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Parallel Session P9 - Innovative care services and approaches (2)

Detailed Programme and abstracts

Saturday, 2 October – 11.00-12.00 (Red Room)

P9.1. ARDEM: an expanding network devoted to people with dementia in a Belgian rural area

Christian Gilles, MD, Centre Hospitalier de l'Ardenne, Geriatrics Dpt and Memory Clinic, Libramont, Belgium, Christian.Gilles@CHA.BE, on behalf of the ARDEM group.

It is not acceptable that living in the countryside equates with a loss of chance of being properly rescued and treated. The province of Luxembourg is the widest Belgian province. It is sparsely populated and has no big city. The health authority is facing the challenge of providing facilities that are evenly distributed and accessible to all the citizens. The case of dementias goes beyond those common issues. Elderly people who spent all their life in this area remain less well informed of the meaning of cognitive impairment. Because of isolation or because everybody is aware of what happens to the neighbour in small villages, they can be shy of seeking help. On the other hand, fewer skilled professionals are available. It has been emphasized that a diagnosis of dementia is stigmatizing and that efforts should be made to keep the patients involved in the social life. Again, such opportunities are less accessible in the countryside than in cities.

“ARDEM”, a contraction of “Ardenne” (the region) and “Dementia”, was promoted by the Belgian Ligue Alzheimer in the wake of its 2007 national symposium, held in Libramont. It gathers a range of involved workers (MDs, social workers, nursing home managers, visiting nurses, home services providers, politicians, teaching nurses…) with the goal of covering the unmet needs in the field of dementias.

The primary task consists in providing information to laypeople and to professionals who should be involved in the care of demented patients. In the first season, we delivered lectures that were all given in the same place. It was unrealistic to expect that people would come from everywhere in the province and, actually, they did not. For the second one, we decided to go toward people: each lecture or workshop was given in a different place (most often a resting home or a day care centre). It paid off, with much larger audiences attending the events. The next challenge could be to provide all the lectures to each of the visited place.

As stated last year, we are currently running a one-year training program for professionals, dedicated to the snoezelen approach of demented people in nursing homes. The next step will be to set up an on-site follow-up service.

Last but not least, we are now engaging in fighting stigmatization. Once a diagnosis of dementia has been announced, patients are offered a pharmacological treatment if appropriate, cognitive rehabilitation if available or day-care centre going, and, in the best cases, families are invited to information-expression sessions. In any case, they are given a rather passive role and are seen mainly as recipients of what they can be offered. They need all the above-mentioned cares, but deserve to keep existing outside them as well. Our project is to set up a directory of the existing associations within the province and to ask each to include one or two patients, in order to allow them being active, in their usual field of activity if possible. We can provide the members of those associations with training about dementia if they request it, but our feeling is that it will not be necessary.

Year after year ARDEM is spinning a web of care, help and solidarity around our demented citizens. If we cannot (yet) defeat the disease, let’s at least minimize its consequences on their lives.

P9.2. Are quality criteria for Memory Clinics needed? A statement from the European Memory Clinics Association (EMCA)

Matthias W. Riepe1, Andreas U. Monsch2, Michael Rainer3, Gabriela Stoppe4, Gerald Gatterer5, Pasquale Calabrese6, Klaus Fassbender7

1 Division of Mental Health and Old Age Psychiatry, Psychiatry II, Ulm University, Ulm, Germany, matthias.riepe@uni-ulm.de

2 Memory Clinic, Dept. of Geriatrics, University Hospital Basel, Basel, Switzerland, andreas.monsch@unibas.ch

3Memory-clinic and the Karl Landsteiner Institut of memory- and Alzheimer research, psychiatric department SMZOst, Vienna, Austria, michael.rainer@wienkav.at

4University Psychiatric Hospitals, University of Basel, Basel, Switzerland, gabriela.stoppe@upkbs.ch

5Geriatriezentrum Wienerwald, Neudorf, Austria, gerald.gatterer@wienkav.at

6Dept. of Psychology, University of Basel, and Dept. of Neuropsychology and Behavioral Neurology Lugano, Switzerland, pasquale.calabrese@unibas.ch

7Department of Neurology, Saarland University, Homburg, Germany, klaus.fassbender@uniklinikum-saarland.de

In 2009 the European Memory Clinics Association (EMCA) was founded as a result of the working group of the German-speaking Memory Clinics. The working group started in Basel (Switzerland) in 1995 and served as an interdisciplinary platform to discuss diagnostic and therapeutic procedures of Memory Clinics in Austria, Germany, and Switzerland. Meetings with increasing numbers of dementia experts were organized on an almost annual basis. It helped to promote informal standards in times when awareness towards the increasing prevalence of Alzheimer’s disease and other dementias increased in relevant medical disciplines (Geriatrics, Neurology, Neuropsychology, and Psychiatry).

Over the last years the number of ‘Memory Clinics’ increased in Austria, Germany, and Switzerland as in many other European Countries. Today, however, diagnostic and therapeutic algorithms seem to diversify, not always for the sake of the patients and proxies. Thus, in July 2009 the European Memory Clinics Association (EMCA) was founded to help organize dementia specialists working in Memory Clinics or being interested therein.

EMCA aims to bundle the experience of discussions over the last 15 years and to develop standards that guarantee the quality of the assessments, advice, treatment, and care provided for patients and proxies. It seeks to bridge experience and opinions developed in different medical disciplines (Psychiatry, Neuropsychology, Neurology, and Geriatrics), to promote quality standards, to ease the dialogue with patient organizations, but also to reinforce clinical-based research efforts and related networks. Having started in Austria, Germany, and Switzerland we hope that dementia specialists from Memory Clinics in other European countries will join this initiative.

P9.3. Caring for the carer: Project “Life after care”

A. Efthymiou1, A. Vlachogianni1, M. Starr2, E. Kavanagh3, Dr L. O’ Sullivan3, Dr B. Leonardi4, L. Boccaletti5

1 Athens Association of Alzheimer’s Disease and Related Disorders, M. Mousourou 89, Athens, Greece, 11636 kentroalz@ath.forthnet.gr

2 Carers UK, 20 Great Dover Street, London, SE 1 4LX kentroalz@ath.forthnet.gr

3 Care Alliance of Ireland, Coleraine House, Coleraine Street, Dublin 7, Ireland ndo@carealliance.ie

4 Arco, www.arcopolis.it leonardi@arcopolis.it

5 Sofia societa cooperativa, via Lenin 55, 41012 Carpi, Italy progetti@anzianienonsolo.it

Introduction: Life After Care is a project, funded by the European Program “Grundtvig”, aimed to explore family carers transition from caregiving to post-caregiving status and to support their (re)insertion into working or volunteering activities.

The project, carried out by a partnership of British, Irish, Italian and Greek NGOs, has realized so far local field work activities and first results are now available.

Method: 45 semi-structured interviews have been conducted in Italy and Greece exploring the post-caring experience in terms of attitudes, emotions, coping strategies and detecting skills developed within the caring experience which might be useful in the view of a job re-insertion.

Results: The results show that the carers experience of transition from the caring to post- caring status depends on the coping strategies used during the caring period. Carers with positive feelings towards their role have a better adaptation after the loss of their relative in comparison to those who have had negative attitude.

Discussion: Psychoeducational programmes provide carers with coping strategies during care and consequently prepare them for a more easy transition to ex-caring role.

Interviews have also shown that carers through caring experience develop a number of transversal competences (especially in the area of problem solving, initiative, empathy) that are worth being enlightened when looking for job reinsertion.

P9.4. The savvy caregiver programme – An intervention on family members of Alzheimer patients

Luisa Bartorelli1,2, Silvia Ragni1,2, Stephanie Levi1, Franco Giubilei1,3

1Alzheimer Uniti Onlus, Italy info@alzheimeruniti.it

2Centro Alzheimer Fondazione Roma, Italy centroalzheimer@hospicesacrocuore.it

3Università di Roma “La Sapienza,” Italy franco.giubilei@uniroma1.it

Introduction: It is well known that giving support to familial caregivers of people with dementia not only helps the caregivers but also has a favorable impact on the course of the disease and on the quality of life of the entire family nucleus. Alzheimer Uniti Onlus, together with other partners, has experimented with a psycho-educational approach to the caregivers that is effective, accessible and reproducible.

Material and method: 74 patients (43 women), with a median age of 78.4 ±7.5 and a diagnosis of probable Alzheimer’s disease according to the NINCDS-ADRDA criteria, were recruited from five centres: the Alzheimer unit of the Fondazione Roma and Alzheimer units in four hospitals. The caregivers of 43 of the patients were included in the psycho-educational course, whereas the caregivers for the remaining 31 patients served as a control group, participating in their usual monthly support groups. The two groups of patients were of similar age (79.1 ±7.3 vs 77.4 ± 7.7) and education (8.8 ± 4.8 vs 9 ± 5). There were also no significant differences in age (57.3 ± 12.4 vs 59.4 ± 13.7) nor education (12.4 ± 3.4 vs 13.1 ± 3.5) between the two groups of caregivers. In general, there were more women in both groups of caregivers (81.4% vs 80.6%). The course took place in six weekly sessions of two hours each, with additional homework. The caregivers were given the Caregiver Manual; the trainers (a geriatrician, a neurologist and a psychologist in each of the five centres) were given the Trainer’s Manual.

The caregivers completed a self-evaluation questionnaire before the start of the course (T ); an evaluator administered blind CES-D and NPI to the caregivers as well as the MMSE to the patients.

Evaluations were repeated at the end of the course (T1) and after two months (T2). At T1 a questionnaire was also given out to evaluate the course.

Results: As expected, no differences were observed in the MMSE of patients in the two groups. The total NPI was significantly reduced in the patients who had caregivers included in the psycho-educational program (p<0.0001); and this reduction continued until T2. Similarly, the NPI stress level was reduced significantly for those caregivers in the programme (p<0.0001). Also the CES-D had significantly reduced at T1(p<0.0001). The difference in the CES-D between the two groups of caregivers was even more significant at T2.

Conclusion: Preliminary data suggest that this type of psycho-educational method could reduce behavioral disturbances in patients with Alzheimer’s disease and at the same time reduce the stress level of the caregiver. The result is a positive effect on the depressive symptoms of the caregiver that can last even two months after the end of the course. Such programs could be considered a form of non-pharmacological therapy in the treatment of Alzheimer’s disease

Bibliography:

  • Mittleman, MS et al. “Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer’s disease.” American Journal of Psychiatry May 2004; 161(5): 850-856.
  • Monini, P; Tognetti, A. and Bartorelli, L. “The importance of awareness: an experience of small support groups for the caregivers of Alzheimer’s disease patients.” Arch. Gerontol. Geriatr. 2001: suppl. 7, 267-271.
  • Hepburn, K. et al. “The Savvy Caregiver program: the demonstrated effectiveness of a transportable dementia caregiver psychoeducation program.” J. Geront. Nurs. 2007
  • Lamura, G. et al. “Family carers’ experiences using support services in Europe: empirical evidence from the Eurofamcare study.” Gerontologist 2008; 48(6): 752-771.

 

 
 

Last Updated: Wednesday 03 November 2010

 

 
 

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