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QOP4. Societal perspectives II

Detailed programme, abstracts and presentations

QOP4.1. No research about us without us - Involvement of persons with dementia in assessment of research proposals

HARSTAD Kristine

Norwegian Health Association, OSLO, Norway

Introduction: The Norwegian Health Association is the national patient organization for persons with dementia and their supporting carers. Since 2014, the organization has allocated over 10 million Euros to projects through the Dementia Research Program. We have developed a model that describes involvement of persons with dementia in proposals assessment. To our knowledge, this has not been reported previously. Our model is therefore innovative and our experiences may be useful to other institutions and countries.

Pilot project and implementation of model: In 2017, we conducted a pilot project. Based on these experiences, a model was developed and implemented in the 2018 funding scheme.

A User Representative Panel (URP) was established consisting of two persons with dementia and their supporting carers. Based on their experience with dementia, the panel members graded lay summaries of proposals according to these criteria: 1. Potential impact and ethical aspects; 2. User involvement; 3. Language and communication/dissemination potential. After individual assessments, the panel members agreed on a consensus grade for each proposal. The panel’s recommendations were presented to a peer review committee prior to common discussions. If the scientific quality of two or more proposals was found equal, the URP assessments guided recommendations for funding.

Results, evaluation and possible impact: The URPs recommendations swayed the final funding decision. The panel members found it very meaningful to participate, although challenging. The peer reviewers were positive to the implementation of the model. A qualitative questionnaire was sent out to the stakeholders; the URP members; peer reviewers, the Dementia Research Board and the administration.

We will present the model, guidelines for the URP and results, hereunder the outcomes from the questionnaire. We aim to show that people with dementia can be a resource related to research proposals assessment.

QOP4.2. Stronger together – The lessons of creating a working group of people with dementia

ROBERTS Chris2, DOXFORD Hilary1, MASON Chris2

13 Nations Dementia Working Group, Yeovil, United Kingdom, 23 Nations Dementia Working Group, Rhuddlan, United Kingdom

People with dementia have a right to be involved in work that is going to affect their lives – ‘nothing about us without us’. Involvement takes many forms. Individuals with a dementia diagnosis are frequently approached for contributions to all types of project. Whilst this is encouraged and welcomed, a downside is that individuals are frequently ‘sold’ as being representative of people with dementia. This is neither correct nor fair and can add stress to those individuals. One way of gaining consensus and a collective voice is from working groups of people with dementia.

Alzheimer Europe’s working group of people with dementia together with other national working groups have demonstrated what people with dementia can contribute to both professionals and to fellow people receiving a diagnosis.

England, Wales and Northern Ireland had no such group working at a national level. A group of self-advocates within the UK approached the UK’s Alzheimer’s Society with a proposal to create such a group, now established and called the 3 Nations Dementia Working Group.

We will present and discuss:

  • the problems encountered: prior to creating the group, during the early days and as we continue to establish ourselves
  • the lessons we have learned
  • the benefits we and those we collaborate with have found

We benefitted from the experiences of the existing working groups. We hope that our experiences could encourage other countries to set up similar groups. All group members consistently report the importance of having a purpose, a feeling of belonging, of connectivity and personal achievement through our work. Our collective experience contributes to the wider knowledge and understanding of the whole spectrum of the needs of people with dementia and brings a focus to our choice of projects and campaigns to support.

We are united by experience and purpose.

QOP4.3. Time for Dementia - Involving people with dementia and their carers in undergraduate education

DALEY Stephanie1, FEENEY Yvonne2, CASHIN Zoe3, BANERJEE Sube3

1Sussex Partnership Foundation Trust, Brighton, United Kingdom, 2Brighton and Sussex Medical School, Brighton and Hove, United Kingdom, 3Brighton and Sussex Medical School, Brighton, United Kingdom

Background: Traditionally, dementia education provided at undergraduate level has been described as variable and ill-equipped to provide the knowledge and attitudes needed to provide person-centred, compassionate care to people living with dementia.  Addressing this, the Time for Dementia programme (TFD) was developed at Brighton and Sussex Medical School.  The programme involves people with dementia and their carers as the lived experience experts, who shape student learning by sharing their experiences of the condition. Students visit a family living with dementia six times over two years.  Student learning is enhanced through shared experiences and longitudinal contact with families living with the condition. As well as assessing student outcomes, we were keen to understand the experience of families taking part in the programme.

Method: A purposeful sample of families (person with dementia and their carer) who had at least 12 months’ involvement in the programme were selected from a cohort of 282 families and were invited to take part in an in-depth qualitative interview at either 12 or 24 months. Interviews were audio recorded, transcribed verbatim and analysed using thematic analysis.

Results: 37 families took part in an in-depth qualitative interviews. Families enjoyed participating in the programme, feeling their input would help improve awareness and understanding of dementia. Four themes were identified from the analysis, these were; motivators, value to family, student factors and student learning.

Conclusions: This study identifies underpinning factors which motivate families to join dementia education programmes and its impact on them. We found that engagement in such programmes can have wider benefits to participants, and do not cause harm. These findings can be used to strengthen recruitment and enhance family involvement in similar programmes.

QOP4.4. Air travel for people with dementia: Working together to identify barriers and facilitators to participation

TURNER Katherine1, WARREN Alison1, SHERRIFF Ian1, BANNIGAN Katrina2

1University of Plymouth, Plymouth, United Kingdom, 2Glasgow Caledonian University, Glasgow, United Kingdom

A diagnosis of dementia should not mean the end of a person’s ability to participate in meaningful activities. However, we know that accessibility for people living with dementia requires improvement across a range of settings.

Air Travel has been identified as one such area that is not meeting the needs of people with dementia. Legislation to protect the right to participation of people with hidden disabilities such as dementia does exist, however it is considered that, historically, this legislation has been largely interpreted in favour of those with physical, rather than hidden, disabilities.

This presentation will outline the results from a series of face to face interviews with people with dementia and their travel companions in order to create a picture of where the main difficulties in participation in air travel lie and some strategies that may help participation. It will also identify if travellers with dementia are aware of their rights in relation to air travel in general or if more needs to be done to promote such rights within the United Kingdom.

The presentation will also discuss how people with dementia, their travel companions, researchers and other interested parties such as The Civil Aviation Authority, who regulate air travel within the United Kingdom, have made valuable connections in order to improve the air travel experience for this consumer group. Such connections have included working at a local level at the University of Plymouth through doctoral research with a reference group and also at a national level through the work of the Prime Minister’s Dementia Challenge Group for Air Transport.

Recent evidence shows that more people requiring assistance are travelling by air and in the longer term, this study will inform guidelines for the aviation industry on how they can support people living with dementia in the future.

QOP4.5. Forgotten in a crisis: Addressing dementia in humanitarian response


1Alzheimer's Disease International (ADI), London, United Kingdom, 2Global Alzheimer’s & Dementia Action Alliance (GADAA), London, United Kingdom, 3Alzheimer Society, London, United Kingdom

Every three seconds, someone in the world develops dementia, with nearly 60 per cent living in low- and middle-income countries. Simultaneously, one in every 70 people around the world is impacted by crisis and urgently needs humanitarian assistance and protection. People living with dementia (alongside millions of older people and those with disabilities) are too often excluded from humanitarian assistance.

Alzheimer’s Disease International, the Global Alzheimer’s & Dementia Action Alliance and Alzheimer’s Pakistan worked together to analyse dementia in humanitarian settings for the first time. The ‘Forgotten in a crisis: Addressing dementia in humanitarian response’ report published in May 2019 draws on the results of a systematic desk-based literature review, policy analysis, and research with humanitarian and civil society organisations, to identify the impact of emergencies on the lives of people living with dementia and the role of actors in humanitarian response.

The World Health Organization’s Global plan on dementia contains a commitment to planning for humanitarian emergencies which considered individual support for people with dementia and community psychosocial support.

The ‘Forgotten in a Crisis’ report explores the barriers (social exclusion, stigma, discrimination and lack of awareness) that mean people with dementia are largely overlooked by humanitarian actors as they can be the hardest to reach. It also explores the proposed solutions via a set of policy recommendations (tailored to humanitarian agencies, governments, policy-makers, donors, inter-governmental organisations and civil society organisations), which if properly implemented, will ensure no-one is left behind in humanitarian response simply because of their medical condition, age or disability

QOP4.6. Supported decision-making with people with dementia in the U.S.A.: A multi-stakeholder research exploring opportunities and challenges


Vrije Universiteit, Amsterdam, Netherlands

Deterioration of mental capacity is among the most evident effects of dementia. Traditionally, western legal systems subordinate the recognition of legal capacity, that is the power to make legally valid choices, to the possession of adequate mental capacity, putting people with dementia at risk of being excluded from legal decisions. However, thanks to the UN Convention on the Rights of Persons with Disabilities, regulations on legal capacity are shifting towards a more rights-based approach, in which even persons with cognitive conditions are recognised the right to make choices. In this context, supported decision-making is advocated as a model through which an individual receives personalised assistance in decision-making, which respects their autonomy. Such a model can play a valuable role in promoting the right to make decisions of people with dementia. However, its potential has not yet been fully explored.

With the aim to fill this gap, we conducted an exploratory study based on interviews with people with dementia, individuals in their support networks, and professionals from the US, focusing on how individuals with dementia are assisted in decision-making.

The study shows that various strategies are adopted in order to support the person with dementia in making decisions. They include explaining information, giving reminders, and double checking comprehension. In general, even relatives and caregivers who thought they did not use supported decision-making, reported practices reflecting the model. Potential challenges relate to the timeliness and fluidity of decision-making and to providing support tailored to the wishes of the person.

Findings indicate that there is significant scope for supported decision-making in dementia care. There is the need for structured efforts regarding awareness creation for caregivers, training and guidance of families, and research experiments to increase the effectiveness of the model.

QOP4.8. Moral case deliberations in nursing homes: Which moral dilemmas are currently at stake?


UNO-UMCG, Groningen, Netherlands

Moral case deliberation (MCD) is a method to stimulate reflection and joint learning between health care professionals from concrete and practical experiences. More and more elderly care organization want to implement MCD within their teams to foster in-depth moral reflection and competencies. To support MCD, the University network of elderly care organizations of the University Medical Center of Groningen (UNO-UMCG) organizes workshops MCD in the affiliated organizations for healthcare professionals, varying from physicians, (specialist) nurses, case-managers and nurse assistants. The UNO-UMCG is a network between researchers of the UMCG and 20 elderly care organizations in the North and East of the Netherlands. Its main goal is to collaborate in developing research that corresponds to actual questions experienced in practice and improves the quality of care.

In the MCD workshops, participants bring in actual and concrete moral dilemmas after which one issue is selected for mutual reflection and fine-tuning of the moral perspectives of the participants. This has resulted in a database of more than 70 actual moral issues so far. In addition, the UNO-UMCG organized a dialogue meeting for MCD facilitators of the organizations to share insights on current moral issues and chosen strategies. 

In this presentation, we present an overview of the current moral issues addressed by healthcare professionals based on the database and outcome of the dialogue meeting. One context where concrete moral dilemmas seem to increase is for example in working with families in nursing homes, especially when practitioners and families have different expectations and ideas of what good care entails. We will analyze the reported moral dilemmas and reflect on why certain moral issues are currently dominant in nursing homes from the perspective of healthcare professionals as well as discuss strategies that are used to deal with these issues. 

QOP4.9. Municipality views on implementing eHealth interventions to support caregivers of people with dementia

CHRISTIE Hannah1, SCHICHEL Mignon2, TANGE Huibert3, VERHEY Frans2, DE VUGT Marjolein2

1Maastricht University, Maastricht, Netherlands, 2Department of Psychiatry and Neuropsychology and Alzheimer Centre Limburg, School for Mental Health and Neurosciences, Maastricht University, Maastricht, Netherlands, 3Department of Family Practice, CAPHRI School for Public Health and Primary Care, Maastricht University, Maastricht, Netherlands

Background: Very few evidence-based eHealth interventions for caregivers of people with dementia are implemented into practice (Christie et al., 2018). As part of a cross-border collaboration focusing on dementia and depression in the elderly, two eHealth interventions for caregivers of people with dementia (‘Myinlife’ and ‘Partner in Balance’) were implemented in nine municipalities in the Euregion Maas-Rhine. 

Methods: Eight municipality officials were interviewed using open-ended, semi-structured interviews about their background, thoughts on the implementation of the intervention, recommended strategies, and thoughts on eHealth in general. One municipality discontinued the implementation project and submitted answers to the interview questions via email. The interviews were transcribed and independently analyzed using inductive thematic analysis.

Findings: The perspectives of the municipality officials were grouped into four themes: the wider context, the organization, the target groups, and the eHealth intervention. Key findings were that while municipality officials generally experienced the adoption of the eHealth technologies as atop down push towards implementation, they were enthusiastic and made a conscious choice to implement eHealth in their communities, based on their conceptions of the timeliness and relevance of both the eHealth and the dementia caregiving aspects of the intervention. Also, municipality officials’ dissemination strategies for eHealth tended to focus on emphasizing personalization through face-to-face events and personal contact. Finally, the prospective implementation strategies tended to be bottom-up and collaborative with local organizations.

Conclusions: This study provided information on the initial perspectives of municipality officials regarding barriers and facilitators to the adoption, dissemination and implementation of eHealth interventions for caregivers of people with dementia, as well as their views on eHealth for dementia in general. This study helps fill the gap in the literature concerning the implementation context, which is often left unmapped. Future research will explore which strategies proved to be successful.

QOP4.10 DataDay: Self-management app for people with MCI or dementia

SWAMINATHAN Swathi1, ASTELL Arlene1, MARTINS Felicia2, FLORA Parminder3, WALKER Shannon4, MORELANS Chris5, DONOVAN Steve5

1University of Toronto, Toronto, Canada, 2University Health Network, Toronto, Canada, 3Ontario Shores Centre for Mental Health Sciences, Whitby, Canada, 4Primary Care Memory Services, Oshawa, Canada, 5Citrus Suite, Liverpool, United Kingdom

Self-management is an important approach to empowering individuals with chronic conditions to live as well as possible. DataDay is a self-management app co-created with people with Mild Cognitive Impairment (MCI) or early dementia. It comprises four modules: cognition, mood, physical activity and nutrition that people are invited to use every day. Usability and usefulness are undergoing testing in Durham Region of Ontario through the Primary Care Memory Clinics. Twelve people with MCI diagnosed through Durham Region Primary Care Memory Clinics have been testing DataDay. Daily data are uploaded into cloud storage and can be reviewed by the individuals plus members of the Memory Clinic team they grant access to. Ten participants have been using DataDay for up to six months with the majority of participants recording entries for 70 to 80% of the days, with only one below 50%. Individuals can keep track of how they are doing through simple graphics. Memory Clinic staff can review the reported information to determine potential ‘red flags’, i.e. early signs of change in function in one or more domains. The majority of people with MCI or dementia are using DataDay most days each week. They find the ability to track their progress helpful and the knowledge that Memory Clinic team members can also see this is reassuring. Some people have found the nutrition module time consuming to complete but overall the feedback is positive and provides support for encouraging self-management for people with MCI and dementia.



Last Updated: Wednesday 11 December 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