.
Proxy decision making and representation in the domain of welfare (Scotland, Belgium)
It is possible in Scotland for a person to choose, in advance of incapacity, a welfare power of attorney who can make decisions about care and treatment on his/her behalf when he/she is no longer able to do so.
Social inclusion and psychosocial support
Social contact and holidays for people with dementia and carers (Luxembourg, Germany, Netherlands)
The supervision service that is available in Luxembourg and Germany under the long-term care insurance also provides a means to break the isolation of people with dementia who live alone and monitor their general well-being and needs. In Luxembourg, excursions and social activities fall into the category “support” and can be refunded under the long-term care insurance.
Alzheimer Cafés (Netherlands)
Alzheimer Cafés, based on a concept devised by Bère Miesen in the Netherlands, have been set up in a number of countries in Europe. The Alzheimer Café is an informal meeting place where people with dementia and carers can get together, socialise, exchange experiences, learn how to cope with the disease better and benefit from support and advice from professionals. It is a kind of “protected environment” where they can relax without fear of criticism from outsiders or of people noticing the symptoms of dementia as everyone is in a similar situation.
Outings for couples (France)
An Alzheimer Association in Mulhouse (France) organises days out for couples where one of the partners has dementia. Once a month, a day care facility with a professional carer is made available to them. Meals are provided and a trip to a nearby town is organised. This enables the couples to get out of the house, socialise and share their experiences but it also serves as a very gradual introduction to day care.
Living at home: safety issues and preventing abuse
Maintenance in the home and supervision (Malta, Luxembourg, Germany)
Using faulty household appliances or trying to take care of small maintenance jobs around the home can be dangerous for people with dementia and even lead to accidents. In Luxembourg there is a service, covered by the long-term care insurance, which ensures the maintenance of household equipment for dependent people who can no longer manage such tasks themselves. Similarly, in Malta, the Maltese Department for the Elderly organises a handyman service offering a range of 70 different repair jobs.
However, faulty appliances and poor home maintenance are not the only source of danger. Memory loss, confusion and loss of capacity can all lead to the need for extra supervision. This is possible in Luxembourg and Germany through the long-term care insurance system but often the amount of supervision provided is nevertheless insufficient.
Tele-alarm monitoring systems (Denmark, Malta)
Tele-alarm systems, which can be used by people with dementia, are available in several countries. In Denmark, they are provided free of charge by municipalities. It is important to ensure that the system can be easily used by people with dementia. In Malta, a system has been designed which the Malta Alzheimer Society considers suitable for people with dementia.
Keeping a friendly watch on elderly people (Malta)
In 1982, a charitable organisation in Malta (Caritas) set up a “good neighbour scheme”. It involves every elderly person being visited, assessed and invited to take part in this free service. If the elderly person wishes, volunteers will motivate neighbours who then keep a friendly and regular watch on the elderly person. Some neighbours provide actual assistance whereas others simply alert the relevant authorities to the possible need for services.
Furthermore, specially trained personnel delivering “meals on wheels” inquire whether the person needs anything and keeps an eye on the home environment. They are expected to report anything unusual to the service organizers. Whilst the privacy of the service user must be protected, this may help detect cases of abuse, neglect or simply the need for additional services.
Alternative living arrangements (Germany)
In Germany, “Wohngemeinschaften” (living communities) are now being set up for people with dementia. In the past, this kind of living arrangement was mainly for students. Living in a Wohngemeinschaft involves 6 to 8 people sharing an apartment or house. Each person has his/her own room and shares common facilities. If support and services are needed, they can be provided in the form of home care whereby certain needs (e.g. for cleaning, helping prepare food etc.) can be pooled but individual needs are nevertheless also met. There is no permanent live-in carer but round-the-clock care can be coordinated if needed. Carers are expected to play an active role in the daily lives of the inhabitants as the Wohngemeinschaft is considered as the actual home of the inhabitants and not as residential care. Costs can be partly refunded under the long-term care insurance.
Support for people from minority groups and those living in rural areas
Support for people with dementia and carers from ethnic minorities (Germany, Scotland, Switzerland)
Increased mobility within Europe has resulted in many people growing old in countries which are not their own. This is a trend which is likely to continue. However, specific support for people with dementia and carers from ethnic minorities and/or who are expatriates is scare and patchy.
In Germany, some organisations have developed guidelines on how to provide care in a way which respects the cultural background of particular groups of people. Others have actively tried to reach the Turkish and Muslim communities. As ethnic minorities often live in specific localities rather than being uniformly distributed throughout a particular country, measures are often locally based and sometimes led by Church organisations and community groups.
Alzheimer Scotland publishes information in several languages but also offers a specific Polish and Ukrainian information and advice service in one particular area of Scotland.
In Switzerland, there are two nursing homes for specific groups of people with dementia – one for people with dementia from Latin countries and the other for Jewish people with dementia.
Support for lesbian, gay, bisexual and transgender carers (England)
Caring for someone with dementia is a challenging task that often leads to isolation and stress. Being lesbian, gay, bisexual or transgender (LGBT for short) can sometimes make finding support even harder. The LGBT Carers group was set up by the Alzheimer’s Society in 1998. It now has a telephone support service operated by gay men and lesbian women, a downloadable newsletter and an “inclusion toolkit” which contains information about the group, its services, advice on choosing residential care and information on legal issues. The Group's volunteers are also increasingly being used to advise service providers on ways in which to achieve diversity and inclusion within their own situations.
Novel approaches to service provision in rural areas (Finland, Norway, Scotland)
Rural and isolated areas often lack the structures which are necessary to provide much needed services. Novel approaches are therefore needed such as the memory clinic bus which tours around Lapland offering memory testing and counselling services.
Assistance or supervision taking medication is lacking in a few countries and is not uniformly provided in many. In Norway, however, assistance taking medication is considered more satisfactory in rural areas than in towns with people sometimes receiving two visits and a telephone call per day to ensure that they take their tablets.
There are day care centres in the rural areas of Scotland but many find it difficult to survive financially. Other difficulties include a lack of appropriate venues, a shortage of appropriate people to provide the service and the population being thinly dispersed over a large area. This requires creative options, such as Alzheimer Scotland’s day care that is provided in the sitting rooms of bed and breakfast accommodation when there is a sufficient number of people requiring this service within a manageable geographical area.
Measures to ensure respite for carers
Respite care in the home (Belgium, Germany)
In parts of Belgium, there is a service which involves substitute carers staying in a person’s home from 7 to 14 days in order to provide respite for carers. The role of the substitute carer is to not only to provide care but also to spend time evaluating the remaining capacities of the person with dementia and recording notable events and strategies adopted. This information is then passed on to the carer on his/her return and the substitute carer might also suggest intervention strategies adapted to the individual home situation.
In some parts of Germany, networks of trained and supervised volunteers have been set up to provide social support in the homes of people with dementia at the request of carers. Such support might, for example, involve providing company and conversation or taking the person for walks etc. The service also provides support and/or respite to carers. The volunteers receive a small payment for any costs they may have incurred but this is below the level of normal wages.
Home-based respite care at night (Belgium)
In the Antwerp region of Belgium, there is a mobile night care at home service. Professional carers, managed by a coordinator, provide support, comfort and care two or three times a week between 21.30 and 06.30 to people with chronic illnesses, Alzheimer’s disease or at the end of life. This is financed by the Flemish government of Belgium.
A home care service provider based in Dunkirk (France) specialises in providing brief interventions at night of no longer than 30 minutes which complement other services and support those already in place. The service is extremely flexible. Visits can be organised on a fixed and regular basis, as required or whenever there is an emergency. Most visits are to help people to go to sleep, to get up, to get ready and just to check that all is well.
Financing or providing a substitute carer (Germany, Norway)
In Germany, people with dementia are entitled to EUR 1,432 per year under the long-term care insurance to pay for a replacement professional or informal carer (not a close relative) whilst their usual carer is absent or on holiday. According to the Deutsche Alzheimer Gesellschaft, this only covers about two weeks’ substitute care but is nevertheless a measure which can help carers organise a short break. In Norway, under the Social Services Act, carers in need of respite are entitled to a two-week break during which time the person with dementia is temporarily taken into residential care.
Specific services and support to people with dementia and carers
Personal care (Scotland)
In Scotland, free personal care is provided to people over the age of 65 who have been assessed as needing it. People with dementia under the age of 65 would still be entitled to such support but it would be means tested.
Joint psychological support for people with dementia and carers (France)
Joint psychological support for carers and people with dementia, provided at home by psychologists, has proven beneficial in the Isère region of France. The organisers claim that it has resulted in a reduction in the level of anxiety, conflict and tension between people with dementia and carers which in turn improves both quality of life and the care relationship.
Memory Centre (with additional advisory function) (Romania)
Most elderly people from Romania have, as adults, lived under a communist dictatorship. They are therefore not accustomed to the idea of having rights and of ways to access those rights. This is why the Memory Centre, which is based in Bucharest, was not only designed for the purpose of diagnosing dementia, but also to provide guidance for patients and their families on how to access their rights. At the Memory Centre, carers and people with dementia benefit from information, emotional support and guidance to help them find their way through the legislative maze currently existing in Romania. In addition, carers can obtain free advice and counselling on different problems linked to caring for a person with Alzheimer’s disease.
Educational programme for carers (Germany)
An educational programme, called the “Circle of Care” (“Hilfe beim Helfen”), has been developed in Germany to exchange experiences among carers and to provide information about the disease, living with people with dementia, legal matters and respite for carers etc. The programme is offered in the form of seven two-hour sessions. Information for referents and handouts for the participants are available on a CD-ROM. The costs are reimbursed by the German long-term care insurance. Similar programmes exist in other countries.
Stress management and relaxation workshops (France)
In the Haute-Savoie region of France, stress management workshops have been organised to help carers understand, recognise and control stress. Participants also have the opportunity to meet and exchange experiences with other carers. This is followed by a relaxation session including exercises on concentration and breathing. The workshop ends on a social note, with participants and instructors sharing a meal together.
Combined crisis intervention unit/winter garden (France)
The clinical gerontological department of a hospital in Saint-Etienne (France) has created a winter garden for people with dementia who have been admitted due to a crisis situation. The garden, with its fountain and plants, has a calming effect on patients and help reduce anxiety and tension. Carers also benefit from the calm environment. The garden serves as a kind of transitory place between hospital and home, and provides an ideal environment for professionals to resolve the crisis situation and to find out with carers what might have triggered the crisis.
Support for the dying (Luxembourg, Germany)
The association Omega 90, which is financed by the Luxembourg Ministry of Family, is made up of several organisations including, amongst others, the Red Cross and Caritas. It has a helpline operated by professionals and provides training to the volunteers who visit dying people and their families in hospital and at home. In order to ensure that volunteers are appropriately trained, the German Alzheimer Association (Alzheimer Gesellschaft) and the German Hospice Association (Hospiz Gesellschaft) recently joined forces in order to provide dementia-specific training for hospice volunteers.
Last Updated: jeudi 08 octobre 2009