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PO5. Policy

Detailed programme and abstracts

PO5.1. Understanding of dementia in Poland - lexical semantic analysis of otępienie (English 'dementia') in Polish language

MAĆKOWIAK Maria1, LIBURA Agnieszka2, SZCZEŚNIAK Dorota1, CIUŁKOWICZ Marta1, DUDA-SIKUŁA Marta1, RYMASZEWSKA Joanna1

1Dept. of Psychiatry, Wroclaw Medical University , Wrocław, Poland, 2Institute of Polish Philology, University of Wroclaw, Wrocław, Poland

Introduction: Language is an impactful transmitter of socially shared beliefs and perceptions and can perpetuate patterns of thinking and behaving among people. This power of language has been frequently signalized by dementia activists who perceive the dementia discourse as highly stigmatizing. Basic issue is the term dementia itself and its understanding among users of a given language. 

In Polish dementia is otępienie which could be translated as torpor, numbness, stupidity, etc. These common meanings give rudiments for inferring the role which semantics might play in the process of stigmatization of the condition among Polish speakers. Cognitive analyses of understanding otępienie by Polish speakers who are involved in creating dementia discourse may provide a background for anti-stigma initiatives. 

Aim: Reconstruction and comparisons of the cognitive frames of otępienie in Polish from the three-fold perspective of care partners of people living with dementia, health care providers and lay-public. 

Method: Based on the theory of the Frame Semantics of Charles Fillmore reconstruction 
 of the cognitive frames of otępienie in Polish language was performed. Qualitative and quantitative methods were applied to analyse the data form National Corpus of Poland and linguistic surveys which were conducted among care partners of people living with dementia, health care providers and lay-public.

Results & conclusions: Cognitive frames of otępienie reconstructed within the current study provide an insight into understanding of dementia among Polish speakers with a distinction into three social groups with different experiences with the condition. The results form the basis for medical communication, e.g. for addressing tailored social messages within behaviour change campaigns. Moreover, they create a foundation for further research on determining the relationship between semantics of dementia and the stigma present in a given society.

PO5.2. Informed Consent and Influence Factors of Acupuncture Treatment for Patients with Dementia

LIN CHIALIN1, LIN SHUNKU1, HUANG HUAITI2

1Department of Chinese Medicine, Taipei City Hospital, Ren-Ai Branch. Department of Health, Taipei City Government, Taipei, Taiwan, Province Of China, 2Taipei, Taiwan, Province Of China

Background: The main symptom of dementia patients is the cognitive decline, so patients can not perform informed consent for medical behavior. Acupuncture treatment can reduce cognitive deterioration and mental behavior symptoms in dementia patients, but the procedure is accompanied by pain. How to let patients correctly understand the side effects of acupuncture and implement valid informed consent is a difficult problem for clinicians.

Method: This study is a Retrospective Cross-Sectional Study. We collected medical records and consents from dementia patients from Taipei City United Hospital from January 2016 to December 2017. The purpose of the study was to analyze the informed consent and possible impact factors of acupuncture in patients with dementia. Research variables included gender, age, education, marital status, Mini-Mental State Examination (MMSE), Clinical Dementia Rating (CDR), Activities of daily living (ADL), and Neuropsychiatric Inventory Questionnaire (NPI). We tested whether there were significant differences between variables in Logistic regression.

Result: A total of 287 patients with dementia were included in the study. We found that patients with the lowest and highest disease severity had a higher rate of acupuncture. Besides, NPI is a good predictor of acupuncture treatment. Patients with higher NPI scores have a lower tendency to receive acupuncture treatment. We also found that as the total score of MMSE or ADL decreased, the proportion of family members who agreed to treat patients also increased significantly.

Conclusion: Patients with different degrees of dementia have significant differences in the degree of acceptance and informed consent of acupuncture. Single-form acupuncture consent does not apply to all types of dementia. We suggest that the decision-sharing making method should be introduced. It can help medical colleagues understand the needs of patients and make more reasonable and multi-acceptable medical decisions.

PO5.3. Improving the quality of life of people with dementia living in nursing homes: the accreditation process of care home providers in Forlì

BOSCHI Federica1, MARIANI Elena1, NUGHINI Silvia1, ZACCHERONI Cristina2, BONI Stefano3, BENATI Giuseppe1

1Memory Clinic, Morgagni-Pierantoni Hospital, AUSL Romagna, Forlì, Italy, 2Comune di Forlì, Forlì, Italy, 3Distretto di Forlì, AUSL Romagna, Forlì, Italy

Background: Emilia-Romagna Region is involved in the accreditation process of healthcare structures and in the identification of the necessary requirements to evaluate and accredit facilities that offer healthcare services to population (Regional Resolution no. 514/2009). One of these requirements concerns the development of a dementia-care programme to improve the quality of life of people with dementia living in nursing homes.

Methods: In order to identify the most important dementia-care issues to be discussed and improved, a brainstorming session among the representatives from the main elderly care services of Forlì and its surroundings was conducted. Specifically, representatives of the memory clinic, the nursing and social care areas of the Forlì Hospital as well as of eight nursing home care providers and of the Municipality were involved. Four topics arose and participants were consequently divided into four groups: environment, personalized and continuation of care, palliative care, professionals’ training. Within each group, participants were asked to discuss how to improve the issue identified, considering the care procedures already in place and the available documentation.

Results: Each group developed specific strategies to be implemented within the involved nursing homes. The ‘environment’ group developed a list of practical indications on how to make the environment more suitable for residents with dementia. The ‘personalized and continuation of care’ group developed guidelines to improve the communication of information between the NHS services and nursing homes as well as a chart to be used when the resident is in need to be referred to an NHS specialist.  The ‘palliative care’ group described recommendations on end-of-life care in dementia. The ‘training’ group organized two specific trainings in dementia care for professionals.

Discussion: The results were presented in two public conferences. Another meeting will be organized to analyse the implementation process of the identified strategies in the involved nursing homes.

PO5.4. Withdrawn

PO5.5. Involving Indonesian Students and Association in The Netherlands.

UTOMO Amalia Fonk1, MARINI Tania1, GALUH Sekar2, KHARISMAYEKTI Manik3

1Alzheimer Indonesia Nederland, Groningen, Netherlands, 2Stichting Alzheimer Indonesia Nederland, Groningen, Netherlands, 3Stichting Alzheimer Indonesia Nederland, Den Haag, Netherlands

Background: In 2019, according to Nuffic Neso Indonesia, there were 2,500 Indonesian students in the Netherlands who were following bachelor, master and PhD programs from various disciplines. These numbers have been increasing every year. Most students return back to Indonesia after finishing their study bringing an advanced knowledge and practice for their benefits. Young professionals can promote new perspective for social change and knowledge transfer. By having more experienced young resources, it is expected that awareness of dementia is increased as well among them to end the negative stigma in Indonesia.

Objective: To empower Indonesian students in The Netherlands and enable exchange knowledge to promote the public awareness of dementia. 

Activities: Collaborations between the Foundation and Indonesian students occurred through the Indonesian Student Association activities, the Foundation events and programs, or through Individual involvement. Collaboration on a number of students’ events to encourage youth awareness, risk reductions and team work

Student Association activities: Sport, Social. Culture and Religious events.

Foundation events: Social, Culture and Education.

Key Messages and Activities in each events covers: Education of 10 signs of dementia, Poco-Poco Risk Reduction Dance, Brain Gym and Fundraising.

Individual involvement: participation as a volunteer or internship, maintenance of social media, blog writing, participation in webinar sessions and fundraising.

Result: • The activities of the Foundation and Dementia Awareness topics become more popular among the youth.

• Students develop an experience in teamwork through a recognizable foundation that adds value during their study period in The Netherlands.

• Students have the opportunity to get in contact with the Alzheimer Indonesia Chapter in their hometown in Indonesia for future collaboration.

PO5.6. First steps to Dementia Friendly Community in Formigine: measure of community attitude towards people living with dementia

MANNI Barbara1, FABBO Andrea1, VENTURELLI Emanuela2, ROVATTI Tonino2, GARISELLI Daniela3, RONCHETTI Federica4, MANICARDI Francesca1

1Modena Health Authority and Services, Modena, Italy, 2Alzheimer Association ASSsDe, Sassuolo, Italy, 3Municipality, Sassuolo, Italy, 4Sassuolo Health Authority and Service, Sassuolo, Italy

The number of people living with dementia (pwd) is increasing as a result of population aging. Cognitive impairment and neurological changes result in disability. World Health Organization promotes social inclusion’s initiatives for pwd. The World Alzheimer report 2019 urges community to fight against the stigma about this condition. Communities where pwd are able to remain socially included are known as dementia-friendly communities (DFC). In Italy Alzheimer Italia Association encouraged 24 CFD, Formigine was the first DFC in Emilia Romagna Region. A promoting group the involved Alzheimer Association (ASSsDe), Municipality and Health Service has gathered at the end of 2019. To understand the local impact of marginalisation and inequality on community participation for pwd , a social survey in a Facebook page of Formigine explored  attitude or stigma toward pwd. 62 questionnaires were collected. People expressed availability to help pwd and share community spaces with them but they complained lack of knowledge about disease, about what pwd is able to do and how to approach to them. Exploratory questionnaire was given to 42 pwd and 14 caregiver to know their needs and point of view. Half of pwd showed lack of insight about cognitive deficits. They referred to be globally satisfied about their life even if they complained to be bored most of time, to feel teased or uncomfortable in community. Most of them have abandoned more than 3 activities or hobbies. On the other hand Caregivers feel unable to satisfy pwd needs and most of them think that after diagnosis, community offers less opportunities to social engagement.Two focus groups were organized. In the first group with caregivers barriers and opportunities in the community were analyzed. In the second focus group , people living with mild-moderate dementia  were involved to expose difficulties  in daily living in the community.

PO5.7. The responses of pasar indonesia raya visitors after experiencing dementia virtual reality in the Netherlands

GALUH Sekar1, KHARISMAYEKTI Manik2, SETIADI Tania1

1Stichting Alzheimer Indonesia Nederland, Groningen, Netherlands, 2Stichting Alzheimer Indonesia Nederland, Zoetermeer, Netherlands

Background: Stichting Alzheimer Indonesia Nederland (AlziNed) participated in the biggest annual event of Pasar Indonesia Raya (Pandora), which was organized by the Embassy of the Republic of Indonesia in Rijswijk, The Netherlands on September 13th - 15th, 2019 as a celebration of the 74th Indonesian Independence Day. To broadcast information about dementia among visitors across the Netherlands, AlziNed provided some information tools and activities, including brochures, flyers, and books. However, a new tool is needed to stimulate dementia experience, which may improve people’s awareness to reduce the stigma of dementia. Virtual Reality (VR) ‘A Walk Through Dementia’ tool that is developed by Alzheimer’s Research UK was used as a new and unique instrument to deliver an insight into life with dementia in an interesting manner. It has successfully captivated visitors’ attention to visit, have experience with the VR, share their opinions, and subsequently receive information about dementia.

Objective: To evaluate Pandora visitors’ perspectives and awareness about people with dementia after experiencing VR instruments.

Method: A VR tool ‘A Walk Through Dementia’ that is developed by Alzheimer’s Research UK was used. Pandora visitors who had the opportunity to experience the activity of people with dementia through VR, were asked to write free-text comments.

Result: There were 22 free-text responses analyzed. All responses illustrated visitor’s feelings and emotions after experiencing VR. The opportunity to experience the activity as people with dementia increased the knowledge and awareness of the visitors towards dementia. Moreover, some comments also described a positive attitude to support people living with dementia.

Conclusion: A VR is an interesting instrument to promote emotions that may encourage public awareness of dementia. 

PO5.8. The program, knowledge, awareness and attitude project: Stichting Alzheimer Indonesia Nederland’s evaluation

SETIADI Tania1, KHARISMAYEKTI Manik2, GALUH Sekar1

1Stichting Alzheimer Indonesia Nederland, Groningen, Netherlands, 2Stichting Alzheimer Indonesia Nederland, Zoetermeer, Netherlands

Background: Stichting Alzheimer Indonesia Nederland (AlziNed) is a foundation based in Groningen that aims to improve the quality of life of the elderly, people with dementia and caregivers amongst Indonesian or those with Indonesian background who reside in The Netherlands. As a part of the Alzheimer’s Disease International’s three-year Twinning Program (a collaboration between Alzheimer Indonesia and Alzheimer Netherlands) from 2017 to 2019, a number of activities have been organized by AlziNed across cities and communities in The Netherlands, such as awareness campaign, seminar, fund raising, and cultural activities. However, an evaluation is needed to figure out the best manner to achieve the goals of the organization and to improve future activities planning.

Objectives: The Program, Knowledge, Awareness and Attitude (PROKAA) project aims to evaluate and measure the impact of the Stichting Alzheimer Nederland programs between 2017-2019.

Method: A questionnaire was developed to collect the information from the respondents. The respondents were those who are listed at AlziNed database as volunteers, dementia friends, or participants in AlziNed activities. The questionnaire was delivered in two languages (i.e. Bahasa Indonesia and Dutch) to allow the respondents to choose the survey language. It comprised of close- and open-ended questions and was divided into three main sections:

  • Demographic data (i.e. age, gender, education, place of origin in Indonesia, residency status) to describe the respondents' characteristic.
  • Programs. This section is intended to evaluate the tools and activities that have been conducted by AlziNed within the three-year period.
  • Impact. The last section is intended to assess the knowledge, awareness and attitude of the respondents towards dementia after participating in AlziNed activities.

The questionnaire was planned to be distributed both online and offline. However, due to Covid-19 pandemic, the latter option has been postponed. The data collection and analysis are expected to be completed by summer 2020. 

PO5.9. Support measures for informal caregivers of people with dementia

AGUIAR Nélida1, CACHUXO Sara2, ALVES Silvia3, LAGARTINHO Helena4, CATAPIRRA Maria5, GONÇALVES Liliana6, GONÇALVES Jorge5, AGUIAR Idalina7

1ANCI - Associação Nacional de Cuidadores Informais, Funchal, Portugal, 2ANCI - Associação Nacional de Cuidadores Informais, Porto Moniz, Portugal, 3ANCI - Associação Nacional de Cuidadores Informais, Lisboa, Portugal, 4ANCI - Associação Nacional de Cuidadores Informais, Sintra, Portugal, 5ANCI - Associação Nacional de Cuidadores Informais, Barreiro, Portugal, 6ANCI - Associação Nacional de Cuidadores Informais, Portalegre, Portugal, 7EWGPWD, Funchal, Portugal

Exceptional measures were adopted by the Government of the Republic, during COVID-19 to protect informal caregivers of PWD, given the measures to suspend the activity of social facilities, such as day centers, as determined by the Health Authority or by the Government, without alternative social response.

ANCI work with the Government, to support these people and if the family caregivers would have any protection in their work activity. In a normal context, the accompaniment of these people was essential, in the state of emergency, this need is further confirmed.

During the state of emergency, and the situation of isolation, some measures taken by the Government of the Republic such as the justification of absences (Decree-Law nº 10-K / 2020 of 26 March), possibility of scheduling vacation days, and teleworking, brought some flexibility.

The Ministry of Labor, Solidarity and Social Security also announced that it will ensure, with retroactive effect, the support, from the first day of this April, to caregivers who, given the current circumstances, see their processes suspended requesting the Status of Informal Caregiver, due to the interruption of activities, such as medical boards, aimed at assessing disabilities. This is also a way of recognizing that projects aimed at IC, and which are currently frozen, are a priority for the State.

At the regional level, following what was adopted by the Government of the Republic, with the necessary natural articulation between executives, the interest in being a pioneer in measures aimed at informal caregivers was due to a decree with gaps in execution, and although the RAM is advancing in the process of recognizing the status of informal caregiver, in relation to the national context, this was what led to the safeguarding of these people who have a central social role, before the Government of the Republic so determined.

PO5.10. Dementia action plan: focusing on prevention and families

EGERVARI Agnes

Social Cluster Association, Budapest, Hungary

Dementia Action Plan is a national level program that has been developed last year  in Hungary. Its key words are: prevention, relationships and communication - not only inside  the  care system, but also with other different professionals, with the whole society.

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

INDA© program developed by the Social Cluster Association improved relationships and communication between different professionals, families, and policymakers.

Method: The interprofessional approach is the guiding principle of the Action Plan for more effective cooperation between Long-Term Care (LTC) facilities and health care system.

Prevention: Three Generations for Health Program: also contributes to the changing general practitioners’ attitudes towards person based dementia care. The main result of the program is the diagnostic of thousands of people over 65 years old.

Knowledge about dementia should also be a component part of continued further education in the medical profession.

To concentrate on support of families; the maintains the best QofL.Training for informal careers aims  to share practical knowledge about changing roles in the family; legal questions, etc.

Awareness raising campaigns and support groups for caring families the dementia advisor is a  new professional  who connects a PwD, a caring family and the health/social care system. Having relevant knowledge about dementia, he/she is also able to navigate in the care system. This concept’s goal is to optimize the level and timing of the support.

The attitude towards dementia is changed in Hungary – Dementia Action Plan serve a useful framework to improve the quality of life for people living with dementia.

PO5.11. Digital services for dementia from the perspective of service providers: digiDEM Bayern

REICHOLD Michael1, DIETZEL Nikolas2, KOLOMINSKY-RABAS Peter L.2, GRAESSEL Elmar3, PROKOSCH Hans-Ulrich1

1Medical Informatics, Friedrich-Alexander University Erlangen-Nürnberg (FAU); Project consortium ‘Digital Dementia Registry Bavaria – digiDEM Bayern‘, Erlangen, Germany, 2Interdisciplinary 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, 3Center 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: The increasing number of people with dementia and their caregivers will require a change in the provision of dementia-related services in the future. Digital technologies offer new ways of addressing this situation and provide a possible solution.

Research question: How do service providers assess the current landscape with classic (non-digital) and digital dementia-related services?

Method: The project "Digital Dementia Registry Bayern” (digiDEM Bayern) was launched in 2019 to improve the situation of people with dementia and their caregivers in Bavaria (one of the federal states of Germany) effectively and sustainably. As part of the project, an online survey was conducted among providers of dementia-related services in Bavaria over a two-month period (mid-May to mid-July 2019).

Results: The results of the survey have shown that the provision of non-digital services is currently consistently rated better than that of digital services. In the field of digital services, the category 'information' scored best (rated good/very good by 48.5%). The categories 'exchange' (18.6%) and 'training' (17.5%) follow by far. The categories 'Consultation' (10.3%) and 'Intervention' (9.2%) received the lowest scores.

Conclusion: There is great potential for improvement in almost all categories of digital offerings. In these times of increasing IT affinity among the target group, it is important to further expand the digital forms of offerings and thus overcome supply barriers and gaps. The digiDEM Bayern project with its digital service offers based on a digital platform and its digital registry will help to improve the situation of people with dementia and their caring relatives, especially in rural areas.

Funding: digiDEM Bayern is funded by the Bavarian Ministry of Health and Care as part of BAYERN DIGITAL II (funding code: G42d-G8300-2017/1606-83).

PO5.12. Full-time caregiving families

AGUIAR Nélida1, ALVES Silvia2

1ANCI - Associação Nacional de Cuidadores Informais, Funchal, Portugal, 2ANCI - Associação Nacional de Cuidadores Informais, Lisboa, Portugal

The National Association of Informal Caregivers (ANCI), reaffirms its concern with informal caregivers who had to leave work to accompany their ancestors or family with dementia, because of the closure of day centers or institutions, which leaves many families without income. We insist on the need for these people to have some kind of support, possibly equivalent to that of parents of children under 12, who stay at home to assist their children. Only absences are justified (but without monetary support), telework (which allows some flexibility) or the possibility of scheduling vacation days, without the need to agree with the employer (and in this case many have already exhausted their period), are the measures taken by the Government of the Republic. Since it is not possible to resort to another alternative social response, exceptional measures have to be created for those who have relatives with dependence confined at home, and who now join thousands of other existing Informal Careguivers, assuming a more present role in assisting their family members. Will they have any protection in their work activity? How are support for these people who are now at home safeguarded? Whether they are young onset or elderly, for whom they have a responsibility to ensure care, due to the fact that they are in charge, due to the closure of social facilities such as day centers, in this normal context this type of support would already be essential, and now she says whether this need even more, because this is a more vulnerable population. As a matter of social justice, ANCI has already requested clarification from the Government, for the non-inclusion of ICs, in the response measures to Covid-19, but so far nothing more has been done. Meanwhile we are helping people with dementia and they familys in diferent ways.

 

 
 

Last Updated: Tuesday 22 September 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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