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Parallel Session P6 - Education and training

Detailed Programme and abstracts

Friday, 1 October – 14.00-15.30 (Blue Room)

P6.1. A step out – the practical and social importance of training for people with dementia and their caregivers

Carmen Sinner, Association Luxembourg Alzheimer, Luxembourg

Mireille Elsen, Association Luxembourg Alzheimer, Luxembourg

This presentation reflects our own experience with the training programme which has been offered to caregivers since 2000 and continuously improved considerably. The aim of the programme is that caregivers are given a structured tutorial on how to disburden everyday life. A second but not to be neglected and sometimes more crucial aim of this training is that the caregivers can find a place where they feel confident to ask questions, give and get tips adequate for everyday use. Not only the needs from their loved one are reflected but recognizing one’s individual limits and, even more essential, accepting them to maintain a certain level of emotional well-being, requisite for a non-technical but affectionate care is the central ubiquitous theme.

Pangs of remorse, sense of guilt, annoyance, thoughts of renouncing, etc. are shared with the other participants (partner, child or friend) and the obvious new experience of not being accused to overstate or affronted to incomprehension but to find understanding and information exchange.

Using the mixture of theoretical knowledge and practicable hints from professionals and the caregivers, the curriculum includes, after giving a global overview of dementia, the following topics reflecting the problems and challenges people with dementia and caregiver face day-to-day:

  • problems with orientation
  • communication
  • psychological changes
  • physiological changes
  • nutrition and drinking
  • pay attention to one’s own physical and mental health
  • practical information about care insurance and legal facilities

Certainly our programme does not claim to be complete. But the depiction from the participants of the training programme lets us conclude that knowing about dementia does not make it easier for both, person with dementia and relative caregiver, but the experience of not being alone and getting to know the thitherto unknown feeling to be more confident by acquiring more resources will certainly contribute towards breaking the taboo of the topic of dementia.

P6.2. Moving beyond training: a psychoeducational programme for formal caregivers of elderly with dementia

Joana Cruz1, Ana Barbosa2, Álvaro Mendes3, Alda Marques4, Daniela Figueiredo5, Liliana Sousa6

1 Department of Health Sciences, University of Aveiro, Portugal,

2 Department of Health Sciences – University of Aveiro, Portugal,

3 Department of Health Sciences, University of Aveiro, Portugal,

4 School of Health Sciences, University of Aveiro, Portugal,

5 School of Health Sciences, University of Aveiro; Unidade de Investigação e Formação sobre Adultos e Idosos (UnIFai), Portugal,

6 Department of Health Sciences, University of Aveiro; Unidade de Investigação e Formação sobre Adultos e Idosos (UnIFai), Portugal,

Background and objectives: Behavioural and psychological symptoms of people with dementia (BPSD) have been identified to be closely related with high levels of stress and burnout among formal caregivers in residential care settings. Significant intervention training programmes have been conducted in the last decade aiming to teach and train staff in managing BPSD. However, these studies failed to address the psychological distress associated with it. Psychoeducational approaches can provide positive contributions because they respond to both educational and supportive needs of formal caregivers. In this study a psychoeducational program for formal caregivers of older people with dementia living in residential care facilities was developed, implemented and evaluated.

Methods: A psychoeducational programme was designed based on the literature and on the results from a focus group interview about the perceived needs and expectations of the potential beneficiaries. The programme is brief and structured, consisting of 8 psychoeducational sessions of 90 minutes each, one every two weeks, during 4 months. It was implemented in a residential care facility for 6 female formal caregivers (average age=40 years old, SD=11.92). The impact of the program on participants’ attitudes and care provision was evaluated by a focus group interview, immediately after the program. The interview was video-recorded, transcribed and submitted to content analysis by 4 independent judges.

Results: Caregivers reported a number of benefits from their participation in the programme, such as: i) acquisition of knowledge about dementia; ii) enhancing person-centred skills for dementia care; iii) application of acquired knowledge in care provision; iv) sharing experiences about the difficulties and the stress related with their job; v) acquisition of problem solving skills and vi) awareness of the importance of relaxation techniques. The lack of time was highlighted as the major limitation to participate in the programme.

Discussion and conclusions: The findings suggest that psychoeducational programmes targeted to formal caregivers of people with dementia can have a significant impact on caregivers’ sense of mastery and self-competency and, therefore may improve the quality of care. It is highlighted the need to develop further programmes in residential care facilities that provide formal caregivers not only with information and dementia care skills, but also with support to improve dealing with stress and burnout associated to dementia care.

P6.3. Education and training of family caregivers: A major challenge for France Alzheimer

Judith Mollard - France Alzheimer, France,

Lyne Valentino – France Alzheimer, France,

Training family caregivers is at the heart of the actions organised by France Alzheimer and is an important part of the support necessary to help the family caregiver who accompanies the person with dementia.

This action comes within the framework of measure 2 of the Alzheimer plan of 2008-2012. It is supported by the State and the CNSA thanks to a financing agreement which places France Azheimer as the main actor today to achieve this national objective.

This action of support to family caregivers is essential and comes within the helping process of family caregivers. It allows them to become more competent, to find solutions to the problems they can meet and to give sense to their commitment to their relative with dementia.

The training organisation:

The training is provided by two trainers: an expert psychologist and a trained volunteer of the departmental association of France Alzheimer.

This co-animation aims at feeding the contributions of the knowledge of the professional by the practical experience of the voluntary person and at bringing a complementary point of vew on the approach of the situations.

It also allows to follow the progress of the participating families by inviting them after the training to keep in touch with the nearest association and by answering the individual problems of the participants.

The training lasts 14 hours. It is composed of 5 different modules: knowing Alzheimer's disease - The possible forms of assistance - Daily caring – Understanding the person with dementia and communicating with them – What it is to be a family caregiver ?

The contents of the training:

The training brings the essential tools to understand the difficulties of the person with dementia (module 1), information on the systems of help and support (module 2), the adaptation of caring to everyday life (module 3), the preservation of the relationship with the person with dementia(module 4), and the necessity to take some time off (module 5).

The training goes beyond information. From contributions of knowledge and practical information, it must allow every participant to act on his(her) own representations, attitudes and behaviour, and so to widen his(her) field of answers in the situations which he(she) has to face. It values the involvement of the family caregiver, the quality of his(her) action and so allows him (her) to identify in a better way the limits of the relationship in which he(she) is involved.

Very satisfied participants:

The assessment of the numerous training sessions led so far shows a great satisfaction of the participants who . appreciate being able to exchange their experiences.

Among the main benefits, the participants mention in order of importance: the improvement of their knowledge of the disease, a better identification of the available aids, the development of a better relationship with the person with dementia, an increase in the capacity to take care of the person with dementia and to face difficult situations in everyday life. Nearly 90% of the trained participants think that the training is going to influence their approach towards the person with dementia.

P6.4. Improving skills through regular supervision of a group of home carers

Beatrice SURBER, Social worker, coordinator of the programme “Support for family carers – Accompanying persons for people with dementia”, Pro Senectute – Rue de la Maladière 4 – 1205 Geneva, Switzerland,

From the start of the programme, in October 2002, as a “joint venture” of the Alzheimer Association Geneva, Pro Senectute and the Geneva Red Cross, it was clear that success and recognition had to be based on reliable and specifically trained semi-professional carers, employed as “accompanying persons” to offer a few hours a week of respite to family carers. Educational follow-up is a strength of this service.

Seven years of practice have shown that, after the initial training, monthly supervision - in two groups - is essential to get a sense of belonging to the group (as it is a one-to-one activity), receive supportive guidance about emotions, feelings, share very accurate and first-hand knowledge about how dementia can affect persons, but above all, how rewarding creativity, humor and empathy can be. In good company and with an experienced approach, a person with dementia can build up trust, confidence, try again former abilities or explore new experiences, in a reassuring setting.

The group of home carers, some 35 persons now, need monitoring when difficulties arise, when the heartbreak of deterioration becomes obvious, after weeks and months or even years of faithful accompanying by the same person, or when the nursing home has become inevitable. Death of the person they cared for is also sadly felt and they need support to come to terms with loss.

In this presentation, some examples of themes debated during these supervisions, with the qualified and very experienced psychologist in charge of the sessions and active participation of the home carers (they also learn from each other), as well as some real life “adventures” that happened during accompanied outings and which needed “debriefing” to learn from them, will be discussed. All the participants benefit immensely from these sometimes intense exchanges, and this regular continuous training over a long period of time gives them that specific “Alzheimer touch”, a subtle knowledge that can only be acquired by interacting with many different persons with dementia and their family carers.



Last Updated: Wednesday 03 November 2010