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P11. Carer training

Detailed programme, abstracts and presentations

P11.1. Development and evaluation of the European STAR training portal: Skilling and re-skilling carers of people with dementia

Dröes Rose-Marie, van der Roest Henriëtte G., Bengtsson Johan E., Giuliano Angele, Hrin Silvia, Kevern Peter, Kingston Paul, Hattink Bart, Abiuso Francesca, Nugent Chris, Meiland Franka J.M.

Background and objectives: Because in the coming decades much less professionals will be available to provide care to people with dementia, the task of caring will be mainly conducted by untrained informal carers and volunteers. In order to care effectively for people with dementia, avoid carer overburden and prevent premature admission to long term care settings, carers, in the European STAR project dementia, educational and technological experts in six countries (The Netherlands, Sweden, Italy, Malta, Romania and UK) are working together to create and evaluate a European multilingual e-learning tool for dementia care.

Methods: Sample, design: The STAR training portal is evaluated among informal carers, volunteers and professional carers in two countries (NL and UK) by a randomised controlled trial (ne+c=140 in total), and two countries (I and S) by using a one group pretest-posttest design (n=15 per country). Assessments are performed with online standardised questionnaires, at baseline and after four months.

Intervention: During a period of 4 months the experimental group has access to the STAR training portal, consisting of eight modules: two on a basic level, six on an intermediate and advanced level of which the last is primarily targeted for professional carers. They also have access to online peer and expert communities for support and exchange of information. The control group has access to public informative websites and materials as usual, however,  do not have access to the STAR training portal.

Measurements: Main outcome measures: 1) user friendliness, 2) usefulness and 3) the impact of the course on the knowledge, attitudes and approaches of carers regarding dementia (primary outcome measures), and also empathy, quality of life, burden and sense of competence of carers (secondary outcome measures).

Results: The STAR training portal provides education on dementia, the disease course, the importance of obtaining a diagnosis, dealing with the practical, social and emotional consequences of dementia, support and communication strategies, and the emotional impact on the carer. Personalised learning paths, textual information, footage, links, reading material and tests are presented. Preliminary results on how carers evaluate the training portal and its impact will be presented.

Conclusion: Preliminary conclusions are drawn on the user friendliness and usefulness of the STAR training in addition to its impact on carers. Final results are expected in Spring 2014. The STAR project has been funded with support from the Lifelong Learning Programme of the European Commission. This publication reflects the views of the authors only.

P11.2. Care provision for people with dementia in Maltese hospital wards: paradoxes between hospital staff perceptions and observational and audit data

Kelly Fiona, Innes Anthea, Scerri Charles, Abela Stephen

Many people with dementia will find themselves living for periods of time in hospital wards either for treatment of co-morbidities, for assessment purposes or when alternative care arrangements cannot be easily found. The experiences of hospital care for those with dementia has attracted media and policy attention, with increasing recognition that being in hospital can be detrimental for people with dementia. This paper discusses the findings of a study evaluating hospital care provision for those with dementia living in two hospital wards in Malta.

The physical environment, the psychosocial care delivery experienced by people with dementia and the views of staff working on the wards were examined using established and validated tools.

The findings highlight a range of care paradoxes. The first is that the physical environment of the hospital wards does not align to the current evidence-based recommendations for good dementia care environments. The second is that the care experienced on the wards was largely ‘non-care’ in the sense that minimal care was actually observed or delivered. The third is that staff working on the wards ranked the setting more positively than the other data collection methods revealed. Our findings also suggest that staff had low expectations of care for those with dementia and low awareness of established care norms and expectations.

In line with National dementia strategies, these findings highlight the need for increased staff development, mentoring and education to raise awareness of how to improve both the physical and psychosocial care environments while exemplifying that small initiatives, if routinely adopted, could contribute to an improved experience for those with dementia living in hospital wards.

P11.3. The nurses’ attitudes towards care of residents with dementia

Grima Daniel, Scerri Josianne

Individuals are living longer due to improvements in health services and technological advances. Presently, in Malta about 14% of the population is over sixty five years. Although dementia is not part of the aging process one of the major health issues related to old age is the increase in prevalence of dementia. In contrast there is a relative dearth in literature which deals specifically with nurses attitudes to these patients. The aim of the study is to investigate nurses’ attitudes regarding the care of patients with dementia. The objectives included determining whether caring for such a patient is a positive and a meaningful experience; whether such care should be provided at home or in a geriatric institution and whether nurses’ attitudes vary by age and gender.

An exploratory inferential cross-sectional research design was used. Data on nurses’ attitudes on care of persons with dementia were collected by means of a questionnaire constructed by Astrom (1986). The tool was distributed to sixty nurses in geriatric wards, having a response rate of 93.3%.

The majority of nurses (91.1%) perceived that they have positive attitudes but would prefer not to have these patients in their wards. This could arise as most respondents (82.1%) perceived patients with dementia as aggressive, difficult to communicate and emotionally to connect with. Additionally caring for these patients was not considered a high status job. In general participants felt that persons with dementia should not be cared for at home and that relatives should be given the opportunity to be involved in their nursing care. A significant difference in nurses attitudes was obtained by gender (F = 5.93, p = 0.04) and age (F = 10.48, p = 0.04) with younger participants (21 – 30 years of age) and male nurses perceiving that it is just as meaningful to work in a residential aged care facility, as in an acute care facility.

The study demonstrated that there is a need for nurses working with persons having dementia to be more knowledgeable about the condition as well as on therapies and skills required to provide optimal holistic care. There is also a need for nurses specialised in dementia care who could also be a source of motivation and information for their colleagues to enable them to improve on their practice. When planning in service courses for nurses a consideration of differences in attitudes by gender and age should be considered.

P11.4. Into D’mentia: Development & evaluation of a virtual-reality experience of dementia

Hattink Bart, Meiland Franka, Campman Carlijn, Sitskoorn Margriet, Rietsema Jan, Dröes Rose-Marie

Objectives: Research by the Dutch Alzheimer Association showed that 82% of the informal carers of people with dementia are at risk of overburdening 18% of them feels severely burdened. Also professional carers experience stress and report difficulties in dealing with persons with dementia. The aim of the Into D’mentia project was to develop and evaluate a dementia simulator and training to promote the understanding and awareness of the experience of people with dementia; thereby aiming to reduce carer burden and promoting more empathetic care.

Methods, Development: First the literature was reviewed on citations of people with dementia on how they experience their dementia. These citations were categorised in themes (adaptation aspects,problem areas,quality of life domains),which were discussed in separate focus groups with persons with dementia and informal carers to know if they recognised these experiences and how it influenced their lives. Additionally,in a survey dementia experts were asked to rate the frequency of the occurrence of the mentioned experiences as well as to appraise the impact of the inventoried problems on the daily lives of people with dementia. All these results were input for the development of a scenario for the Into D’mentia simulator. A first prototype was tested on user friendliness and usefulness among informal carers and dementia experts,which helped fine-tuning the development of the simulator. Parallel to this development a short training was developed on dealing with the functional and psychosocial consequences of dementia.

Evaluation research: In a one-group pretest-posttest design study (in)formal caregivers were interviewed three times: before the intervention, immediately after the intervention and two months later. Outcome measures were: user friendliness and usefulness of the simulator,and (among informal carers) impact of the Into D’mentia experience on coping,feelings of empathy and feelings of competence and (among professional carers) impact on feelings of empathy,approaches to dementia,emotion-oriented care and work satisfaction.

Results: The developed Into D’mentia intervention consists of a simulator in a mobile container using virtual reality and serious gaming techniques,by means of which participants experience the impact of dementia in daily life situations. Besides the simulator,one week later participants are offered a short group training (half a day). The procedure is as follows: After a short introduction on Into D’mentia,people enter the simulator (20 minutes); after the simulation they are interviewed on their experiences (debriefing); one week later during the group training the participants experiences are discussed in small (5 to 10 persons) groups and additional information on dementia and how to deal with the consequences is provided.

35 (In)formal carers participated in the evaluation study. Informal carers were positive on Into D’mentia: 9 out of 10 informal carers indicated that it gave them ‘more insight’. They mentioned that ‘it’s an eye-opener,it shows you how people see you and how you communicate’. 24 out of 25 professional carers agreed that they could ‘use knowledge from Into D’mentia in their daily practice’. They indicated,for example,that after their Into D’mentia experience they looked at people differently, they were better in understanding how people with dementia experience situations as if they are new to them. 21 out of 25 professionals also considered Into D’mentia to be ‘very educational’. Furthermore,they mentioned that the Into D’mentia experience made them ‘much more aware’ and a professional said ‘though I knew much already,it made me more aware of it’. The resultsregarding the evaluation of the impact of Into D’mentia will also be presented at the conference.

Conclusion: A mobile Into D’mentia intervention was developed in which informal carers and professional carers can experience what it is like to have dementia and how it impacts the life of a person with dementia. User friendliness and usefulness are positively evaluated by informal and professional carers. Final analysis of how Into D’mentia impacts the sense of competence of informal carers, work satisfaction of professional carers and whether it promotes empathetic care will be presented at the conference.

P11.5. Putting the Positives into Caring: A Workshop Designed by Carers for Carers

Brown Caroline

Caring for a person with dementia is unique and can be an isolating, intensive, challenging, stressful, and rewarding experience.  Caring for parents, who both have dementia; I am only too well aware of the impact on my wellbeing, my ability to continue caring and the risk of carer burnout.  The stress of caring for someone with dementia is well documented, and can have an impact on the emotional, physical, financial and spiritual wellbeing of carers, all of which may have a profound impact on the relationship between the carer and the person with dementia. This relationship is crucial to creating an environment in which the wellbeing of both carers and people with dementia can flourish.

Supported by Alzheimer Scotland John Killock, writer and communicator, and Caroline Brown, carer, life coach, and member of Alzheimer Scotland’s National Dementia Carers Action Network, worked in partnership to develop and deliver workshops, for carers. The aim of the workshops was to put the positives back into caring.  Building on their own, combined 28 years experience, and that of other carers; Caroline and John designed the workshops to provide a safe and supportive environment for carers of people with dementia to share experiences, listen to others and to learn techniques and tips to help them restore the balance.  The workshops used creative techniques including unique video resources as learning tools to achieve its aim.

This presentation will demonstrate how the creative techniques used in the workshops are effective at improving how participants viewed their caring role by putting the positive back into caring. The presentation will firstly, describe how the workshops were designed and the tools and techniques used, including a short video clip. Secondly, the presentation will draw on the feedback from carers who participated in the workshops to identify the key areas of learning. Thirdly, the presentation considers the next steps in further developing and improving the reach of such workshops.

P11.6. Logotherapeutic approach enhances the skills of professional carers

Heimonen Sirkkaliisa

Logotherapeutic approach has been applied in dementia care in Finland for several years. This approach underlines human dignity and uniqueness of a person, resources, possibilities and meaning in life. At the Age Institute logotherapeutic approach is disseminated in dementia care mainly by education. ‘The Journey of Possibilities’ training is being provided as a part of the ‘Meaning in Old Age’ project (2011-2014). The course contains ten seminars (in ten months) and between the seminars the participants do tasks, which apply the theory into practice. All participants carry out a development project in their own care unit.

The main themes of the course are the principles of logotherapeutic approach in dementia care, the ways to support human dignity and uniqueness of a person with dementia, the central role of encountering in care and meaningful life. The education focuses on the meaning of choices and acts done by carers in daily care situations. The participants have evaluated that as a result of this education they have learned better to see the value of meaningful life for a person with dementia. They recognise better the meanings in moments and their ability to identify possibilities, resources and hope has developed. The participants recognise more deeply the importance of their own actions and choices for the well-being of a person with dementia.

From the basis of experiences and evaluations, a model of education by which logotherapeutic approach is being disseminated in dementia care is constructed. In the future, this type of education for professional carers is needed in order to enhance the quality in dementia care.






Last Updated: Monday 04 November 2013


  • Acknowledgements

    The 23rd Alzheimer Europe Conference in St. Julian's, Malta received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the additional support provided by foundations and companies.
  • European Union