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Specific services and support

Social Support Systems


Outpatient services and self-help

Dementia affects cognitive functions such as memory, logical reasoning and abstract thought which can not only affect the ability to carry out certain everyday tasks such as shopping, cooking, and cleaning, but also lead to self neglect and contribute towards accidents. It can also cause difficulties which, on the surface, may seem to be purely physical e.g. difficulties with mobility, manipulating objects, visual perception, swallowing and incontinence, but actually are also influenced by cognitive difficulties. The combined cognitive and physical problems make it difficult for people with dementia to live independently and make them increasingly dependent on other people for assistance. To complicate matters, certain behavioural and psychological symptoms, such as aggression, depression and wandering, can render the task of providing care more difficult and may have serious consequences e.g. abuse.

However, people with dementia do not all experience the same symptoms in the same order or to the same extent. Their needs and capacities are very individual, hence the need for a wide range of services and a flexible system as mentioned in section 3.2.1 above. Finally, in order to preserve the mental and physical health and wellbeing of carers, their needs must also be recognised and appropriate support provided.

Recommendations on outpatient services and self-help

General issues

  1. Services should be available which are suited to the specific needs of people with dementia. This may involve creating new services and/or adapting existing services.
  2. A dementia care coordinator (or “care manager”) should be appointed for every person with dementia.
  3. Personnel providing home care services should be encouraged to involve people with dementia in daily activities and care to the extent that this is possible so as to help preserve their remaining capacities.
  4. When providing services, the importance of social interaction for people with dementia should be recognised.
  5. A survey should be carried out involving people with dementia and carers in order to determine the kinds of services and support needed.

Information, self-help organisations and volunteers

  1. There should be a general information service to orientate people towards the services and support which are available to them in connection with their condition.
  2. 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.
  3. Assistance should be provided to people with dementia who have difficulty understanding or carrying out the procedure for applying for support.
  4. People with dementia should have access to an advocate who can inform them about their rights and if necessary speak on their behalf about matters relating to their rights not being respected.
  5. Special attention should be paid to the information needs of people with dementia living alone
  6. The important role that volunteers, neighbours and people from the local community play in the provision of services and support should be recognised and promoted.
  7. Volunteers, neighbours and people from the local community providing services and support to people with dementia should be provided with training and, if necessary, some form of official identification. This should also be the case for people who have been appointed in advance by the person with dementia to make decisions on his/her behalf.

Different types of care in the home

Personal assistance and home help
  1. Supervision/assistance for taking medication should be provided if needed, not just for medication linked to the treatment of dementia but also for other comorbid conditions.
  2. Assistance with personal care should be provided if and when needed i.e. at various times of the day and as far as possible in accordance with the person’s usual routine.
  3. A combined preventive and curative approach to skin care and incontinence should be provided including both medical and non-medical aspects of such care and the provision of appropriate and sufficient continence pads or equipment.
  4. Measures to assist with eating or drinking and/or the provision of meals should be adapted to the specific needs of people with dementia.
  5. Assistance with housework, mobility, shopping, laundry and transport should be provided as well as ad hoc assistance with small-scale home maintenance jobs.
Night care
  1. A home-based night care service should be available to people living alone in need of care or supervision at night.
  2. Mobile night care services should also be available.
  3. Carers looking after a person with dementia in need of night-time care should be entitled to a replacement carer on a regular basis.
Palliative care
  1. People with dementia in need of palliative care should be able to receive palliative care services and support at home.
  2. Whilst the decision of where to receive palliative care should be based on the needs and wishes of the person with dementia, the views of carers should also be considered.
  3. A palliative care coordinator/advisor should be appointed for every person with dementia receiving palliative care. His/her task would be to coordinate the various service providers and be available to carers for advice at any time.
Counselling/therapy[1] and support for people with dementia
  1. People with dementia should have access to individual or group counselling/therapy, psychoeducation and support throughout the whole course of the disease provided that it is beneficial to them.
  2. As the disease progresses and verbal skills deteriorate other approaches to enhance psychological and emotional well-being should be made available to people with dementia[2].
Counselling, therapy, support and training for carers
  1. Carers should have access to counselling/therapy, on an individual or group basis, and psychoeducation depending on their needs.
  2. Bereavement counselling should be available to carers.
  3. Carers should have access to training aimed at helping them cope with specific tasks related to caring but also to cope with the emotional and physical effects of caring.
  4. When providing counselling, therapy or training for carers, the need to find suitable arrangements for the care of the person with dementia should also be considered as otherwise carers may be unable to take advantage of the services being offered.
  5. Free advice from experts should be available by phone, preferably round the clock e.g. 24 hour telephone helpline or an out-of-hours number for emergencies.
  6. Information, support groups and individual counselling/therapy if necessary should be made available to children and adolescents living in families with a person with dementia. A different approach may be needed for each group.
  7. In cases where a child or adolescent has become the carer of his/her parent or relative appropriate professional support should be provided and care taken to minimise further upheaval.
Holidays, social and leisure activities
  1. The importance of social contact, meaningful activities and physical exercise for the well-being of people with dementia and the preservation of their remaining capacities should be recognised and form an integral part of care packages whether at home, in day care centres or in residential care settings.
  2. Opportunities for people with dementia and carers to socialise together should be encouraged e.g. Alzheimer cafés and excursions.
  3. Measures should be taken to enable people with dementia and carers to have a holiday from time to time either together or separately.
  4. Alzheimer associations, working in collaboration with carers and volunteers, who organize holidays for people with dementia (with or without carers) should be financially supported by the State.

[1] The word counselling is used here to refer to psychological counselling and not to the provision of information or advice.

[2] A complete set of guidelines on psychosocial interventions were produced in the framework of the EuroCoDe project by Vernooij-Dassen et al. and can be obtained from Alzheimer Europe.


Semi-residential care and respite for carers

At some stage, people with dementia who are living at home may either need or benefit from specific additional care, which cannot be obtained in the home environment. In this case, the care can only be provided on a semi-residential basis e.g. day care or night care. The demand for this type of care varies because each person’s needs and situation are different. For example, one person might wish to attend a day care centre for social interaction or perhaps to take part in activities designed to stimulate cognitive abilities, whereas another might attend as he or she cannot be left alone for long periods of time for safety reasons or due to specific needs.

Sometimes day or night care also serves as a means of respite for carers, as well as cover for the usual carer who may be temporarily absent. Carers cannot be expected to care for people with dementia 24 hours a day 7 days a week without a break. Respite provides them with a much needed rest which is not only essential for their mental and physical wellbeing, but can also help them to cope with caring for longer. However, for this to be effective, they must have the reassurance that the person with dementia is safe and is being provided with quality care.

Recommendations on semi-residential care and respite for carers

Day care

  1. Appropriate day care should be provided to people with dementia. This should be provided in an environment which has been designed or adapted with the needs of people with dementia in mind.
  2. Day care centres should be run by staff who have been trained in dementia care.
  3. Access to medical staff (either on site or who can be called in) should be available in all day care centres for people with dementia.
  4. For many people, especially those living alone, the transport service may have to be combined or coordinated with personal assistance e.g. helping the person out of bed, to get washed and to get dressed.
  5. For people with dementia who do not live alone, transport times should be coordinated with carers as they may have other obligations e.g. linked to school hours if they have children and/or working hours if in paid employment.

Night care

  1. Night care should be available to people with dementia who cannot be cared for at night at home and who, occasionally or regularly, need care or supervision at night.
  2. Additional places for night care should be available for emergency situations e.g. where a carer is unexpectedly unable to provide care at night.
  3. Wherever possible, night care should be provided in small-scale units rather than on large wards so as to minimize confusion and distress in the person with dementia.

Respite for carers

  1. Carers should be entitled to respite on a regular basis if and when required and also in the form of a minimum number of weeks per year.
  2. A replacement carer or an allowance to pay for a replacement carer should be provided during this period.
  3. Flexible respite care services should be provided which take into consideration the carer’s needs and the wellbeing of the person with dementia.
  4. When organising respite care, measures should be taken to minimise the possibility of causing distress to the person with dementia.
  5. Respite care services in the home should be developed.

Residential care

Good quality, affordable residential care facilities for people with dementia are lacking in most countries. Consequently, access to such care is often limited to people with dementia who fulfil specific criteria, such as having limited financial resources, living alone or being in urgent need of some form of residential care. However, there are many more people who would benefit from such care and who should have equal access to it. Residential care should not be considered as a last resort, or just for people with very advanced dementia. On the contrary, it can also be a way to promote the autonomy of people with dementia at an earlier stage of the disease.

Recommendations on residential care

Short-term residential care

  1. Short-term residential care facilities should be available to cater for the temporary need for professional round-the-clock care of people with dementia.
  2. Establishments accepting people for short-term residential care should have suitably qualified and trained personnel to take care of people with dementia. Emergency wards of hospitals are not at all suitable.
  3. Such care should be available if and when needed. The assessment of need should not focus entirely on the condition of the person with dementia but should also take into account the needs and situation of carers.
  4. Care should be taken to avoid moving the person with dementia around too often as this could be disturbing and lead to confusion, disorientation, stress and/or a further deterioration of his/her condition.
  5. As an alternative to short-term residential care, in the case of a lack of available places, alternative forms of care should be developed e.g. temporary live-in carers, boarding.

Long-term residential care

  1. Measures should be taken to ensure that every person with dementia has access to affordable and good quality long-term residential care when needed.
  2. Waiting lists should be reduced and temporary solutions found if necessary.
  3. Suitable long-term care facilities should be set up which have been designed with the needs of people with dementia in mind.
  4. Creative solutions to long-term care should be investigated particularly for sparsely populated areas e.g. boarding, live-in carers, small-scale facilities etc.
  5. Measures should be taken to ensure that people with dementia on a low income also have access to long-term residential care. On the other hand, places should not be restricted solely to people on a low income, with the most severe level of disability and/or living alone.
  6. Long-term residential care should be offered when it would be beneficial to the person with dementia without waiting until his/her condition deteriorates to such an extent that it becomes an absolute necessity.
  7. Professional carers should be adequately trained in dementia care.
  8. Non-medical care staff employed in such establishments should also have at least a basic understanding of dementia and of how to communicate with people with dementia.

Palliative care

In its guidelines on good end-of-life care for people with dementia, Alzheimer Europe clearly states its opinion that palliative care is the best option for people with end-stage dementia. However, residential palliative care facilities which accept people with dementia are lacking in Europe[1] and palliative care services at home are not always available or adequate. It should also be noted that palliative care is an approach and a philosophy which can be adopted much earlier on in the course of the disease and not limited to the very last stage of life.

Recommendations on palliative care

  1. End-stage dementia should be recognised as a terminal condition which may necessitate palliative care.
  2. People with dementia should be entitled to residential palliative care when their condition necessitates it.
  3. A diagnosis of dementia and/or lack of oncological diagnosis should not serve as a means to exclude a person with dementia from a place in a residential palliative care establishment.

[1] National reports of the European Association for Palliative Care (http://www.eapcnet.org/Policy/CountriesReport.htm) and the Alzheimer Europe’s comparative report on social support to people with dementia and carers produced in the framework of the EuroCoDe project.

 

 
 

Last Updated: Thursday 08 October 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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