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P4. Policy initiatives

Detailed Programme, abstracts and presentations

P4.1. Improving the quality of services that assess and diagnose dementia

Sophie Hodge

The Memory Services National Accreditation Programme (MSNAP) is a quality improvement programme for memory clinics and memory services in the UK, focusing on the areas of assessment and diagnosis. It is a standards-based programme which supports memory services to improve their quality and achieve accreditation, through a process of self- and peer-review which occurs every 2 years. It is managed by the Royal College of Psychiatrists.

By June 2011 the nationwide programme will have been running for 2 years and the first of our member services will be undergoing their second cycle of review. This presentation aims to compare the results of the first and second cycles of review, to ascertain whether or not these services have changed in terms of their adherence to the standards, and to provide some initial evidence as to whether MSNAP has been successful in engaging services in continuous quality improvement.

The ultimate aim of the programme is to improve the experience of people with dementia and their carers who receive an assessment and diagnosis in such services, and so this presentation will explore the qualitative and quantitative responses from questionnaires given to service users and carers as well as changes in process, staffing and good practice.

P4.2. The situation of people with dementia in Germany in 2030 – a multidisciplinary scenario approach (Sce-Dem)

Horst Christian Vollmar, Ines Buscher, Ewa Dönitz, Kerstin Goluchowicz, Stefan Wilm, Bernd Beckert, Christine Riesner, Sabine Bartholomeyczik

Objective: To the increase of persons with dementia (PwD) the German Government has reacted with some research initiatives. Despite a higher research funding in the field of dementia there are still existing deficits in health care. To anticipate different alternative futures of health care of PwD in Germany, the German Centre of Neurodegenerative Disease (DZNE) initiated in co-operation with Witten/Herdecke University (UWH) and the Fraunhofer Institute of Systems- and Innovation Research (ISI) a multidisciplinary scenario process.

Method: Scenarios are often used for foresight and strategic management which different techniques. We used a 6-step approach:

  1. Identification of relevant influencing areas via literature review and internet research
  2. Systematic collection of relevant trends in the influencing areas (so called descriptors)
  3. Discussion and validation of these descriptors and their characteristics in a workshop with 50 multidisciplinary experts
  4. Combining of the relevant descriptors in a so called consistence-matrix
  5. Calculation of consistent combination with a mathematical program (sets of scenarios)
  6. Formulation of the most consistent and robust scenarios as possible pictures of the future and feedback to the participating experts.

Results: As a result of the scenario process, five consistent scenarios have been developed. Two of these could be described as dark scenarios with very poor prospects. One has been titled as “well-meant but badly done”. Two scenarios have mostly been positive aspects but one has been the tendency towards an Orwellian Big Brother state. With the technique of backcasting the authors try to give recommendations which lead rather more in the direction of the positive scenarios and which can provide a framework for determining actions.

Conclusion: To reach the most desirable scenarios health care services should be installed in the area where PwD live. Cooperative structures like the collaborative Dementia Care Model should be evaluated to improve the quality of health care of PwD.

P4.3. A policy initiative to improve dementia care in a remote and rural community supported by a university

June Andrews, Shirley Law

People with dementia in remote and rural areas have particular challenges. The University of Stirling undertook an innovative project in partnership with local people in the remote Shetland Islands to improve dementia support. Dementia was under-diagnosed. Just over 100 people out of a probable 300 were known to GPs. This meant that people were not accessing help. Shetland is an archipelago of 100 islands, over 200 miles north of Aberdeen. Just over twenty thousand people inhabit 16 of those islands. Nearly a quarter are over 65 and some have never been off the islands. Major health infrastructure is an issue. Patients with dementia had to be admitted to an Aberdeen hospital for specialist assessment, with relatives staying in hotels, after a 220 mile air journey, or overnight on a ferry (if there is fog, or an Icelandic volcanic cloud.) The University of Stirling worked together with Shetland Islands Council and NHS Shetland and the support of Alzheimer Scotland to make change happen. This presentation describes the project and its outcomes.

There is now better support so people fear or avoid diagnosis less; the patients registered have increased by over 30%. The raised dementia awareness among the public and professionals has had an impact on policies such as house design, and practices such as hospital care. A local branch of Alzheimer Scotland is being established and diagnosis now provides patients with a passport to appropriate person centred services. A community nurse set up a telehealth network with a consultant psychiatrist in Aberdeen, to allow diagnosis close to home. One Professor undertook a programme of influencing and supported health staff. Trips to see them involved up to 14 hours and three ferries. A three day dementia-friendly architecture and design school in Shetland with local authority and health planners and workforce, and private sector builders was held to help make all new Shetland public housing dementia friendly. Stirling teachers provided “train the trainer” courses for fourteen staff, who will each now take up to 16 others a year through the programme. The University’s dementia librarian provides access to our online library and information service and dementia book shop, including free downloadable materials. People with dementia and their families have recognized an improvement in the support they receive.

P4.4. New organisational models: increase of approachability and multiprofessional taking charge; stigma's reduction among people affected by cognitive disorders.

Flavio Paoletti

Introduction: We consider that in Trieste there are about 5000 persons affected by cognitive disorders which could be often put down to Alzheimer's disease. For those people an early diagnosis is absolutely necessary. A constant family support is essential, and it could be given through counseling services, psychological support and training courses in order to offer more tools and resources to the caregivers. As dementia causes a revealing reduction of the Activities Daily Living (ADL) and leads to pluripathology with different levels of disability, it is essentially a multidisciplinary approach in order to guarantee the best response.

Methods: For this purpose, in 2008 we decided to close the only afferent center at the Psychiatric Ward in order to create a Cognitive Disorders Diagnostic Center (CDDC) in each of four Health District of the province of Trieste. In this way we can offer a better-structured answer putting Health Districts in charge of the supervision and the administration of these patients. Health Districts will take care of them from the early diagnosis to the following taking charge by giving them home care, supporting their families, including them in different support groups, sending them to the day care centers and other activities. A multiprofessional team works in the CDDC and it is composed by a nurse, a psychologist, a neurologist, a geriatrician and psychiatrical advisory is also offered. After the registered general nurse welcomes the patient (at home or at the clinic), the psychologist makes a functional assessment through a conversation and a standard test to have an overview of the cognitive functions. Afterwards the general practitioner is involved in the process as (s)he knows deeply the patient's anamnesis and his/her life story, so that we can decide to follow a shared programme. At this point according to the medical reports and the results of the tests, the multidisciplinary team together with the patient and his/her family decides whether to go on with more specific counselings or with clinical and instrumental assessments for the following taking charge of patients.

Results: After almost three years of the CDDC establishment results are heartening. Especially in Health District number 4 during the year 2010 the number of new patients increased of 19 people than the previous year (145 vs 194), the follow-up raised of 66% (170 vs 499), patients constantly tracked by the multiprofessional team are also increasing (in 2010: 286 persons) through outpatient treatments or home care by nurses, psychologists and neurologist.

Always in 2010, 14 patients attended for free and constantly the day care centre of the fourth Health District taking part in social activities with a total of 109 attendances. Furthermore 9 patients attended also a cognitive stimulation group for a total of 72 attendances.

In all four districts of the province of Trieste some initiatives were taken like socializing groups for people affected by middle or heavy cognitive declension, training groups for carers, self-aid groups for relatives and caregivers, home counseling by psychologists, cognitive stimulation groups for people affected by mild cognitive declension and homogeneous residual capacities. All this was useful for the development against memory loss and disorientation and for keeping on having autonomy in daily life.

Conclusions: The establishment of CDDC improved accessibility to the different services for both patients and relatives since the first cognitive disorders. This allowed an early diagnosis to be made before taking charge and the follow-up. To pool the welcome service to an internal service of the district, and not to a psychiatric service anymore, reduced stigma and fear in people affected by these diseases. This element has also delineated a growth of ambulatory and home-care attendances, an increase of the participation in the district groups and a shared taking charge between the different district services. The continuous spur let services activate also other alternative forms of day care centers like itinerant centers, beyond to enforce the employment of traditional care centres. A ministerial project has now been submitted to create some supportive flat blocks where people could benefit from the presence of trained operators, who could lend support to families and avoid institutionalization due to a lack of resources or support.

P4.5. ALCOVE (ALzheimer COoperative Valuation in Europe): A European network for Alzheimer’s

Armelle Leperre-Desplanques

The ALzheimer’s COoperative Valuation in Europe (ALCOVE) project is a Joint Action co-financed by the European Commission and comprised of 30 partners from 19 EU Member States. ALCOVE aims to improve knowledge and promote the exchange of information on dementia and its consequences to preserve health, quality of life, autonomy, and dignity of people living with dementia and their carers in EU Member States.

The last 50 years in Europe have seen a dramatic increase in healthy life expectancy; however, this period has also seen a corresponding elevation in diseases linked to aging, particularly dementia. Given the high prevalence, cost, and profound impact on society of Alzheimer’s disease and other dementias in EU Member States, dementia is a public health priority at the EU level. By improving knowledge and developing preventive and care recommendations to facility policy and health care decision making in European countries, ALCOVE will contribute to the wellbeing of persons with dementia.

ALCOVE’s main objectives are the following: 1) To establish a sustainable European network for exchange of experience and knowledge at the level of healthcare institutions; 2) to inform and advise policymakers, healthcare professionals, caregivers, and citizens through convergent recommendations; 3) to reduce the current risks associated with psychotropic drug use, particularly that of antipsychotics, for this population.

Specifically, ALCOVE hopes to improve data on dementia prevalence; access to early-as-possible dementia diagnosis; care for those living with dementia, especially those with behavioral disorders; and the rights of people with dementia, particularly with respect to advance declarations of will. Accordingly, ALCOVE has a workpackage devoted to each of these key questions.

In conducting this work, ALCOVE draws on previous European studies (EuroCode, Memento, Ictus, Descripa, etc) and existing networks, including the Joint Programming on Neurodegenerative Diseases (JNPD), European Alzheimer Disease Consortium (EADC), European Dementia Consensus Network (Edcon), Early detection and timely Intervention in DEMentia (Interdem), and of course Alzheimer Europe.

The 7 workpackage leaders - France (coordination), Spain (dissemination), Slovakia (evaluation), Italy (epidemiology), United Kingdom (early diagnosis), Finland (care and services) and Belgium (rights and dignity) constitutes the ALCOVE Executive Board which leads with the 30 partners this ALCOVE 2 year Joint Action.

 

 
 

Last Updated: Wednesday 26 October 2011

 

 
  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene
 
 

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