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P4. National dementia strategies

Detailed Programme, abstracts and presentations

P4. National dementia strategies (Friday, 5 October, 14.00-15.30, Europa 4)

P4.1. National planning for dementia-related community care for adults with intellectual disabilities

Matthew P. Janicki, Seth M. Keller

A challenge in many countries is planning services for adults with intellectual disabilities (ID) who are affected by dementia. Although the rising incidence of dementia among adults with I/DD is mirroring that of the general population, it has the added dimension of loss of function among adults already disadvantaged. The challenge for governments and NGOs is how to transform existing supports and services provided to work-age adults with lifelong ID to those more appropriate to older-age adults with ID and affected by cognitive decline and functional impairment. This paper examines the continuing effort in the United States to create and implement a national action plan for services related to the growing rate of dementia-related secondary impairment among adults with ID.  In late 2010, the National Task Group on Intel-lectual Disabilities and Dementia Practices (the ‘NTG’) was established to address the need to plan for services for adults with ID, corresponding with American efforts under the federal National Alzheimer’s Project Act (the ‘NAPA’).  The NTG, a collaborative endeavor of several national professional and family-based organizations and aging/disability university centers, was charged to examine the impact of dementia on adults with I/DD and their carers, identify a means of effectively undertaking an early identification effort and defining best fit community care, and develop a series of dementia-related practice guidelines for health and social care practitioners.  Since 2010, the NTG was successful in contributing to the national conversation on community-care dementia practices, producing a report and national action plan (“'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports”-, and increasing public education and professional training, formal practice guidelines for innovative care practices.  The process used was to (1) obtain aegis for the formation of a national working group, (2) draw volunteer membership from across the country and from various constituencies, (3) infuse interest in providingpro-bonowork and contributions in support of the working group’s efforts (including the creating of a national plan), and (4) draw in the key governmental and national organizational officials to support its efforts and implement its recommendations. Since its inception, the NTG was able to effect change by highlighting community care models designed to divert institutional admissions, enhancing the awareness to early signs of dementia among carers and practitioners, and addressing health disparities within provider services.  The work of the NTG now continues and has spread to providing training workshops across the country, developing and issuing practice guidelines applicable to adults with ID, and producing public education materials to help families and formal carers.  Over two years, the NTG was effective in mobilizing a varied constituency to focus on a significant national disability management issue and to bridge the extensive networks found within various constituent organizations, from the Alzheimer’s care to the disability supports communities.  Also, the NTG was able to establish a successful interface with the federal NAPA process with respect to disability management on a broader scale with respect to generically addressing dementia in the United States. 

P4.2. Integrated Dementia Care in Austria

Karin Eger, Sabine Höfler, Matthias Schauppenlehner

Introduction and Problem Statement: The Austrian social insurance fund is establishing integrated care strategies on a national level. In order to accomplish this, a systematic and scientific process was used to identify diseases which show high potential for improvement through integrated care. Grounded on the findings of this prioritization process and due to the demographic changes a nationwide integrated care strategy for dementia was developed. Current dementia-care in Austria is characterized by fragmentation, numerous interfaces in care provision and a lack of coordination. This leaves patients and relatives to deal with complex care situations and shows strong potential for a system improvement.

Method: The results of an analysis of the current situation of dementia care as well as a comprehensive literature research and a set of identified problem areas formed the foundation for the development of the nationwide integrated dementia care strategy. Subsequently five multidisciplinary dementia-expert-groups worked on the development of the components for the care model. The results represent an expert-consensus on how to optimize dementia care in Austria.

Results and Discussion: The program is based on a network structure which links program-components and services providers. It is designed to incorporate existing services and local initiatives as well as regional differences and therefore is adaptable for use in all regions in Austria. On the macro level a network and care management as well as a data management provide the structure for the implementation of integrated care. Within this structure patients receive medical guidance and care through their medical consultant of choice and guidance and coordination in the area of social or nursing care through a case manager or counselor. The level of guidance or coordination offered is dependent on the needs of patients and relatives and is aimed to improve and maintain domestic care of dementia patients. Further program-components comprise a medical guideline to ensure evidence based care, educational measures and empowerment as well as guidelines for quality management within the network.

While comparable initiatives in other countries have shown notable improvements, the practical effects within the Austrian health and social care system will be specified after piloting and evaluating the program.

P4.3. WHO makes Dementia a Public Health Priority

Marc Wortmann, K. Jacob Roy

The World Health Organisation (WHO) and Alzheimer’s Disease International (ADI) have launched a report Dementia: A Public Health Priority on April 2012. The report has been made with a group of more than 30 experts from around the world and touches on aetiology, prevalence and incidence data, risk factors, dementia policies, health and social systems, care and caregivers, awareness raising and ethical issues. It concludes with a number of recommendations: with a new case of dementia every four seconds somewhere in the world, governments need to prepare and create national Alzheimer and dementia plans, stimulate dementia friendly communities, improve public and professional attitudes, improve health and social care systems, support caregivers and raise awareness about the disease and increase the priority given to dementia in the public research agenda.

ADI believes that when the World Health Organization declares dementia a public health priority many countries, especially lower and middle-income countries, will be mobilised to take more action than they used to do. In the presentation, we will look into the first response to the report, including recent developments in India and possibly other countries as well.

P4.4. Lobbying campaign of France Alzheimer during the French presidential election

Marie-Odile DESANA

Background: Since 1985, France Alzheimer supports people suffering of Alzheimer and related diseases, their families and their caregivers. The association informs public authorities about the issue of dementia in the society. Thanks to his work, the perception of Alzheimer’s disease has considerably improved. Public awareness is much higher and this is helping the disease to shed its taboo image.

France Alzheimer is also a major player in the development, implementation, follow-up and evaluation of the French Alzheimer Plan 2008-2012.

Why?: In France, Alzheimer and related diseases affect 850 000 people and over 3 millions of people are concerned (families, caregivers). This disease is in the heart of social problems: economic crisis, retirement, women's place in society, caregivers…

France Alzheimer has taken the opportunity of the presidential election to speak out and be heard by candidates running for France's presidency. Main goal: obtain written commitments of the future President of the Republic and launch a lobbying campaign after his election.

How?: France Alzheimer asked to presidential candidates to reply to ten questions which cover the following points:

  • Support for the launch of the fourth national Alzheimer plan
  • Development of institutions specialising in dementia
  • Legal recognition for caregivers
  • Reimbursement for caregiver training programmes and for non-pharmacological intervention
  • Support for the launch of a reform of dependence

All of them responded, proof of a real awareness of stakes involved in Alzheimer and related diseases. Nevertheless, the association regretted a lack of precision about reforms proposals and implementation of concrete actions.

Then, France Alzheimer has launched a website showing the positions of presidential candidates on the challenges faced by people with dementia and their families. Furthermore, the association has also launched a media campaign in the national press to communicate on this lobbying campaign.

To reinforce his action and to impose his positions, France Alzheimer also asks to candidates running for legislative elections, which will take place in June, to reply to the same questionnaire. The association is mobilising its hundreds of local associations to do it.

P4.5. Scotland’s National Dementia Strategy – Charting Progress 2 Years on

Henry Simmons, Hugh Masters, Susanne Forrest, Penny Curtis

Scotland’s National Dementia Strategy was launched in June 2010 and outlined a number of key challenges and change actions that require a significant transformation in the way Health and Social services in Scotland respond to Dementia.   The main change areas outlined in the Dementia Strategy include: addressing negative attitudes towards dementia and stigma; better support after diagnosis; improving the general service response to dementia; assessment, diagnosis and care pathways; support for interventions, including non pharmacological responses to managing memory problems, co-morbid mental health problems, and behaviour perceived as challenging; and better support for families and carers. The strategy is underpinned by a human rights-based approach, where people are treated with the dignity and respect they’re entitled to.

Actions set out in the strategy included the development the human rights based  ‘Standards of Care for Dementia in Scotland’ and  the knowledge and skills framework ‘Promoting Excellence - a framework for health and social services staff working with people with dementia, their families and carers’ Both documents were launched in June 2011. Additionally, the Scottish Government has guaranteed that, from 2013, everyone receiving a diagnosis of dementia in Scotland will  have access to a guaranteed minimum of a year of support, from a named and trained individual, based on the Alzheimer Scotland Five-Pillar model. This is a world-leading commitment and a significant milestone in dementia care - and we expect it to be life changing for the 7,000 people in Scotland diagnosed with dementia each year, and for their families

This session will describe the significant progress made in Scotland in implementation of our dementia strategy. Discussion will include how we are driving forward an ambitious workforce development plan involving the entire health and social care workforce in Scotland.  We will discuss issues such as the particular progress made in driving improvements in the care and treatment of people in the acute general hospital sector; increasing access to psychological therapies and interventions for people with dementia and their families and carers; and improvements in diagnosis and post diagnostic support.

Delivering Scotland’s Dementia Strategy ambitions are requiring a major shift in both practice and culture and we will demonstrate how delivery is being supported through close partnership working between Alzheimer Scotland, the Scottish Government and Scotland’s health and social care sector.

P4.6. What is a Dementia Adviser and what do they do? - An exploration of the work of dementia advisers and their experiences in delivering their role.

Jenny La Fontaine, Professor Dawn Brooker, Jennifer Bray

A key objective of the National Dementia Strategy for England is the development of specific early intervention and diagnostic services for people affected by dementia and their families. A component of this service is the provision of a dementia adviser role to facilitate access to appropriate care, support and advice. This new role was identified in direct response to concerns expressed by families for someone they can approach for ongoing support and advice throughout the journey of dementia. Initial development involved piloting and evaluation of models of service provision, prior to full implementation. Worcestershire was successful in achieving demonstrator site funding, and two dementia advisers were recruited by the Alzheimer’s Society. The dementia advisers work closely with the early intervention dementia service and other services within Worcestershire. Objectives for the service include establishing a single identifiable information contact and providing relevant quality information tailored to individual need to people with dementia and their families. The partnership between Worcestershire County Council, PCT and the Alzheimer’s Society commissioned a local evaluation of the service. This evaluation aimed to address a number of objectives, including developing an in-depth understanding of the experience of being a Dementia Adviser.

Monthly qualitative, semi structured interviews were carried out with dementia advisers over the duration of the project. Inductive analysis of these interviews took place using Interpretive Phenomenological Analysis. Additionally, quantitative data concerning the work of the dementia advisers was collected throughout the project.

This presentation will explore the results of the evaluation, initially presenting data illustrating the work of the dementia advisers. The experience of delivering the role will then be explored, considering the range of knowledge, skills and attributes required of a dementia adviser, as well as the complex nature of their work.

The presentation will also highlight future considerations that need to be addressed, including the facilitators and barriers to working effectively in the role, their role in case management and the strategies that enable the delivery of Dementia Adviser Services.



Last Updated: Thursday 15 November 2012