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QOP5. Quick oral presentations – Policy

Detailed programme and abstracts

QOP5.1. “Dementia friendly spots” a network providing information and support in local communities

L. ZLOBEC Štefanija, KRIVEC David, BASTARDA Maša, KEČKEŠ Polona

Spominčica - Alzheimer Slovenija, Ljubljana, Slovenia

Dementia Friendly Spots (DFS) is a national awareness raising programme, they help create a dementia-friendly environment by encouraging and ensuring greater inclusion, acceptance and safety of people with dementia and their carers in society. Organizations in the DFS network also provide friendly and accessible use of their services for persons with dementia in local communities

The first DFS was opened at the Human Rights Ombudsman office after the training of employees. The opening was covered by national media. Member of EWGPD presented his life with dementia and stressed the importance of building dementia inclusive society.

Since, there has been a growing interest in DFS from organizations all around the country. The training programmes for covers the topics about dementia and first signs, communication with persons with dementia, importance of timely diagnosis, post diagnostic support and rights of PwD. Then, an official opening with culture programme is organized, where all important stakeholders from local community are present and is covered by media. The organization is presented with a DFS sticker, a certificate and put on web map. Activities are evaluated, and trainings are periodically renewed. DFS network consists of more than 200 different organizations: Nursing homes, Intergenerational and Family Centres, Health Centres, Pharmacies, Libraries, the Police, Social Work Centres, and Red Cross organizations. The Ministry of Social Affairs, Ministry of Health, Ministry of the Interior, the Ministry of Defense and the Social Chamber of Slovenia, the National Institute of Public Health, and the Faculty of Social Work also joined the DFS network.

Persons who visited DFS most often wanted information about the disease, the first signs of dementia and existing forms of help. They also often needed help in managing critical situations, resolving problems, congestion, helplessness, and problems in caring for a person with dementia. 

QOP5.2. Reviewing the definition of multimorbidity and comorbidity in dementia care

DUNN Rosie, CLAYTON Ellie, WOLVERSON Emma, HILTON Andrea, PRICE Elizabeth

University of Hull, Hull, United Kingdom

There are two common terms used in the dementia care literature to describe people living with multiple health conditions; ‘comorbidity’ and ‘multimorbidity’. However, these terms lack a standardised definition and conceptualisations differ between practitioners and researchers. In this presentation we review the definitions of multimorbidity and comorbidity and share a standardised definition which we hope will inform future research and clinical practice as well as raise awareness of the importance of the language we use in dementia care.

We systematically searched for articles containing definitions of multimorbidity and comorbidity in the context of dementia care. We developed an operational framework of multimorbidity from the retrieved articles. Abstracts and titles of 4261 articles were screened from five databases; MEDLINE, PsychInfo, PsychArticles, Academic Search Premier and CINAHL. 27 articles were included for review. A narrative synthesis revealed four key findings; there was considerable overlap between definitions and concepts of comorbidity and multimorbidity; definitions were overly medicalised and only focussed on physical health conditions; when a comorbidity definition was used, the chosen index disease was dependent on the researchers interest and the majority of articles cited definitions from non-dementia research.

This presentation will review the definitions of comorbidity and multimorbidity in the context of dementia care. We demonstrate that although the two terms are independent of one another they are used interchangeably. There was also an indication that definitions used within dementia care were not specifically linked to dementia. We will present an operational framework that compiles a comprehensive definition of multimorbidity within dementia care, taking into account dementia severity, the role of carer and healthcare professionals. 

QOP5.3. The impact of advance directives in Portugal

ZINCKE DOS REIS Maria Do Rosário

Alzheimer Portugal, Lisbon, Portugal

From 2014 till the end of March, only 30 626 people, in Portugal, registered their advance directives at RENTEV (the national digital platform created to register living wills and health care proxies). The Portuguese population is of about 10 million people. Why only such a small percentage of people felt motivated to write a living will or to appoint a health care proxy? Possible reasons: lack of information and awareness; misperception with euthanasia; difficulties in understanding and fulfilling the form; lack of concern about the future; paternalistic approach from doctors, nurses and even patients: “the doctor will know what will be the best for me.”

Making an advance directive is an exercise of autonomy. It is about making our own choices and decisions instead of letting the others decide about us. “Nothing about us without us”. It will avoid uncertainty and feelings of guilty among our family and friends if they are asked to participate in difficult decisions about our health in a moment that we lost our autonomy to do it.

Is the Autonomy a not strong enough ethical principle? Don´t we need to strengthen the moral intimacy between doctor and patient to make them feel more comfortable to discuss end of life issues? Would discussing advance directives in the framework of advance care planning help to raise awareness?

The Portuguese Association of Bioethics submitted a proposal to the Parliament to change the Act of the Parliament nº 25/2012 (regulating the Advance Directives), in order to include a rule stating that every adult at the admission in a public or private hospital shall be informed about the right of subscribing an advance directive.

These are some issues around the impact of advance directives we would like to develop at the oral presentation.

QOP5.4. Dementia is a national and urgent challenge where we have to work together

MEERVELD Julie

Alzheimer Nederland, Amersfoort, Netherlands

Alzheimer Nederland created a national strategy for the Netherlands with our vision: a future without dementia and an improved quality of life for everyone who is dealing with dementia. We use this strategy to make our own responsibilities explicit but we also underline the urgency of doing it together. Together with healthcare insurances, together with the government, together with the municipalities and of course based on the voice and needs of people with dementia and their caregivers. The strategy is concretized into objectives, goals, strategies and measures and it consists of 4 main subjects, namely Research, Support and Care, Prevention, and a Dementia Friendly Society.

Our strategy inspired the ministry of Health, Welfare and Sport to create a similar strategy for the Netherlands that is based on our mission. We work closely together to realize the best results possible. In our presentation we will further explain our strategy and elaborate on the actions we took to achieve an influence of the strategy on a national policy level.

QOP5.5. Finnish Age Strategy promotes implementation of memory- friendly practices

VILJAMAA Seija1, HAMMAR Teija2

1Ministry of Social Affairs and Health, Helsinki, Finland, 2National Institute for Health and Welfare, Helsinki, Finland

Background: The population of Finland is rapidly ageing. The share of over-65-year-olds will increase from the current 20 percent to 26 percent by 2030. As the population ages, the number of people with memory disorders is also increasing. Approximately 190,000 persons have some form of memory disorder and over 13,000 are diagnosed with a dementing disease yearly.

Ageing Policy: The Finnish ageing policy promotes older people’s functional capacity, independent living and active participation. The reform of ageing policy and service structures aims to enable older people to continue living at home, even until the end of their lives. The focus of the Government Programme is promoting health and wellbeing, and the memory disorders are recognized as well as other chronic diseases.

The impact targets of the national Age Strategy for 2030:

  • Functional capacity of working age people is improved and working careers are extended.
  • Older people maintain their functional capacity longer.
  • Voluntary work has an established role in society.
  • Digitalization and new technologies have improved wellbeing.
  • Service system is non-discriminating, coordinated and cost-effective.
  • Housing and living environments are age-friendly.

Towards a Memory-Friendly Finland: The national Memory Programme (2012-2020) aims to support people with memory-related diseases to live their lives as active members of the society according to their own capacity, abilities and resources.  It includes four main areas:

  • promoting brain health
  • fostering open attitude towards brain health, treatment of dementing diseases and rehabilitation
  • ensuring quality of life
  • increasing research and education.

Many actions have become part of practices and activities in the life of person’s with dementia. The implementation, including new practices like Finger model, continues in social and healthcare reform and the Age Strategy. Specific care guidelines, the Elderly Care Act and the Quality Recommendations for older people services also support the quality of life of people with dementia.

QOP5.6. Brain Health Scotland: a national initiative to reduce incident dementia

RITCHIE Craig1, SIMMONS Henry2, BORTHWICK Anna3

1University of Edinburgh, Edinburgh, United Kingdom, 2Alzheimer Scotland, Glasgow, United Kingdom, 3Brain Health Scotland, Edinburgh, United Kingdom

It is known that the diseases, which lead to dementia, start (at least) in midlife. The onset of disease is driven by many risk factors that are both fixed (family history and genetics) and modifiable (e.g. lifestyle) as well as interacting with other medical and mental health comorbidities (e.g. diabetes and depression). The application of the research evidence base into clinical practice and public health campaigns though has been piecemeal within most settings and lacking leadership and coordination. To address this the Scottish Government in April 2020 launched Brain Health Scotland within their Programme for Government. Brain Health Scotland coordinates existing national activities and will develop new specific ones in three integrated domains: [1] Health Informatics, [2] Research and [3] Clinical Practice and Public Health.

Brain Health Scotland will achieve its core objective of reducing incident dementia through two main avenues. Firstly, the establishment of Brain Health Services that will provide individuals with risk profiling, early disease detection and implementation of Personalised Prevention Plans. Secondly a series of public health initiatives will be undertaken across the life course focussed on developing and maintaining brain health. These will involve education from school years onwards, lifestyle messaging and management of comorbidities with various targets for these messages and stakeholders in delivering them. Brain Health Scotland will produce a Brain Health Strategy for Scotland as well as a Scottish Brain Health and Dementia Research Strategy.

Brain Health Scotland builds on and has continued to develop the Scottish Dementia Informatics Partnership (which is overseeing the development and roll out of the Scottish Brain Health Register), the Scottish Dementia Research Consortium and is actively putting in place the Scottish Early Alzheimer’s Disease Detection (SEADD) Programme. These elements and summary of their achievements will be presented in the context of the broader Brain Health Scotland organisation.

QOP5.7. The Scottish Brain Health Register

KILLIN Lewis1, RITCHIE Craig2, GREGORY Sarah1, DOULL Laura1, PENNINGTON Catherine3

1Edinburgh Dementia Prevention, Edinburgh, United Kingdom, 2Brain Health Scotland, Edinburgh, United Kingdom, 3NHS Lothian, Edinburgh, United Kingdom

The Scottish Brain Health Register (SBHR) is a database of people living with, or at risk from, dementia in Scotland. It serves two purposes: to connect people to research opportunities, and as a regularly updated, well-characterised population cohort. 

SBHR is open to all members of the public interested in research, but is designed specifically for use in the clinical care pathway. Registration to SBHR entails consent to access an individual’s demographic and medical data, to ensure that researchers can contact that individual about research opportunities and with sufficient medical prescreening to ensure they are offered appropriate opportunities. Effective prescreening facilitates recruitment into studies and the rate of discovery.

Critically, SBHR also asks that an individual’s data be uploaded to its servers and made available for secondary analysis by members of the research community, including partners from industry, academia and the third sector.

If an individual participates in a research study, a subset of the data generated about them also enters their SBHR profile. The studies that recruit from – and by implication generate data for – SBHR are subject to review from local Portfolio Committees, who ensure that research opportunities are balanced and proportionate its registrants, and that data sharing is raised with investigators. 

The SBHR+ programme applies this data sharing principle within Brain Health Clinics, and aims to bridge the current gap in practice between clinical care and research participation. Specifically, by inviting a Memory Clinic population to take part in SBHR+ research protocols that are not available under standard healthcare practice (e.g., APOE analysis, CSF sampling, digital neuropsychology), clinicians can generate and have access to more detailed data that may impact their patient’s standard of care, formulate personalised prevention plans and build a national risk algorithm. SBHR+ data will ultimately then have significant use for disease modelling purposes.

QOP5.8. From plan to impact III, progress towards the WHO Global action plan on dementia

LYNCH Chris

Alzheimer's Disease International, London, United Kingdom

Background: At the World Health Assembly 2017, the World Health Organization launched the Global action plan on the public health response to dementia 2017-2025. Alzheimer's Disease International (ADI) monitors progress towards the action areas / targets of the Global plan and in June 2020 will publish "From plan to impact III", to coincide with the first official reporting cycle for the plan.

Method: ADI continuously gathers information and updates relating to the 7 action areas of the Global action plan through our network of over 100 member associations and federations globally, plus our contacts and partners in research, science, health and care, people living with dementia and carers. A specific analysis of progress towards the key goal of developing national dementia plans or strategies is a focal point of the research. 

Result: Despite positive progress in 2019 with the introduction of dementia plans in Canada and Spain, and with up to 30 plans reportedly in development, there are still only 35 national plans in existence. This puts immense pressure on meeting the key goal in the Global action plan, which targets 75% (146) of Member States to have developed a plan by 2025. This equates to the need for over 26 new plans every year up until 2025.

Conclusion: Progress is being made across all 7 action areas of the Global action plan on dementia and updates are scheduled to the Global Dementia Observatory (GDO), however ADI, working with WHO and our partners, will continue to focus attention on governments across the world to take action, to develop robust and well funded national plans and to monitor their progress.

QOP5.9. Family carers' preferences for psychosocial supports: informing policy using nominal group technique

TEAHAN Áine1, CARNEY Patricia2, CAHILL Suzanne3, O'SHEA Eamon1

1Centre for Economic and Social Research on Dementia, NUI Galway, Galway, Ireland, 2Department of Public Health, Health Service Executive, Galway, Ireland, 3Dementia Services Information and Development Centre, St. James Hospital, Dublin, Ireland

Introduction: Family carers of people with dementia report significant personal and economic challenges. Despite family carers being crucial to the sustainability of long-term care systems for people with dementia, there is limited research on their preferences for psychosocial supports and services. This research aimed to identify challenges experienced by family carers and directly ascertain their preferences for psychosocial supports and services in addressing those challenges.

Method: Three modified Nominal Group Technique (NGT) workshops were conducted with 17 family carers of people with dementia in Ireland. To reflect the complexity of family caring, the NGT workshops were conducted in two stages, focusing separately on personal level and wider social domains. Following in-depth group discussions, family carers identified challenges associated with caring and individually ranked preferences for novel and pre-existing psychosocial services and supports in both domains. Data analysis included qualitative content analysis and summative ranking scoring.

Findings: Family carers’ preferences for personal level supports and services included day-care, long-break respite, short-break respite, family carer support groups and social activities. Preferences for wider social supports and services included a non-means-tested monetary carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Qualitative content analysis identified personal level challenges as: needing a break; isolation; and relationship changes. Wider social challenges included: finances; rights and entitlements; and stigma and awareness. 

Conclusion: Given that any long-term care system for people with dementia will rely heavily on family carers, it is important that their preferences inform policy decisions. To reflect the diverse challenges posed by family caring, psychosocial approaches should include both personal and wider social supports, particularly enhanced day-care provision and non-means tested carer’s allowance. Increased investment in these supports would not only maintain family carers’ contributions to community care in dementia, but also facilitate social inclusion, social connectedness and economic sustainability.

QOP5.10. Information sources for informal caregivers in rural vs. urban areas: the Bavarian Dementia Survey (BayDem)

HOLM Kristina1, GRAESSEL Elmar2, KOLOMINSKY-RABAS Peter1

1Interdisciplinary Center for Health Technology Assessment (HTA) and Public Health (IZPH), Friedrich-Alexander University Erlangen-Nürnberg (FAU); Project consortium ‘Digital Dementia Registry Bavaria – digiDEM Bayern‘, Erlangen, Germany, 2Center for Health Services Research in Medicine, Department of Psychiatry and Psychotherapy, University Hospital Erlangen, Friedrich-Alexander University Erlangen-Nürnberg (FAU); Project consortium ‘Digital Dementia Registry Bavaria – digiDEM Bayern‘, Erlangen, Germany

Background: Previously, little attention has been paid to informal caregivers of people with dementia (IC) regarding the ability to identify and understand dementia-related information. Generally, the internet represents an important source of information for IC. To date, little consideration has been given to differences in the evaluation of several information sources among IC from rural and urban regions in Bavaria.

Method: BayDem is a multi-center, longitudinal study that was conducted at three different sites in Bavaria, Germany. Participants were people with dementia (according to ICD-10) and their IC. Information sources were rated by the IC using Likert Scales with the values unimportant (1) to very important (5). The assignment of the IC's residence to two rural and two urban regions was determined by the classification of the Federal Institute for Research on Building, Urban Affairs and Spatial Development in Germany. Data was analysed using Kruskal-Wallis tests for independent samples.

Results: In total 332 IC could be evaluated. There were significant differences in the importance of the information sources "television/radio" (Chi²(3) = 18.39, p < .000), "family, friends and colleagues" (Chi²(3) = 7.83, p < .050) and "pharmacy" (Chi²(3) = 15.75, p < .001) between the IC from the four regions.

Conclusion: The information sources "television/radio", "family, friends & colleagues" and "pharmacy" have a different relevance for IC from rural and urban regions. Dementia-related information should therefore be adopted to rural or urban setting. Online information sources can expand the IC‘s information spectrum.

Funding: BayDem was funded by the Bavarian Ministry of Health and Care (funding code: G42b-G8092.9-2014/10-7).

QOP5.11. How do support providers assess the needs of informal caregivers of persons with dementia?

PASQUIER Noémie, PIHET Sandrine

HES-SO: University of Applied Sciences and Arts Western Switzerland, School of Health Sciences, Fribourg, Fribourg, Switzerland

Informal caregivers who support a person with dementia (IC-D) play an essential role in the health care system. Their intensive contribution puts them at high risk of negative consequences on their physical and psychological health but despite their significant unmet needs IC-D belatedly ask for support. Identifying IC-D needs is essential for a timely solicitation or referral to relevant support services and for the prevention of exhaustion. Research about how diverse support providers assess IC-D needs is scarce. Our project aimed to describe these practices in one region of Switzerland, from the perspectives of support providers and IC-D.

A first survey was completed by 63 professionals and volunteers involved in IC-D support with 10 questions about how they assess IC-D needs. A second survey was answered by 34 IC-D with eight questions about how support providers assess their needs.

Providers indicated dedicating on average 45 minutes (range: 5-120 minutes) to assess the needs of IC-D. Only 48% of providers reported being trained for needs assessment and only 30% used a systematic procedure, with 41% describing heterogeneous assessment procedures in their department. Among IC-D, 77% considered that they could easily find the support they needed, although many commented this required much effort. Most IC-D perceived interest for their needs among the majority of support providers, particularly those specialized in dementia. Some IC-D described procedures lacking individualization or support providers focusing too exclusively on the care receiver.

In a context of shortage in qualified health care personnel, increasing numbers of people with dementia, and growing pressures on informal caregivers, a more efficient assessment of IC-D needs is desirable. An online screening questionnaire could be completed autonomously by a large proportion of IC-D and could provide a systematic profile of current unmet needs relevant for IC-D and diverse support providers.

QOP5.12. An online tool to assess the needs of informal dementia caregivers and refer them to the relevant support services

PIHET Sandrine, PASQUIER Noémie

HES-SO: University of Applied Sciences and Arts Western Switzerland, School of Health Sciences, Fribourg, Fribourg, Switzerland

Despite their significant unmet needs, informal caregivers of persons with dementia (IC-D) often call late upon support, waiting to be exhausted or in a crisis situation. The reasons for this include IC-D difficulties in identifying their needs and finding the adequate support service. The project aims to develop an online platform to help them identify and prioritize their needs as well as find adequate support within the local network, in one region of Switzerland.

In this project, we first developed 46 items covering the diversity of IC-D needs based on eight questionnaires with good content validity identified within a systematic psychometric review. Then we assessed the relevance and exhaustiveness of the developed items from the perspective of 42 support providers and 28 IC-D using a survey, as well as clarity of items for IC-D. In addition, we identified optimal support services for each assessed need from the perspective of the 42 surveyed providers.

Support providers and IC-D globally rated the developed items as relevant and exhaustive. IC-D found all items easy to understand. Some providers and IC-D commented that there were too many items with some highly similar ones. For each assessed need, the support services described as optimal were limited in number (on average 5, range: 2-10) and often involved different providers with different reasons for considering that their service optimally met that need. As expected, optimal support services differed for different needs.

The results highlight the diversity of IC-D needs and available support services, as well as the complexity of matching them. Our innovative online platform based on scientific evidence and feedback from potential users provides a systematic, efficient and relevant assessment of IC-D needs. It also gives precise information on how specific support services meet specific needs to help IC-D make informed choice and support their empowerment.

 

 
 

Last Updated: Tuesday 30 June 2020

 

 
  • Acknowledgements

    The 30th AE Conference received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe gratefully acknowledges the support of all conference sponsors.
  • European Union
  • Roche
 
 

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