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Parallel Session - Outreach programmes

Abstracts and presentations

ARDEM: towards multidisciplinary, integrated care to patients with dementia in a south-Belgium rural area

Christian Gilles, Centre Hospitalier Sainte-Ode, Belgium,
Co-authors: Pascale Adam, André Bouchat, Christian Constant, Renée Fidler-Courtois, Anne Slachmuylders, Claudine Grandjean, Véronique Monfort, Sabine Henry, Bernard Hilbert, Ivonne Hubert, Murielle Losier, Emmanuel Jassogne, Martine Lambert, François Lepée, Michel Marion, Alexandre Mignon, Anne Noël, Jean-François Thomas

Haivng dementia can be worse in the countryside. Inhabitants, mostly the elderly ones, are generally less informed about the meaning of cognitive impairment and can keep on considering it as a normal aspect of ageing. The medical density is less and the access to skilled memory clinics more difficult. Because of population dispersal, setting up follow-up, care and caregivers respite programmes is a challenge.

In the wake of its 2007 national symposium, held in Libramont, the Belgian Ligue Alzheimer promoted the setting up of a working group in the province of Luxemburg. This group was named “ARDEM”, a contraction of “Ardenne” (the region) and “Dementia”. It was an opportunity for a range of involved workers (MDs, social workers, nursing home managers, visiting nurses, home services providers, politicians, teaching nurses…) to meet, share their experiences and start collaboration, without any restriction: with such a number of patients and caregivers to rescue, there is no longer any place for rivalry. After having made an inventory of unmet needs in the area, we decided to first provide information to lay people and professionals who should be involved in dementia care. This action took the classical form of lectures, which might not be the best way of reaching the main target, i.e. those who usually have a restricted access to information. However, our hope is that this information will eventually reach them through informal and professional contacts with participants. The second aspect of our action is to teach all the professionals who come into contact with the elderly. The first approach was very classical as well, taking the form of “one-shot” teaching courses. We now appreciate that improving daily practice requires more in-depth training and it was recently decided to set up a one-year programme dedicated to the snoezelen approach of people with dementia in nursing homes. Our ultimate goal is to offer the population in this restricted area a multidisciplinary standardized, integrated, high-quality dementia programme, from early detection to long-stay care.

Dementia care in the highlands of Scotland

Martin Sewell, Scottish Dementia Working Group, United Kingdom,

The Scottish Highlands are one of the most remote and sparsely populated regions in Europe. Providing effective services to people with dementia presents some unique challenges. A dual perspective, from service user and provider, will consider innovative and imaginative solutions. Scottish Dementia Working Group members will talk about the experience and difficulties of receiving services in a rural area. People want:

  • simple, quick access to services at the time they’re needed
  • a single point of access to services or one service that will respond to all their needs
  • effective joint working and communication between services
  • consistent relationships with staff offering long-term support
  • information about the services available and how to access them
  • flexibility of approach, as what works for one person may not work for another
  • support with practicalities of every day life
  • peer support
  • involvement in decision making.

Major difficulties include: lack of public transport and lack of service choice. For the service provider challenges include:

  • extremely sparsely populated areas including 30 inhabited islands
  • recruiting and retaining staff in remote and rural areas
  • maintaining skills in isolated staff with small client lists
  • finding housing for staff in remote and rural area
  • additional expense in provision of serviceS

Sustaining services is difficult. Staff may be trained but there are not always clients in their area or there are great distances between people needing support. Key themes to providing effective services in rural areas are:

  • Single point of entry: resolves the need for a client to access several services for help and support for different problems
  • Outreach work: actively takes a service to the client, as opposed to the client coming to the service. This is particularly relevant in helping the most ‘hard to reach’ clients access services
  • Non premises-based services: e.g. Nordic walking
  • Joint working: multi- disciplinary working across and within the health, social care and voluntary sectors.

Creative solutions will be explored; e.g. using bed and breakfast establishments for moveable day care.

Weten over vergeten: Dementia education for Turkish, Moroccan and Surinamese people

Nienke van Wezel, Alzheimer Nederland, Netherlands,

The number of elderly migrants with dementia has been heavily increasing over the years. Nevertheless, in non-western cultures the concept dementia is mainly unknown and undiscussed. On top of that, migrant people are often unfamiliar with Dutch care facilities. This causes a lack of knowledge to make the right choices at the right times during the disease. Early recognition of dementia is essential for good coping and to provide better and longer informal care. To stimulate the use of Dutch care facilities by elderly migrants, it is crucial to understand how personal care experiences and the perception of dementia by non-western informal caregivers, are influenced by culture.

In 2007/2008, Alzheimer Nederland developed ‘Weten over vergeten’, an educational project which includes a specially created method. With this project, regional departments of Alzheimer Nederland and migrant organisations organise information meetings for migrant people. The goal of this project is to enhance and strengthen the connection between regional care networks and elderly migrants. In addition, this project aims to increase knowledge about dementia and available support facilities among this target group. For this purpose, regional departments and migrant organisations go through an intensive introduction and exchange programme. The collaboration is realised at management and executive level. The structure models thus founded serve as a starting point for other regional care innovation projects. In the long run, this will contribute towards the enlargement and improvement of multicultural dementia care. The project operates in eighteen regions, of which three regions are already finished. First results show that the goals of the project are successfully accomplished by use of this method. In 2009, 36 meetings are planned reaching 650 migrant participants. A unique part of this project is the use of personal experiences of the target group. Next to information about dementia, the personal experiences help to illustrate culturally influenced problems and to find proper solutions.

In 2009/2010, the project will be implemented in other Dutch regions. In 2009, Alzheimer Nederland will start a promotional research in order to gain insight into the perception and care burden experienced by Turkish and Moroccan informal dementia caregivers.

Information provision for people with dementia and their carers: lessons of some Scottish research

Alison Bowes, Dementia Services Development Centre, University of Stirling, United Kingdom,
Co-authors: Sherry Bien Macintosh, June Andrews

Introduction: This paper reports the results of an audit of information provision for people with dementia and their carers, conducted in Scotland, and considers some of the wider lessons of this work. The aim of the audit was to map current practice as a baseline for up-coming service developments.

Methods: Informed by a series of focus groups identifying issues for service users, the audit involved a countrywide survey of health and social care professionals and a series of in-depth interviews with 35 volunteer professionals who had participated in the survey. The survey explored current practice in terms of what information was given; by whom; to whom (person with dementia, carer or both); in what formats; and at what times. The interviews were focused on professionals’ views about barriers and facilitators to good information giving.

Results: Current practice was remarkably consistent, with an emphasis on oral information giving, backed up with printed materials. Information was given to both people with dementia and to family caregivers, though as the condition progressed, there was a greater emphasis on the family caregivers. However, professionals identified several important barriers to effective information giving including difficulties in identifying responsibilities of different professional groups; lack of local information; an ‘information deluge’ which could be difficult to navigate; information that was out of date. Facilitators to good information giving included the skills of professionals; the role of the national voluntary sector; information that could be tailored to people’s needs.

Conclusions: The lessons of this audit include the need for good inter-professional communication; training for more generalist professionals in dementia issues; improved information for early stage dementia to forestall later crises; a holistic approach to information provision that considers people’s needs more fully; wider general knowledge about dementia to dispel fear and stigma attached to the condition.

Homelessness and Dementia: Addressing complex service needs and trajectories

Thilo Kroll, University of Dundee, United Kingdom,
Co-author: Ursula Naue

The number of younger people diagnosed with dementia is on the rise in many European countries and the United States. In some countries (e.g. Scotland), alcohol-related forms of dementia are a particular concern as they affect a growing number of younger individuals. While there is no one-to-one relation between alcohol consumption, economic deprivation and homelessness, alcohol abuse has consistently been described as a significant problem in the otherwise heterogeneous homeless population of many countries. The aim of this presentation is two-fold: (1) to identify key issues in diagnosing and managing dementia in homeless adults, and (2) to review the current evidence base for how the health care needs of homeless adults with dementia are being met. Findings from two methods will be used to characterise the health care context and the care needs of homeless adults with dementia and the interventions used by health and social care professionals to address them. Firstly, a rapid evidence review of the literature, involving MEDLINE, CINAHL, PUBMED, PSYCINFO (1998- 2008) will be used to examine the scientific literature. Secondly, a Nex is UK media search for stories at the intersection of dementia and homelessness in major UK newspapers since 2000. The rapid evidence review showed that the primary focus on intervention studies at the intersection of homelessness and dementia addressed dementia as a secondary concern. UK media reports focused primarily on loss of services or benefit coverage, caregiver strains, economic burden, and dignity in the care of homeless older adults with dementia. In conclusion, dementia care for homeless adults is a highly underresearched area. The evidence base is lacking for culturally sensitive care environments. Interventions are critically lacking that consider the compound needs of this heterogeneous clinical population.



Last Updated: Wednesday 21 October 2009