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PO4. People

Detailed programme and abstracts

PO4.1. Home-care workers experiences of looking after people with dementia: a qualitative interview study

BACKHOUSE Tamara, RUSTON Annmarie

University of East Anglia, Norwich, United Kingdom

Background: Home-care workers are increasingly caring for clients with dementia. Workers are usually low paid, have limited dementia training, and are working on their own. Little is known about their experiences of providing day-to-day care to people with dementia.

Aim: To explore the understanding and experiences of home-care workers when providing care to people with dementia.

Methods: We conducted 17 semi-structured interviews with home care workers in one locality in the East of England. Interviews were audio-recorded and transcribed verbatim. Analysis was inductive and thematic.

Results: Two key themes were present in the data: ‘identifying and managing risk’ and ‘overcoming challenges in care by bringing the person along’. Home-care workers were aware of multiple potential risks to clients with dementia such as getting lost, fires or falling during the time between care calls. Risks to the home-care workers themselves included clients’ aggressive behaviours and working on their own. Home-care staff worked hard to manage these risks by drawing on their own experiences, their training and the wider team. Challenges in care included time constraints, clients’ dementia-related characteristics, refusals of care, and bearing responsibility. To bring the person along on the caring journey workers enacted a caring relationship, thought about their approach, and used distraction and different communication strategies.

Conclusion: Home care workers encountered multiple challenges when looking after people with dementia. Often they were on their own dealing with uncertain circumstances and carrying the responsibility for care decisions. Our findings showed that home-care workers had a good understanding of their role, and the risks and challenges they faced. They were resourceful, considerate, and used multiple approaches to cope and provide necessary care.

PO4.2. Prioritizing care and support characteristics for persons with dementia and informal caregivers to prolong community living

WAMMES Joost

Amsterdam University Medical Centres, Amsterdam, Netherlands

Background: Care and support packages tailored to the preferences of persons with dementia and informal caregivers to prolong living in the community and avoiding crises sitiation are lacking. Discrete choice experiments can be used to represent dyadic preferences. Using qualitative methods like focus groups to design discrete choice experiments is considered good practice however they are underreported and it is unclear if they are appropriate for this target population.

Objective: To report on developing the choice sets of a discrete choice experiment for persons with dementia and informal caregivers by prioritizing attributes for care and support and identifying attribute levels.

Design: Six focus groups were conducted with persons with dementia (n=22) and informal caregivers (n=20). Participants ranked seven attributes of in-home care and support options identified in a previous study. Rationale for the ranking were elicited in a discussion and attribute levels identified. Audio recordings were transcribed and analysed using thematic analysis.

Results: Persons with dementia favoured in-home care, help with daily activities, social activities, and emotional support while informal caregivers favoured social activities, information about dementia, emotional support and navigating the healthcare system. The attribute In-home adaptations and tools was ranked least important by persons with dementia and informal caregivers.

Conclusion: Persons with dementia were capable of ranking attributes and prioritized attributes differently than informal caregivers. The focus group design allowed for participants to express their opinions and identify attribute levels. Study results can be used for future discrete choice experiments quantifying care preferences of persons with dementia and informal caregivers.

PO4.3. Developing guidelines for involving people with dementia in policy, consultation and conference activities

KEOGH Fiona1, WORKING GROUP Irish Dementia2, WHELAN Clodagh2

1NUI Galway, Galway, Ireland, 2Alzheimer Society of Ireland, National, Ireland

There is an increasing desire to include people with dementia in work such as policy formulation and policy implementation and to have people with dementia make contributions to meetings and conference. However, there is a lack of guidance on how best to do this. Our three organisations (the Irish Dementia Working Group (IDWG), the Alzheimer Society of Ireland and the Centre for Economic and Social Research on Dementia) have worked together for several years in promoting the involvement of people with dementia in decision-making and we wanted to bring our experience together into a set of practical, detailed and clear guidance. 

Six members of the IDWG discussed the main points they wanted to be included in the guidelines and the messages they wanted to communicate. Four people who support people with dementia were also consulted on the barriers and facilitators for the involvement of people with dementia. We also consulted guidance documents prepared by the Dementia Engagement and Empowerment Project (DEEP).

The following underpinning principles were identified to guide the process of involving people with dementia: Give the person a voice; See the person; Emphasise the strengths and abilities of each person; Participation is a human right;  Be flexible; Respond to each person as an individual; Never judge a book by its cover!; and Safeguarding.

To guide practice, ten guidelines were developed: Interaction; Communication; Providing information; Venue; Travel; Consent; Support; Recognition and acknowledgement; Payment and expenses; and Different types of involvement.

The cover image for the document was designed by IDWG member Marguerite Keating. Marguerite used the forget-me-not flower and worker bees. The bees symbolise the members of the Irish Dementia Working Group. 

The guidelines are available for any group or organisation who want to work with the IDWG and are available online for anyone to read.

PO4.4. Creating enabling environments in a library and in the community – the project “The Dementia-friendly library Wiener Neustadt”

TATZER Verena1, PLUNGER Petra2, ULLMER Rebecca3, FELLINGER Ulrike1, REITINGER Elisabeth2, FELLINGER Ulrike1, HEIMERL Katharina2

1University of Applied Sciences Wiener Neustadt, Wiener Neustadt, Austria, 2University of Vienna, Vienna, Austria, 3Central Library, Wiener Neustadt, Austria

People with dementia and their caregivers may experience restrictions in social participation. There is little knowledge about how non-health organizations in a city can contribute to enhanced health literacy and foster social participation of people living with dementia and their carergivers. Public organizations need to provide good health information to support citizens and improve their health literacy when living with cognitive impairment. Libraries are spaces of education and learning and thus have an important function in a city. They offer possibilities to participate in public life but can also provide information about themes related to living with neurocognitive disorders and offer space for connection and collaboration. We aim to create a dementia-friendly library in collaboration with two other organizations in the community: the information service point of the city hall and a museum. All three organizations are important public institutions in the city. The aims of the project are to foster social participation of people with dementia and their caregivers as well as to contribute to de-stigmatization and enhance health-literacy in the public. Using a participatory health research design based on needs assessments with management and staff from all three organizations will ensure sustainability. All interventions are developed collaboratively in the steering group with the local self-help group Alzheimer Austria including the perspective of caregivers of people with dementia and an activist living with cognitive impairment as well as the management of all three organizations. We will present findings from the needs assessment including online focus groups with staff, telephone interviews with caregivers and discuss the impact of the Covid-19 pandemic on the needs assessment.

PO4.5. Well-being from a migration perspective of older persons with an Indonesian background in The Netherlands

KHARISMAYEKTI Manik1, CALJOUW Monique2

1Stichting Alzheimer Indonesia Nederland, Zoetermeer, Netherlands, 2Leiden University Medical Centre, Leiden, Netherlands

Background: The migration of people from Indonesia to The Netherlands occurred after World War II. The first and second generation of the Indonesian migrants were included to the total older population in the Netherlands. Their presence, with their influence of Asian culture creates challenges for the health care organizations in the Netherlands.

Objective: This study aims to explore the important aspects of well-being of older migrants with Indonesian background’s and their perspectives on ageing.

Method: This is a qualitative study with a semi-structured, in-depth interview among 11 older persons with an Indonesian background in the senior residential PINS, the Garantwoning and nursing home Waterhof between May and June 2019. A modified version of grounded theory approach that combines the inductive and abduction approaches was chosen to analyse the data.

Results: All participants were considered as the first generation of Indonesian migrants who left Indonesia between year 1945 and 1962. The participants mentioned that social contact, autonomy and functional health were important aspect of their well-being. Positive behaviour and social support which are covered within their cultural identities, such as: religious beliefs, meals and cultural activities, were needed to support them to stay longer in the community.

Conclusion: This study enriches the insight about older migrants with an Indonesian background, and generates a combination of scientific literature and qualitative research on cultural-sensitive approach in improving well-being of older migrants. Further research about well-being of other groups of older migrants with an Indonesian background and a nursing home which offers culturally specific care, are needed.

PO4.6. Together in care program

RUANOVA Lucía, RODRÍGUEZ Juan Carlos, HERMIDA Javier

Federación Alzhéimer Galicia, Santiago de compostela, Spain

Introduction:In Galicia approximately 70,000 people with dementia or cognitive impairment reside. In the field of care for people with dementia, demographic data are of great importance, firstly, because age is the main risk factor for the onset of dementia and secondly, because the characteristics of dementias involve resources of proximity and family involvement.

Overall objective: Improve the quality of life of dependent care families affected by Alzheimer's and other dementias.

Specific objectives: 1. Bring the concept of dementia closer, as well as the resources and services available to those areas where local resources are not adequate

2. Conduct training courses for non-professional caregivers of people with dependency affected by Alzheimer's and other dementias.

3. Conduct home care application workshops

Material and method: The “Together in care” program is being carried out from 2011 to 2019 (with the exception of 2014). In order for participation to continue, material adapted to the needs of each locality was elaborated and designed, taking into account characteristics such as: rural / urban, population, resources, local services… For all the actions, professionals specialized in Alzheimer's were used. and other dementias, closer to the place of formative action and aware of the reality of that environment.

Results

1. Number of training actions carried out: 113

2. Participants of the training actions: 1.930

3. Assessment of the training action: 4.7 out of 5

Conclusions: Thanks to the performance of this type of actions, groups of relatives of people with dementia were created, where later support and care services were developed for people with dementia and their families, carried out by the reference associations.

PO4.7. Withdrawn

PO4.8. Withdrawn

PO4.9. Carers' Academy

HOLLAND Susan1, TONER Alison2

1NHS Ayrshire and Arran, Kilmarnock, United Kingdom, 2University of the West of Scotland, Ayr, United Kingdom

Background: With a growing reliance on family members to support the holistic care needs of relatives living with dementia at all stages of the disease trajectory, the need for integrated programmes of family carer education which incorporate practical skills based learning has arguably never been greater. However, no such learning programmes were found within Scotland, prior to the establishment of the Carers’ Academy.

Aim: To provide a state-of-the-art practical skills-based learning and information programme to support and sustain family caring of a relative living with dementia.

Objectives: Facilitate opportunities for peer-to-peer learning.

Develop practical skills in the fundamentals of care and caring.

Enhance knowledge and understanding of the effects of dementia.

Participants/methods: The development of the Carers’ Academy has been informed by the knowledge and expertise of family carers of people with living with dementia. The programme is facilitated within university settings, by core teams of academics and health and social care practitioners. The programme is designed to be responsive to the needs of family carers of people with dementia living within Scotland, irrespective of the stage/type of their relative’s dementia condition.

Participants are able to access a 1-day bespoke learning programme and a follow-up monthly schedule of skills workshops. Learning is supported using the Care Empathia framework.

Key findings: Feedback indicates positive outcomes in relation to four key interlinking areas:

Planning for existing and future care needs

Easing feelings of guilt, isolation and loneliness

Increasing levels of understanding and empathy

Enhancing levels of confidence in care delivery

Conclusions: The Carer’s Academy programme can have immediate health and well-being benefits to people with dementia and their family carers and our health and social care systems. In the longer term it can help to sustain family caring of a relative living with dementia.

PO4.10. Adapting a psycho-educative intervention to facilitate the participation of informal caregivers

KIPFER Stephanie, PIHET Sandrine

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

Introduction: The intervention «Learning to feel better and help better» (LFBHB) aims at empowering informal caregivers of a person with dementia (IC-D) to cope with the daily stress of dementia caregiving. This group intervention of 15 weekly sessions of 2 hours each was originally developed and tested with a randomized controlled trial in Canada. It has then been pilot tested in Switzerland within a one group pre-post design, showing substantial improvements in burden, psychological distress and self-efficacy. However, mobilizing IC-D to participate was a challenge. Our project aimed at identifying barriers and facilitators for participation and at adapting the intervention accordingly.

Method: Data on the recruitment process were collected in semi-structured interviews with 15 recruiters from ten organizations, and submitted to an inductive content analysis to identify how the intervention could be adapted. The adaptation was conducted with a participatory approach, including former participants in the LFBHB intervention and representatives of four organizations working with IC-D.

Results: Core barriers for participation were time investment and organization burden due to the length of the intervention, as well as the limited time and knowledge of recruiters. To facilitate recruitment, a film was created to present the intervention, including stories of former participants. The duration of the intervention was reduced to 7 sessions of 3 hours each. Films were created to shorten and standardize information provision, and to facilitate knowledge transfer through role models (examples of former participants). The adapted LFBHB version has now been conducted with four groups of IC-D with similar effects on their quality of life compared to the original intervention.

Conclusion: Including in the adaptation process both IC-D and professionals supporting IC-D fostered a better fit of the intervention to the resources of IC-D, achieving similar effects despite reduced duration.

PO4.12. We are still togather - adapting the activities and services during pandemic

KRIVEC David, L. ZLOBEC Štefanija, GLIŠOVIĆ KRIVEC Špela, BASTARDA Maša, KEČKEŠ Polona, FRECE Patricija

Spominčica - Alzheimer Slovenija, Ljubljana, Slovenia

Persons with dementia and their carers experienced higher social exclusion increased during COVID-19 lockdown, they were left alone and in stress. Carers needed enhanced psychosocial support to maintain hope and endurance. Our association quickly adapted to the new situation, since personal activities were not possible, and strengthened telephone and online counselling. We have used different ways of informing our users: website, social networks, information materials, media articles and online interviews.

The most important and urgent task was to provide information to families on how to adapt. We have published daily advice, guided activities for structuring the day of persons with dementia and ideas for activities at home on our website and social media. We have produced and published a series of leaflets with dementia friendly design (For relatives who have person with dementia in a nursing home, For relatives who have person with dementia at home, How to talk to a person with dementia during epidemic, How to help a person with dementia who lives alone, Wandering and COVID-19…). The leaflets were also shared trough communication channels of nursing homes, local communities, Social chamber, Medical Chamber and Ministry for Social Affairs. If carers or persons with dementia needed advice, support, or resolving other dilemmas, a counseling person was available on the helpline every day, including weekends and also via e-mail. To overcome the barriers in access to treatment related information, we have involved experts from the field of Neurology, Psychiatry and Social care in the counselling helpline.

In April we started a survey between members: persons with dementia, their carers, workers in nursing homes and social workers. The aim was to get the insight in how people fell, miss, and what services they have lack because COVID-19. Based on the survey we will adapt our activities and address the policymakers.

PO4.13. Creating a user touchscreen tablets guide for and with people with dementia

CHARRAS Kevin1, PALMIER Cécilia2, MABIRE Jean-Bernard1

1Fondation Médéric Alzheimer, Paris, France, 2Institut de Psychologie - Université de Paris,  Boulogne-Billancourt, France

Introduction: Learning and independent use of touchscreen devices can reveal difficult for people with dementia. In a previous study aimed at raising awareness on the uses of touchscreen tablets, some participants expressed the need to have a guide to help them use the tablets alone. Therefore, we collectively decided to create a practical guide for and with people with dementia according to their needs and difficulties towards this technological tool.

Methods: Eight people with dementia attending a day care centre were involved in this project. A focus group was conducted on the need and the content, and appearance of the guide. Then, an observation was undertaken to objectively identify difficulties for using tablets. Data were coded and analyzed to identify themes according to linguistic and extralinguistic evidence contained in the transcription of interviews and observation reports. 

Results: The needs expressed by participants concerned common applications such as searching the Internet, watching videos, calling relatives using videoconference. Main difficulties observed for the use of tablets were: to turn on the tablet, to surf the Internet and to manage notifications. To alleviate these difficulties, the guide describes the gestures required to accomplish an action with picture and short sentences and explains the usefulness of the application.

Conclusion: The covid-19 outbreak has not allowed us yet to evaluate this first version with the participants involved in the project and with other people with dementia. This evaluation will ensure that the guide is dementia friendly and that it does not create additional difficulties. If such observations were made, the guide will be modified accordingly and then again validated by participants.

PO4.14. Encourage in life

TOEBES Teun

Teun en toeverlaat foundation, BEST, Netherlands

In the nursing home they call me ‘boy with the curls’. My name is Teun Toebes, I’m twenty and very passionated about the need for human contact to improve the dignity of people with dementia. I won several awards and I was recently invited to meet the Prime Minister of The Netherlands. He told me that he was very impressed by the way I show people how to create little moments of happiness for people with dementia.

Just over one year ago I started making video’s to show people the diversity of the contact with people with dementia. For example, I went, together with 87-years young Lenie to Vlissingen beach. After paddling we visited a friend from her childhood who she had not seen for a long time. I saw Lenie hugging her friend after many years and this touching moment gave me goose bumps and a tear came to my eyes during filming. I saw a vulnerable woman change into a proud mother and friend.

At that moment I realised that the contact was what it was all about. It is all about the contact, the connection, the trust. That will be my message. All my colleagues in healthcare value the human touch and the human contact very much. The video reached over 1,5 million views on Facebook.

If you gave me the opportunity, I would tell a story by images which touch the heart of the visitors. A message combined with the essence of healthcare, which in my opinion is, dignity.

We, as the environment of people with dementia, do have the responsibility to encourage them in life.

PO4.15. Narrative inquiry on case studies of crisis in dementia

BOSCO Alessandro, SCHNEIDER Justine, COLESTON-SHIELDS Donna Maria, ORRELL Martin

University of Nottingham, Nottingham, United Kingdom

Purpose: This study explored how people with dementia and their carers (i.e. the dyad) manage episodes of crisis.

Design: This was a case study approach. Participants were recruited from two teams managing crisis in dementia in the UK. We employed multiple qualitative interviews with people with dementia and their family carers over the course of one month. The analysis was first performed through thematic analysis. Inter-rater reliability was measured through Cohen’s kappa (K) and disagreements resolved through consensus. Data were further analysed through narrative inquiry to create a story line for our findings.

Findings: Five dyads were interviewed and a total of 16 interviews were conducted. Three dyads were husband-wife and two were daughter-mother relationships. The mean age was 67.4 for carers and 79.8 for people with dementia. Inter-rater reliability was ‘substantial’ (K = 0.73). In these cases, the carer assumed responsibility for managing the episode and was more likely to seek formal help if a pre-existing plan was in place. Otherwise, when a crisis arose, dyads preferred to avoid involving professionals.

Originality: The findings indicate that crisis teams are key for crisis support, and that early development of care plans is important to support the couple effectively.

Practical implications: Planning ahead for problems that may present is crucial from the earliest stage of diagnosis, and information around crisis teams should be provided at the time of diagnosis.

PO4.16. Improving the involvement of people with dementia in developing technology–based interventions: a narrative synthesis review and best practice guidelines

RAI Harleen

Institute of Mental Health, University of Nottingham, Nottingham, United Kingdom

Background: Technology can be helpful in supporting people with dementia in their daily lives. However, people with dementia are often not fully involved in the development process of new technology. This lack of involvement of people with dementia in developing technology–based interventions can lead to the implementation of faulty and less suitable technology.

Objective: This systematic review aims to evaluate current approaches, and create best practice guidelines for involving people with dementia in developing technology–based interventions.

Methods: A systematic search was undertaken in January 2019 in the following databases: EMBASE, PsycINFO, MEDLINE, CINAHL and Web of Science. The search strategy included search terms in three categories: “dementia”, “technology”, and “involvement in development”. Narrative synthesis wove the evidence together in a structured approach.

Results: Twenty-one studies met the inclusion criteria. Most studies involved people with dementia in a single phase such as development (n = 10), feasibility and piloting (n = 7), or evaluation (n = 1). Only 3 studies described involvement in multiple phases. Frequent methods for involvement included focus groups, interviews, observations, and user tests.

Conclusions: Most studies concluded it was both necessary and feasible to involve people with dementia, which can be optimised by having the right prerequisites in place, ensuring technology meets standards of reliability and stability, and by providing a positive research experience for participants. Best practice guidelines for the involvement of people with dementia in developing technology–based interventions are described

PO4.17. Prerequisites for mental wellbeing among people facing early onset dementia while still working: Finnish results from the MCI@Work project

ISSAKAINEN Mervi1, MÄKI-PETÄJÄ-LEINONEN Anna2, HEIMONEN Sirkkaliisa3, NEDLUND Ann-Charlotte4, ASTELL Arlene5, BOGER Jennifer6, SARI Rissanen1, NYGÅRD Louise7

1University of Eastern Finland, Kuopio, Finland, 2University of Eastern Finland, Joensuu, Finland, 3The Age Institute, Helsinki, Finland, 4Linköping University, Linköping, Sweden, 5KITE Research Institute, University Health Network; University of Toronto; University of Reading, UK, Toronto, Canada, 6University of Waterloo; Research Institute for Aging, Waterloo, Canada, 7Karolinska Institutet, Stockholm, Sweden

Early onset dementia may pose many challenges in maintaining one’s mental wellbeing, for instance, finding ways to manage possible difficulties at work or meaningful activities after retirement. In this multidisciplinary study, mental wellbeing of people living with early onset dementia is explored from the perspectives of social psychology and jurisprudence by focusing on their possibilities for agency, autonomy, and participation. The data consist of three focus group discussions with 12 participants, 8 women and 4 men, who have first-hand knowledge of the topic. In this presentation, we will discuss the prerequisites for mental wellbeing among people living with early onset dementia in the light of our results which illuminate the participants’ experiences of developing dementia while still employed, different kinds of resources that have helped them to cope with and manage changes in their lives, and the harmful impact of stigma. The results highlight the importance of workplace education, high-quality guidance and counselling as well as replacing harmful conceptions of and responses to dementia. This study is a part of a international multidisciplinary research project where we are scrutinising what happens when people develop dementia while still working (´Dementia or mild cognitive impairment: @ Work in Progress´) and the Finnish project ´Working Life and Memory Impairment – Mental Wellbeing, Legal Security and Occupational Capacity of People with Early Onset Dementia´ (WoLMI).

PO4.18. Staying Safe 'Going Out'- The experience of people affected by dementia

GAMBIER-ROSS Katie1, CLARKE Charlotte2, WILKINSON Heather1, WOOLNOUGH Penny3

1University of Edinburgh, Edinburgh, United Kingdom, 2Durham University, Durham, United Kingdom, 3Abertay Univerisity, Dundee, United Kingdom

Going outdoors is an important part of living well with dementia but people with dementia are at a high risk of going missing. High complex cases have a high mortality rate, place a high burden on police and result in immense stress for all involved. Often the concern about going missing leads to taking preventative measures, which can negatively affect quality of life. Little is known about how people with dementia navigate their environment or how they relocate themselves while lost. This research aims to explore the experience of ‘going out’ for people with dementia and their families and to explore how it affects their sense of purpose, agency and independence. Inclusive research methods such as faciliated discussion groups and walking interviews with people with dementia and their carers investigate how they engage with 'going out’ and prevent being missing. Findings of this research will inform police search strategies when people with dementia are reported missing. An insight into the experience of people with dementia and particular coping strategies used will enable police to better 'put themselves in the shoes of the person' when conducting a missing person search. A wider aim of this research is to support people with dementia to live safely and independently in their communities. 

PO4.19. The importance of international collaborations to address wayfinding and missing persons incidents

GAMBIER-ROSS Katie1, NEUBAUER Noelannah2, CLARKE Charlotte3, LIU Lili4, DAUM Christine2

1Ms, Edinburgh, United Kingdom, 2University of Alberta, Alberta, Canada, 3Durham University, Durham, United Kingdom, 4University of Waterloo, Waterloo, Canada

Going outdoors is an important part of living regardless of dementia diagnosis however, people with dementia are at a higher risk of getting lost, being unable to relocate oneselves and being reported missing. Lost persons with dementia may lose the cognitive capacity to remember to drink water, eat, or protect themselves from extreme weather. If not found within 24 hours, up to half of these individuals experience death or serious injury. Research that focuses on managing, preventing, and understanding the behaviours associated with lost or missing persons who have dementia is limited and few involve key stakeholders, such as police, persons with dementia, and carers. These gaps have led to the formation of an International Consortium on Dementia and Wayfinding. This consortium aims to address intersectoral and multi-disciplinary research and education, in partnership with stakeholders such as people living with dementia to affect policy. Since the consortium’s inception, the Consortium has: (1) held an inaugural meetings in Canada and Scotland, (2) completed a systematic review on the measured outcomes of wandering between universities in Canada and Australia, (3) mentored of undergraduate and graduate students in Canada and the Netherlands, and (4) began a study that evaluates the global perspective of dementia-related wandering among stakeholders. Future initiatives of the consortium include the development of a white paper on the current state of this field, and best practices for effective public awareness and knowledge mobilization on "wandering" and missing persons research.

PO4.20. The experience of caring for someone living with dementia: A mixed-methods study on caregiver strain, quality of life and perceived health

DI LORITO Claudio1, BOSCO Alessandro1, GODFREY Maureen2, DUNLOP Marianne2, LOCK Juliette1, POLLOCK Kristian1, HARWOOD Rowan1, VAN DER WARDT Veronika3

1University of Nottingham, Nottingham, United Kingdom, 2PPI member, Nottingham, United Kingdom, 3Philipps-Universität Marburg , Marburg, Germany

Introduction: There are currently 700,000families in the United Kingdom that care for someone with dementia and almost half the number provide care 24/7. Caring duties can heavily impact on the health and quality of life of carers. This study aimed to characterise carer strain, quality of life and perceived health and report on the experience of caring for someone with dementia.

Methods: A mixed-methods cross-sectional design with carer-participants from a large randomised controlled trial (PrAISED). Carer strain, quality of life and perceived health were assessed through quantitative measures. The experience of caring was explored through qualitative interviews. The data were analysed separately, and then triangulated to achieve a more comprehensive understanding of the phenomenon.

Results: Sixty carers took part in the quantitative assessments. Carer strain mean score was 4.34, where a score of 7 indicates high levels of stress; quality of life mean index was .84 out of 1; perceived health mean score was 82.2 out of 100. Stratification by carers’ characteristics evidenced statistically significant differences in most measures. Twenty carers were purposely sampled for the qualitative interviews. The participants discussed the impact that caring generates on physical health, social contacts, practical aspects of life and emotional wellbeing.

Discussion: The emotional, social and practical adjustments required by the progression of dementia increased carers’ strain. As a result, their physical and mental health, as well as their quality of life was often compromised. To combat loneliness and have some respite from the caring duties, the carers sought help from family, friends, neighbours and attended dementia-relevant community events. The study advocates for strengthened provision of individualised, carer-centred support strategies and programmes. In these times of pandemic, there is also an opportunity to fulfil the potential of remote support provision.

PO4.21. Value driven participation in co-creation of the virtual coach CAPTAIN to support independent living at home

ALMEIDA Rosa1, LOSADA Raquel1, BUENO AGUADO Yolanda1, CID-BARTOLOMÉ Teresa1, PETSANI Despoina2, KONSTANTINIDIS Evdokimos2, HOPPER Louise3, DIAZ-ORUETA Unai4, GABRIELLA IANES Patrizia5, KOUYOUMDJIAN Maria6, BAMIDIS Panagiotis7

1INTRAS Foundation, Valladolid, Spain, 2AUTH - Aristotle University Thessaloniki, Thesaloniki, Greece, 3Dublin City University, Dublin, Ireland, 4Maynooth University, Maynooth, Ireland, 5Province of Trento Healthcare Agency (APSS), Trento, Italy, 6AMEN - Archangelos Michael elderly people nursing home / rehabilitation centre for patients with alzheimer, Nicosia, Cyprus, 7AUTH - CAPTAIN Project Coordinator, Thesaloniki, Greece

Background: Population aging pose opportunities for service design centred in new interaction paradigms requiring adoption of more comprehensive design approaches. The European Project CAPTAIN (Coach Assistant via Projected and Tangible Interface, H2020_GA-769830) implements a hybrid participatory methodology for co-design and co-production of a home virtual eCoaching assistant, focusing on value co-creation and user experience.

Methods: CAPTAIN combines design thinking, participatory research, agile development and co-production cycles. Five local stakeholder’s groups (GR,IE,ES,IT,CY) were constituted involving older adults (n=80), caregivers(n=22) and healthcare professionals (n=30). The initial workshop explored motivations driving participation and defined the user engagement methodology for the CAPTAIN Stakeholder Community. Insights oriented the planning of co-creation activities considering participant’s diversity, a focus on inclusive and accessible participation, and creation of a respectful, joyful and safe environment. Two workshops explored user and system requirements through use-case driven insights on how technology could support identified needs; two co-production cycles followed, with experimentation of a “minimum viable product”.

Results: Willingness to participate was intrinsic (esteem-building, self-actualization, self-improvement), extrinsic (relatedness) and altruistic, by the desire to contribute to the common good. The use of tangible products presenting easy to follow interactions, co-creative and cognitively accessible tools facilitated the engagement of older adults with mild cognitive decline as co-designers and co-researchers. Participants provided insights on expected value (support autonomy, dignity, independence) and ethical concerns (secure, accessible, unobtrusive, dignifying, decision-making respectful/supporting user to hold locus of control), orienting improvements in designs, interaction and content, in a very early development phase.

Conclusion: Although the potential to maximize the value delivered and the requirements traceability was met, divergent views collected challenged the researcher team when prioritizing CAPTAIN components and features. Conflicts were usually resolved by focusing on the highest end-user value. Co-creation learning journey results enable the transfer of the hybrid co-creation value-driven approach to new research fields.

PO4.22. Intercultural care for people with a migration background with dementia

MONSEES Jessica, SCHMACHTENBERG Tim, THYRIAN Jochen René

German Center for Neurodegenerative Diseases, Greifswald, Germany

Background: Due to increasing numbers of older people with a migration background (PwM), it can be assumed that the number of older PwM with dementia might increase as well (Schouler-Ocak et al., 2015). For the year 2018, the number of PwM with dementia in Germany was estimated at around 96,500 (Monsees et al., 2019). PwM with dementia and their family caregivers face various challenges in the provision of care, such as language barriers, a lack of culturally sensitive information and services (Bermejo et al., 2012). In view of these challenges and the presumably increasing number of people affected, interculturally sensitive care is all the more important. In order to provide such care, health systems and providers of care services should respond appropriately to this particularly vulnerable population to provide them with the help and support they need.

Research question: What are important factors of intercultural care for PwM with dementia or more specifically which requirements and aspects are necessary to ensure an intercultural care for PwM with dementia?

Method: In order to answer the question, a systematic literature search in the databases PubMed, PsycInfo and Psychology and Behavioral Sciences Collection is conducted.

Expected results: Results on factors such as intercultural competence and care models, ethical aspects, cultural knowledge and awareness, aspects of communication and interaction, among others will be discussed. These will provide information about which components should not be missing in interculturally sensitive care and which aspects should be given special attention.

Discussion: The results of this study can provide guidance for both decision-makers in the healthcare system and providers of care services to help them develop and implement strategies for culturally sensitive care for PwM with dementia.

PO4.23. Shaking professionals’ caregiving foundations: experiences with problem behaviour in people with dementia from minority ethnic groups

CORINA Bosma1, SMITS Carolien2

1Carintreggeland, Hengelo, Netherlands, 2Pharos, Dutch Center of Expertise on Health Disparities, Utrecht, Netherlands

Aim: In residential and home care, professionals are caring for a growing number of people with dementia from minority ethnic groups. Carers aim to provide person centered care, also in case of behavioural problems or poorly understood behaviour. This qualitative study aims to gain insight in professional carers’ experiences with problem behaviour in migrants with dementia.

Method: Semi-structured interviews with twenty professional carers in home and residential care in an organization for health and social care in the east of the Netherlands. Interview transcripts were analysed using open coding.

Results: Three themes emerged from the data: Problem behaviour, Working on Good Care, Dynamic care values.

Problem behaviour is reported to be similar in older migrants and in autochthonous clients, when carers associate it with dementia itself. Miscommunication due to language limitations and cultural differences are seen as typical for problem behaviour in migrants. Caregivers may make successful efforts to deal with problem behaviour in a person centered way, e.g. by learning some words in the client’s native language or by playing matching music. Unsuccessful attempts, however, result in frustrations in both clients, carers and relatives. Some relatives are perceived to be causing problem behaviour, e.g. when they disrupt the quiet ward atmosphere by visiting in great numbers. Furthermore, relatives may not understand the nature of dementia or respect the carers’ work. Frustrations make carers reflect on what constitutes person centered care for migrants. Care organisations may help by offering carers intercultural insights and support.

Conclusion: Despite carers’ many efforts to provide good personal care, problem behaviour in people with dementia from minority ethnic groups may lead to frustrations in both clients, relatives and professional carers. Failure to ease the behaviour shakes the professionals’ person centered care foundation. Professionals need support at the individual, team and organizational level.

PO4.24. Adapting Alzheimer Nederland handbook “Dementie en Nu?” to Bahasa Indonesia and culture “Demensia Lalu Bagaimana?”

UTOMO Amalia Fonk

Stichting Alzheimer Indonesia Nederland, Groningen, Netherlands

Background: Alzheimer Indonesia and Alzheimer Netherlands have a strong collaboration under the Twinning Program of Alzheimer's Disease International. This is a three-year collaboration for 2017-2019 and actually a renewal of a previous program.

Objective: To exchange information, support and learn from each other and for Alzheimer Indonesia to benefit from the organizational experience from Alzheimer Netherlands to improve quality life of people with dementia and caregivers.

Activities: Adapting Alzheimer Nederland’s handbook ‘Dementie en Nu?”(Dementia and next?) to Indonesian Language and Culture. The project is involving crowd collaboration within the volunteers in Indonesia and The Netherlands, inter-generations (14 – 68 years old) and  multi discipline. From translators, editors, photographers, illustrators and designer.

Supported by Indonesian Embassy in The Netherlands.

Result: The book is being printed more than 5000 pieces supported by Alzheimer Nederland, Online Crowd Funding kitabisa.com and Werkgroep 72Dutch Charity Organisation. Distributed to 22 Alzheimer Indonesia’s chapter across Indonesia and overseas. Soft copy can be download in Alzi Ned’s and Indonesia Embassy in Den Haag website.

Alzheimer Nederland received a three-year grant from the Ministry of Health to support the program financially in collaboration with Alzheimer Indonesia and Alzheimer Indonesia Nederland. And we hope to extend the Twinning Program for the next couple of years.

 

 
 

Last Updated: Wednesday 23 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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