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PO12. Connecting with minority groups

Detailed programme, abstracts and presentations

PO12.1. Children's view of dementia: A case study approach

FELC Zlata1-2-3-4, FELC BRINA2-3-4, STOPAR mojca2-3-4

1Western Styrian Region for the Help at Dementia »Forget me not” Šentjur, Slovenia 2Association of the Western Styrian Region for the Help at Dementia »Forget me not” Šentjur, Šentjur, Slovenia, 3College of Nursing, Celje, Slovenia 4Unit of Family Law Division of the Civil De, Celje, Slovenia

Despite the fact that many children will encounter dementia among their grandparents and great-grandparents in particular, children's views of dementia are under-explored. They are mostly pupils in primary schools, and represent important minority group without accessible educational process in dementia knowledge.

A single case study of female second form pupil aged 7 years, and living in family with great-grandfather with moderately advanced Alzheimer's disease, was the subject of this research. After written consent was provided by girl's parents prior to interview, we represent brief interview findings and the results of her views of dementia. She believes that a) »dementia comes because one is old and his brain are sick«, b) »person with dementia must have opportunity to meet friends and to take part in singing«, and c) »in primary school we need dementia education«.

This research supports an introduction of dementia education to primary schools to enable the development of appropriate dementia awareness for pupils.

Keywords: dementia education, children's view, primary school

PO12.2. Minority language speakers with dementia in residential care: Tapping into expertise and fostering positive identities


University College Cork, Cork, Ireland

In many minority language contexts that are experiencing intergenerational language shift, community elders represent increasingly small groups of traditional and fluent language users whose knowledge of the richness of a minority or heritage language, as well as stories and traditions associated with the language constitutes a considerable body of expertise. Individuals with dementia are no exception to this tendency, whether in indigenous minority language communities, or in language communities that have arisen out of migration contexts and have been established for several generations.

In residential eldercare and dementia care, communication and the choice of language is often approached from a transactional perspective, and communication intervention and policies are geared towards the smooth running of institutional life, as well as towards mutual understanding of message content. However, there is an increasing body of research that points towards the vital role of a preferred language in the maintenance of positive identities for persons with dementia. One such identity is that of the expert, guardian of tradition and teacher of same to younger generations.

This presentation reports on three field studies in minority language contexts, in traditionally francophone Louisiana, USA, and traditionally Irish-speaking areas of Ireland, respectively, to illustrate: Having access to other speakers of a minority first language is important from an identity-confirming perspective. In addition, bilinguals with dementia can and will willingly adopt the role of teacher and expert if given the opportunity. This in turn opens up the opportunity for psychosocial intervention for a person's social and mental well-being by drawing out their expertise (which also draws on long-established, early-acquired, and in part automatized memories). In addition, positioning the person with dementia as the expert renegotiates power relations in residential care, and is achievable with minimal resources. 

PO12.3. Working with diaspora in the Netherlands to support overseas dementia efforts


MWC, Zeist, Netherlands

There are several groups in the Netherlands who are linked to overseas communities.

Stichting Wiesje (Wiesje Foundation) was created in 1999 by the famous actress Gerda Havertong who lives in the Netherlands, because her mother had dementia in Suriname and there was no care for her or understanding of the disease. A sister Foundation was created in Suriname and first steps were awareness activities and training of professionals. In 2005, a day-care centre in Paramaribo was started and in 2015 the first unit small scale residential care home started, that should host 32 people when fully finished. Main role for the foundation in the Netherlands is fundraising by seeking individual donations and an annual fundraising event. Main role for the foundation in Suriname is running the services.

An Alzheimer association was formed in 2017 with support from Alzheimer Nederland and focuses on awareness and education. This is supported by a Twinning grant from the Dutch government to Alzheimer Nederland.

The Henry Ostiana Foundation started in 2017 in honour of by the wife of Henry Ostiana who developed Alzheimer’s disease and lived on the island of St. Maarten but moved to the Netherlands because there was no good care. The aim is to raise awareness among the Caribbean population in the Netherlands and fundraise for support of the work of Alzheimer St. Maarten and other associations in the islands of the Caribbean that are part of the Kingdom of the Netherlands and ultimately make it possible to create specialised care homes for people with dementia.  

Alzheimer Indonesia and Alzheimer Netherlands have a Twinning program for 2017-2019 with the objective to support the growth of Alzheimer Indonesia and reach out to Indonesian communities in the Netherlands. It is supported by a grant of the Dutch government.

PO12.4. People of Turkish heritage and dementia and their utilization of healthcare services


1Deutsches Zentrum für Neurodegenerative Erkrankungen, Greifswald, Germany, 2Universität Greifswald, Greifswald, Germany

Background: The proportion of elderly people with migration background (PwM) is increasing. The proportion of elderly PwM with dementia (PwMD) might increase as well. In Germany approx. 208.000 people of Turkish heritage are older than 64 years, with approx. 8.900 having dementia. Dementia is underdiagnosed in the general population in Germany. This could be even more so in this population resulting in a large proportion of PwMD and family caregivers not being supported by the healthcare system. Even more so, it is known that utilization of healthcare services is low resulting in a lack of inclusion of this group in the healthcare landscape.

Research question: Barriers and facilitators of healthcare service utilization in PwMD and family caregivers are investigated and what can be done to reverse this circumstance.

Method: Eight semi-structured interviews with participants of Turkish heritage who were involved in the care of a PwMD. To analyse the data qualitative content analysis was used.

Results: The main care is usually done by one family member with the support of others. There is scarce knowledge on dementia and healthcare services prior to the care of a PwMD. Participants face similar challenges as people without migration background in taking care of a person with dementia. Healthcare services are used by the majority of the participants. Participants wish for information to be obtained more easily and that healthcare services would include the Turkish culture more.

Discussion: There is a willingness to use services but information about them should be easier obtainable and services should embrace the Turkish culture more. This would help to decrease hesitance and make people affected feel more understood and comfortable increasing utilization and satisfaction. Limitations are participants being already involved in the healthcare landscape and being proactive which may not be representative of the whole Turkish community.

PO12.5. Dementia in metaphors: towards shared understanding and decision-making in families of various cultural backgrounds


1Scientific Center for Quality of Healthcare, Radboud UMC, Nijmegen, Netherlands, 2Leiden University Centre for Linguistics, Leiden University, Leiden, Netherlands

Introduction: In the next decade, the number of people with dementia from migrant and ethnic minority (MEM) groups is expected to rise twice as fast as among native Dutch people. Persons with dementia and their families from MEM groups often receive suboptimal care. Differences in perceptions, values, and preferences and linguistic barriers may complicate communication between patients, their families and healthcare professionals.

This study is part of a larger project, aiming to better understand everyday thinking and talking about dementia in a culturally diverse group of persons with dementia and their informal caregivers and to improve person-centered, culturally sensitive dementia care. In the current study, we aim to identify metaphors with which persons with dementia and their families from different MEM groups understand and discuss dementia.

Methods: We will conduct twelve focus group interviews: two each with informal caregivers with a Chinese, Turkish, Moroccan, Surinamese, Dutch Antillean and native Dutch background. The interviews will be conducted in the native tongue of participants: Cantonese, Turkish, Berber, Sranan Tongo, Papiamentu, and Dutch, respectively. Additionally, we will interview two groups of healthcare professionals involved in dementia care.

In the interviews, we aim to elicit the everyday thinking and talking about dementia of persons with dementia and their families. The interview guide is based on two pilot studies on metaphors for dementia. The interviews will take place in Spring and Summer of 2019 in different locations in the Netherlands. The focus group interviews will be transcribed verbatim and subsequently analyzed using the Metaphor Identification Procedure (MIPVU).

Findings and conclusion: This study is ongoing. Preliminary results will be available in Summer 2019 and will be updated once they become available.

Take-home message: By using metaphor theory, we hope to contribute to bridging the gap in quality of care for persons with dementia from MEM groups.

PO12.7. Life through a lens:  Use of photovoice methodology by co-researchers with intellectual disability affected by dementia


University of Stirling, Stirling, United Kingdom

Photovoice is a participatory method of data collection and analysis combining photography with social action. It is a way in which under-represented individuals or group can identify and enhance the views of their community – a way of giving a voice to people who are seldom included in research.

This project was part of a larger study investigating non-drug interventions for people with intellectual disability and dementia. Co-researchers with an intellectual disability affected by dementia have been involved since the inception of the study as part of a team looking at the effects of non-pharmacological interventions with people who have dementia.

Two co-researchers with intellectual disability attended training in photovoice methodology and use of the camera, followed by participation in a series of practical photography exercises.  Each then engaged in participant observation to understand the impact of non-pharmacological interventions on peers with an intellectual disability and dementia. Consistent with photovoice methodology, photographs were then taken of images (not people) that visually represented their views about the interventions. This was followed by individual and group discussions with the wider research team to select preferred images and share perspectives of dementia among their peers. Themes and codes were identified from the images, both from individual co-researchers and across the body of their collective work.

Although challenges were identified in the study, photovoice methodology provided an opportunity for exploring perceptions of dementia among people with an intellectual disability. Co-researchers demonstrated that their peers with intellectual disability and dementia benefitted from non-pharmacological interventions. A sample of the photography will be displayed on the poster with the accompanying stories of, and behind, the images. This reflects perceptions of the effect of non-pharmacological interventions in dementia care and offers greater authority to co-researchers with intellectual disabilities who are affected by dementia.






Last Updated: Thursday 07 November 2019


  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche