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Executive Summary

Social Support Systems

Overriding goals and principles

  1. Governments should set up national action plans for dementia care and set aside the necessary funds to implement them.
  2. Governments should ensure that people with dementia and carers have equal access to the social support (i.e. support, care, services and facilities) they need.
  3. Measures should be taken to improve the quality of social support, remove barriers to accessing it and ensure a sufficient supply of services in all geographical areas.
  4. Governments should take measures to facilitate independent living and the social integration of people with dementia.
  5. Governments should promote the early diagnosis of dementia.
  6. In addition to advance statements for medical treatment, governments should create possibilities for people to express in advance their wishes concerning their future care and social support, and to appoint a trustworthy person to speak on their behalf.
  7. Governments should develop campaigns and measures to combat the stigmatisation and abuse of people with dementia.

Respecting the rights and dignity of people with dementia

  1. Services and support to people with dementia should be provided in such a way as to maintain or enhance their autonomy and dignity, whilst at the same time balancing this with the need to ensure their safety.
  2. The needs, wishes, rights, protection and individuality of each person with dementia should be at the centre of any social support provided.
  3. People with dementia should be consulted and informed about any social support they receive and every effort should be made to obtain their consent.
  4. Governments should ensure that regulations relating to the provision of social support to people with dementia are enforced.
  5. People with dementia should not be subjected to restrictive or coercive measures. Instead, alternative means of ensuring safety or providing care should be developed.

State funding and organisation of social support

  1. The organisation and financing of healthcare and social support should be coordinated in such a way as to ensure a seamless provision of care, support and services to people with dementia and effective coordination between healthcare and social care systems and providers.
  2. In order to ensure a sufficient number of trained healthcare professionals and providers of good quality social support to people with dementia, governments should invest in training and provide incentives to attract professionals to this domain.
  3. Measures should be taken to limit the potential financial burden of dementia on carers and people with dementia. This might include compensation for loss of income, assistance with costs incurred, protection of pension fund contributions and tax deductions for costs linked to care etc.
  4. People with limited resources should be given the financial assistance necessary to access the social support they need but access should not be limited solely to people on a low income.
  5. Alzheimer Associations, NGOs, charitable organisations and volunteer networks should be provided with appropriate support from the State for the services they provide.

Ensuring equal access to social support

  1. People with dementia should have access to appropriate and good quality social support if and when needed, irrespective of the type or stage of dementia, the specific diagnosis, geographical location, living situation, age or any other means of discrimination.
  2. The specific needs and living situation of certain groups of people with dementia should be recognised and appropriate support provided e.g. those with alcohol dependency or learning disabilities, living alone or in rural areas, on a low income and/or from minority groups etc.
  3. People with dementia should have access to a general information service to direct them towards available social support, assistance to help them apply for it and an advocate to inform them of their rights and ensure that their rights are respected.
  4. In each community, there should be a “dementia contact person” who is available to answer questions about the disease and the kinds of services available.

General issues surrounding the provision of social support

  1. A rehabilitative approach to social support for people with dementia should be developed and provided on a multidisciplinary basis in collaboration with people with dementia and carers (please refer to section 3.2 of this report for further details).
  2. Every person with dementia should have a dementia care coordinator, regular assessment of his/her needs and appropriate case management.
  3. Carers should be entitled to a separate assessment of their needs, resources and willingness to provide care.
  4. Social support should be provided if and when required, taking into account the wishes and usual daily routine of the person with dementia and the possible need for care at any time of the day or night.
  5. People with dementia should have access to information, counselling, psychoeducation, appropriate psychological support, different kinds of therapies and meaningful activities, and training in coping with activities of daily living.
  6. Carers should have access to information, counselling, psychoeducation, appropriate psychological support and training, as well as bereavement counselling.
  7. Children and adolescents should have access to specially adapted support.
  8. A wide range of services, which respond to the specific needs of the person with dementia, should be available including, for example, assistance with personal care and hygiene, housework, mobility, eating and drinking, taking medication, shopping, laundry, transport and home maintenance.
  9. The importance of social contact, exercise and mental stimulation to help maintain existing capacity should be recognised and appropriate support provided.
  10. Social support should be provided when needed and not solely when the person with dementia has reached a specific level of general disability.
  11. Dementia should be a component part of doctors’ undergraduate training.
  12. Continuous training in dementia care should be provided to all stakeholders and at every level of service provision from decision making to practice.
  13. Care and service providers should have access to medical expertise whenever needed, irrespective of where care is provided.
  14. A combined preventive and curative approach should be adopted when appropriate.

Issues related to the provision of home care/outpatient services and support

  1. Day care and occasional night care in centres should be available for people with dementia. Staff in such centres should be suitably trained in dementia care.
  2. People with dementia should have access to affordable assisted technology and home adaptations suited to their particular needs and capacities.
  3. Carers should have regular access to affordable respite during the day, in the evening, at night and for varying periods of time.
  4. A replacement carer (or an allowance to pay for a replacement carer) should be provided during this period in the home or in a centre. Attempts should be made to ensure that this causes the least disturbance possible to the person with dementia.

Residential and palliative care

  1. Flexibility in the provision of short or long-term residential care should be encouraged in order to respect autonomy, maximise independent living and respond to changing needs and temporary or crisis situations. Emergency wards of hospitals are not suitable places for such care.
  2. Measures should be taken to ensure that every person with dementia has access to affordable and good quality long-term residential care when needed. If this is not possible, appropriate temporary measures should be found.
  3. Semi-residential and alternative forms of residential care should be developed which maximise the potential for independent living.
  4. Palliative care services at home, in centres and provided by mobile palliative care teams should be available to people with dementia when needed. Access should not be restricted to those who also have a diagnosis of cancer.
  5. Recommendations on issues specifically related to end-of-life and palliative care can be found in Alzheimer Europe’s “guidelines on the good end-of-life care of people with dementia”

 

 
 

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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