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PO2 - Policies and strategies

Detailed programme, abstracts and presentations

PO2 - Policies and strategies

PO2.1. Actifcare: Access to timely formal care

RØSVIK Janne, VERHEY Frans, DEVUGT Marjolein, SELBAEK Geir, MEYER Gabriele, WOODS Bob, ORELL Martin, WIMO Anders, IRVING Kate, GONÇALVES- PEREIRA Manuel, ZANETTI Orazio

Background: Timely access to dementia care services is important for reducing health care cost by postponing nursing home placement, increasing quality of life for persons with dementia and reducing carer burden.

Aim: Actifcare aims to analyse the pathway to formal care for persons with dementia and their families, in an attempt to better understand the reasons for inequalities in access to healthcare and identify best-practice pathways to formal care across the eight participating European countries.

Method: Literature review and expert consultation will be used to describe and compare the different pathways across the eight European countries.

Qualitative focus groups will be conducted with persons with dementia, their carers and health and nursing care professionals, to explore personal experiences of accessing formal care, as well as barriers and facilitators to access. Two to four focus group interviews will be conducted in each country for each group.

Semi-structured interviews will be conducted with selected persons (n=3-5 per country) who influence national politics and  decision making about formal care in order to further examine barriers and facilitators of timely access to formal dementia care

A one year prospective cohort study will investigate access to and use of formal care services by persons with dementia and their carers, and examine how this relates to their met and unmet needs and quality of life. In each participating country, 50 patients/carer dyads will be included (N=400). Assessments will take place at baseline, after 6 and 12 months follow-up

A cost-consequence analysis of formal care service utilization, based on the clinical and economic data assessed in the cohort-study will be performed.

Cross national comparisons of health care systems, individual pathways to care and cost information will provide insight to develop best practice pathways to formal care, in terms of efficiency and cost effectiveness.

PO2.2. Dementia- a common Challenge

JOHANSEN Laila Kathleen, AKETUN Sigrid, LYNGROTH Solfrid  Rosenvold, BONDE Erling, ERTNER Lene, WASSERFALL Ellen

Background: The City of Oslo Resource Centre for Geriatric Care (RCG) contributes to competence development of dementia to health care personnel within nursing homes, home care services and hospitals. 

The National Health Association, Oslo dementia chapter (NHA-ODC) is an interest organisation working for people with dementia and their carers.

Goal: Strengthen the collaboration between NHA-ODC and RCG by developing further meeting points and include the perspective of people with dementia and their carers.

Method:

  • Dementia Forum - an annual gathering for managers in the city districts of Oslo, managers of home care services and the interest organisation. The County of Oslo and Akershus also contributes.
  • The Network for dementia coordinators/dementia teams in the City of Oslo, led by RCG, where a representative for the NHA-ODC participates.
  • An expert group (persons with dementia) is about to be established to give feedback and suggestions to RCG. It is important that the participants also find it meaningful to take part in this work.
  • Involvement in educational where both parties are involved as lecturers in conferences, competence development and awareness raising programmes run by the other.

Results and conclusions:

  • The contact between health care personnel/related municipal activities and people with dementia/interest organisation is strengthened. The themes, agenda and content in different programs have become more relevant.
  • The interchange of information is enhanced.
  • A user forum for people with dementia, led by the NHA-ODC, will function as an expert group for RCG.
  • The health care personnel have strengthened their knowledge about the personal experiences of people with dementia and their carers.
  • Relevant theory and experience is shared with the carers and people with dementia.
  • The perspective of people with dementia and their carers is systematically included.

PO2.3. Finnish elder act - did it improve the legal rights of people with dementia

MÄKI-PETÄJÄ-LEINONEN Anna, NIKUMAA Henna

The Finnish Act on the Care Services for Older Persons (the Elder Act) entered into force on 1 July 2013. The central objective of the act is to support the wellbeing, health, functional capacity and independent living of the older population and to improve their access to social and health care services of a high quality.

The act describes the content of the care chain for older persons and contains provisions concerning advice services, the mapping of the service needs, the right to have a service plan and the decision on granting social services. Furthermore, it contains regulations on the quality of services. The fact is however, that other legislation which applies to the population as whole, contain provisions that are very similar to the new act. One can thus ask, whether the act brought additional value for the care services for older persons and for persons with dementia. Did it, in fact, change anything?

Nevertheless, the Elder Act does contain some new regulations:

1)     Local authorities must establish a council for older people to ensure the older population’s opportunities to participate and exert influence.

2)     An older person has the right to obtain the social services, other than urgent services, granted to him or her without unnecessary delay and at the latest after three months from making the decision.

3)     Older married and cohabiting couples must be offered the opportunity of cohabitation.

4)     Local authorities must appoint an employee responsible for an older person if the older person needs help in matters regarding the provision of services and their coordination.

5)     If a health or social care professional has been informed of an older person in need of social or health care services, the health care professional or employee must confidentiality provisions notwithstanding notify thereof the authority responsible for municipal social welfare.

In spite of these reforms, some issues, such as the mandatory number of personnel in care units, were left unregulated. Hence, the partly unfortunate outcome: the new act is considered somewhat unsatisfactory and revisions are already being suggested.

PO2.5. Successful implementation of national guidelines using modern technology

NORDBERG Gunilla, HOFFMAN Wilhelmina

The knowledgebase of dementia is under intense development at the same time as the care of persons with dementia face both opportunities and challenges.

The Swedish Dementia Centre (SDC), established 2008, is a non-profit foundation and the Swedish national centre for excellence in dementia care. Our commission from the government is to collect, structure and disseminate knowledge and to facilitate translation of research and implementation of new knowledge into nursing and care. SDC actively promotes future development in care of persons with dementia – towards a more dementia friendly society.

Dementia ABC and Dementia ABC plus are seven web-based educations based on the national guidelines for dementia care, published 2010 by the National Board of Health and Welfare and best practices from experts all around Sweden. The educations were created by SDC to promote implementation of these guidelines. They also provides knowledge regarding The Swedish Dementia Registry, SveDem, a national quality registry on dementia disorders and the register for behavioural and psychological symptoms in dementia (BPSD).

Dementia ABC is the first basic step and Dementia ABC plus are tailor made for each specific level; Primary Health Care, Needs Assessors, Home-Help Services, Residential Settings, Hospitals and Relatives in order to cover the whole care chain. The aim of the educations is to follow the person from early stages until end of life. There is also a handbook connected to each specific target group that can be read separately but also act as a supplement.

The web-based educations are free of charge and accessible for everyone. After fulfilling a course and the participant successfully have passed the test, an individually numbered diploma is created. The educations are continuously followed up regarding statistics and can be followed on SDC’s homepage. More than 100 000 users are registered and new users are registered every week.

PO2.6. Focus on dementia: supporting people to stay connected within their community

PEARSON James, PHILIPS Douglas, MILLER Michelle,

The Focus on Dementia Programme is a partnership between Joint Improvement Team, Alzheimer Scotland and Scottish Government and Quality and Efficiency Support Team. An improvement collaborative approach is being undertaken to support 5 health and social care partnerships in Scotland (rural and urban areas). Test sites are multidisciplinary teams working alongside people with dementia and their families and carers.

In the UK an estimated 40% of people with dementia live in some form of institutional care. This is higher than other countries. People with dementia and their carers do not always receive the range of health and social care interventions required to build their resilience and support them to live in the community.

A new ‘8 pillar’ model has been produced by Alzheimer Scotland alongside people with dementia and their carers and health and social care staff in Scotland. This evidence-based model is being tested in 5 health and social care partnerships.  This model proposes a comprehensive integrated and coordinated approach to supporting people with dementia and their families and carers.  This includes the introduction of a dementia practice co-ordinator function, a named, skilled, practitioner. They will ensure access to all pillars of support on an ongoing basis as appropriate to each individual, and will coordinate between all the practitioners delivering care, treatment and support. The other pillars include support for carers, personalised support, community connections, environment, mental health care and treatment, general health care and treatment and therapeutic interventions.

An improvement collaborative has been established nationally to support the 5 test sites to build capacity and capability for improvement, share data, progress, challenges and opportunities.  A measurement framework and data reporting tool is in place for both qualitative and quantitative data reporting and analysis.

This work takes a therapeutic approach to enhancing the resilience of people with dementia and their families and carers: equipping and supporting them to cope with symptoms of moderate to severe dementia. The results of this work will inform the National Dementia Strategy for Scotland in 2016 and make recommendations about the adoption, spread and sustainability of this model.  Lessons learned at the time of the event will be shared with delegates.

PO2.7. The use of real world data to tailor community services for persons with dementia and informal caregivers: The Bavarian Dementia Survey (BayDem)

SCHALLER Sandra, Marinova-Schmidt Velislava, SETZER Manuela, SCHNETZER Ina-Marlene, THRON Cornelia, POPP Susanne, HOESL Katharina, MASSICOT Gudrun, GASSMANN Karl-Günter, GrAESSel Elmar, Kolominsky-Rabas Peter

Background: The number of persons with Dementia in Bavaria (Germany) is predicted to increase from 220.000 (2014) to 270.000 in 2020. In average 70% are cared for at home, mainly by informal caregivers. Despite this situation, there is a lack of knowledge about the health care situation and individual needs of persons with dementia and their informal caregivers, which is especially true for rural areas. Therefore, the objective of the Bavarian Dementia Survey (BayDem) is to develop and improve treatment and care for persons with dementia and informal caregivers, by providing longitudinal information about individual care situations with a specific focus on rural areas.

Methods: BayDem is a multicenter project at three sites in Bavaria, Germany (Dachau, Erlangen, Kronach). Project participants are persons with a dementia diagnosis according to ICD-10 (F00-F03) and informal caregivers aged >18. To identify specific and longitudinal information about individual long-term needs and patterns in the care of persons with dementia, face-to-face interviews take place in close cooperation with local community institutions.

Results: To assess specific needs over the disease course, the following determinants are assessed in face-to-face interviews: Informal caregivers’ needs (CNA-D), resource use/uptake of community services (RUD), personal living situation, medical parameters, activities of daily living (ADCS-ADL), behavioural symptoms (NPI), caregiver burden (BSFC-s), and social networks (LSNS). Local project partners are: Hospitals (memory clinics), medical professionals (neurologists, psychiatrists, general practitioners) and community services (outpatient nursing services, caregiver counselling institutions).

Conclusion: BayDem will provide specific knowledge about Dementia treatment and care at three sites in Bavaria, by focusing on patterns of care and putting the person with dementia and their caregivers actively in the focus of research. The provided real word data results are of high importance for the development and improvement of local and national health and community services for persons with dementia and their informal caregivers.

PO2.8. The role of active caregivers and informal networks in supporting people with dementia

FABBO Andrea, PALESTINI Luigi, NICOLI Maria Augusta, LUDOVICO Livia

Being a person with dementia implies the need of a constant interaction with health care services: therefore, we need to focus on how such services can interact with active caregivers. Besides, people with dementia are also part of a community able to provide resources stemming from both primary social networks (family, friends, neighbourhood...) and secondary ones (local health care policies, authorities and organizations). Such resources could complement the activities of the health care services and avoid duplication of effort in support of people with dementia.

Our study aims on the one hand to trace the formal and informal networks of support for dementia, and on the other to investigate the psychosocial impact on caregivers for people with dementia. Caregivers are indeed central nodes in the aforementioned networks, but at the same time they are part of a community which provides resources to deal with the impact of a chronic and degenerative condition. In other words, the intersection of multiple support levels weaves the fabric by means of which a community absorbs the impact of dementia, and responds to the needs that it creates.

The study was carried out in two Emilia-Romagna Local Health Trusts by administering a questionnaire aimed at retracing caregivers' formal and informal support networks, and at assessing a series of psychosocial variables that could be related to taking care of a person with dementia and accessing local resources for dementia support (i.e., caregiver empowerment, sense of community, caregiver perceived burden, perceived social support, perceived quality of life).

Data mining is in progress; preliminary results show that empowerment, burden, social support and quality of life levels are related to both socio-demographic variables (such as caregivers' age, gender, employment status and education), and to the structure of networks the caregivers described (extension and composition).

PO2.9. “Support who supports”

SOMMELLA Francesca, MARANO Francesca, FRANCONE Caterina, De ROSA Giuliana, BRUNO Patrizia

Introduction: The association A.M.N.E.S.I.A., Italian acronym for Neurogeriatric Diseases and Alzheimer Syndrome Association, has promoted a formation course called “Support who supports”, to offer participants the best possible formation on the modalities of approaching dementias and the management of such clinical condition.

Purpose: The objective has been to guarantee a serene environment between operators and users through the teachings taken from the “Approach capacitante” developed by Dr Pietro Vigorelli, showing how the assimilation of such concepts can facilitate cohabitation with the users and succeed at instilling a valid help in the support to operators, frequently in burn-out conditions.

Materials and Methods: The formation course involved a group of 20 people, divided into Carers, Healthcare Assistants, Nurses, Psychologists and Social Workers who operate in the same Residential Care Home structure. An objective monitoring of burn-out indicators was carried out through the questionnaire on organisational welfare “O.Q.H.” by Avallone and Paplomatas (2002), handed out both before and after the course, by means of psychologists and educators. Moreover, through expressive and emotional group exercises, inspired to the technique of role playing, the operators were asked, as actors, to re-enact the relationship between the parties involved, with the aim to make the participants aware of their own attitudes towards imitation, action and the observation of the behaviour.

Results and Conclusions: The analysis of the questionnaire scores in the two conditions, has shown how the total scores significantly decreased in terms of the indicators of work ineffectiveness and psychophysical malaise. Moreover, the technique of role-play allowed participants to alienate themselves from their mental screens and to put themselves in the misunderstood reality of dementia. This allowed for greater sensitisation and better awareness in the way operators act and a more serene cohabitation for the user.

PO2.10. Attitudes of Hungarian family physicians regarding to screening and care of the Alzheimer’s disease

HEIM Szilvia, BUSA Csilla, CSERGO Agnes, KARADI Kazmer

The most common reason of major cognitive disorders (DSM-V) is Alzheimer's disease, which worldwide causes a growing health, social and economic problems. In Hungary, it is also necessary to provide care for a growing number of elderly. Hungarian epidemiological data estimates about 200,000 patients with Alzheimer's disease, however approx. 5000 patients are treated with specific therapy. The supply system has much of difficulties, only a few institution can provide high-quality care pathway. A large part of the burden presses on families and general medicine teams. The objective of recent study was screening how Hungarian family physicians think about the care pathway of people with Alzheimer’s disease. We estimated 390 family physicians' attitudes in relation to patients and their care system. A questionnaire survey was carried out among family physicians measuring above mentioned objectives. Descriptive analysis and non-parametric statistical tests were performed over questionnaire’s items.  Most of family doctors felt regret, helplessness and uncertainty in relation to patients with Alzheimer’s disease. The knowledge of available diagnostic tools are reachable, but limited usage of them was reported. The family physicians considered therapy as difficult, challenging and requiring complex task. An important aspect is that nearly 80% of respondents did not take part in education related major cognitive disorders in the last 2 years. The WHO reports that the major cognitive disorders should be a priority in health care system in the coming decades. According to the gatekeeper function of family physicians their role is major and important in this process. A special attention should be given to their education and training in this field.

PO2.11. National data on social home help – organization and accessibility

LEBAR Lea, NAGODE Mateja

Social home help is a fundamental social care service provided at the home of the individual, but according to the planned scope, its development is significantly slow. The Social Protection Institute of the Republic of Slovenia every year monitors the implementation of social home help in every Slovenian municipality and therefore provides the national statistics and analysis in this field. Data from 2013 shows, that there is around 6.500 users of social home help in Slovenia, of whom 25 % have dementia. In the presentation, we will outline the most recent national data (for the year 2014) with the special focus on organisation and accessibility of social home help. For a number of reasons, most common of which are geographical and financial ones, home help is not available to a number of potential users.

PO2.12. Do, enable, influence-Alzheimer’s Society UK translating research into practice

CAPPER Colin

Since 1990 Alzheimer’s Society UK has spent over £40 million on cutting edge research projects investigating the cause, cure, care and prevention of all types of dementia.  As part of our care for today and cure for tomorrow research strategy by 2017 we will fund at least £10 million of new research each year, including new funding to support more research into practice initiatives. 

Over the years Alzheimer’s Society has received lots of feedback from members of  our own workforce, people affected by dementia and the dementia research community indicating that more needs to be done to enable the findings from research to be taken up and put to use, particularly in the care setting.  Put simply, we need to move beyond “more research is needed” to begin to see research translated into real world benefits for people affected by dementia. 

In response Alzheimer’s Society has established a new team within its Research and Development Directorate working to fund and support research which:

  • Brings together researchers and those who will put research findings into practice.
  • Generates new knowledge in Implementation Science, developing understanding of what it takes to design, delver and translate research into better outcomes for people with dementia in a range of settings.
  • Identifies and supports the scaling–up of Implementation ready treatments, interventions and services from across Europe and evidence benefit for people affected by dementia. 

This presentation will describe the Society’s journey to Research into Practice, highlighting what  charity research funders can do to support research implementation at a European level, will explore some of the facilitators and barriers that can enable research implementation and the vital role played by people affected by dementia in influencing high quality research implementation. A number of case study examples will be used. 

PO2.14. The cognitive impairment in a hyper-cognitive society.

BOADA Mercè, CANABATE Maria Pilar, MORENO Mariola, PRECKLER Silvia, ALEGRET Montserrat, HERNÁNDEZ Isabel, RUIZ Agustín, TÁRRAGA Lluis,

Introduction: Contemporary society has been qualified as a “Hyper-cognitive society”; a society based on knowledge, information and skillfulness to process data and to understand statements.

The pillar which supports it is knowledge in all of its models: discovered, still to be discovered, shared, available, understandable. Capacities needed to go through our current social environment necessarily rely on the skillfulness to interpret the load of information constantly deployed before. Reason (whatever technical, instrumental, theoretical, scientific or practical) is our time’s driving force.

Objectives: To analyze representations and practices generated by the cognitive impairment in a hyper-cognitive society.

Subjects and Methods: An ethnographic work was carried out throughout 8 years, combining participant and non-participant observations; 872 pieces of news and 2.123 documents issued by general practitioners to address patients to specialized diagnosis units were analyzed. Additionally, 30 in-depth interviews with people with dementia, their relatives and professionals working on dementia were collected.

Results: Losses related to dementia represent disintegration of the set of qualities which make up a competent individual. The use of “Alzheimer" term is tied to a constellation of meanings (loss, incapacity, dependency, overload, foolishness, decay…) which brings with it –and simultaneously restricts– certain trains of thought and courses of action. These meanings are recollected both in annihilating metaphors and in statements of institutions and individuals linked to the dementia, in family guides or in newspaper’s articles.

Conclusions: The representation of cognitive impairment tends to be hegemonic. It overlaps a sort of equally stigmatizing layers: non-autonomous, foolish, incompetent. Those categories convert cognitive impairment into a structure which holds different strategies aimed to marginalize, and by means of which one can justify the exclusion of individuals with dementia to the outskirts of society.

This representation includes resistances which go far beyond ethics. New diagnoses in preclinical stages make that depersonalizing metaphorical descriptions be used reluctantly.

 

 
 

Last Updated: Monday 05 October 2015

 

 
  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene
 
 

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