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P1. From diagnosis to post-diagnostic support

Detailed programme, abstracts and presentations

P1.1. Changing attitudes towards dementia in general practice

Vollmar Horst Christian, Michel Jacqueline Verena, Leve Verena, Wilm Stefan, Pentzek Michael

Introduction: General practitioners (GP) are assigned a central role in caring for persons with dementia. The CADIF project (ChangingAttitudes towardsDementiaInFamily practice) encompasses the development and testing of an intervention that is based on a comprehensive understanding of GPs’ attitudes towards dementia. In addition to conducting a systematic review, identified research groups were contacted to obtain further training material.    

Research question: Existing interventions were aggregated by means of a systematic review. The Düsseldorf Cochrane Group supported the formulation of search strategies. The search included resources available in the databases Medline, Embase, Cochrane, CINAHL, Psychinfo, ERIC, Scopus as well as Web of Science.

Results: A total of 10’220 titles/abstracts was identified and reviewed by two independent researchers. About 100 full-text publications were further analysed for eligibility. In terms of preliminary or qualitative results, individual studies suggest that “peer-to-peer” interventions possibly have an effect on GPs’ attitudes.  

Conclusions: The results of the systematic review serve as a basis for the development of an intervention which is at first discussed by focus groups.

P1.2. Facing the challenges together: A family training programme for younger people with dementia and their carers

Garden May-Hilde, Andersen Astrid

Background: Nearly three quarters of all local authorities in Norway provide support groups and training opportunities for people with dementia and their carers. Despite having unique needs, very few younger people with dementia receive an offer of support from their local authority. In 2012 Norwegian Health Association and the National Centre for Aging and Health received financial support from Norway’s Department of Health to organise eight courses across the country targeted at younger people with dementia and their carers. The courses aim to give younger people with dementia and their carers knowledge and support to help make their lives easier and better.

Method: To help plan the courses, we established working groups in Norway’s different health regions, with representatives from specialist health services and the local Dementia Association. The course took place over four days and included lectures, support groups, social activities. The course was evaluated through interviews with participants in small discussion groups on the last day of the course.

Results: A total of 146 people (73 people with dementia and 73 carers) participated in the course. The average age for people with dementia taking part was 62.4 years, and for carers was 58.6 years. The evaluation revealed that the course had given participants an experience of increased openness in their relationship with their family and more insight into their own situation.Carers received increased knowledge and understanding of how dementia had an impact on their loved ones daily life and how they could face the challenges together. Many described the participation in the programme as an emotional recess, a boost in their everyday lives and an oasis for growth and self-respect. The training programme will continue the next 3 years.

Conclusion: Younger people with dementia and their carers have a need to meet with others in the same situation as themselves. This course has given people affected by dementia the opportunity to meet and gain more insight into their own situation. The course has encouraged greater openness between the person with dementia and their carer so that they can better talk with each other about dementia and everyday challenges.

P1.3. Network of memory expert and support centres provides information and guidance in Finland

Pajala Krista, Alaranta Maaret

More than 13,000 people in Finland are diagnosed with a dementing disease every year. Those with progressive memory disorders need support and thus, they rely heavily on social welfare and health care services. With early diagnosis of memory disorders and adequate treatment and support it is possible to improve functional ability and their quality of life.

Funding granted by Finland’s Slot Machine Association in 2006 enabled Alzheimer and dementia associations in Finland to start nationwide pilot memory expert and support program. Thereafter 17 expert and support centres have been established which are managed by the Alzheimer and dementia associations, and they cover almost entire Finland.

The Alzheimer society of Finland coordinates the network of regional expert and support centres in order to ensure that centres follow common criteria, which include a commitment to network, customer orientation and evaluation of the work. The main goal is to improve and expand services for people with memory disorders and their caregivers. The support centres aims to provide effective and well known network in cooperation with other sectors concerned. Centres supports and promotes memory nurses work in order to provide seamless care. In addition, one of the key targets is to improve the quality of life of people with dementing disease and their caregivers by providing opportunities to participate in activities organised by centres.

Expert and support centres have an important role in developing their know-how skills and expertise in dementing diseases. Within 3.8 million euro and over 50 employees centres are able to ensure that the people with dementing disease and their families are adequately informed of the memory disorders. The centres organise different kind of information courses for people with memory disorders and their families and also establishes voluntary and peer support groups. Regional centres not only provide support and guidance to patients and their families, but also strengthen the collaboration in the association field. With the help of regional centres voluntary associations are able to create links between each other and with the local authorities. In network-sessions, organised by centres, future challenges and new ways to organise the activities rise to important role.  

So far with regional support centres it has been created a nation-wide network to strengthen volunteer work and cooperation regarding dementing disease. As a result, services of people with memory disorders have improved. Regional expert and support centres ensure that people with memory-related diseases and their caregiver have the opportunity to influence and participate as a full member of their own environment.

P1.4. Evidence based recommendations for timely diagnosis of dementia: Benchmarking against the ALCOVE recommendations

Brooker Dawn, Evans Simon, La Fontaine Jenny, Bray Jennifer, Ashley Peter, Saad Karim

ALzheimer’s COoperative Valuation in Europe (ALCOVE) was a Joint Action co-financed by the European Commission and a number of member states who led work programmes.  This involved 30 partners from 19 EU Member States, working cooperatively to improve knowledge and promote information exchange about dementia. Over the past two years, we worked to produce a set of evidence based recommendations for policy makers on dementia.

The authors of this paper led the work on Early Diagnosis and Interventions, reviewing evidence from a wide range of scientific, policy and qualitative literature on the technical issues on diagnosis and on the process of diagnosis to ensure a person centred approach alongside a survey of current practice in 24 EU countries. Timely diagnosis is supported by the research literature and many European countries want to improve diagnosis rates.

We reflected on this evidence through a series of discussion groups with people with dementia, family carers and professionals (including Alzheimer Europe 2012) to develop evidence-based recommendations. Recommendations are provided in the key areas of timely detection, the diagnostic process, complex diagnoses, response to early cognitive changes and work-force. Underpinning principles include the need to decrease fear and stigma; respecting the centrality of the rights and wishes of the person with suspected dementia; recognition that the diagnosis of dementia is a key intervention and that the needs of the person and their family/significant others are central to assessment, diagnosis and post-diagnostic interventions.

A sound and sensitively delivered diagnosis is a key intervention that shapes how the person with dementia and their family integrates this into their lives. The recommendations and the underlying development work will be shared in this presentation. Using the ALCOVE recommendations it is possible to benchmark the progress at a local, national and European level. This will be of interest to all those involved in the process of wanting to improve both the numbers of people diagnosed and the quality of that diagnosis.

Acknowledgements to Contributing Authors:

  • Dr Armelle Leperre – Desplanques,  Haute Autorité de Santé, France;
  • Tomás López-Peña Ordoñez, Institudo de Salud Carlos III, Spain;
  • Pr Michal Novak, Slovenska Akademia Vied – Neuroimmunologicky Ustav, Slovakia;
  • Pr Nicola Vanacore, Istituto Superiore di Sanità, Italy;
  • Dr Helka Hosia-Randel, National Institute of Health and Welfare, Finland;
  • Bénédicte Gombault, King Baudoin Fundation, Belgium;
  • Pr Anders Wimo, Karolinska Institute, Sweden.

P1.5. How do family carers of community-dwelling people with dementia perceive the onset of the disease? Results from a qualitative study using a hermeneutic approach

von Kutzleben Milena

Background: Informal carers are the main care providers for community-dwelling persons with dementia in terms of providing as well as organising care. The results presented here come from a comprehensive mixed-methods study (VerAH-Dem) on care arrangements for community-dwelling persons with dementia in Germany. The qualitative arm of theVerAH-Demstudy aims to examine how primary carers make everyday decisions regarding service utilisation over the course of the disease. The research questions for this presentation are: How do informal carers interpret first symptoms and how do they perceive the onset of the disease?

Methods: A sample of primary carers (n=8) was interviewed using guided interviews with a highly narrative approach. ‘Objective Hermeneutics’ is applied in the data analysis to conduct case reconstructions.

Results: In most care arrangements one family member assumed the role of the primary carer who makes, decisions widely autonomously. In general, families tended to postpone seeking medical advice for a while. Different approaches to interpret first symptoms became apparent: While some felt alerted by noticing physical deficits, others perceived cognitive decline as the most profound change. Carers searched for external references to gain orientation, to comprehend the situation, and to prepare for their role as informal caregivers. Some assumed the existence of certain rules regarding the stages and course of the illness, which made it easier for them to find orientation and to prepare for the future. The lack of mental capacity was perceived differently. In some cases the person with dementia was seen and treated “like a child” that had to be cared for, while others were struggling to take over the decision making power in this early stage of the disease. Overall, everyday decision-making seems to be by far more implicit than explicit and carers tend to act according to their habitual routines.

Discussion: Families try to maintain normality and routines for as long as possible – this includes a certain period of denial, before seeking clarity through a confirmed diagnosis. This period could be crucial for the success and stability of the care arrangement over the course of the disease. The domesticity is the most common care setting for persons with dementia and as health and social care systems are highly reliant on these resources, structures have to be developed that enable informal carers to ‘do their work’ and supporting them, rather than treating them as cases that have to be managed from the outside.

P1.6. Does tailored education improve the diagnosis and management of dementia in general practice? Findings from the EVIDEM-ED pragmatic cluster RCT

Iliffe Steve, Wilcock Jane, Jain Priya, Thuné-Boyle Ingela

Purpose: Primary care has a pivotal role to play in dementia diagnosis and management but under-performance is common. Policy pressure and financial incentivisation of dementia care in the  NHS provides an ideal opportunity to test an educational intervention.

Methods: We tested a tailored educational intervention package for primary care designed to improve diagnosis and clinical management in an unblinded cluster RCT in twenty-three urban, semi-urban and rural group practices in South East England. A search of electronic medical records identified 1072 people with dementia across the practices. The intervention consisted of up to three practice-based workshops, with their content derived from prior educational needs assessment and educational prescriptions, delivered by experienced tutors. The main outcome measures werecase detection pre and post intervention, and rates of two or more documented annual management reviews of people with dementia.

Results: Case detection before and after intervention was not significantly different between arms. The estimated Incidence Rate Ratio for the intervention versus the control group was 1.03, [95% CI (0.57, 1.86), p=0.93]. The number of people with dementia with two or more annual management reviews documented did not differ between the two arms. The odds ratio for two or more reviews in the intervention arm compared with normal care was 0.83 [95% CI (0.52, 1.33), p=0.44].

Consequences: Despite high face-validity, positive feedback from practitioners and ideal conditions for promoting change, a tailored educational intervention does not improve dementia earlier identification or later support of people with dementia in general practice. This English study may have implications for development of community-based dementia services in other countries.

 

 
 

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
 
 

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