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P14. Dementia strategies

Detailed Programme, abstracts and presentations

P14.1. National and sub-national Alzheimer Plans: are they moving the needle on the issues?

Michael Splaine, Marc Wortmann

Based on a standardised content review of several national and sub national Alzheimer/dementia plans, the authors plan to review common policy elements in the several plans as well as highlight unique or unusual plan objectives or processes.

Discussion will then focus on the state of implementation of said plans, with a view toward answering the question: Are plans making a difference in the lives of persons with dementia and their families?

P14.2. A model of integrated care for dementia: the “Emilia-Romagna Dementia Project”

Andrea Fabbo, Antonella Carafelli , Raffaele Fabrizio , Raffaele Tomba

The “Dementia Project” of Emilia –Romagna Region, one of the oldest regions in Europe (Regional Committee Act n°2581 30/12/ 1999), imposes an integrated approach to support people affected by dementia and their families (dedicated funds: about EUR 6,5 milion from year 2000 to year 2009). The main strategies of this model are: a) projects for patients and their caregivers; b) global approach (social and health services integrated); c) qualify existing network service (not only separate net for people with dementia); c) improve and support caregivers and family associations.

The most important tools of the Project include some “key words” such as training and education (courses for professional nursing staff), good staff (ability, number and different skills), environment, therapeutic agreement with families, global care plan - follow-up- continuing of care and the main goals require to : a) assure a good diagnosis in a reasonable time (better and early diagnosis trough 53 “Expert Centers” in each District Local Health Unit, involvement general practioners in the process with simple checklists , regional guidelines for diagnosis, assessment and care); b) improve life quality of patients and their caregiver ( information on existing resources, common responsibilities local and health authorities, improve respite care in all kinds of services as day centers and nursing home, day –time care, training and education for caregivers, counselling for law, ethics, nursing and care, psychological problems, how to arrange home environment); c) improve staying at home as long as possible; d) qualify services in taking care of people with dementia (each service had to set up a plan to improve quality for caring of people with dementia, following regional guidelines, special programs for short training for all different types of personnel working in services for elderly people, request to modify basic course for general practioners, nurses, new skill planners as occupational therapists, experts in cognitive rehabilitation, improve adaptation environment); e) change services approach to the families: not only complete package of services, also listening and counselling; f) modify hospital approach when patients with dementia need hospitalisation.

The activity of 53 Dementia Centres to assure a correct and early diagnosis include, from 2001 to 2008, a total of 348,000 medical examinations (109,100 new contact), 238,900 follow-up, high contact capacity (about 13,600 new contacts per year ), 58.400 new dementia cases (about 8,300/year), 18,700 cases of MCI, 57,000 people received specific pharmacology therapy (23,100 anticholinesterasic therapy and 33,900 other pharmacological strategies), 25,500 caregivers involved (trough informative and training courses, support groups, self-help groups), 70,500 specialistic advice (psychological, nursing and care, legal, how to adapt home), regional documents as handbook for design criteria to design and adapt the environment (domestic and nursing home), guidelines for diagnosis and assessment, protocol of care ( how to approach main therapeutic and nursing problems) , guidelines for providers of services (how to improve quality of life and of care), little brochure for foreign family assistants (7 different topics- relationship, hygiene, eating, movement, dementia, services, rights, 9 different languages) and, finally, a web site dedicated to dementia (addresses: where to ask, where to go, cousulting on line, download area).

P14.3. Towards a national dementia plan in Malta: is the nursing profession prepared?

Charles Scerri

One of the major challenges facing the Maltese health care system is the ever increasing number of indivuals with dementia. This was highlighted by a recent study indicating that two percent of the local population will have dementia by the year 2050. This will bring significant demands not only on health and social services but also on healthcare professionals who are not adequately trained in dementia-centered care. In order to increase awareness on the current workings of the Malta Dementia Strategy Group, the University of Malta and the Malta Dementia Society in collaboration with the Practice Development Unit and the Nursing Administration of the main acute local hospital organised a half-day seminar for public and private nursing professionals on dementia care, management and policy. A questionnaire focusing on various aspects of dementia was distributed and collected prior to commencement of the seminar. The results (n=196) showed that nursing professionals consider individuals with dementia to be marginalised and that services intended for such patients and their carers are significantly lacking. Furthermore, this sector of the healthcare profession consider that there is not enough knowledge on this particular illness and that working with such patients is considerably challenging. Surprisingly, a significant number of nurses agree that individuals with dementia behave like children, even though the majority indicated that the same individuals need to be respected as full members of the society. Considering that the nursing profession comes into direct contact with such patients, these results show lack of knowledge and training in dementia care and such deficiencies need to be addressed in the national dementia plan currently being worked out by the Maltese health authorities.

P14.4. American effort to create national plan on dementia and intellectual disability

Matthew P. Janicki, Seth Keller

A national task group was formed in the United States to help develop a national strategy on addressing the growing challenges that dementia poses for people with intellectual disabilities and their families and providers to coincide with the recently enacted National Alzheimer's Project Act (NAPA), which directs the federal government to develop a coherent and coordinated national strategy on dealing with Alzheimer's disease in the United States. The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) was created by the American Association on Intellectual and Developmental Disabilities (AAIDD), the American Academy of Developmental Medicine and Dentistry (AADMD), along with the Rehabilitation Research and Training Center on Aging and Developmental Disabilities-Lifespan Health and Function at the University of Illinois at Chicago with the intent to have the National Task Group complement the federal initiative and to address the myriad requests for more specific information and practice models for providing quality care for people with intellectual disabilities affected by dementia. The goals of the NTG were to suggest a workable screening instrument to help substantiate suspicions of dementia-related decline; produce a new set of practice guidelines for post-determination health care and supports, and examine and recommend models of community-based support and long term care of persons with ID affected by dementia. A report was produced which summarizes its work and addresses the three areas noted above.

P14.5. Making government take dementia seriously

Nicola O’Brien

A manifesto commitment on dementia was given by all three main political parties in the UK before the 2010 general election. Alzheimer’s Society has increased this awareness of dementia among politicians and driven it up the government agenda through its influential work with the All-Party Parliamentary Group (APPG) on Dementia.

In this presentation Nicola will share what the Society has achieved through working with this cross-party group of parliamentarians and how it has effectively driven action from both the government and public bodies. Delegates will also understand the benefit of identifying and working with champions in parliament, how a parliamentary group can help establish lasting relationships with opinion formers, and how it can influence the parliamentary agenda.

The APPG on Dementia is run in partnership with Alzheimer’s Society. Since the APPG was set up in 2007 we have together conducted an annual inquiry into issues of major significance to quality of life for people with dementia and their carers.

The past three inquires have explored the progress of the NHS in delivering the National Dementia Strategy for England (2010), the readiness of the social care workforce to care for people with dementia (2009), and the over-prescription of antipsychotic drugs to people with dementia in care homes (2008).

Each of these inquiries has shone a spotlight on an area of government policy and gathered broad evidence to support its review or change, attracting significant public attention in the process.

Nicola would like to share some of these developments with European colleagues in a way that may be relevant to their own organisations and prompt discussion about examples of parliamentary work elsewhere.

Nicola will also be able to share about the current inquiry of the APPG, which will publish in July 2011, exploring how to make the best use of resources within dementia care whilst at the same time improving quality of life for people with dementia and their carers. This topic is particularly relevant in the UK and across Europe at the current time due to the difficult financial climate and the pressure on public services.

The presentation will highlight the crucial role of strong evidence in building the case for action on dementia, and how this evidence can then be communicated and used to gain political and public support for positive change. It will explore the advantage of developing such evidence jointly with a group outside Alzheimer’s Society, how we have involved people with dementia and carers in this work, and also about practical and day to day running of the APPG on Dementia.



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