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Oral poster presentations

Abstracts and presentations

An innovative respite and support service in the home of the natural caregiver of a family member with Alzheimer's Disease

Angelina Sartenaer, Baluchon Alzheimer Belgique, Belgium, baluchon@belgacom.net

“Baluchon” is the single word in French that describes the following: a person, often a child, gathers his effects in a polka-dotted kerchief, ties them to the end of a stick, puts the stick over his shoulder and leaves home. In the context of this article, the person who leaves home in order to care for the Alzheimer patient in his or her own home is known as the “baluchonneuse”.

When caregivers need several days of rest, the only service currently offered is that of temporary placement for the patient outside of the home. Families hesitate to avail themselves of such a service because their loved one has difficulty adjusting to the new environment and then re-adjusting to home. Caregivers also lament their inability to objectively evaluate their multi-faceted situation, to assess their loved one's cognitive difficulties as well as his autonomy in the activities of daily living. Baluchon Alzheimer, a new home care service, created in 1999 by Marie Gendron, nurse and PhD in gerontology, makes it possible for caregivers to take one or two weeks of respite time without transferring to another setting the person with Alzheimer's disease; it also supports caregivers by suggesting helpful strategies tailored to their particular situation and by providing an assessment of both the cognitive abilities and the functional autonomy.

In October 2003, Marie Gendron was invited in Belgium to talk about this initiative at a symposium devoted to home care of Alzheimer disease. In 2004 this service was developed in Belgium. A memorandum of intention was signed with Quebec in witch the foundation agrees to respect the concept of Baluchon-Alzheimer’s founder and receive the authorisation to use the logo and the trademark of BA for the Benelux countries. It is a non profit organisation utilising in 2008, 31 “baluchonneuses”. Baluchon Alzheimer Belgium has already helped 400 families.

Can memofilm be used to improve quality of life in dementia? Preliminary report

Giancarlo Savorani, AOSP, Italy, giancarlo.savorani@aosp.bo.it
Co-authors: E. Pini, L. Tondi, V. Ribani, R. Tedesco, E. Melloni ,G. Bertolucci

Introduction: This study rises from the collaboration between physicians and filmmakers on behalf of dementia patients and wants to experiment the possible use of video modalities to decrease the common disruptive behaviours.

Aim: The Memofilm prepared might be a useful tool to counteract the decline of memory and mainly to feel again positive emotions to maintain autonomy and to facilitate the relationships with relatives and professionals. The study called “Memory of the man. The cinema against the memory's pathologies” foresees the creation of 10 Memofilms of 20 minutes, personalised for every patient living in the greatest nursing home of Bologna. The film is based on autobiographic elements that are selected by physicians and relatives drawn from life events, and then discussed together with the film makers. Thus the script becomes the original key point of the film makers’ creativeness. At the basis of the experimentation there is the holistic vision of mind-brain and body in order to stimulate more emotionally than cognitively. We also prepared a model of the Memofilm’s backstage.

Methods: The population is represented by 10 patients and 10 controls. The film is administered several times a day to the patient and it can be updated following the behavioural changes. The patients are tested (MMSE, NPI- NH, distress, check- list) before the first viewing of the film, after two months and again after a one month break.

Results:

  • Cognition decrease 1.5 points (MMSE) after vision vS 2.0 points of the controls
  • Behaviour: decrease of 10 points vS 1.0 point of the controls
  • Caregiver distress: decrease of 2.6 points vs the continuous increase of the controls
  • The professional caregivers and the relatives report great interest and satisfaction with this new experimentation.

The COTESS: COgnitive TESting device for Seniors

Carine Sachem, U.Z. Gent, Belgium, carine.sachem@uzgent.be
Co-authors: Paul Dierick, Anke Bonnewyn

To identify dementia and other cognitive disorders in the elderly, to determine their severity and to orient to treatment and guidance, a well grounded and practical diagnostic test battery is needed. We present the COTESS as the successor of the “Vlaamse Dementie Batterij” (VDB-2; Flemish Dementia Testing device), which we think will fulfill this need still better than was already the case with the VDB-2.

The tests which constitute the COTESS will be situated with respect to the cognitive functions that are meant to be tested: functions of attention, memory functions regarding orientation, anterograde memory functions (learning of new information), retrograde memory functions (recall and recognition from long-term memory), language functions, somatognosis, praxis, logical thinking and executive functions. The anterograde memory tests with a delayed condition take a central place, together with the tests that are inserted as “in between tasks”.

We formulate arguments for the reliability and the validity up till now in the test construction itself and present the research to establish reference groups. Data are already gathered in the “normal elderly” population, elderly without identified cognitive or psychiatric problems, which can be considered as a first reference group. This sample encompasses 343 subjects within the age range 50+ tot 90+. For the time being similar research is running in a sample of persons with (Alzheimer or vascular) dementia to compose a clinical reference group which test results can be contrasted with the data from the reference group “normal elderly”.

Finally we discuss possibilities for application in diagnostics and treatment policies. Within the theme of this congress, we go into the matter of cognitive disturbances that are indicative of dementia and where in the COTESS these can find expression.

The Vermist@hekla.be project: how to collaborate with local police services, hospitals and home and residential care services

Patrick Verhaest, Expertisecentrum Dementia Vlaanderen, Belgium, patrick.verhaest@dementie.be
Co-authors: Jurn Verschraegen, Patrick Crabbé

The local police services of the area HEKLA and representatives of the institutions for particular child welfare, home facilities and hospitals in Hove, Edegem, Kontich, Lint and Aartselaar have signed a protocol that in the future will try to solve disappearances in a smooth and efficient manner. Time is in that respect very important and for this reason the different partners engage themselves to give the necessary information to the police services. The project `vermist@hekla.be’ is the first project for Flanders.

If someone disappears, it is essential to have a rapid appraisal that can make the difference. That means that we have access to the fullest possible profile of the missing person as well as information on where he or she was seen last - the `point last seen’. Sixty per cent of the people with dementia who are missing are found back in the institution where they live. 95 per cent are found back in a range of two kilometres around the spot where the person was seen last.

Furthermore we can find the people with dementia in places linked with their past. The project group drafted a document that mentions all useful data in case of a disappearance. A first evaluation after a test period of four months (now one year) is positive. We are convinced that the project has a big chance for implementation. Project details can be found at: http://www.hekla.be/zdiensten/vermissing/.

User evaluation of the DEM-DISC

Henriëtte van der Roest, VU University Medical Centre, Netherlands, hg.vanderroest@vumc.nl
C-authors: F.J.M. Meiland, C. Jonker, R.M. Dröes

The need for information about the disease and coping with the consequences as well as on available care and welfare services, is frequently unmet in people with dementia and their carers. To provide carers of community dwelling people with dementia with tailored information, the DEMentia specific Dynamic Interactive Social Chart (DEM-DISC) was developed. The user friendliness, the usefulness and the impact of a first prototype of DEM-DISC on the daily life of people with dementia and their carers were evaluated. DEM-DISC was tested among informal carers in a pre-test-post-test control group design. Fourteen informal carers were provided with access to DEM-DISC in their own home during a two month period. Fourteen controls did not have access to DEM-DISC. Data were collected by separate interviews with people with dementia and carers at pre- and post-test, by digital logging, by short telephone interviews and by a bottleneck checklist during the intervention period.

Though carers in the experimental group were not explicitly satisfied with this first prototype of DEM-DISC, they found DEM-DISC easy to learn and relatively user friendly. And after two months of DEM-DISC use they already reported higher levels of competence than controls. People with dementia and informal carers in the DEM-DISC group also reported more met and less unmet needs. The positive effects might be caused by the systematic and tailored individual way of information provisioning by DEM-DISC. Further development of DEM-DISC and randomised trials into the impact on patients and carers as well as the impact on nursing home admission and health care expenditure are worthwhile to investigate.

Cutting-edge insights in aging-related brain pathology prevention

Luiza Spiru, Ana Aslan International Academy of Anti-Aging, Romania, office@brainaging.ro

Purpose: Adoption of healthier behaviours and regular health screenings performing could reduce the risk of chronic diseases, resulting in lower health care costs and improvement of old people’s life quality. Keeping them healthy, socially active and able to make use of their remaining capacities is the key answer to the challenges of global population ageing. Our presentation deals with the three main sore points of this struggle: understanding healthy versus pathological brain ageing; elaboration of powerful diagnosis tools; elaboration of preventive and curative, medical and non-medical algorithms able to delay the onset of age-related brain pathology.

Method Our study is the outcome of an exhaustive bibliographical research and our direct involvement in specific international debates around the acquisitions and controversies in the field.

Results The first section, “Normal Versus Pathological Ageing“ reviews cutting-edge insights related to natural changes in the absence of disease, their cultural, gender and bio-medical particularities, and points out on the huge individual variation. The causal aspects of ageing focus on the programmed versus wear & tear ageing, glycation theory, glucocorticoid cascade hypothesis, stress and depression, inflammation, telomeres, sirtuins, presenilin mutations etc. The second part, “Cutting-edge tools in Brain Ageing Diagnosis” is tailored on the most actual tools able to reveal the onset of brain pathological events before their clinical expression. Sophisticated imaging tools and biological fluid markers are overviewed, as well as the attempts to detect brain pathology onset by matching them with powerful interview methods and highly sensitive psychological tests. The last section critically overviews the cutting-edge algorithms elaborated for brain ageing delay and brain pathology prevention. The healthy ageing model addresses the management of both nature and nurture aspects. Reconsideration of old geriatrics and the recent insights on brain self-protection and self-repair are commented, aside the concept of cognitive reserve.

Conclusions Brain ageing delay and brain pathology prevention resides in the accuracy and powerfulness of early diagnosis tools as the first, decisive step. The way to manage and perform them is open and strongly supported by the scientific and technological progress.

Thinking about the environment: An exploratory study of pictorial signage and way finding

Gayle J. Booth, FIND, United Kingdom, gayle@multimount.com

During the last ten years the importance of designing care environments has gathered considerable momentum (Brawley, 2005). A useful epistemological turn in disability studies was the development of the social model (Barnes and Mercer, 2005). Essentially, this epistemological stance regards disability as a socially constructed condition but the model embraces various social theories of disability. Essentially, the social model was developed out of an interpretivist perspective and argues that mainstream environments exclude people who have physical and cognitive impairments. Contrasting this, the individual model observes that the disability as such is the physical product of biology acting upon the functioning of individuals. Despite the social model having received considerable attention, the design of environments and signage continues to be based around the needs of mainstream individuals.

Mainstream ideologies could be argued to be institutionalised and transferred through the environments that they dwell in therefore disempowering service users whose physical and cognitive abilities are affected with conditions such as dementia. Scholars and practitioners have begun to break down these barriers by attempting to interpret the service users’ world and how the service users may interpret their surroundings. Examples of this work are life histories, care mapping, internal and outdoor design stimuli. In particular, the importance of signage and its effects within dementia care settings has encouraged scholars and practitioners to think about for example, the use of the appearance and the positioning of signage and how matters such as these can assist with wayfinding, orientation and sense of well being (Pool, 2007). The use of pictorial signage within dementia care settings, however has received less attention. This research aims to bridge this gap in the literature.

This research explored the effects of pictorial signage within six care settings. The project engaged with the managers of the care settings and their first hand experience of the effects of this type of pictorial signage. No residents were consulted with this research. The preliminary findings of this study are presented together with examples of the signage used within the care settings. The findings of this research indicate positive effects in terms of wayfinding and orientation and highlight subsequent benefits to service users’ independence and dignity.

Volunteers in the dementia care

Aud Johannessen, Norwegian Centre for Dementia Research, Norway, aud.johannessen@aldringohelse.no

Background: Most people with dementia develop behavioural and psychological symptoms (BPSD) during the course of the illness. They will need support from other people to cope with everyday life for many years. Studies show that the environment has an effect on the BPSD symptoms and how person with dementia manage to cope in everyday life. With this in mind it would be natural to give volunteers knowledge about dementia and supervision to make their contribution more helpful for people with dementia. Use of volunteers in the caring for people with dementia may also help the relatives.

Aim: The aim of this study is to explore what kind of education and supervision programs for volunteers exist, and what are the experiences.

Method: A review was performed of literature retrieved from searches in Cinahl, Psykinfo, Swemed and Pubmed. The searches were limited to studies published in 1997 and later. Only studies written in Danish, Swedish Norwegian, English and German were included.

Results: There is not much research within this field only five papers were found. The review showed that it is difficult to recruit and keep volunteers over time. Mostly all of the volunteers are women and they are low educated. The volunteers quit due to personal reasons. All the papers show that volunteers need to be educated about dementia and how to interact with a person suffering from dementia. They also seem to need continuous supervision.

Conclusion: Volunteers may represent a useful resource in the dementia care. However, they need knowledge about dementia and continuous supervision from the community. It must also be focused on how to recruited new volunteers because many quit after some time.

With the courage of a discoverer. A professionally-led support group for people with non-reversible memory deficits

Claire Meire, Expertisecentrum dementie Foton, Belgium, claire.meire@familiezorg-wvl.be

Context: Persons who got recently confronted with the diagnosis of dementia go through a very difficult phase in their life. Next to the bewildering diagnosis, there are the repeated, hurtful confrontations with one’s own deficits, the fear of further deterioration and loss of identity, the confrontation with an environment that equally got upset by the diagnosis and with a society that often considers dementia as a taboo.

Support group: The support group is an initiative of FOTON, the Bruges Expertisecentrum dementie (Expert Centre on Dementia) and home care support. The local memory clinics gave their full support.

The initiative wants to bring together people with a diagnosis of dementia and, at least, some awareness of their illness. The primary goal is to offer them a context of safety and comprehension where rather painful experiences as well as ‘new discoveries’ can be discussed. Each session is started with some psychomotor exercises that give people the occasion to carefully discover the boundaries of their body and of their self. The initiative started in September 2005 and has definitely grown over the past three years. It happens to be a real ‘piece of luck’ for the participants and a wonderful experience for all of the coaches. The exploration of the concept and the experiences are shared in a book “Een steen in je hand. Dementie bespreekbaar maken” (A pebble in one’s hand. To bring dementia into the forum). The mentioned pebble that is carefully chosen by each participant, is used as a connecting ritual object

Successful implementation of assisting networks using the example of innovative practical projects of the “Dementia Service Centre for Cologne and the Southern Rhine area”

Stefan Kleinstueck, Demenz-Servicezentrum für die Region Köln und das südliche Rheinland, Germany, demenz-servicezentrum@alexianer-koeln.de
Co-author: Aenne Tuerke

At present it is estimated that about 300,000 people with dementia live in the district of North Rhine Westphalia. The majority of patients are looked after by their relatives at home. Carers are frequently working at the limits of their physical and psychological abilities.

The aim of this unique, large-scale initiative in a district is to promote the exchange of the caring relatives and their experiences and the networking of initiatives, model projects and services for people with dementia and their relatives in North Rhine Westphalia, as well as to contribute to remove the stigma associated with dementia amongst the general public. To reach this aim, a coordination of institutional structures in the field of dementia is essential.

The governmental initiative “Dementia Service North Rhine-Westphalia” was formed to support (caring) relatives, but also for people with dementia and their professional assistants. For people with dementia, it is a joint platform focused on the improvement of in-home care and the provision of support for the caring family members. The district-wide initiative is financed by the Ministry of Work, Health and Social Affairs of the district of North Rhine Westphalia, the Foundation for Social Welfare Nursing and the nursing insurance companies. The coordination is conducted by the Kuratorium Deutsche Altershilfe (KDA). The projects belonging to the state-wide initiative receive scientific support from the Institut für Sozial- und Kulturforschung e. V. To date, 11 dementia service centres have been founded in the district of North Rhine Westphalia including the “Dementia Service Centre for Cologne and the Southern Rhine area”.

The main focus of this Service Centre is to implement sustaining assisting framework by using assisting networks and instituting practical projects. Some of these projects will be introduced in this presentation. The common ground of all these projects is to enable people with dementia and their caring relatives to continue a high quality life with normality and to take part in social life. The issue of dementia is no longer a taboo.

Mastery over dementia: Online counselling for family caregivers of people with dementia

Anne Margriet Pot; Netherlands Institute of Mental health and Addiction, Netherlands, ampot@trimbos.nl
Co-author: Bernadette Willemse

The problems of family caregivers of people with dementia have been studied extensively.

The results show a negative impact on mental health, varying from feelings of burden to psychiatric disorders including depression. Results on the treatment of caregivers’ psychological problems are less clear-cut. They show no or only modest benefits. Web-based interventions offer a very promising source of support, especially in view of the characteristics of the competing demands and limited time available to many caregivers. In addition, web-based interventions might be less stigmatizing compared to care provided by a mental health institute, which may be important for caregivers who often don’t see themselves as the ones who need help, because they are focused on the needs of the person with dementia.

This presentation will be focused on an innovative web-based intervention, i.e. ‘Mastery over dementia’, for family caregivers of people with dementia. ‘Mastery over dementia’ is a preventive intervention under the guidance of a professional counselor, and consists of 8 sessions and a booster session after one month. The Internet course consists of interactive learning on how to cope with behaviour problems and care-problems and make a plan for what to do in crisis situations (problem solving techniques), changing upsetting thoughts (cognitive behavioral techniques); relaxation and doing pleasant activities; learning to become more assertive and mobilizing social support. This is in line with the latest evidence on the effective elements of face-to face interventions to reduce caregiver stress.

‘Mastery over dementia’ is developed by the Netherlands Institute of mental health and Addiction in collaboration with Alzheimer Netherlands and health care provider Foundation Geriant.

 

 
 

Last Updated: Wednesday 21 October 2009

 

 
 

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