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PO1. Policies and strategies

Detailed programme, abstracts and presentations

PO1.1. Risk perception and LTC Insurance demand: Enough informed for this stuff?

ZERRAR Nina

Fondation Médéric Alzheimer, Paris, France

As a solution to the Ageing financing challenge facing most developed countries nowadays, relying on private funding - through the long-term care (LTC) insurance market for example - has become the preferred option in the absence of any public reliable alternative. The LTCI market's capacity to insure LTC expenditures is thus examined, given its low coverage rates. LTC risk misperception is often argued as an explanation for low coverage. Mispercieving either the risk, or the cost this represents, makes LTCI coverage relatively less attractive and may drive individuals to avoid LTC insurance. Analysing a randomised experiment, this paper aims to shed light on the role of information in raising awareness on LTC risk to stimulate insurance uptake. 

The experiment makes use of two versions of a survey questionnaire - one with information on LCT costs and prevalence, another without - randomly sent to Elders wave 2's respondents. 

Our results suggest that information does have an impact on LTC risk perceptions (risk, expenditures) but not on the willingness to take up LTCI for individuals who are not covered yet. More precisely, results show that individuals overestimate both LTC costs and prevalence since the non informed group declares they more likely to need care at age 80 and less capable to finance their LTC expenditures. The information campaign simulated in this experiment was also able to reduce uncertainty which can leads to myopia or denial. In fact, proportion of individuals not able to answer our questions of interest strongly decrease with the information delivered. This simulated infomation campaign is then confronted to "natural" sources of information: having a relative needing or being a caregiver. Providing information has a stronger impact on indvididuals already aware through their experience. These fi ndings are robust to controlling for individuals' health indicators.

PO1.2. Brain health Champions promoting the prevention of memory-related disease

POHJANVUORI Anita

The Alzheimer Society of Finland, Helsinki, Finland

Background and need: The pillars of the National Memory Programme of Finland (2015–2020) and the related implementation plan include actions aimed at the promotion of brain health. The goal is to have brain health taken into consideration in all sectors of the society and to increase people’s awareness of brain health. The promotion of brain health is based on the prevention of memory-related disease. According to the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (Finger), brain-friendly choices can postpone memory-related diseases, but people need information and guidance to support the making of such choices.

The Alzheimer Society of Finland promotes brain health on the basis of up-to-date information. The Alzheimer Society of Finland’s task is also to support the brain health and the prevention of memory-related disease of people already suffering from such disease, as well as their relatives.

With the growing need for information, a lot of actors are needed. Organisations hold events and arrange group activities, in which volunteers can help. With appropriate training, instructions and tools, volunteers can provide information and tips related to brain health. Such operations are considered a new form of volunteer activities for the promotion of brain health.

Method of operation: A brain health Champion is a volunteer interested in the promotion of brain health. During a one-day training, an expert explains factors contributing to brain health and affecting the risk of memory-related disease during a model lecture.  A brain health Champion works through a local memory association.

Extent of operations: The Alzheimer Society of Finland has been offering training for brain health Champions as part of the National Memory Programme since 2015. In 2018, we have trained our memory coach specialists to continue the training of volunteers in compliance with the Alzheimer Society of Finland’s model.

PO1.3. Informal caregivers’ perspectives of services for community-dwelling individuals with dementia

SCERRI Charles, SPITERI Charmaine

University of Malta, Msida, Malta

Following the recent launch of the national strategy for dementia in the Maltese Islands, a number of services were added to already pre-existent ones aimed at increasing the support to informal caregivers of individuals with dementia living in the community. Although some of these services have proved to be popular, research on their utilisation and level of satisfaction is lacking. In order to determine the level of service use, data of 38 informal caregivers of community-dwelling individuals with dementia was collected using a specifically designed research instrument. Six caregivers also agreed to participate to a face-to-face interview and share their experiences on dementia service provision. Caregivers had a mean age of 60.3±11.5 years, in the majority were daughters to the individual with dementia and had been in their caregiving role for more than five years. Results showed that among the dementia-specific services available to individuals with dementia, caregivers were mostly knowledgeable about the Dementia Day Care centres and the Dementia Helpline. Although the Memory Clinics have been in use for more a decade, almost half of the participating caregivers had no knowledge of such service. Moreover, caregivers’ knowledge on recently-launched services, including the Dementia Intervention Team, was also found to be lacking. In general, caregivers indicated a high degree of satisfaction with most of the services they utilise but unmet needs still exist. The findings demonstrate that although a number of services aimed at individuals with dementia and their caregivers are available, there is still lack of awareness of their existence. It is therefore essential for policy makers and other stakeholders working in the field to be aware of the lack of knowledge that is currently present on a number of dementia services in order to address this shortcoming.

PO1.4. How many people with dementia with migration background are there in Germany?

THYRIAN Jochen René, MONSEES Jessica, HOFFMANN Wolfgang

German Center for Neurodegenerative Diseases (DZNE), Greifswald, Germany,

Background in Germany, the number of people with migration background was 16,5 million people in 2013. In this population utilization of health services is low, especially in the elderly. Little is known about the number of people with dementia and migration background in Germany and their distribution on the state level.

Method We estimated the number of people with a migration background and dementia living in Germany and its federal states by calculating country specific prevalence for different ethnical groups using country- and state-specific data on population, dementia frequency and age-specific prevalence.

Results 1,86 million people with a migration background are 65 years or older with approximately 96.500 persons (5,2%) having dementia. The majority is of European (84.490), more specifically Polish (13.960), Italian (8.920) or Turkish (8.840) heritage. North Rhine-Westphalia (26.000), Baden-Wuerttemberg (18.080) and Bavaria (16.710) presumably show the highest rates of people affected.

Conclusion In Germany, people with migration background and dementia represent a large target group for health care. However, the numbers and ethnicities affected differ considerably between states. Our analyses can be used for state-specific health care planning of culture-specific and culture sensitive services and care. Thus, specific health care improvements can be achieved. The presentation will sketch major lines of health care improvemnt for people with migration background in Germany.

PO1.5. Proyecto de sensibilización: "plantando semillas"

SÁNCHEZ ALGAR Patricia, BESORA CABRÉ Teresa

Asociación de Alzheimer de Reus y Baix Camp, Reus, Spain

La Asociación de Alzheimer de Reus i Baix Camp ha ampliado su tarea de sensibilización social al colectivo de la infancia y la adolescencia. Este es un paso mas hacia la normalización y el conocimiento de esta enfermedad que afecta a multitud de familias.

Participamos activamente en el proyecto educativo de la ciudad de Reus, teniendo muy buena acogida en la comunidad educativa a traves de la oferta ARE 2016 - 2017 i 2017 – 2018: la recopilación de actividades y recursos promovidos por las áreas y servicios municipales dirigidos a los colegios e institutos.   

Las charlas son dinámicas y participativas, adaptadas a la edad del grupo clase. Queremos plantar semillas de empatia, amor y generosidad respecto a esta realidad a futuros miembros activos de la sociedad, en la que todos con nuestras acciones podemos hacerla más solidaria, promoviendo la buena calidad de vida de las personas.

Nuestros objetivos son:

Dar a conocer aspectos principales de la enfermedad.

Empatizar con las dificultades de una persona con Alzheimer y su cuidador principal.

Resolver dudas, miedos y prejuicios.

Fomentar las relaciones de ayuda y las relaciones intergeneracionales.

Dar valor a los abuelos/as, como miembros activos del ámbito familiar y social.

Dar a conocer tratamientos específicos que proporcionan calidad de vida a las personas con Alzheimer y a sus familiares.

Hemos atendido a 545 alumnos/as. Constatando que a menudo se comete el error sobreprotegerlos para evitar que padezcan. Pero ocultando u omitiendo una realidad se està promoviendo el miedo, las dudas y los prejuicios de los mas pequeños. Por ello consideramos tan importante explicar esta enfermedad de manera que la puedan entender. Solo así podremos transmitir y consolidar los valores del amor, la amabilidad y la generosidad hacia los que más lo necesitan.  

PO1.6. Information for families affected by dementia and multi-morbidities

HARRISON DENING Karen, O'DOUGLAS Ceiri

Dementia UK, London, United Kingdom

As life expectancy increases so people often develop a range of conditions and disabilities in the years before death. Dementia is largely a disease of old age so many will also have other multi-morbidity; such as, other long term conditions, illnesses or disabilities.  Multi-morbidity is where two or more medical conditions or disease processes that are additional to an initial diagnosis co-exist and where one is not necessarily more central than the others (Boyd & Fortin, 2010). Multi-morbidity represents the most common ‘disease pattern’ found among the elderly and is characterised by complex interactions of co-existing diseases where a medical approach focused on a single disease does not suffice. People with dementia show high levels of multi-morbidity experiencing common conditions such as, cancer, cardiovascular disease, diabetes, and musculoskeletal disorders such as fractures (Sampson and Harrison Dening 2013).   Not surprisingly, people with long term conditions and frail older people (including those with dementia) are the greatest users of health and social care. The NHS in the UK (NHS, 2014) highlighted that long term conditions take 70% of the healthcare budget and chronic care models have moved to focusing on more proactive, integrated services supporting better informed and empowered patients. However, information that encompasses such long term and life threatening co-morbid conditions in the context of also having a diagnosis of dementia has been limited in its availability.

This poster/paper will present the work of Dementia UK and the information needs as those with highest requested themes through topics and issues raised by callers of the Admiral Nurse Dementia Helpline.  This programme of work also involves information developed with several key partners of other disease/illness based charities and groups that support people diagnosed with other conditions, such as cancer and heart disease, and makes the information bespoke to those with multiple morbidities.

PO1.7. Psychoeducational seminars on Dementia, by the Karelleion Integrated Alzheimer and related disorders Unit

ZACHARIADIS Andreas, CHRYSIKAKOU Iliana, EFTHYMIOPOULOU Catherine

“Apostoli” charitable organization, Holy Archdiocese of Athens, Athens, Greece

Among the educational activities, organized by the Karelleion Integrated Alzheimer and related disorders Unit, of the “Apostoli” charitable organization, of the Holy Archdiocese of Athens, a psychoeducational program of seminars on dementia and Alzheimer’s disorder takes place, within the context of the community, three times per year.

The above mentioned activity is carried out by members of our Unit’s scientific team, who investigate and present to relatives, carers of patients, students and other healthcare professionals, theoretical issues about dementia as well as practical advice on what to do and how to take care of a person with dementia. Each psychoeducational seminar is comprised of scientific presentations but on layman’s terms as well, on a weekly basis, by our psychiatrist, psychologist, occupational therapist, physiotherapist, nurse and social worker. In more detail the presentations are on “The nature of dementia and what we can do about it”, “The function of memory and dementia: prevention, non pharmaceutical approaches, management of emotions”, “Mobility impairment and dementia: a physiotherapeutical approach”, “Everyday activities of people with dementia”, “Providing nursing care for people with dementia” and “Problems of the third age, care and social security programs”

The main purposes of these psychoeducational seminaries are to thoroughly educate on dementia, anyone who is interested, and at the same time to give them the possibility of free expression of their feelings or inner thoughts. Also, to diminish the stigmatization associated with Αlzheimer’s disorder and dementia in general. The warm welcome to our initiative and the positive feedback we are receiving by people, show us that the community has already embraced it. Our local parish has and continues to help us very much, by informing and activating its members as well as providing an auditorium, personnel and technical equipment, in order to enable us to carry out the aforementioned activity.

PO1.11. Exploring dementia care pathways in prisons in the east of England

VAN BORTEL Tine, TREACY Sam, WICKRAMASINGHE Nuwan, HAGGITH Anna

University of Cambridge, Cambridge, United Kingdom

Background: Prisoners over the age of 50 are the fastest growing age group in prisons in England and Wales, with numbers having tripled over the last 15 years. The health and social care needs of this group are particularly high – including the prevalence of dementia – and have given rise to spiralling costs and human rights concerns. However, as Government policies of austerity cut into budgets, the need for cost-effective policy and practice has intensified. Care pathways have been used in healthcare services to assist in this endeavour, but no prison dementia care pathways have been found. This study aims to identify current and ideal dementia care pathways in two prisons in the East of England, and explore solutions for the gaps in-between.

Methods: This exploratory qualitative study will establish a joint working group with prisoner peer supporters to modify the research protocol, together with interviews and focus groups with prisoners living with dementia and their supporters, and staff groups across the prisons and NHS Foundation Trusts. Mapping techniques and thematic analyses will then be conducted to present and explore the care pathways.

Results: The findings presented will include a mapping out of current and ideal dementia care pathways for the participating prisons. This will be accompanied by a discussion of facilitators and barriers to delivering ideal dementia care pathways and recommendations for the care and support of prisoners living with dementia that could be applied nationally and on a Europe-wide level.

Conclusions: There are large numbers of older prisoners held in a range of prison systems across Europe. Coupled with international principles requiring equivalent care for prisoners to that offered in the community, the development of dementia care pathways will hopefully make an important contribution to improving the experiences of people living with dementia across our prison systems.

PO1.12. Federal Initiative Dementia Service: A Network approach to develop and implement dementia strategies

HEERDT Christian

Informations- und Koordinierungsstelle der Landesinitiative Demenz-Service Nordrhein-Westfalen im Kuratorium Deutsche Altershilfe, Cologne, Germany

There is no dementia strategy in Germany. Therefore, improving the life of people with dementia and their relatives as well as general information for the public is mostly depending on social insurance and local actors. Approaches that coordinate and facilitate local action on a broader scale and implement a dementia strategy are rare.

Thirteen dementia service centers, together with an information and coordination office and a university based dementia transfer center, form the federal initiative Dementia Service North Rhine-Westphalia. This initiative is a regional development network with the aim of improving the situation of people with dementia and their relatives by Information and qualification offers and offers for small-scale structural development and networking of local actors

The aim is to provide people with dementia with the support, guidance and support they need to remain in their familiar environment and domesticity and to participate in social life - self-reliant, resource- and participation-oriented.

Of thirteen dementia service centers, twelve have a regional assignment. Nationwide, they implement the objectives of the state initiative in the cities and municipalities in NRW. Nationwide, one dementia service center works for people with immigration history. They are supported by the Information and Coordination Office of the State Initiative in the Kuratorium Deutsche Altershilfe and the Dementia Transfer Center at the University of Witten / Herdecke. The lecture will give an overview on how the initiative works and how the federal dementia strategy was developed for 2030 accompanied by a publicity campaign.

PO1.13. The new Alzheimer village of the Fondazione Roma; a positive approach for people with dementia

BARTORELLI Luisa, LEVI Stephanie

Alzheimer Uniti Italy, Rome, Italy

Introduction: An Alzheimer Village,Villaggio Emanuele(named after its founder), is being built in Rome integrating health and social resources. This new complex will offer a normal life for people with dementia while ensuring protection and vigilance, going well beyond the old concept of the nursing home. The Village, with its streets and piazzas, is an innovative structure where residents can wander around by themselves in “spazi di liberta’” and is open to the outside world. This interaction with their neighbors helps contribute to the concept of a dementia friendly community.

Method: The Village is a group of houses, with 14 independent units for people with dementia. Each unit houses six residents who actively participate in the management of their own households (washing, cooking, cleaning) supported by a dedicated team of staff members. Training is given to this team using a new positive approach towards dementia care. Activities are offered based on individual skills, encouraging maximum autonomy and contact with the outside world. In fact, there are clubs within the Village, each with different activities (arts and crafts, readings, music and other group activities) and the residents can make their own choices depending on their culture and preferences. There will also be a cafe, a mini-market, a restaurant and a space for events which will be open to the neighborhood. Three kinds of life-styles are considered for each resident: cosmopolitan, traditional and urban. Each life-style will have a different setting with specific furniture and objects of daily life that are in keeping with their personal stories.

Conclusion: We will present the data and the results from the first months of activity on the quality of life and well-being of the residents in this new environment, as compared to the classic nursing home.

PO1.14. Supporting the implementation of the Irish National Dementia Strategy: mapping dementia-specific community based services

BEGLEY Emer1, CREAN Mags2, MURPHY Donal3

1National Dementia Office, Dublin, Ireland, 2University College Dublin, Dublin, Ireland, 3The Alzheimer Society of Ireland, Dublin, Ireland

In September 2016, the National Dementia Office (NDO), Health Service Executive (HSE) and the Alzheimer Society of Ireland (ASI) partnered on a project to map dementia-specific community-based services nationally. The project supports the implementation of the Irish National Dementia Strategy (NDS) under a commitment to critically review health and social services for people with dementia to identify gaps in existing provision and prioritise areas for action in accordance with resource availability.

The aims of the project were to identify: (i) who is providing dementia-specific services in each Community Health Organisation (CHO) area? (ii) What is the nature of the dementia-specific service being provided? (iii) Where are dementia-specific services being provided? And (iv) when are these dementia-specific services available?

A desk-based review informed the development of an on-line survey which was administered to identified key stakeholders across the HSE and the ASI (N=46). With an 80% response rate data collection related to the time period between December 2016 and March 2017. A national advisory group supported the development and roll-out of the project.

A total of 314 dementia-specific community-based services were reported. The majority of these were dementia day care centres (N=64). Followed by services/supports targeted at family carers e.g. carer support groups and carer education programmes (N=81). There were far fewer services targeting people in the early stages of dementia such as peer support groups (N=2) and cognitive therapy programmes (N=7). Findings also show that there were significant gaps in service provision and inconsistency of availability of services across the country. 

Findings offer the NDO, the ASI and other providers a greater opportunity for the systematic development of new services in-line with identified local need.

PO1.15. Person-centered approach and the development of the inclusion community: The In.Te.SE project

ZAPPAROLI Alessandra1, FERRARI Arianna2, COSMO Chiara2, TORRESAN Federica3, GOFFO Giorgia4, MOGNATO Leila5, MICHIELI Susanna1, FAVARETTO Elisa6, SQUIZZATO Renata7, BASSO Cristina8

1Vigonovo Municipality, Vigonovo-Venice, Italy, 2Rindola Medical Center, Vicenza, Italy, 3Mirano Municipality, Mirano-Venice, Italy, 4Santa Maria di Sala Municipality, Santa Maria di Sala-Venice, Italy, 5Pianiga Municipality, Pianiga-Venice, Italy, 6Spinea Municipality, Spinea-Venice, Italy, 7Mira Municipality, Mira-Venice, Italy 8Regional Epidemiology Service and Register, Azienda Zero-Veneto Region, Padua, Italy

Background: In Italy, most of the people with dementia continue living at home during the disease development. The In.Te.S.E. Project supports the person-centred approach to dementia care, to consolidate the integration of social and health services throughout ULSS3 Serenissima’s territory (Veneto Region).

Methods: In the reference territory, 4 centers dedicated to people in early and middle stage of dementia have been opened. The centers offer stimulation programs associated with a support psychotherapy’s cycle for patients and caregivers.

The governance’s approach is transversal and collaborative, complementary to the classic social and health policies. The primary governance strategy is the "Consultation Table", defined the reference values and the building of mutual trust, helping to strengthen the community’s resilience and empowerment. At the "Consultation Table", the Healthcare Company interfaces with the policy maker (third/voluntary sector, public administration, local associations).

The main project goal of 2018 is to set up a series of actions to shape a Social Dementia Network, in line with the pattern of “Dementia Friendly Communities” enhancement that has already developed in other European countries. Through focus groups made up of social and health workers, there’s the willing to share awareness about the illness related socio-medical problems and to stimulate synergy and collaboration with the local health authorities, the local authorities, the social enterprises and the citizens, to actually set up a context of valorisation and shared participation with different skills, identified as “entry level” for Dementia’s Friendly Community creation.

Results: Scientific evidence has shown that a multidisciplinary approach is a determinant of well-being for the people with dementia. The In.Te.S.E. Project has proved to be an experience wherein public, private and third sector can positively collaborate with one another in order to increase the performance of social policy measures for the benefit of the whole community.

PO1.17. Professional manuals specialized in Alzheimer's and other neurodegenerative dementias

HERMIDA Javier, RUANOVA Lucía, RODRÍGUEZ Juan Carlos, RÍOS Noelia, FERRAL Romina, LÓPEZ Vanesa

Federación Alzhéimer Galicia, Santiago de Compostela, Spain

Goals: 1. Preparation of a collection of manuals that inform and guide both carers and professionals involved in care and intervention with people with dementia.2. To value the experience of professionals who work with people with dementia.

3. To improve the quality of life of people with dementia and that of their caregivers through the acquisition of nformation about programs and services.4. To approach the concept of dementia, its symptoms and consequences both in the person and in his / her closest nucleus.5. Eliminate stigmas and eliminate obstacles in the fight against dementias.

Methodology: The preparation of the manuals began in 2015, carried out by specialized professionals in occupational therapy, social work and physiotherapy, after the demand presented bynon-professional family caregivers in the absence and / or updating of information about the disease and the documentary vacuum detected in the care methodology.The coordinators of the three working groups were in charge of the organization for its preparation (setting meeting times, distribution of documentation, selection of information ...) The documents were developed both in face-to-face meetings and in online meetings. For the elaboration of the same a platform was used in which each author published a section of the selected chapter, then proceed to unify the set.

Results: The meetings of the professionals achieved as a result:1. Manual of occupational therapy in Alzheimer's and other dementias 2. Manual of social work in Alzheimer's and other neurodegenerative dementias 3. Manual of physiotherapy in Alzheimer's and other neurodegenerative dementias

Conclusions: These documents represent a pioneering collection of approaches to Alzheimer's from different professional perspectives and expand the collection of specialized publications for this entity in the field of dementias.

PO1.18. Milestones Program - how to involve pharmacists into the INDA activities?

EGERVARI Agnes

Social Cluster Association, Budapest, Hungary

The INDA© is a complex, interprofessional approach based program for the care of people living with dementia, and for those who are in touch with such people: professional or informal caregivers, friends and relatives. Its key words are: relationships and communication.

One of our latest activities aims to involve pharmacists into the interprofessional teamwork.

Background: Every second citizen in Hungary has insufficient health literacy. Those people do not know when, where to turn to if having any health problem. This is especially true in case of dementia, as the taboo and the stigma here makes the situation even more challenging.

Pharmaceutical Care is a patient-centered pharmacy practice that requires the pharmacist to work in concert with the patient and the care providers to promote health, to prevent disease and to assess, monitor, initiate and modify medication use. This well-known concept’s goal is to optimize the patient's quality of life.

We keep in mind the maintains the best Q of L -  not only for people with dementia, but also for caring families. As a well-qualified professional, after proper information and training, a pharmacist can recognize the early signs and indicate to the person concerned or to his or her relatives. There is an opportunity for early intervention.

Method: According to researches, pharmacists meet twice as often with patients as doctors - and this relationship is very confidental.

The booklet ’Handholder’s’ was the source of how we should communicate.

We organized a countrywide roadshow. Pharmacist who were interested arrived from 78 different pharmacies, altogether about 300 people received interactive information about the dementia phenomenon, about the booklet. During the program the booklet was spread through pharmacies in 20 000 copies.

We do believe, our program is a new possible framework to improve the quality of life for people living with dementia.

PO1.19. Pilot clinical quality registry for dementia in Australia: Development of key measures of quality of diagnosis and care

KRYSINSKA Karolina1, MCNEIL John1, BRODATY Henry2, STOREY Elsdon1, EARNEST Arul1, WOODS Robyn1, NELSON Mark1, WARD Stephanie1, DEAN Joanne9, LIEW Danny1, RYAN Joanne1, AYTON Darshini1, GARDAM Madeleine1, PRITCHARD Elizabeth1, ROBINSON Sandra1, AHERN Susannah1

1School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia, 2Dementia Centre for Research Collaboration, University of New South Wales, Sydney, Australia

Currently over 425,000 Australians live with dementia, and 250 people develop dementia each day. Dementia is the second leading cause of death in Australia. There are many areas for improvement in the quality of dementia diagnosis and care, and a clinical quality registry (CQR) can help to systematically monitor care provided and identify variation in clinical outcomes. The Australian Commission on Safety and Quality in Health Care identified dementia as a priority area for development of a registry in 2016.

In 2017 Monash University received funding from the Government’s Boosting Dementia Research Initiative to develop and test methodology for a dementia CQR. The feasibility of a dementia registry will be assessed using data from a large Australian study, ASPirin in Reducing Events in the Elderly (ASPREE) Study and a community sample. Phase 1 of the project involves development of Clinical Quality Indicators (CQIs) and a Minimum Dataset via a modified Delphi process. Phase 2 and Phase 3 will comprise recruitment of patients with a clinical diagnosis of dementia or mild cognitive impairment (MCI) into the registry from the ASPREE cohort and from a convenience community sample.

This presentation reports data from Phase 1 regarding a modified Delphi process to develop CQIs based on a review of Australian and international clinical dementia care guidelines, peer reviewed literature, and advice from an Expert Panel. We will also report on the feasibility of data collection of the CQIs based on the existing ASPREE data and on ASPREE participants with a community diagnosis of dementia or MCI who will be recruited into the CQR study cohort. We expect that outcomes from this pilot registry will inform and assist in the development of an Australian National Dementia Registry.

PO1.20. The Irish National Dementia Strategy: Report of a national educational programme for healthcare professionals

FOLEY Tony, JENNINGS Aisling

Department of General Practice, University College Cork, Cork, Ireland

Background: Published in 2014, the Irish National Dementia Strategy (INDS) advocates integrated, multidisciplinary dementia-care in the community and emphasises the need to support General Practitioners (GPs) and allied healthcare professionals in their delivery of dementia care.  Arising from the INDS, the PREPARED project (Primary Care Education, Pathways and Research of Dementia) was launched. The aim of this 3-year, national initiative is to develop, deliver and evaluate dementia educational interventions for GPs and primary care based healthcare professionals.

Methods: The dementia-specific educational needs of healthcare professionals were identified through face-to face interviews with people with dementia (n=5), family carers (n=12), GPs (n=14) and focus groups with primary care based healthcare professionals. 

Informed by the educational needs analysis a range of dementia educational interventions were developed, piloted and implemented.  Interventions included small-group practice-based, peer-facilitated workshops for GPs, interprofessional workshops for primary care teams, a university-accredited blended-learning course, e-learning modules and a primary care website www.dementiapathways.ie.

The interventions are being evaluated using surveys, interviews and focus groups

Results: The triangulated educational needs analysis highlighted areas of learning including; how to make and disclose the diagnosis of dementia, counseling strategies, signposting to local dementia services and the management of behavioural and psychological symptoms of dementia.

Informed by the needs analysis, to date, over 600 GPs and 300 allied healthcare professionals have attended dementia workshops and 44 GPs have undertaken a 12-week blended learning course. Evaluation is ongoing.

Discussion: The PREPARED project has developed and rolled-out tailored, interprofessional dementia educational interventions for GPs and allied healthcare professionals in order to facilitate collaborative practice and integrated care in the community.

PO1.21. Zagreb dementia clinical and care network

KUŠAN JUKIĆ Marija1, MIMICA Ninoslav2

1Andrija Štampar Teaching Institute of Public Health and Alzheimer Croatia, Zagreb, Croatia, 2University Psychiatric Hospital Vrapče, School of Medicine, University of Zagreb and Alzheimer Croatia, Zagreb, Croatia

According the data from 2011 the capital of Croatia – Zagreb is a city with 790,017 inhabitants and 17.7% persons were older than 65 years. The estimated number of the people with Alzheimer’s disease (AD) and other dementia is about 17,000 and still is growing in Zagreb.

In the XX century, the clinical care for people with AD was provided at two psychiatric wards (University Psychiatric Hospital Vrapče and Psychiatric Hospital “Sveti Ivan”) mainly for people with dementia (PWD) with severe psychiatric and behaviour symptoms in advanced stages of dementia. The early diagnostics of AD and other dementia was not available.

The persistent work of Alzheimer Croatia since 1999, with the interest of enthusiasts on the field of cognitive neurology and old age psychiatry, joined together with the more and more support from the authorities of city in rising awareness about that devastating disease in public, had moved us forward in establishing separately services of the Zagreb Dementia Clinical and Care Network.

The Network spreads from the early diagnosing (GP educational programs; Referral Center for Cognitive Neurology and Neurophysiology – Clinical Hospital Center Zagreb) to advisory centres (Advisory Center for member of family – non-formal caregivers by Alzheimer Croatia, Advisory Center for Psychogeriatrics by Teaching Institute for Public Health); psychogeriatric wards (with Referral Center for Alzheimer’s Disease and Old age Psychiatry - University Psychiatric Hospital Vrapče), to Day and 24-hours stationary care (Day Centres, residency homes with specialized units for PWD) to palliative care (palliative beds for people with dementia, mobile teams).  

The aim of Zagreb Dementia Clinical and Care Network is to be recognised in public in providing leadership and advice to shape Zagreb’s dementia services (but also our national services) so that PWD may receive an effective diagnosis, treatment and care.  

PO1.22. Dementia diagnosis rates in Wales – room for improvement?

WOODS Robert1, MACLEOD Catherine1, BRAYNE Carol2, MATTHEWS Fiona3

1Bangor University, Bangor, United Kingdom, 2Cambridge University, Cambridge, United Kingdom, 3Newcastle University, Newcastle-upon-Tyne, United Kingdom

Improving diagnosis rates is a key target of the Welsh Government’s Dementia Action Plan for Wales (2018), with a target of 3% improvement per annum from the current level of 53%, which is lower than other UK countries (e.g. England 68%). The diagnosis rate is the ratio of the number of people with dementia recorded on primary care dementia registers to the expected numbers in the area estimated from epidemiological prevalence studies.

CFAS Wales is a cohort study which recruited 3,594 people aged 65 and over drawn randomly from primary care lists in two areas of Wales, over-sampling those aged 75+ (46% response rate). Participants undertook a variety of assessments, including a diagnostic interview, GMS-AGECAT, and 2,236 were available and agreed to a follow-up assessment two years later. Dementia diagnoses from the CFAS Wales interviews were cross-checked with primary care dementia registers and primary care records. Records of 2,771 participants were checked, of whom 104 had received a CFAS dementia diagnosis at wave 1. Only 15 of these were included on the dementia register. However, for 8 further participants, dementia was mentioned in the practice records, with ‘memory problems’ noted for a further 20. A similar pattern emerged for incident cases i.e. those receiving a CFAS dementia diagnosis at wave 2, but not at wave 1. However, there were also 25 participants not meeting the CFAS diagnostic criteria at their most recent CFAS assessment who were included on the dementia register, with memory problems noted for many more.

We conclude that primary care registers underestimate the number of people where dementia has been identified, and rates could be improved by attending to this, but our results also highlight the need to understand the gulf between diagnoses made from assessment of a defined population, and those made via a clinical pathway.

PO1.23. Promoting informed and shared decisions about eHealth solutions for older adults and their informal caregivers

GAGNON Marie-Pierre1, BUYL Ronald2, GORUS Ellen2, CONSTANT Olivier3, URLINGS Judith4, GIGUÈRE Anik5, BOURBONNAIS Anne6, ABBASGHOLIZADEH RAHIMI Samira5

1Université Laval, Quebec, Canada, 2Vrije Universiteit Brussel, Brussels, Belgium, 3Flanders Centre of Expertise on Dementia, Antwerp, Belgium, 4Happy Aging - LifeTechValley, Hasselt, Belgium, 5Université Laval, Quebec, Canada, 6Université de Montréal, Montreal, Canada

The number of older adults suffering from cognitive problems, seen on a continuum from mild cognitive impairment to severe dementia, is expected to grow from 36 million in 2010 to 115 million in 2050 worldwide. The rapid development of information and communication technologies dedicated to health and wellbeing (eHealth) offers an unprecedented potential to assist elderly people with cognitive problems, including dementia, and their informal caregivers. However, the development of such technologies is not always informed by, and adapted to, their needs and preferences. This international collaborative project between Quebec and Flanders aims to support elderly people and their informal caregivers making choices about technologies to improve their health and wellbeing. 

Involving older people and their informal caregivers at the different phases of the research, this project will provide reliable, adapted and relevant information about the risks and benefits of eHealth technologies. A first step of the project is an environmental scan of eHealth solutions targeting older adults with cognitive problems and their informal caregivers that have been successfully implemented in Europe and Canada over the last five years. We will summarise evidence about the benefits and risks associated with these technologies, as well as acceptability and implementation issues. Then, we will develop a novel electronic decision support tool that considers the perspectives of older adults at risk for or living with cognitive problems, informal caregivers and health and social care providers in decision making about the use of eHealth technologies.

This project was launched in March 2018 and a first meeting was held between team members who combine various expertise from the academic and community sectors. The review of available eHealth solutions for older adults with cognitive problems and their informal caregivers is ongoing and preliminary findings will be presented.

PO1.24. Could Telemedicine in Nursing Homes improve Neurocognitive Disorders detection and diagnosis?

KROLAK-SALMON Pierre1, LEPERRE-DESPLANQUES Armelle1, MAILLET Audrey1, GAULIER Sylvain1, HAUGER Isabelle1, POLITIS Antonis2, MEHRABIAN Shima3

1Lyon University, Lyon, France, 1Résidence Talanssa, Talence, France, 2National and Kapodistrian University of Athens, Athens, France, 3Medical University, Sofia, Bulgaria

Background: All over Europe there is a lack of neurocognitive disorders (NCD) detection in primary care, including in the nursing home setting (NH). Possible explanation factors in NH include general practitioner’s (GP) limited time during visits, unawareness of diagnosis guidelines and tools as well as difficulties to refer to NCD specialists or for complex and/or frail patients. Thereby, telemedicine could be a way to improve access to specialist and NCD diagnosis.

Methods: Three countries (Bulgaria, France, Greece) participating in the “Act on Dementia” European Joint Action propose to test telemedicine for NCD detection/diagnosis in some NH, with or without dedicated units for NCD patients. Face to face workshops and conference calls enable to share similar NCD detection and data collection tools. NH teams (nurses and sometimes GPs) were trained and the experiments implemented from April to June 2018.

Results: Within 500 people from 7 NH participating to the experiments (1 in Bulgaria [Bankia]; 4 in Greece [Larissa, Alexandroupolis, Vari, Athens]; 2 in France [Villenave d’Ornon, Pessac]), patient’s characteristics, cognitive and behavioral scales, diagnosis and post diagnosis supports are collected for the telemedicine consultations eligible patients. Qualitative interviews including barriers and facilitators for NCD telemedicine experiment are performed with NH teams and patients.

Conclusion: These experiments describe the feasibility of telemedicine for NCD detection/diagnosis in NH from 3 European countries with very different economical resources (from 1 to 5 per capita gross domestic product), based on a shared detection/diagnosis approach. Telemedicine for NCD could be all the more useful for countries with few resources and specialists and whose populations are not any less exposed to NCD.

PO1.25. Enhancing ethical awareness and communication skills: The first Germany-wide stakeholder conference on dementia prediction

PERRY Julia1, HERTEN Benjamin2, STOCK GISSENDANNER Scott2, SCHICKTANZ Silke1

1University Medical Center Göttingen, Department of Medical Ethics and History of Medicine, Göttingen, Germany, 2IEGUS Institut für europäische Gesundheits- und Sozialwirtschaft GmbH, Bochum / Berlin, Germany

Objectives: Current dementia research is exploring different biomarkers for dementia prediction and early detection. The aim is to develop new treatment approaches, intervening in molecular mechanisms of the disease at an earlier stage. However, it remains unclear whether one or multiple markers actually will offer a reliable indicator for the onset or progression of dementia. Current developments in dementia prediction – not yet applied in clinical practice – allow a timely reflection the political frameworks and societal strategies needed to improve public and clinical communication about early dementia. For this purpose, we want to bring together different stakeholder perspectives. Including experts from neuroscience, social sciences and medical care, while also engaging people affected by dementia and the wider population.

Methods: In June 2018, we will conduct the first Germany-wide stakeholder conference based on structured and moderated discourse principles. The discourse is informed by statements submitted by 25 leading professionals and organizations who positioned themselves towards dementia prediction including German Alzheimer Society, German Medical Association, German Center for Neurodegenerative Diseases and German Academy for Ethics in Medicine.

Results: This discourse aims at the development of communication guidelines for dementia prediction procedures. These guidelines will then be tested and deliberated with healthcare students and trainees in case-based discussions.

We will present the results of the conference and a preliminary evaluation of the process. We will also discuss implications for the German and the European debate on dementia prediction.

Conclusions: Dementia prediction produces probabilities of developing a form of dementia in the future. While increased certainty regarding life planning and improved conditions for research can be beneficial, psychological burden, stigmatization and discrimination can be highly unfavorable. Moreover, probabilities of test results not only pose challenges to recipients but also to counselors. Developing guidelines and building frameworks for dementia prediction thus becomes essential.

PO1.26. Senior Friendly Communities in the Euregion Meuse-Rhine: cross-border collaboration on dementia and depression

SCHICHEL Mignon, VEENSTRA Marja, KEMPEN Gertrudis, DE VUGT Marjolein, VERHEY Frans

Maastricht University, Maastricht, Netherlands

Background: Due to the ageing of the population, the number of older people with dementia and other mental health problems will increase. However, little is known about local community policies on public health with respect to dementia and the prevention of depression for both older people and their informal caregivers. Cross-border collaboration could benefit the communities due to their similar demographic profiles and existing activities in the region. The aim of the present study is to examine these local policies from a cross-border perspective in the Euregion Meuse-Rhine (EMR). 

Methods: In the study we interviewed 33 Belgian, 52 Dutch and 27 German representatives of in total 32 participating communities in the EMR. Interviewees were policymakers and representatives of senior groups, care homes or dementia organisations, depending on who the municipalities invited to take part in the semi-structured group interviews. The interviews focused on the existing policies and activities with respect to dementia and prevention of depression and the needs of older people and informal caregivers in the community. 

Results: At the time of the assessment, 53% (n=17) of the communities was already working on policy or activities related to dementia, versus 6% (n=2) related to the prevention of old age depression. The participants reported difficulties with respect to reaching the group of informal caregivers. Despite an existing interest in cross-border and national collaboration between communities, almost all communities reported obstacles to such collaboration. The limited amount of existing collaborations existed within regions rather than across country borders.

Conclusions: In the EMR, the separate regions face a similarly ageing society. To cater for the specific needs of older people with mental health problems, prevention and awareness needs to be increased in the EMR. Cross-border collaboration can be a means to increase knowledge and to exchange best-practices. 

PO1.27. STRiDE: Strategies to Strengthen Responses to Dementia in Developing countries

COMAS-HERRERA Adelina, KNAPP Martin, TEAM STRiDE

London School of Economics and Political Science, London, United Kingdom

Dementia is not only a first-world condition. There are already more people with dementia in low- and middle-income countries (LMICs) than in high-income countries, and that is set to increase. By 2050, about 90 million of the 131 million people who are expected to have dementia globally will be living in LMICs. Everywhere, dementia is a major cause of disability among older people and can have a huge impact on their quality of life. This is more so where well-developed health and care systems do not exist.

Provision of care and support for people living with dementia, particularly at later stages of the condition, can be socially and economically very costly. These costs are mostly borne by family members, particularly women and girls, putting their potential for education and/or earnings at risk. However, in the face of demographic, societal and economic changes, there are indications that nations can no longer rely only on this informal family care for people with dementia. LMICs in particular need to develop evidence-based responses to dementia prevention and care.

The STRiDE project, funded by Research Councils UK’s Global Challenges Research Fund, will build capacity to support the development, implementation and evaluation of national strategies to deliver appropriate, equitable, effective and affordable dementia care. We will do this by:

  • working with researchers, Alzheimer’s associations and policy makers in Brazil, India, Indonesia, Jamaica, Kenya, Mexico and South Africa to co-develop a range of research and training activities to develop their skills in interpreting, using and communicating dementia research evidence; and
  • developing practical reesearch tools, data and capabilities to support the generation or improvement of policies to improve care for people with dementia and support family carers.
  • building partnerships with other initiatives to build capacity in dementia care research globally

PO1.28. Twinning programme Netherlands-Indonesia

FONK-UTOMO Amalia

Stichting Alzheimer Indonesia Nederland, Groningen, Netherlands

Alzheimer Indonesia and Alzheimer Netherlands have a collaboration under the Twinning Programme of Alzheimer's Disease International. This is a three-year collaboration for 2017-2019 and actually an renewal of a previous Twinning programme. The objective is to exchange information and learn from each other and for Alzheimer Indonesia to benefit from the organizational experience from Alzheimer Netherlands. In 2017 a foundation (Stichting Alzheimer Indonesia Nederland) was created in the Netherlands to support the work in Indonesia and raise awareness within the Indonesian community living in the Netherlands. This foundation has organised a number of events during 2017 and 2018. Alzheimer Netherlands received a three-year grant from the Ministry of Health to support the programme financially. A key activity was to support the ADI Asia Pacific conference in Jakarta, Indonesia in November 2017 with both a financial contribution and a number of sponsored academic speakers. 2018 will focus on building capacity within Alzheimer Indonesia and its local chapters and in 2019 we hope to report the oputcomes of the programme at the 29th Alzheimer Europe conference in The Hague. We want to give an overview of activities in both countries and highlight the benefits for each organisation.

PO1.30. Community Areas of Sustainable Care and Dementia Excellence in Europe: an innovative approach for future dementia care (CASCADE)

DE WACHTER Leentje

Flemisch Expertise Centre on Dementia, Antwerp, Belgium

In 2015, dementia affected some 10.5 million citizens between 30 and 95+ years of age in Europe. This number is estimated to increase to 13.42 million people by 2030. This creates a strongly increasing demand for dementia care services, currently unmet appropriately. Patients are often 'parked' in expensive hospital beds as there is no suitable local service provision. To avoid overwhelming health systems, new approaches are needed for dementia care with wide applicability across different cultural/social settings which crucially must be financially sustainable. To date new developments have focused on removing people living with dementia to a safe place rather than providing a continuum of care that enables them to stay in their own home as long as possible. The challenge is to provide sustainable person-centred programmes of care support in local communities.

The overall objective of the CASCADE-project is to develop a financially sustainable approach to dementia care that can be replicated across the 2Seas area and potentially further across Europe. The facilities created will provide short term respite and longer term care and will fully engage with the local community. This will be the basis for a cascade of shared learning and cross border excellence in dementia care for the future.

CASCADE recognises that dementia is long term and that a person's needs on day one of diagnosis will be very different to their needs 20 years later. A model will be created that provides appropriate care at every point on the continuum. Next to the creation of a cross border centre of dementia care excellence, there will be attention for new offers e.g. tourism and care. In our poster/talk we will give an overview of the actions to take.

PO1.31. “Music Mirrors” an intervention study to investigate the effectiveness and use of an everyday digital resource for supporting people living with dementia

OPPIKOFER Sandra1, HESS Andrea1, SUSANNE Nieke1, EDWARDS Heather2, MEISTER Laura1, HOFSTETTER Gabriela1

1University of Zurich, Zurich, Switzerland, 2Come Singing, Norwich, United Kingdom

Background: Music Mirrors is a simple way of preserving key biographical links with sounds and music that are significant to a person living with dementia. When used sensitively within an ongoing personal relationship (with a carer, family member) a Music Mirror may help to finding and sustaining bridges of communication and understanding otherwise threatened by cognitive decline.

Objectives: The first scientific study about Music Mirrors will investigate the efficacy of Music Mirrors in three different dementia care settings (ambulant, hospital, long-term care). Main hypotheses are: (a) the targeted use of Music Mirrors can be usedto strengthen individuallysignificant resources thereby improving well-being and stabilising quality of life and (b) the regular use of Music Mirrors can support more successful compliance in treatment and care and (c) the regular use of Music Mirrors reduces subjective stress and stress levels of carers and caregivers.

Intervention: Individual Music Mirrors are being made by volunteers together with study participants and their relatives (identification of relevant, acoustic information associated with individual biographical information). During the 6-week intervention phase (spring 2018), Music Mirrors are applied on demand (e.g. during crises or agitation), or at least twice a week. Caregivers and nurses are provided with iPads with audio files that are linked to biographical information used as material for engagement with people living with dementia.

Design: Longitudinal RCT study with a within- and between-subject design over a period of four years (four six-week-intervention phases withN=195).

Intervention outcome measures: Pre-, mid and post intervention measurment, have been made using various quantitative (i.a. OERS, GACI, NPI, CDS, GOLD-MSI, SPANE, LeBe) as well as qualitative instruments (e.g. intervention diary). Subject of measurment were people living with dementia, their respective caregivers and volunteers.

Reference:https://www.musicmirrors.co.uk/

 

 
 

Last Updated: Thursday 15 November 2018

 

 
 

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