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General recommendations

Social Support Systems


Ethical, legal and financial issues

Dignity, autonomy and social inclusion

First and foremost, people with dementia are friends, relatives, neighbours and fellow members of society. The fact that they have a specific medical condition is secondary. They have an inherent dignity, value and personhood which remains with them throughout the whole course of the disease and should be respected at all times. The gradual loss of capacity makes it difficult for people with dementia to maintain their place and active participation in society i.e. in the private sphere, within the community and in the workplace. Carers may also experience social exclusion based on the effects of dementia on their loved ones. However, maintaining social contact and remaining active helps preserve their autonomy and physical and mental well-being for longer, minimise the need for assistance and prevent social isolation and depression. The real barriers to social inclusion and equal citizenship are often discriminatory attitudes and procedures, as well as a lack of understanding. These are issues which can be addressed. There is therefore an urgent need to raise awareness of dementia and take measures to combat stigmatisation, negative stereotyping, discrimination and indifference.

When providing social support and services to people with dementia, it is important to respect their right to self-determination: This means ensuring that their wishes are taken into consideration and their consent obtained. As dementia progresses, it becomes increasingly difficult to obtain fully informed consent from people with dementia. However, it is always possible to involve them in the decision-making process to some extent, keeping them informed, asking and/or finding out from others about their preferences and taking into account previously expressed wishes.

Recommendations on dignity, autonomy and social inclusion

  1. Services and support to people with dementia should be provided in such a way as to maintain or enhance their autonomy and dignity.
  2. In addition to advance statements for medical treatment, governments should promote possibilities for people to express their wishes concerning care and social support, and to designate in advance a trustworthy person to speak on their behalf, whilst they still have sufficient capacity to do so.
  3. People with dementia should be informed of these possibilities when the diagnosis is disclosed in case they have not already made such arrangements and still have sufficient capacity to do so.
  4. Consent should be sought from the person with dementia. As standard consent procedures are likely to be unsuitable in many cases, alternative and novel approaches should be sought.
  5. Difficulties communicating wishes or understanding should not be mistaken for implicit consent or indifference.
  6. As some forms of support may also have consequences (e.g. financial, practical or time-wise) for carers and/or be provided in the carer’s home, their wishes and rights should also be considered and as far as possible respected.
  7. Consent issues should be handled very carefully in order to avoid abuse and/or measures which are disproportionate to the need.
  8. Whilst respecting the privacy of people with dementia, people providing services should be vigilant for signs of possible difficulty, abuse or neglect experienced by people with dementia, and report this to their supervisors.
  9. The person with dementia and his/her needs should be at the centre of any support provided. In addition, his/her wishes and individuality should always be taken into consideration.
  10. Measures should be taken to promote the early diagnosis of dementia.
  11. Campaigns to combat stigma should be developed.

Living at home, safety issues and preventing abuse

Ensuring that people with dementia can remain in their own homes for as long as they wish to do so (and insofar as it is possible for them) is becoming a priority for many governments as they gradually realise the positive effect that this can have on people’s physical and mental health and well-being, as well as the fact that it is usually less expensive for the state. Nevertheless, people with dementia must also have the option of affordable and suitable residential care. Enabling people to continue living at home requires careful attention to obtaining the right balance between autonomy and safety, to the rights and needs of carers who are directly concerned by this choice and to the risk of possible isolation.

As the needs of the person with dementia change, the home may become ill-adapted to their needs and render the task of caring more difficult. Fortunately, assisted technology and adaptations to the home can be a tremendous help and may even delay the need for residential care.

People with dementia are at increased risk of different forms of abuse (e.g. verbal, physical, financial and psychological abuse as well as neglect) due to their progressive loss of capacity, communication difficulties and increasing dependence on others. Abuse can occur in any setting but may be more difficult to detect in the home setting and for people with dementia living alone.

Recommendations on living at home, safety issues and preventing abuse

  1. Measures should be taken to ensure that people with dementia are able to continue living in their homes for as long as they wish and it would be reasonably possible for them to do so.
  2. Measures should be taken to ensure that couples can carry on living together if they wish to do so e.g. by increased home care services or establishments which accept couples. This should not be limited to married couples.
  3. The right balance between safety and autonomy must be ascertained by means of an ongoing evaluation process covering autonomy and safety issues.
  4. The importance of maintaining social networks should be recognised and measures taken to try to prevent social isolation.
  5. Transport for practical and social purposes should be provided or subsidised. This should extend to carers accompanying a person with dementia.
  6. People in the early stage of dementia should be provided with individualised training in managing everyday tasks and developing coping strategies in order to enhance their autonomy and protect them from accidents and abuse.
  7. The specific needs of people with dementia living alone, especially with regard to safety issues, should be considered.
  8. The development of affordable assisted technology, adapted to the needs of people with dementia, and access to affordable home adaptations should be encouraged as a means to promote autonomy and safety.
  9. Suitably adapted tele-monitoring systems should be completely funded by the state in the case of people with dementia living alone.
  10. Measures should be taken to ensure that ethical issues linked to the use of assisted technology are always taken into consideration and that assisted technology is suited to the needs of each individual user.
  11. Semi-residential or alternative forms of residential care should be developed which maximise the potential for independent living e.g. sheltered housing, group home living arrangements and boarding.
  12. Restrictive or coercive measures should not be used and instead alternative means of ensuring safety or providing care adopted.

The planning, funding and organisation of services and support

The planning, funding and organisation of relevant care and support for people with dementia is often insufficient and inappropriate but is becoming a priority for many governments as the number of people with dementia steadily increases. Some have even made dementia care a political priority and set up action plans and policies with the appropriate funding to address a variety of issues linked to support, services, facilities and research. The way that social support is organised is also of utmost importance. People with dementia need affordable social support and services which were designed with their specific needs in mind and which are adapted to their individual situation and condition.

A few countries have long-term care insurances or allowances which are specifically designed to address the needs of people who have long-term care needs e.g. based on disabilities, old age or chronic conditions such as dementia. There are of course other ways to fund and organise social support to people with dementia. Whichever system is in use, it must be clear who, or which, authority is responsible for each type of support. The obligation to provide social support to elderly, disabled or vulnerable adults is often laid down in law and sometimes delegated to local municipalities. However, in practice, many people with dementia do not receive the support they need as laws are not enforced, funds for support are lacking and/or there is poor coordination between the different government authorities and levels.

Recommendations on the planning, funding and organisation of services and support

  1. In order to meet the need for dementia care, which is set to increase dramatically in the next few decades, governments should set up national action plans for dementia care and set aside the necessary funds to implement them.
  2. The organisation and financing of healthcare and social care should be better coordinated so as to ensure a seamless provision of care, support and services to people with dementia.
  3. Measures should be taken to ensure effective coordination between healthcare and social care systems and providers.
  4. Governments should ensure that regulations and laws relating to people’s rights to assessment and/or appropriate care are respected and enforced.
  5. Appropriate measures should be taken to ensure that municipalities and other authorities provide the support and services that are needed.
  6. Services should be provided which respond to the specific needs of people with dementia and not those of another group e.g. the elderly or the disabled, irrespective of how the services are funded (i.e. according to age or disability).
  7. It should be made clear which regulations governing access to support and services apply to people with dementia. If this is linked to the elderly, disabled or other groups, as it is in some countries, the criteria governing access should be sufficiently wide as to include people with dementia.
  8. The important role of Alzheimer Associations, NGOs, charitable organisations and volunteer organisations in providing services and support to people with dementia and carers should be recognised.
  9. Such organisations of recognised value should be provided with the appropriate funding from the State to continue their activities.
  10. Governments should encourage donations to such organisations e.g. by granting tax deductions for donations.
  11. Efforts should be made to provide stable funding for various forms of support.
  12. There should be a special time schedule or network for medical services for people with dementia and their carers because people with dementia have difficulty waiting for hours to see a general practitioner and the carer has little time as he/she often provides care on a full-time basis.
  13. Measures should be taken to reduce delays in obtaining an appointment with a specialist.

Financial support to people with dementia and carers

Having dementia, or caring for a person with dementia, can lead to a loss of income (for example, through loss of paid employment and consequently of pension fund contributions), as well as additional costs (as services and support are seldom fully reimbursed or covered by the state, and may require out-of-pocket payments). Moreover, the valuable work provided by carers is often taken for granted by the state and their needs overlooked. As it may become increasingly difficult for people with dementia (and in many cases carers) to get out and socialise, it is important that they have access to affordable transport and a means of contact with the outside world.

Recommendations on financial support to people with dementia and carers

  1. In recognition of the additional costs incurred when caring for a person with dementia, carers should receive a care allowance.
  2. Measures should be taken to protect the state pension rights of people who give up paid employment or reduce their hours in order to care for a person with dementia.
  3. People diagnosed with dementia who have to give up paid employment should be entitled to an allowance to compensate for the loss of income and measures to protect their pension rights.
  4. People with dementia should be entitled to tax deductions on the grounds of their incapacity and for employing a person to provide home care services.
  5. People with dementia who receive funding to pay for services should be allowed to select relatives and close friends as providers of those services.
  6. People with dementia should be exempt from paying television and radio licenses and be eligible for special reductions on the cost of public transport.

General framework for care and support

The need for a flexible approach

People with dementia and their carers[1] have a right to lead their lives as normally as possible. It is important that they maintain control over their lives for as long as possible. The life situations of people with dementia and their carers are varied and the needs and wishes of people with dementia and their carers are always individual, as is the need for different kinds of services. Needs and life situations change as the disease progresses and this is why people with dementia and their carers need support and services on a continuous basis. People with dementia need timely diagnosis, accurate and appropriate information and sufficient counselling after the diagnosis has been made, adequate and ongoing support, individual assistance and different types of care like home care, day care and institutional care geared towards maintaining functional capacity. A flexible approach to social support, services and care is therefore essential.

In order to offer high-quality services and ensure a flexible provision of services, it is very important to evaluate thoroughly and regularly each individual’s needs, functional capacity and life-situation. This should be completed by a regular and systematic follow-up.

The views of people with dementia are always important when designing, developing, providing and evaluating services and care. It is therefore essential to find a way to ascertain the individual needs of people with dementia. Official service models are often rather traditional and rigid and they do not sufficiently take into account the individual and changing needs of people with dementia and their carers. This leads to a situation in which support is not given in the right way at the right time. As a person’s situation or the situation in a family can change quite rapidly and there may be crisis situations at home, the service system should be able to react to these changes in a timely and immediate fashion.

To meet these varying needs, flexibility and possibilities for choice are essential. Individually tailored care and service packages are therefore needed because standard and general solutions are not effective. Flexibility in services and care can only be achieved by listening to people with dementia and their carers’ opinions, wishes and needs, assessing the situation thoroughly and having enough information about their overall situation. Flexibility may also be linked to the timing or location of a service. Indeed, a flexible approach is particularly important in rural areas where services are often scarce.

Recommendations on the need for a flexible approach

  1. People with dementia should have the possibility of choice and access to individually tailored care and service packages.
  2. The system of service provision should be sufficiently flexible to allow for immediate assistance whenever the person’s life-situation changes or in times of crisis.
  3. The views of people with dementia should always be taken into account when designing, developing, providing and evaluating services and care.
  4. The individual needs, functional capacity and life-situation of the person with dementia should be thoroughly and regularly evaluated, and a regular and systematic follow-up carried out.
  5. The individuality of the person with dementia should also be respected. This might include his/her sense of priorities, values, cultural and religious beliefs and practices, personal history and idiosyncrasies.
  6. In order to access such information, people providing services should take the time to communicate with people with dementia, talk to carers and consult any available written documents such as advance directives or statements of values.

The rehabilitative approach

In addition to flexibility of services, a rehabilitative approach is also very important. The main aim of the rehabilitative approach is to support the functional capacity of the person with dementia and the quality of life and sense of control of both the person with dementia and his/her carer. A rehabilitative approach in services and care is aimed at supporting individual resources, autonomy and self-determination, and self-efficacy in the daily life of the person with dementia and his or her carer. In this way, possibilities for the person with dementia to take part in meaningful activities are enhanced and supported. The availability of choice contributes towards self-determination.

The rehabilitative approach in dementia care can be seen as reflecting the basic idea of the ICF (International Classification of Functioning, Disability and Health, WHO 2001[2]) in which disability is described as a dynamic interaction between health conditions (e.g. diseases, disorders) and contextual factors (personal and environmental factors). Environmental factors include the physical, social and attitudinal environment and the environment can either support or hinder a person’s functioning, participation and activities.

Dementia affects all areas of a person’s functional capacity (physical, psychological, cognitive and social). The way that dementia progresses and its effects on a person’s life are always individual. Functional capacity is affected by many factors such as the type and severity of dementia, other diseases, medication, personality and the physical and psychosocial environment. It is possible to support people’s capacities and resources by means of a rehabilitative approach of which the holistic assessment of functional capacity is a cornerstone.

Respecting human rights and individuality, supporting autonomy and self-determination, recognising lost and remaining skills and supporting functional capacity are basic values within a rehabilitative approach, which can be achieved by listening to the person with dementia, trying to understand his/her situation, wishes and needs and involving him or her and his or her carer in planning and evaluating the care provided. In addition, the evaluation of functional capacity, which is a basic element of the rehabilitative approach, and all this information helps in the setting of clear and individual aims for the rehabilitative approach.

Positive results have been obtained using different methods of the rehabilitative approach e.g. the multi-factorial support system in which both the person with dementia and his or her family carer are supported. The rehabilitative approach should be a key principle in day care services, short-term care and long-term care.

The rehabilitative approach throughout the whole care chain

Improved early diagnosis calls for the use of all possible means to maintain both the quality of life and functional capacity of people with dementia. It gives them the possibility to continue to lead a fairly normal life and to spend many good years at home. A rehabilitative approach to services and care can be seen as an essential means of empowering both people with dementia and their carers.

As the situation is constantly changing along with the progression of the disease, setting realistic aims and choosing individual and appropriate means of support are key factors in the rehabilitative approach. The main aim is not necessarily to improve functional capacity but rather to maintain it and to create real possibilities to use it to its full extent. The general aims of rehabilitation differ at different stages of the disease. In the early stages, it is important to support a person’s independency, normal activities and usual way of life, to support functional capacity, to maintain meaningful roles and functions and to find appropriate compensatory strategies for those capacities that are already affected by the disease. In the middle stage, it is important to support remaining abilities and resources, and to create possibilities for success and a sense of achievement in order to support a person’s identity. In the advanced stage, it is essential to provide support for mental and physical capacities as well as for the ability to interact. Environmental factors should also be taken into account in order to create a pleasant environment and prevent disorientation[3].

Assessment of the functional capacity and life situation of the person with dementia

When evaluating functional capacity within the rehabilitative approach, it is essential to look at the person with dementia in a holistic way i.e. as an individual with an individual life history, values, preferences, wishes and needs as well as being a part of his or her environment and society. The evaluation of functional capacity should include interviewing both the person with dementia and his or her carer, using validated measurements and tests and observing how the person with dementia is coping with daily activities. The evaluation should be carried out regularly and whenever there are obvious changes in the person’s situation. It is important not only to look at the individual but also the environment. The environmental factors can either support or restrict the functional capacity of the person with dementia.

An unbroken continuum in services and care

The continuum in rehabilitative services is important because the situation of each person with dementia changes as the disease progresses. Whilst people with dementia and their carers need clear information, support for adaptation (adaptation training courses) and counselling at the beginning of the disease in order to be able to lead a full a life as possible, these needs gradually change. Social support should be provided on a continual, ongoing basis, from detection of the first symptoms to the end of the disease. People with dementia and their carers should know at all times where to turn for information, support and counselling.

The knowledge and skills of social and health care personnel

Using a rehabilitative approach provides resources and also supports functional capacities both individually and effectively. However, this places many demands on the social and health care personnel. It necessitates the collection of information from a variety of sources about the person’s preferences and wishes, his or her personality and life-course, the disease and its stage and the person’s functional capacity in order to provide help and support in the best possible way. This enables personnel to create opportunities for people with dementia to use their resources and capacities in their everyday lives. However, personnel must be trained in using a rehabilitative approach in their work and educated in dementia care.

Activities and activity programming is an essential element of rehabilitative care. Through individually selected activities the person with dementia is encouraged and supported to use his/her physical, cognitive, emotional and social resources to the full extent, which improves and maintains his/her functional capacity. The activities should be meaningful for the individual in question and they should provide a sense of usefulness, pleasure, success and efficacy. Choosing the right kind of activities is achieved with the help of a comprehensive assessment of the person’s individual needs and resources.

Recommendations on the rehabilitative approach

  1. The rehabilitative approach should be individually and holistically planned and provided, and should be developed and provided on a multidisciplinary basis with the co-operation of carers, and on the basis of information about the life history and current situation of the person with dementia and his/her needs and wishes.
  2. An effective information system should be developed to ensure that such information is readily available to the relevant personnel and that confidentiality is respected.
  3. An individual plan for rehabilitation is needed, in which the aims, means and responsibilities are clearly defined. This plan should be drawn up by a multi-disciplinary team of professionals together with the person with dementia and his/her carer and it should be evaluated regularly and systematically.
  4. In order to support and/or help to maintain quality of life and functional capacity, appropriate and timely support, services and care are needed at the different stages of the disease. Services should be provided on a continuous and seamless basis based on a thorough and holistic needs-assessment and on an evaluation of functional capacity.
  5. The functional capacity of the person with dementia should be assessed thoroughly and in a systematic way.
  6. A rehabilitative approach should be systematic, timely and flexibly provided. The type and stage of dementia, as well as the personality, life situation, lifestyle and individual habits of the person with dementia, should be taken into account.
  7. The rehabilitative approach should be a key principle in day care and in different forms of institutional care.
  8. Personnel should be trained in using a rehabilitative approach in their work and educated in dementia care.

[1] The term “carers” is used here to refer to partners, relatives and close friends who live with the person with dementia or are closely involved in their care (on an informal basis). However, it should be noted that many people with dementia live alone and/or have no carers.

[2] World Health Organisation. 2001. International Classification of Functioning, Disability and Health: ICF.

[3] Additional information on rehabilitation and rehabilitative approach can be found in the following article: Pirttilä T, Heimonen S, Granö S. (2007). The essential role of rehabilitation in dementia care. Gerontologia 21(4):320-328. This article is published in Finnish and a translation can be found in the EuroCoDe database.


Suitablity, accessibility and barriers to obtaining support, services and care

The surveys carried out on behalf of Alzheimer Europe into the availability of social support throughout Europe revealed that whilst services and various forms of support exist, this is not always suitable and/or equally accessible to all people with dementia and carers in specific countries. In some cases, the barriers are based on eligibility criteria, in some cases on a lack of availability of services and sometimes on a combination of the two.

In some countries, people diagnosed with one of the less common forms of dementia cannot access services because only certain forms of dementia are officially recognised. Where services do exist, people with less common forms of dementia such as fronto-temporal dementia, variant Creutzfeldt-Jakob disease or alcohol-related dementia may find that the services do not correspond to their specific needs. Younger people with dementia and those who also have learning disabilities such as Down’s syndrome may feel out of place in day care centres for people with dementia who are mostly older.

It is important to take into consideration the specific needs of certain groups of people with dementia e.g. those who live alone or who have limited financial resources. However, such criteria are sometimes used to limit access to services and support for other groups of people with dementia. Similarly, the fact that a person with dementia lives with other people should not lead to an assumption that the latter will provide the care he/she needs (although there is a legal obligation in some countries for certain relatives to support dependent parents).

Accessing appropriate support is particularly problematic when the services available are or were originally intended for a different group of people e.g. the elderly or people with disabilities. For example, services which were designed for people with disabilities are often heavily orientated towards physical needs. In such cases, the typical symptoms of dementia make it difficult for people to use some of the services that are available e.g. meals on wheels, certain home monitoring systems and day care where no transport is provided. As the difficulties that they encounter are not always obvious or even visible, their real needs may go unmet.

Standard services are not always appropriate for people from certain ethnic or other minority groups. Consequently, people from such groups may be excluded or exclude themselves. Failure to develop appropriate services which respond to the needs of various minority groups and respect their cultural differences (e.g. linked to language, dietary requirements etc.) represents a form of discrimination.

Recommendations on suitability, accessibility and barriers to obtaining social support

Different types of dementia and disability status

  1. Services should be developed which take into account the specific needs of people with different types of dementia e.g. with fluctuating capacity, different levels of mobility and more pronounced alteration of mood. Examples of such services might include day care for people with Down’s syndrome or for people with early onset dementia or support groups for people with fronto-temporal dementia etc.
  2. Diagnoses of specific forms of dementia should not be used to exclude certain people with dementia from the services and support they need.
  3. If access to services and support is dependant on official recognition of a disability, then all forms of non-reversible dementia should be accepted as contributing towards the required level of disability.
  4. Eligibility criteria based on disability or care needs should take into account the specific nature of dementia and consequently avoid bias towards physical disability or needs. The physical needs of people with dementia should nevertheless be recognised and appropriate support provided e.g. prevention and treatment of decubitus ulcers and incontinence and assistance with mobility, eating and drinking.
  5. People with dementia should not have to wait until a specific level of general disability or global need has been reached before being considered eligible for any services.

Addressing specific needs

  1. Specific assessment with appropriate case management should be provided to people with dementia, taking into account any specific needs e.g. of younger people with dementia, people with dementia who live alone etc. Support and services provided should be individually tailored to those needs
  2. Measures should be taken to provide people with dementia and carers from ethnic minorities with services and support that respect their cultural traditions, language and dietary restrictions. There may also be less obvious minority groups within the general population of specific countries with special needs and expectations.
  3. People with limited resources should be given the financial assistance necessary to access the services and support they need but services should not be limited solely to people on a low income.

Rural areas and isolated or close knit communities

  1. Appropriate forms of support, effective co-ordination and additional transport should be provided in rural or isolated areas.
  2. Novel approaches should be developed if necessary which take into consideration the particular needs and situation of people living in such areas.
  3. Measures should be taken to ensure a sufficient number of qualified service providers in rural and isolated areas.
  4. A special effort should be made to combat stigma in close knit communities.

Availability of suitable structures and appropriately trained staff

  1. Measures should be taken to ensure that there is a sufficient number of services, care networks and care structures along with trained staff in all areas. Where this is not the case, compensatory measures should be taken such as mobile care teams, organised transport and more flexible care arrangements.
  2. Institutions for long-term care are needed with staff who are trained in caring for people with different types of dementia whose needs may be different.
  3. Continuous training in dementia is needed for all stakeholders and at every level of service provision from decision making to practice.
  4. Dementia should be a component part of doctors’ undergraduate training.
  5. Information should be provided to general practitioners about the burden of caring on carers and how this may affect their quality of life.
  6. Other non-medical staff, as well as volunteers, should, as a minimum, have a basic understanding of what dementia is and how to communicate with people with dementia. They should be encouraged to take part in such training and rewarded for doing so e.g. in terms of a bonus or a higher status.

 

 
 

Last Updated: jeudi 08 octobre 2009

 

 
  • Acknowledgements

    The EuroCoDe project received financial support from the European Commission. Neither the European Commission nor any person acting on its behalf is responsible for any use that might be made of the following information. Alzheimer Europe also gratefully acknowledges the support it received from Fondation Médéric Alzheimer for this project.
  • European Union
  • Fondation Médéric Alzheimer
 
 

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