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OP2. Dementia-friendly society and rights

Detailed programme, abstracts and presentations

OP2.1. One-year evolution of BPSD in patients hospitalized in Cognitive Behavioral Units: the EVITAL cohort

ROUCH Isabelle1, PONGAN Elodie1, GUILLEMIN Marie-Delphine2, MOUCHOUX Christelle2, LAURENT Bernard1, DOREY Jean-Michel2

1University hospital of Saint Etienne, Saint Etienne, France, 2University hospital of Lyon, Lyon, France

Background: To improve the management of Behavioral and Psychological Symptoms of Dementia (BPSD) in France, new specific hospital units called Cognitive and Behavioral Units (CBUs) are intended for patients with dementia and productive BPSD. 

Objective: The current study investigated the long-term evolution of BPSD among these patients during the year following their hospitalization in a CBU. We also investigated the factors associated with the long-term evolution of BPSD among these patients.

Methods: The EVITAL study included 221 participants admitted to the CBUs of 3 French hospitals.

The baseline visit at entry included BPSD assessment using the Neuropsychiatric Inventory (NPI) and clinical and environment data. The patients were followed up 3, 6 and 12 months after discharge. The evolution of the global NPI score was assessed using a linear mixed-effect model. A PCA four-factor model including NPI behavioral dyscontrol, psychosis, mood and agitation subscores was also analyzed.

Results: Our analysis focused on 148 patients followed up during 12 months and seen at each visit. The global NPI score was 48.5 (SD 21.7) at baseline, 28.8 (SD 18.7) at 3-month, 23.2 (SD 16.4) at 6-month and 20.9 (15.9) at 12-month follow-up. The score significantly decreased from baseline to follow-up (F=109.3 p<0.0001). Moreover, the decrease was also observed for each NPI subscore.

The Clinical Dementia Rating (CDR) scale score was significantly linked to the baseline NPI score (t= 2.76, p=0.009), but the NPI decline was observed whatever the CDR level.

Otherwise, the number of prescribed psychotropic drugs increased from baseline to 12-month follow-up (p<0.0001). Conversely, the drugs anticholinergic and sedative burden did not increase from baseline to 12-month follow-up (p=0.35 and p=0.23).

Conclusion: The present study showed a decrease in the global NPI score and all its subscores during the year following the hospitalization in a CBU, regardless of the initial CDR score.

OP2.2. Evaluating the impact of the virtual reality app ‘A Walk through dementia’ on students learning and practice

BOARD Michele1, PHIPPS Laura2, MITCHELL Rebecca1, MURPHY Jane1

1Bournemouth University, Bournemouth, United Kingdom, 2Alzheimers Research UK, Cambridge, United Kingdom

There are widespread concerns around the quality of care given to people with dementia, this has partly been attributed to a lack of understanding by health and social care staff about dementia. Staff also feel anxious and want to know more about dementia to influence the care they provide. Having staff with the knowledge and skills to deliver good dementia care is a UK Government priority. There is a plethora of training and education available for health and social care staff to increase their understanding of dementia. To ensure a more standardised approach to dementia education a Dementia Core Skills Education and Training framework was developed in 2015.  In collaboration with Alzheimer’s Research UK we have evaluated the effectiveness of their newly created Virtual Reality app ‘A Walk Through Dementia’ (AWTD). The app aims to help people think beyond memory loss and gain a fully immersive insight into the varied symptoms people with dementia can experience in everyday life. The app has been delivered as part of a training programme to health care undergraduate students, and residential care home staff, and a training pack developed. The training pack has been mapped against the learning outcomes from the core skills framework. This presentation will present findings from the evaluation of the app and the development of the training pack. It was also outline the next stage of the project when patients will be asked to evaluate the impact of this new learning on the care they have received. We will present how effective this low cost simulated learning app can support health care and social care staff understands the lived experience of dementia and how knowing this has influenced their practice.

OP2.3. An international collaboration to improve dementia research participation and public engagement

JEON Yun-Hee1, KOTTING Piers2, SMITH Adam3, ROSSOR Martin3

1University of Sydney, Sydney, Australia, 2University of Exeter, Exeter, United Kingdom, 3University College London, London, United Kingdom,

Recruiting participants in research can often be costly and time consuming. Delays in finding the right people for studies can result in funding extensions for study delivery, study samples insufficient for robust analysis and generalisation of findings, ultimately limiting the timeliness and effectiveness of research and evaluation. The problem can be especially challenging in research concerning stigmatised health conditions such as dementia. Limited support is available to facilitate a broader public engagement in dementia research.  Currently, there is no systematic way for people with dementia and others to get involved in research in Australia.

The UK’s public engagement platform, Join Dementia Research (JDR), aims to address such challenges associated with public engagement in dementia research. Since 2015, JDR has attracted over 34,000 volunteers, facilitating 9,377 instances of volunteer study recruitment into 201 studies across more than 100 locations. Leveraging the experience and knowledge of JDR, in partnership with University College London and University of Exeter, we are creating and implementing a new national service to tackle the challenges in Australia. Using seed funding from the Australian Government, we aim to establish a self-sustainable service that will become an important part of Australian dementia research and facilitate broader public engagement in dementia research.

This presentation will report on the most up-to-date progress made through JDR in improving public engagement in dementia research in the UK and the early implementation processes involved in the Australian platform service.  Discussion will focus on bringing about sustainable and systemic change, not only to improve research recruitment efficiency but also to improve society’s attitude towards dementia and to empower those who are directly and indirectly affected by it. We argue that this innovative service has the potential to inform and guide dementia services and research policy development, and to lead to an inclusive and integrated system.

OP2.4. Global Dementia Friends network: uniting against dementia

FERNANDEZ GOMORA Daniela, TREE Philippa

Alzheimer's Society, London, United Kingdom

In 2005, Japan’s government launched the nationwide campaign - Ninchisho (Dementia) Supporters programme. This was the first campaign worldwide focusing on increasing understanding of dementia and awareness. We were greatly inspired by this programme and in 2012 pulled together a plan on how we could create a national programme through social action, volunteering and mobilisation. In 2013 the Dementia Friends programme was launched.
 There are almost 2.5 million Dementia Friends in England and Wales, evaluation of the programme has demonstrated that Dementia Friends feel more confident in their interactions with people living with dementia and empowered to take action in their communities.Not only has Dementia Friends proven a success in England and Wales but the premise of this social action movement has captured the attention and imagination of people globally.During the past two years Alzheimer’s Society has committed to, as part of the Prime Ministers Challenge 2020, ‘turning Dementia Friends in to a global movement including sharing its learning across the world and learning from others’. We are supporting Alzheimer associations worldwide to develop their Dementia Friends programmes through leading the Global Dementia Friends Network.This abstract will highlight Dementia Friends programmes across Europe, and will discuss how we continue to share learnings and best practice with one another, and how this network of mutual support and growth is helping us to meet Action Area 2 of the WHO Global Dementia Action Plan (50% of countries to have at least one dementia-friendly initiative to foster dementia-inclusive society by 2025).Dementia isn’t just a health and economic challenge. People living with dementia and families frequently face discrimination and in parts of the world can even face violence. Dementia Friends is one way in which we can tackle existing stigma and create meaningful change for people living with dementia worldwide.

OP2.5. Social understanding of dementia diagnosis

BUXÓ Susanna1, TOMÉ Gemma2, CETÓ Montse3, MORENO Mariola4, PRECKLER sílvia4, MESTRE Emma5, ROVIRA Myriam7, PASTOR Pau2, CAÑABATE Mª Pilar4

1Consorci Sanitari Terrassa. Hospital Sant Llàtzer, Terrassa, Spain, 2Hospital Universitari Mutua Terrassa, Terrassa, Spain, 3Hospital Universitari Santa Maria de Lleida, Lleida, Spain, 4Fundació ACE. Institut Català de Neurociències Aplicades, Barcelona, Spain, 5Institut Pere Mata, Tarragona- Reus , Spain, 7Centre sociosanitari el Carme, Badalona, Spain

This is a multicenter study promoted by the social workers of seven sociosanitary memory clinics in Catalonia. Our research was focused on the understanding of the diagnosis of dementia by the relatives. Our hypothesis was that a greater understanding of the disease would help to better define the needs and its organization. 

Objectives: To study the quality of knowledge and understanding of the diagnosis of dementia among the caregivers. 

Methodology: The data collection was carried out through a semi-structured interview, designed ad hoc, to 100 caregivers and / or relatives after the comunication of the diagnosis of dementia. The quantitative and qualitative perspectives were combined. The quantitative analysis included: sociodemographic data, health status, understanding of the diagnosis and forecasting it. 

Results: 74% of the relatives were women; 55.6% of the total exceeded 65 years; and in 52.1% of the sample, schooling was less than 6 years.71% of the interviewees were main caregivers. 63% of the interviewees did not understand the diagnosis, 66.3% considered that the person with dementia would not get worse over time, 23% considered that the medication prescribed did stop the process and 15.2% expressed that they have no knowledge in which stage of the illness their relative was. The rest of the participants, although they stated that they already knew the disease stage, in 32.9% the stage was not congruent with theone reflected in our medical report (10.5% caregivers were confused in the degree of affectation of their family’s illness). 

Conclusions: Our study highlights the difficulties of the society in understanding what dementia means. The lack of understanding can directly affect the necessary caring and develop situations of social risk. Therefore, we considered necessary to promote supportive measures aimed to improve the knowledge and understanding of the dementing disease process.

OP2.6. Relational autonomy dignity consent and decision making

CAHILL Suzanne

Trinity College, Dublin, Ireland

Autonomy, defined simply as self-determination and freedom to choose is for all of us a critical component of quality of life.  Yet all too often a person diagnosed with dementia may be stripped of all decision-making capacity and as a result will experience a decline in quality of life. This paper explores the relationship between the autonomy rights, dignity needs and the decision-making capacity of a person living with dementia.  It argues for a more nuanced relational approach to understanding autonomy whereby irrespective of the severity of cognitive decline, cognizance is given to the individuals' ability to value one thing over another and to their will and preference. The paper calls for the elimination of traditional understandings of autonomy, which disadvantage the individual by placing an unprecedented emphasis on rationality. Some of the difficulties and practical dilemmas confronting practitioners attempting to respect a cognitively impaired person's autonomy rights are explored and recommendations are forwarded for best practice in this complex area. 

OP2.7. Cognition, autonomy & vulnerability – decision making in dementia, the UK approach

MUKHERJEE Sujoy

West London MH NHS Trust, London, United Kingdom

Modern psychiatric practice cuts across many frontiers of knowledge, skills & understanding with challenges as to how to maintain rights. This is particularly pertinent in the field of old age psychiatry where understanding of legal and ethical framework and their complex interaction with our patient’s clinical and psychosocial problems determine how well we serve our patients, their carers and the wider society. This is also crucial in our role balancing between the basic rights of liberty and autonomy in our patients while managing risk and discharging our duty of care.

In this pressentation I shall examine the complex legal construct of mental capacity and consent, practical challenges of assessing mental capacity in everyday practice and relevant legislative framework in the United Kingdom.

OP2.8. Older people’s awareness on and experiences with living with dementia in rural communities in Austria

TATZER Verena, PLUNGER Petra, HEIMERL Katharina, REITINGER Elisabeth

Alpen Adria University, Wien, Austria

Background: The project “AGIL – Staying in life” aims at fostering healthy ageing in five rural communities in Austria using a health promotion approach (https://styriavitalis.at/entwicklung-innovation/agil/). Specific emphasis is placed on living well with dementia in rural communities as a cross-cutting issue via creating visibility, developing activities, and fostering inclusion of people living with dementia. In a first step, older people’s experiences and needs related to ageing well and living with dementia in rural communities were assessed.

Methods: Following a project-presentation outlining the aims of AGIL in the respective communities, residents aged 70 years or older were invited by local contact points to participate in a focus groups. A total of 39 people, 24 of them women, participated. The focus groups were carried out by the researchers and lasted for approximately 2 hours. Each focus group was audiotaped and transcribed verbatim. A thematic analysis was carried out.

Results: Ageing well was associated with remaining active and being able to lead an independent life. Clubs are an important provider for joint activities and focal points for social contacts in rural communities. Becoming dependent in later life, e.g. not being able to care for oneself, is perceived as very worrisome: Family relations have changed, as has neighbourly help, and new models of care are not yet tangible. Carers’ experiences related to living with dementia hint to stigma still associated with dementia, although positive experiences with caring are also mentioned. When talking about dementia, participants without caring responsibilities mostly referred to later stages of dementia, talking about the threat of cognitive impairments, becoming dependent on others, and the burdens of caring. Based on these results, it will be argued that initiatives depicting a more nuanced understanding of dementia, as well as involving people living with dementia, are necessary to foster inclusive (rural) communities.

OP2.9. Brain health Champions promoting the prevention of memory-related disease

POHJANVUORI Anita

The Alzheimer Society of Finland, Helsinki, Finland

Background and need: The pillars of the National Memory Programme of Finland (2015–2020) and the related implementation plan include actions aimed at the promotion of brain health. The goal is to have brain health taken into consideration in all sectors of the society and to increase people’s awareness of brain health. The promotion of brain health is based on the prevention of memory-related disease. According to the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (Finger), brain-friendly choices can postpone memory-related diseases, but people need information and guidance to support the making of such choices.

The Alzheimer Society of Finland promotes brain health on the basis of up-to-date information. The Alzheimer Society of Finland’s task is also to support the brain health and the prevention of memory-related disease of people already suffering from such disease, as well as their relatives.

With the growing need for information, a lot of actors are needed. Organisations hold events and arrange group activities, in which volunteers can help. With appropriate training, instructions and tools, volunteers can provide information and tips related to brain health. Such operations are considered a new form of volunteer activities for the promotion of brain health.

Method of operation: A brain health Champion is a volunteer interested in the promotion of brain health. During a one-day training, an expert explains factors contributing to brain health and affecting the risk of memory-related disease during a model lecture.  A brain health Champion works through a local memory association.

Extent of operations: The Alzheimer Society of Finland has been offering training for brain health Champions as part of the National Memory Programme since 2015. In 2018, we have trained our memory coach specialists to continue the training of volunteers in compliance with the Alzheimer Society of Finland’s model.

OP2.10 dementia friendly spots – community support network for persons with dementia and their care partners

VIRANT Alenka, JURJEVČIČ Maja, BASTARDA Maša, KRIVEC David, L. ZLOBEC Stefanija

Spominčica - Alzheimer Slovenia, Ljubljana, Slovenia

In Slovenia number of people affected by dementia is increasing constantly. Awareness of dementia is rising, but support services are still not widely accessible. Answering the increasing need for non-formal types of support, in 2017 Spominčica – Alzheimer Slovenia came to an idea of Dementia Friendly Spots (DFS). The first DFS was opened in July with support of the Human Rights Ombudsman in the Ombudsman office. Since, there has been a growing interest in DFS around Slovenia. Spominčica already opened more than 30 DFS in nursing homes, health centres, centres of social work, Red Cross, respite centres, police, firestations, hospitals, pharmacies, banks, etc.

DFS are an innovative way of implementing a National Dementia Strategy, by following directions and iniciatives on building dementia friendly cities and society. With DFS Spominčica is building dementia friendly communities and spreading support networks to the less developed regions.  

DFS main goal is to raise public awareness of dementia and train the public workers in recognizing signs of dementia, offer information, support and direction to persons with dementia, their care partners and other members of the community. The aim is to develop a network of DFS. This way employees in every office, store, library, museum etc. in the community would be appropriately trained in offering help and support to persons with dementia and their families. This will empower them, increase their quality of life and enhance social inclusion, so they can remain active members of the local communities.

Spominčica provides 1-day trainings to all employees before opening DFS in an organization. Then, an official opening is organized, where all of the local media are present. An organization is presented with a DFS sticker and a certificate. Activities of DFS are monitored and evaluated, and staff trainings are periodically renewed.

OP2.11. Co-researching with people living with dementia: A co-operative inquiry

DAVIS Katie1, KEADY John2, SWARBRICK Caroline2, BEE Penny2, OPEN DOORS Stigma Research Group3

1The University of Manchester, Manchester, United Kingdom, 2Supervisor, Manchester, United Kingdom, 3Co-researchers, Salford, United Kingdom

It is estimated that worldwide, there is a new diagnosis of dementia every four seconds (World Health Organisation, 2016).  Within the literature, it is noted that although participatory approaches to research are being adopted to study the experiences of people with dementia, the voice of people with dementia is often lost.  Therefore, it is important to utilise methodologies that enhance the inclusion of people living with dementia in research, not simply as participants in the research, but as co-researchers. Co-researchers describe experts by their own lived experience, actively working in partnership with ‘academic researchers’ in all - or parts - of the research process.

Co-operative inquiry is an emerging approach within dementia research that involves cycles of action and reflection and aims to address the concerns of the population being researched ‘with’ them, as opposed to ‘on’ them. Heron and Reason (2006) highlight that traditional research includes exclusive roles for researcher and participant, yet within co-operative inquiry, those traditional roles are replaced by a partnership that fosters a creative and practical collaboration. The idea of using a co-operative inquiry, is informed by the proposition of a model of social citizenship for people living with dementia. Social citizenship challenges the traditional definition of citizenship and allows for the consideration of citizen-driven campaigns and social movements (Bartlett & O’Connor, 2010).

This presentation will draw on the formation of a co-operative inquiry with people living with dementia in the North West of England.  The co-operative inquiry co-researched stigma and dementia, and co-produced an animation based on their own experiences of living with dementia. We will explore how such a group is facilitated and the contributions it can make to the dementia research field, highlighting the creative methods that were employed as part of the research process.

OP2.12. Involving couples living with dementia in the development of a strengths based approach to service delivery

MCDONNELL Rebecca

AFADAX, Malaga, Spain

Couplehood acknowledges that the impact of living with dementia is not unilateral. It explores the point of view of two people wishing to continue their lives together as opposed to planning from individual perspectives. Initially, views about sustaining relationships following a diagnosis of dementia were obtained through engagement with the undiagnosed spouse. This approach focused on what the relationship might lose or the level of burden the spouse might encounter. This deficit model compounded negative perceptions and denied the person with the dementia the opportunity to participate in a debate that directly affected their lives.   

Strengths based approaches look at gaining an understanding of the lived experience from couple’s joint perspective and strengths.  Parallel to this development in thinking was a growing emphasis on the active participation, (AP) of people living with dementia in research, policy development and service delivery. Using AP to develop strength based couplehood is an example of how the voice and influence of the person with dementia can be promoted.  

From the author's experience of working in Spain, a deficit approach seems prevalent and involving people with dementia in decisions that affect their lives requires further attention. Often people with dementia are spoken for; this can be by their partner, who may have their own support needs.

This presentation describes the AP of couples attending a day service in Spain exploring a strength based approach to couplehood. Questionnaires and semi structured interviews identified the foundation of their relationships, how a diagnosis of dementia impacted on this and what support they wanted to help maintain their sense of togetherness. The presentation details service delivery proposals that respond to this input.  The presentation examines the benefits of the AP of couples in service design, including what this involvement meant to them.

 

 
 

Last Updated: Wednesday 14 November 2018

 

 
  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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