Basket | Login

 
 
 
 

PO1. Dementia-friendly society

Detailed programme and abstracts

PO1. Dementia-friendly society

PO1.1. Patient experiences of living with Lewy body dementia: the challenge of remaining involved

BAMFORD Claire, BOYLES Miriam, FINCH Tracy, O’BRIEN John

Lewy body dementia (LBD) is a complex illness with wide ranging symptoms. Existing literature suggests that it is associated with lower quality of life for patients but few qualitative studies have explored patient experiences of living with this disease. As part of a five-year programme grant to improve the diagnosis and management of Lewy body dementia (DIAMOND-Lewy), we interviewed 24 patients with a diagnosis of LBD or Parkinson’s disease with either mild cognitive impairment or self-reported memory difficulties.

Maintaining social networks and community involvement was challenging for many people with LBD as a result of cognitive impairment, anxiety and shame, and limited mobility. These factors also influenced interactions within the family and patients risked becoming marginalized within their own families. Social settings and activities were often difficult for people with LBD due to high levels of background noise, inaccessible venues and poor pacing of activities; as a result many patients reported a sense of isolation.

The study highlights the need for new opportunities for patients with LBD to engage in social activities which are tailored to their individual needs. The findings also highlight the need to find new ways of involving people with LBD in research, whether as participants or advisors. Formal interviews and traditional approaches to patient and public involvement can be challenging for people living with LBD and may result in them being excluded.

This presentation presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Grant Reference Number DTC-RP-PG-0311-12001). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

PO1.2. The challenges of shared decision-making in care networks of people with dementia

GROEN – VAN DE VEN Leontine, SMITS Carolien, SPAN Marijke, JUKEMA Jan, COPPOOLSE Krista, DE LANGE Jacomine, EEFSTING Jan, VERNOOIJ-DASSEN Myrra

Background: People with dementia are confronted with many decisions over the course of the dementia. People with dementia want to be involved in decisions about their lives. Shared decision-making is the preferred way of involving people in decisions. Shared decision-making facilitates essential dimensions of social health: using remaining capacities, and managing one’s life-with-dementia. Our study aimed to describe the challenges of shared decision-making in dementia care networks.

Methods: Our study involves a multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, the decision-making participants, and their contributions to the decision-making. We used content analysis to delineate categories and themes.

Results: The three themes that emerged describe the challenges of shared decision-making for dementia care networks: (1) adapting to a situation of diminishing independence, which includes shifting roles in the decision-making; (2) tensions in network interactions, which result from different perspectives and interests and which require reaching agreement about what constitutes a problem in the situation; and (3) timing decisions well.

Conclusion: Shared decision-making in dementia care networks is challenging. Our results show that shared decision-making in this context should be flexible regarding the changing capabilities of the person with dementia to preserve his or her autonomy as long as possible. Besides this, it is important to work towards a shared view about what constitutes a problem in the situation. Moreover, professionals facilitating shared decision-making should adjust the decision-making pace to that of the care network members.

PO1.3. What means the view from the window and the access to the outdoor environment in everyday life for people living with dementia?

KULLBERG Agneta

Housing conditions are central for everyone and throughout a life course perspective we are likely to spend major of the day in our residential environment in older age. Most people living with dementia resides in their ordinary housing for several years after getting a dementia-diagnosis. Research has mainly focused on ‘dementia-friendly’ housing environment in residential care homes (mostly indoor environment) rather than on conditions in “ordinary” housing.  Our home is a very private sphere of central importance to our identity, while the dwelling and type of house has its windows and doors open to interaction to the public outside world. The view through the windows and the passage through doors either invite or restrict the contact with the outside environment. Few studies have focused on how the indoor environment and the outdoor environment are interconnected. What does the exposure to the outdoor visual environment means for people with dementia?  Does the outer door invite or restrict interaction between indoor and outdoor space?  The purpose of the study is to present findings drawn from sit-down and walking interviews with people living with dementia about the impact on wellbeing depending on what is seen through the windows and the access to the outdoor environment.  A sit-down interview in the participant’s home was followed up with a walking interview in participant’s neighborhood with sixteen participants living with dementia in ordinary housing. All interviews were videotaped and the embodied experiences was analyzed. Results indicates that views through the windows is significant and influences wellbeing of people living with dementia. To have immediate access to outdoor space is a basic need in everyday life but not a given opportunity for all people with dementia. The work presented discuss the need of a salutogenesis approach on the important interaction with outdoors environment for people with dementia.

 

PO1.5. Using the sense of smell to strengthen engagement

HARMAN Linda

Talking is the very best medicine for many people with dementia but can be intimidating for family and difficult for carers to initiate. Breaking into the isolating effects, the sense of smell provides a direct highway to memory and emotion in the brain. Despite the sensory reduction or hypersensitivity that can occur in dementia, we will describe how using the senses can enhance communication with many people, supporting engagement and thus increased well being.

The author identified the omission of this potentially powerful communication tool whilst attending Sensory Therapy with her elderly mother, where images, sounds, touch and even some tastes were used, but not the sense of smell.  Drawing on her own sensory understanding to communicate with her increasingly aphasic mother, the author was inspired to create Smell & Connect, a set of scented conversation cards.

UK trials of smell as communication aides on the elder care wards in Royal United Hospitals Bath & Bristol RUH) were conducted on a one-to-one, face-to-face basis, using the Smell & Connect cards as part of befriending visits by Dementia Co-ordinators and Alzheimer’s volunteers. Patients varied in their level of dementia. Many had some normal, age-related sensory loss. Feedback perfectly illustrated that the cards provide very useful prompts to help draw people with dementia into reassuring conversation and the smell stickers provide an unusual diversion that can help engagement, even with strangers.

A second trial is currently underway with members of NAPA (National Association of Activity Providers in the UK).

This poster will illustrate the brain and sense of smell, include in-use photographs, a short video and explanatory text to include comments from the NAPA review and from RUH trial.

PO1.7. How does Cage Cricket enhance the perceived life experience of people with dementia and their care partners?

FISHER Rick, HICKS Ben

Traditional discourses, based predominantly within biomedical constructions, depict dementia as a tragedy that inflicts loss and despair on those affected by it. Psychosocial interventions and leisure activities have been shown to improve the well-being and quality of life of both community-dwelling people with dementia and their care partners as well as challenge the ‘tragedy discourse.’ Cage Cricket is one such innovative community psychosocial initiative that is receiving numerous National awards throughout the UK for its ability to enable everyone, regardless of background, gender, race or ability, the opportunity to participate in a game that promotes health, social and educational benefits for players. Until recently, however, no research existed that explores the use of this game with community-dwelling people with dementia and their care partners.

Working with Dementia Hampshire and Cage 4All, a research team from Bournemouth University Dementia Institute (BUDI) undertook a pilot study to explore the feasibility of using Cage Cricket with people with dementia and examine the perceived impact on their well-being. 12 people with dementia and their care partners participated in two games of Cage Cricket. Perceived outcomes were measured using a mixed method approach consisting of pre and post event questionnaires, observations and focus group discussions. The findings revealed potential benefits for people with dementia and their care partners and highlighted areas for consideration if the games were to be promoted more widely among this population of people.

PO1.8. Bowling for dementia: A qualitative investigation of a Boccia group for people living with dementia

OVENDEN Imogen, DENING Tom, BEER Charlotte

Background:Group exercise initiatives have been shown to improve physical and psychological wellbeing in people with dementia and their carers. Given that fewer than 50% of people with dementia feel part of a community, interventions should also promote feelings of inclusion and self-worth.

Aims:This qualitative study explored the impact of a Boccia (modified form of indoor bowls) group on the lives of people with dementia and their carers

Method:Semi-structured interviews were conducted with people with dementia (N=6), carers (N=10) and the group organisers (N=6) to explore their experiences and how these were influenced by Boccia itself and the group. Interviews were recorded, transcribed and analysed using Thematic Analysis.

Results: Four main themes emerged from the data. “The special nature of Boccia” led interviewees to describe it as a highly inclusive game, allowing participants to compete and enjoy themselves regardless of their cognitive ability, in addition to providing physical and mental stimulation for people with dementia. The theme “This group is a family” illustrates how many felt the group resembled a family, being caring, welcoming and providing practical and emotional support. It also provided an invaluable social opportunity for all members, encouraging new friendships and strengthening bonds between carers and people with dementia.  Perhaps unsurprisingly, all carers described “The struggle of being a carer.” However, many felt the group was a “Dementia friendly environment” where they were comfortable interacting and where they were treated as an equal, without feeling hindered or defined by dementia; something rarely experienced elsewhere.

Conclusion:Boccia is an exciting initiative, with interviewees reporting that the group provided a stimulating, enjoyable activity for  people with dementia and their carers; and most importantly an inclusive, dementia friendly environment. Further research is needed to see if these findings can be replicated with other groups.

PO1.9. Persons with dementia “are given a voice” when music and singing are included as part of their everyday life

OTTESEN Aase Marie

During a post-doctoral project person with dementia and their relatives are involved in the research-process. The aim is to explore their experiences and what importance it has for them that singing and music are part of their everyday life and the rehabilitation effort. The research is carried out with inspiration from action research. Methodical is interviews, storytelling, video documentation and the Dementia Care Mapping method used. The results from this part of the project will be presented. The project contains three parts, which in addition to involve the perspective from the person with dementia and their relatives, also have focus on an professional and interdisciplinary perspective and an organizational perspective aimed at the conditions for implementation of singing and music in practice. Following research question will be elucidated: a) which experiences does persons with dementia and their relatives have when singing and music are used as a communicative form of intervention in everyday life and in their interaction and relationship with caregivers and what impact does it have on their quality of life and well-being? b) What impact does it have, from a professional and an interdisciplinary perspective that song and music are used as a communicative form of intervention in rehabilitation and in everyday life for a person with dementia and how does it affects the quality of the intervention? c) Which ideas and suggestions does persons with dementia, relatives and professional have for improvement and to the implementation and anchoring-process when singing and music are used as a communicative form of intervention? d) How can we develop a manual that makes it possible to implement and anchor song and music as communicative form of intervention in rehabilitation for persons with dementia? The research project is funded by the Velux Foundation.

PO1.11. A stage for Alzheimer

De ROSA Giuliana, FRANCONE Caterina, BRUNO Patrizia, MARANO Francesca, SOMMELLA Francesca, SANTILLO Antonella, VISCONTI Maria Maddalena

Introduction: The A.M.N.E.SI.A. association ( italian acronym for neurogeriatric diseases and Alzheimer syndrome association), in the wake of last  year's positive experience in Ljubljana concerning the empowerment  of expressive and gestural language, has developed a "Theater workshop" project, integrating parallel and multidisciplinary rehabilitation programs. The elders, converted into "actors", have carried out their rehabilitation therapy while having fun and performing a script which was enhanced by cognitive, motor and emotional stimulations.

Purposes : The purpose was to activate educational and health process that help the elder affected by dementia to manage the discomfort, in order to reach a better psycho-physical well being, in a nice ambience.

Objectives:

•               Recovery of treatment motivation

•               Integration and linearity between therapeutic programs.

•               Cost reduction.

Materials and methods: The Target audience consisted of 10 elders between 65 and 90 years of age, with mild to severe dementia, divided in 6 women and 4 men. For the participants selection psychometric tests and clinical scales to evaluate cognitive, functional and emotional aspects have been used, conducted by a geriatrician, a psychologist and experienced educators. The total duration of the workshop; wich consisted of six months with a meeting every two weeks, has been divided in different phases, from participants getting acquainted with each other, to theatrical activity with therapeutic content

Results: Improvements of the emotional condition have been highlighted in the participants, a better ability to socialize, improvements in the perception of self-efficacy and identity.

PO1.12. Alzheimer’s Society’s dementia friends: Changing the way the nation thinks, acts and talks about dementia

TREE Philippa

Alzheimer’s Society’s Dementia Friends programme is the UK’s biggest ever initiative to change people’s perceptions of dementia.  It aims to transform the way the nation thinks, acts and talks about the condition.

Dementia Friends was launched to tackle the stigma and lack of understanding that means many people with the condition experience loneliness and social exclusion. We need to create more communities that are dementia friendly so that people affected by dementia feel understood and included.

There are two ways to become a Dementia Friend. The first is to attend an interactive Information Session delivered by our volunteer Dementia Friends Champions. Alternatively, become a Dementia Friend online. This involves watching a short video featuring Gina, who is living with dementia, then signing up for a ‘Little Book of Friendship’, which contains more information and advice.

Dementia Friends is about learning more about dementia and the small ways you can help. This could be anything from changing the language you use when talking about dementia, to visiting someone you know living with dementia.

There are now over 1.5 million Dementia Friends in the UK, made up of people from all walks of life, from carers and families, to organisations and increasingly children and younger people.

A lot of work needs to be done to support a societal shift towards acceptance and inclusion of people affected by dementia. Dementia Friends can play a huge part in achieving this. Our recent evaluation showed 61% of Dementia Friends felt more confident interacting with people with dementia, 79% felt motivated to do more to help others in their community.

We are on track to reach 4 million Dementia Friends by 2020, and are supporting other countries to develop their own Dementia Friends programme. Together we can change society’s beliefs and the actions of communities worldwide.

PO1.14. Communication with mutual respect: - A report covering a collective destigmatisation campaign by Trotzdemenz e.V.

WILLIG Simone, ROHRA Helga

2015 was the foundation of the first non-profit organization by people with and without dementia: "TrotzDemenz e.V.". This is unique worldwide.

Helga Rohra, a dementia champion living herself with the diagnosis of dementia, is the chair of this organization in Germany.

The team consists of people from various branches: carers, psychologists, social workers, manager, journalists, producer and other people affected. Joined action occures in sharing the knowledge.

The major aim is the focus of still existing and new abilities in dementia, the importance of teamwork in society, the raising of awareness and a change of perspective with the intend of a vast destigmatisation campagain.  The platform of Trotzdemenz e.V. is an interactive in different areas:

Social media

Completely innovative, a daily statement about what living with dementia means referring to challenges personally as well as socially is spread via Facebook and Twitter.

Followers and reactions are spread all over Europe. In this way an interactive feedback is generated.

Quotes from media are reflected with the aim to change the language into a dementia friendly and to support people to use a dementia friendly language.

Dementia goes school

The members of the organization visit school classes. The emerging dialogue shows the importance of teaching young people what dementia means by people living with this condition.

Lectures in front of large audiences from all social areas

•               Over 100 lectures per year are covered by the team of our organization

•               Public raising awareness by video clips

•               Events showing up with comedians, musicians, artists and speakers addresses wider public.

•               Cooperations with other associations help to raise awareness and to pool the abilities of each association at a very high level (different voices – one goal)

The speech delivered by the chairs of the organization will be made more vivid by showing movie clips, footages and pictures of the Trotzdemenz e.V. campaign.

PO1.15. Getting to know dementia – how to change to perception of dementia in Denmark.

SØRENSEN Maja Louise, VAN DEN BOS Katrine, BRUUN HEBBELSTRUP Lisa, FIALA BJERRE Jon

Alzheimerforeningen (The Danish Alzheimer Association (DAA)) has a dream about a Dementia Friendly Denmark, where people with Dementia will meet understanding and a helping hand. Although almost 10% of the Danish population is affected by Dementia either as living with dementia or as a carer, dementia is still taboo and many misperception exist about dementia. The DAA has therefore launched a new project with inspiration from Alzheimer’s Society UK, called ‘Demensven’ (Dementia Friend). The aim is to increase the level of knowledge about dementia in the Danish society and give people practical advice on how to help people with dementia.

Results from a survey done in April 2016, show a great need for more knowledge and understanding of dementia. In the survey, more than 1200 carers and people with dementia voiced their opinion about how to create a dementia friendly society, and more knowledge and understanding was the most popular response.

It is easy to become a Dementia Friend and everyone can join. New Dementia Friends sign up via a website after watching a three-minute video. Afterwards they receive a welcome package by mail containing basic knowledge about dementia together with good ideas on how to help people with dementia and a pin badge to show support for the cause.

Another part of the project is to develop a network of local volunteers. The volunteers have attended a one-day course arranged by the DAA. After the course, they can host talks about Dementia Friends in their local area and hereby generate new Dementia Friends. By April 2016, 120 volunteers have already completed the course and they have hosted more than 100 local meetings and signed up 2500 Dementia Friends.

The aim is to get 100.000 Dementia Friends by 2018. By April 2016, more than 10.000 has already joined.

PO1.17. Too good to forget: positive experiences in dementia

SMITS Carolien, GROEN-VAN DE VEN Leontine, SPAN Marijke, DUSEE Eline

Dementia is usually depicted in sad and dark images, which may hamper empowerment and positive health in both persons with dementia, their caring relatives and care professionals.

We designed three pilot projects that aim to highlight any positive aspects of living with dementia.

First, we invited people with dementia, and their informal and professional carers to share with us the “smiles” in their lives. This resulted in 51 enthusiastic reactions and reflections and observations on warming and humorous expressions and events. These were collected in a booklet for the general public.

Second, we interviewed five family carers and two persons with dementia and analyzed the interview transcripts. Positive experiences of persons with dementia and carers involved social contacts, positive life attitude, meaningful activities, enjoying daily events, positive management of dementia, personal growth and satisfaction as carer, and a pleasant environment.

Third, a multiple case study was conducted including five cases (each involving a person with dementia, informal carer and professional). All persons were invited to take photographs of positive daily aspects. Subsequently, they were interviewed on the motivations of these photographs. The preliminary analyses of the photographs and interview transcripts show that all three parties have positive experiences. Most of them relate to enjoying small things in life and meaningful and pleasant social interactions.

The results of three pilot studies demonstrate the positive daily experiences of people with dementia, their informal and professional carers. These experience make life and work worthwhile despite the negative dementia aspects. They should not be forgotten in dementia research, care practice and media.

PO1.18. “I thought you’d be wasting your time, if I’m honest”: A qualitative exploration of the impact of a visual art programme for care home residents with dementia

ALGAR Katherine, WOODS Bob, WINDLE Gill

As a movement, arts and health have gained more gravitas over the last decade and art interventions are considered to have positive effects on health and well-being. It is important that studies should include first person accounts from people living with dementia and that evaluations of cultural arts interventions should also include a larger network such as staff and caregivers. The aim of this study was to qualitatively explore the experience and impact of a visual art programme for care home residents with dementia from the perspective of the resident, care staff, and artist team.

A visual art intervention which incorporated art-appreciation and art-making was run in two North Wales care homes. Data were collected from 21 intervention participants living with dementia through semi-structured interviews which were supplemented by field notes; from eleven members of care staff from the participating care homes through open-ended questionnaires and semi-structured interviews; and from group discussions and reflective diaries from the artist and two artist volunteers running the intervention.

The three groups all spoke of the positive impact involvement in a visual art intervention can have on people living with dementia. The participants’ enjoyment was identified in all groups and other benefits identified included improvements in mood, communication / interaction, concentration, independence, confidence, and self-esteem. However, perhaps the most important impact of the intervention was that it helped staff and family members realise the remaining abilities of residents, of whom they had previously underestimated what they could achieve. This clearly exemplifies the excess disability imposed on care home residents and the results of this study have implications for improving the day-to-day life for care home residents living with dementia.

PO1.19. Harnessing the power of civil society to act on dementia

LITTLE Amy

In the time it takes you to read this sentence, a new person will have developed dementia. At least 47.5 million people live with dementia worldwide and this number is growing by 9.9 million each year – the equivalent of a new case every three seconds.

An estimated 58% of people with dementia live in low or middle income countries and with the number predicted to rise to 75.6 million by 2030, the cost will add significant financial strain to vulnerable countries’ budgets. Stigma, exclusion and fear due to a lack of public awareness of dementia can lead to human rights abuses in many communities. Both the financial and human cost of dementia makes it a core development issue that can’t be ignored.

The Global Alzheimer’s & Dementia Action Alliance (GADAA), founded by the Alzheimer’s Society, Alzheimer’s Disease International and others, is seeking to harness the power of wider civil society to act on dementia. By working together civil society can amplify the number of voices advocating and educating on dementia. As GADAA formalises its membership in 2016, together we can make the world a better place for people living with the disease, both now and in the future.

PO1.20. How do you explain dementia to a six year old? The Ally Bally Bee Project’s personalised children’s book about dementia.

ADAMS Matthew

Explaining a loved one’s dementia to a child can help ease distress for both child and parent – but it is not an easy task. Children’s books on the subject do exist but are often written in a generic style – featuring a little boy or girl, a grey haired old man or woman and only some of the many behavioural traits associated with dementia.

The Ally Bally Bee Project is a social enterprise on a mission to create a personalised children's book about dementia.

Through our website, customers will be able to customise their book before purchase. From names and appearances to dementia related behavioural traits – the end product will be a beautifully illustrated, personalised story about dementia delivered straight to your door or downloaded to your tablet.

We have three main objectives:

  • Ease the distress dementia can inflict upon children and parents
  • Reduce the stigma of dementia
  • Raise funds for dementia organisations via sales

There is no personalised children's book about dementia available to buy anywhere in the world today. Our book will be the first of its kind. 

Over the past 12 months, Founder and digital marketing professional, Matthew Adams has been using his skills to increase awareness and funds for the project. We now have more than 8,000 Twitter followers, 1,000 visitors to the website each month and a growing email database.

Trading will commence in time for Christmas 2016. Although our launch book will be in English, phase 2 of the project will focus on translating into other languages.

The presentation will focus on the importance of explaining dementia to children, the story behind the project, the steps taken to get to where we are today and why we think The Ally Bally Bee Project is so much more than just a children’s book.

PO1.21. “Theatre of the Oppressed” an interactive technique in the context of dementia care

TSATALI Marianna, TOUBALIDOU Maria, EGKIAZAROVA Maria, TSOLAKI Magda

As it is well known, caregiver’s burden is a wide term which includes the physical, emotional and financial problems arised by the dementia care. Literature has globally indicated caregiving support as the cornerstone of the non-pharmacological therapeutic interventions in dementia.

Trying to improve the process of dementia care, enhance caregivers’ techniques and knowledge, reduce their burden and promote the public awareness for dementia, we suggest a new therapeutic process which tries to improve their experience as caregivers.

Brazilian theatre director and activist Augusto Boa was the first who created the basic methodology of the Theatre of the Oppressed in the 1970’s.  Based on the dialogue and the active interaction between the facilitator and the audience, the theatre of the Oppressed aims to be regarded as a useful tool in terms of dementia care, in order to investigate caregivers' needs, deep thoughts and feelings which come from their role as caregivers.

In the current study, we will try to describe the basic elements of the program, how the caregivers are encouraged to take part actively in the whole process and how they maintain the emotion of «katharsis», which has its origins in the ancient Greek theatre, where actors and audience had the therapeutic experience arising from actively taking part in the play. In this case, the play in the theatre is their experience as caregivers, a biome from their own life. 

Additionally, qualitative data will be presented after the program’s implementation. In detail, according to caregivers’ feedback, it seems that the program improved their knowledge regarding the dementia care and helped them express their feelings about the burden. Moreover, they showed more empathy about their patient. The large majority of them evaluated the program as both interesting and useful during the daily care.

PO1.22. Participatory design fictions: co-designing and debating dementia-friendly futures

TSEKLEVES Emmanuel, DARBY Andy

As emergent technologies and the UK government’s dementia policies mix and shape our futures there are many potential consequences and implications for people living with dementia, their carers, families and society at large.

Dementia and new technology are topics that can frighten and alienate many older people and can be difficult to explore with the public. The work-in-progress project, ‘What if?’  , asks whether developing a Participatory  Design Fiction method might help older people to engage in and influence futures debates in these areas through speculative design. Design fictions – provocative speculative prototypes that are socialized through a range of media – are emerging as tools to engage people in futures debates; encouraging the envisioning and questioning of the directions of future technologies and possible societies.

The project will introduce participants to a range of emerging technological areas and explore their lived experiences of dementia to develop participatory design fictions in response to dementia policy in the UK. In doing so, it will offer different audiences possible and preferable futures for a dementia-friendly society for consideration both online and at public events in Lancashire and Westminster Palace.

Through the project we will develop new methods of participatory design futures, which may offer problem finding and problem solving insights into technology’s relationship with the diagnostic, assistive and curative facets of dementia. In addition, we anticipate participant codesigners will gain epistemic value from the design experience.

We envision the primary usefulness of the co-created design fictions to be in shaping formative debates and influencing the image, perception and understanding of dementia among the general public, people with dementia, technologists, researchers and policy makers.

PO1.23. Ageing playfully: Designing playful workshops for social interaction and happiness of people with dementia

TSEKLEVES Emmanuel, LUJÁN Escalante Maria, BINGLEY Amanda

An increasing interest in exploring how digital innovation could support dementia care has been leading research responding to e-health movements, from caregiving and medical perspectives. Not much investigation has included standpoints of the people with dementia though.

The Ageing Playfully project, offered a creative space during a series of playful workshops, where by co-designing collages and models, participants with demenia had an opportunity to catalyse imagination and social interaction, and reclaim agency in the context of their own lives. Twelve co-designers with dementia their carers, and an interdisciplinary research team took part in four workshops set up within the context of an existing AgeUK ‘circle of support’.

The workshops were led by participant preferences. For instance, themes that were received with great enthusiasm in one session were continued with in the next while the selection of materials was optimised to be inclusive for all. The succession of the workshops engaging in creative tasks, triggered enthusiasm in the participants and also led to increased interaction.

Participants as co-designers expressed enjoyment and enthusiasm when given this opportunity to engage playfully with each other in imagining and building models and stories, as well as using the models as musical instruments to play music and sing along. Their carers and support workers noted how the workshop activities seemed to encourage interaction, with even the reticent, less confident members of the group joining in with the model building.

Stimulating active, social interactions is an important and timely challenge that requires more design research attention. Using co­design as a tool to engage with people with dementia is a novel approach. People with dementia in the future can be stimulated in imagination, and social interaction through similar co­design workshops.

For this reason the project has produced a short video that recounts the workshop journey and the experience of the co-designers with dementia. Also a number of practical recommendations have been developed that can be relevant for carers and researchers working with and involving people with dementia.

PO1.24. Alzheimer’s Society’s dementia friendly arts: focus on the benefits to people with dementia through dementia friendly arts and well-being

McNAMARA George, BOULD Emma

Arts venues are neutral, safe spaces where everyone is on an even footing and can converse freely and without bias. All art forms have the ability to consider everyone equally, despite physical and emotional diversities.

For people with dementia and the associated problems of isolation and depression, the provision of relevant and meaningful activities is crucial to their mental and emotional well-being. This social, economic and political challenge requires the government and society to think and act more creatively in the kind of support that can be mobilised. 

So why do art establishments need to become dementia-friendly?

• Moral case: Everyone is entitled to participate in the arts. This can break down barriers, address and challenge dementia-related stigma.

• Health and wellbeing case: There is scientific evidence that the arts have a powerful positive effect on the well-being of people living with dementia, their families and communities. This has been demonstrated by the Non-Pharmaceutical Intervention Project in Liverpool, with 94% of participants recording positive emotions at the end of the study. Participatory activities decrease social isolation and increase social engagement, impacting on cognitive and emotional stimulation, self-esteem and episodic memory.

• Artistic case: Working alongside people with dementia can inspire creativity and motivate artists to produce great art, providing unexpected opportunities for learning and creativity.

• Business case: The number of people living with dementia and their carers is rising, this represents an enormous audience that some arts venues might neglect. Becoming more dementia friendly is likely to encourage the wider community into your venue.

The Alzheimer’s Society has developed “Becoming a dementia-friendly arts venue guide”. Central to our communities, cultural venues have a major role to play in welcoming and accommodating people affected by dementia.

PO1.25. It's good to see natural ground

MACLEOD Jonathan, BROWN Paula

This paper explores how an arts centre (An Lanntair) utilising its multidisciplinary programme, a network of local artists and performers and its culturally specific focus can  become part of a supportive environment for people living with dementia and their circle of care.

In particular it examines how a person centered strategy has been developed around the use of creativity, haptic stimulation and good memory skills, drawing on culturally specific memory and a ceilidh based environment linked to the Gaelic oral tradition of the Outer Hebrides.

The paper also analyses how elements of this oral tradition such as 'hand memory', mnemonics, face to face communication, bi-lingualism and the role of a strong intergenerational community can play its part in the delayed onset of dementia

Central to the use of creativity in this project has been the development of research strands with St.Andrews University that look at lost craft skills, haptic stimulation  and indigenous oral  knowledge of elders in the community. We have also initiated research into the use of intelligent textiles as a form of non disruptive, playful stimulation for people living with dementia

We put forward the notion that cultures that use creativity, playfulness and orally generated information storing and disseminating processes  (in places such as the Outer Hebrides) may  have a role to play in finding new ways of looking at ageing and memory loss and enlightening attitudes towards dementia and the arts. 

PO1.26. KONFETTI-Cafés – a step forward in creating community-based meeting spaces for people with and without dementia

HAGEDORN Michael

KONFETTI IM KOPF develops and executes city-spanning awareness campaigns in the open public and a range of sustainable projects in order to bring together people with and without dementia in their local communities. In using music, visual arts, theatre and humour we create meeting spaces, where people connect and gain new perspectives through social contact and information.

Our KONFETTI-Café in a densely populated community in Hamburg is a dementia-friendly meeting place where musicians and artists of all genres encourage people with and without dementia of all ages and background to experience the fun of creating - and a gain of self-esteem.

Core focus group are people with dementia and care-partners living at home. They represent the largest group of people affected by dementia, yet they often retreat from being active parts of society into their homes. We put much emphasis on adressing them directly with our network partners. On site we always provide trained care staff.

At the KONFETTI-Café children from schools, kindergartens and all kinds of people in the neighbourhood meet once a week with people with dementia on a casual basis. Learning from each other, laughing with each other, experiencing and valuing each other. Through this continual contact grows a deeper understanding while the focus does not lie on "the problem“of dementia or other ailments. It is a contact fuelled by respect and fun.

KONFETTI IM KOPF uses a very creative and network-based approach to help generate new images in heads and hearts of people - and prove, that a life with dementia is still worth living. We are convinced that only through this community-based, yet society-spanning approach we will be able to help encourage a shift in paradigm.

www.konfetti-im-kopf.de

PO1.27. Adapting and implementing an observation tool to evaluate if taking part in an art programme is beneficial to people living with dementia.

JONES Catrin Hedd, WINDLE Gillian, ALGAR Katherine

Summary: A review of observation tools to measure quality of life and well-being of people with dementia by Algar, Woods and Windle (2014) concluded that the Greater Cincinnati Chapter  Well-Being Observation tool (GCCWBOT: Rentz, 2002; Kinney & Rentz, 2005) was the most appropriate tool for assessing psychosocial interventions such as art. Following this, observation data were collected in three conditions (a visual art programme; another structured activity; and unstructured time) in a care home with residents living with dementia and adaptations made to the tool (Algar, 2015).

Dementia and Imagination is a three year study comparing the responses of people living with dementia attending a weekly programme of visual art engagement led by professional artists to group settings which did not involve art. The  adapted version of the GCCWBOT was used to record the affect and engagement of ‘Dementia and Imagination’ group members within eleven groups (June 2104- September 2015) from three separate sites collecting data in a care home setting, hospital assessment ward, and a community setting. Face to face training in the GCCWBOT was delivered to the observers and tests to ensure all the observations were collected according to the same standards were conducted before and during the live observation data collection periods.

In total 120 group members living with dementia were observed in a social group setting which did not involve any art activity before the twelve week art programme started. Observations were repeated within the first 3 sessions of the art programme and again during the last two sessions (weeks 11 and 12).

Preliminary results of the inter-rater reliability between coders and changes over time for the complete observation data will be shared, along with a discussion about how to ensure observational measures are used effectively when evaluating a visual art programme with people living with dementia.

PO1.29. Music as a health promoting agent in dementia care. Results from a Norwegian/Danish context

RIDDER Hanne Mette, STIGE Brynjulf

Introduction:According to The United Nations Principles, older persons should have access to cultural and recreational resources of society. Musical memory is remarkably well-maintained despite loss of other cognitive functions in dementia, and the use of music activities, caregiver singing, social dancing and music listening with iPods is increasingly implemented. Therefore, it is important to consider why and how music as a cultural and recreational resource is integrated in dementia care.

Methods:In the period from 2008-20014 the University of Bergen coordinated a collaborative network for knowledge building between persons with dementia, caregivers, music therapy clinicians and researchers with biannual meetings, seminars, open lectures, data collection for a pragmatic RCT, and knowledge sharing. The interdisciplinary collaboration led to a broad understanding ofwhymusic is relevant andhowmusic is implemented in activities and daily care as well as in music therapy sessions.

Results:The various perspectives on music as a health promoting agent in dementia care are documented in the Norwegian/Danish bookMusikkterapi og Eldrehelse(Music therapy and elderly health) published in June 2016. The use of music in a person centered perspective as well as the understanding of musicking as a social activity forms the basis of a rich description of music for social cohesion, in daily life activities and as a therapeutic agent. The application of music is not only used with the purpose to entertain, but also for creating a meaningful interrelation, thereby serving as a communicative practice. In an interdisciplinary approach music is integrated in daily activities, assessment and therapy, and with the aim to reduce medication, agitation, use of restraints, to increase awareness of resources, advance the culture of care, and finally, to improve quality of life for the person with dementia.

PO1.30. Creating together – engaging in the arts therapies

BURNS Jane

Acknowledging the growing participation in the arts therapies by people with dementia, this presentation based on research and related findings from a first mapping study of the field (Burns, 2009, 2012)  highlights how arts therapists from the disciplines of art, music, dance and dramatherapy work in partnership with the person to support creative expression. Engagement in the ‘art form’ can facilitate the Person with a significant vehicle for non-verbal communication and sensory exploration of his/her feelings associated with a diagnosis of dementia and everyday living – too often it is forgotten that once a person receives a diagnosis of dementia the Person still returns home to an ongoing family situation which may or may not be stable. The research (Burns 2002, 2009, 2012) has indicated that the arts therapist and the Person work together  to find a creative outlet, one in which the art form acts metaphorically to symbolise thoughts and feelings that sometimes the person may find too difficult to verbalise. Or alternatively may wish to share with others when taking part in an arts therapies group session.

This presentation will highlight some of the shared and distinct ways in which arts therapist work  together with the Person with dementia. It will also highlight some of the dynamic ways in which arts therapists have adopted and adapted practice.

PO1.31. TimeSlips™ storytelling within an acute dementia ward, the value of being creative

WARD Alison, BREAR Jan

TimeSlips is a method of creative storytelling developed by Anne Basting (1998). This approach is a person-centred model to support people with dementia to create imaginative stories using an image and open-ended questions.

Two accredited facilitators in the TimeSlips method have been running weekly storytelling sessions at a purpose built acute dementia ward (Forest Centre) since May 2015. The ward provides treatment and person-centered care approaches for patients with early stage to complex dementia needs. Each session runs for 30 minutes and all contributions from the storytellers are included within the story. The TimeSlips methods of validating everyone’s responses, collaborative working with the storytellers and facilitating a space and time to be creative are employed in every session. A final read through of the story leads the storytellers to devise a title for the story and these are then typed and distributed to be shared with staff, patients and family members.

The impact of the storytelling sessions has been noted through participant observations of the sessions and discussions with staff and patients. The storytellers have shown pride in their stories, showing these to their family and expressing their enjoyment at the end of sessions. Recall of the sessions has been observed with some storytellers, who remember the sessions week to week. For staff the sessions and stories are a way of seeing beyond the patient identity to the person living with the dementia, as a person’s humour, past experiences, wisdom and imagination become part of the story.

Using TimeSlips has been a way of supporting the person-centred ethos of care at the Forest Centre, encouraging staff at all levels to engage in the sessions and to foster a creative and imaginative way of working with people with dementia.

PO1.31Bis Understanding people with dementia’s experiences through involvement with photography and storytelling

WARD Alison

Photography and storytelling methods were used to support the voices of people living with dementia who attend an adult school (VUK) in Denmark as students. The study aimed to understand the students’ lived experiences and involve the students in the research process. The use of photographs and creative activities, such as storytelling, are being used as ways to collaboratively engage participants in research and with people living with dementia this can be a way to support discussions and memory and enhance the understanding of people’s experiences.

In this study, students with dementia took photographs of their school and home situations. The images taken by the students were used as prompts to support their narrative experiences of being students and sharing home life stories. Four weekly sessions were run with two groups of five participants. Video recordings of each session were made, which were then transcribed and thematically analysed.

The use of photography and storytelling in this study encouraged active involvement in the research process. Students decided what they wanted to photograph and what images they wanted to talk about, with some asking to take further images to fully capture the school experience. The creative approach supported the students’ discussions about being a student at VUK and of living with dementia, furthering intra-group dialogues and understanding of shared experiences. Students talked about the use of photographs as an enjoyable process and one which helped them to share their stories. This approach can also be a way of involving a person with dementia in the research process and give voice to their experience.

This study links well with abstracts from Kim Sørensen (VUK) and Diana Schack Thoft (University College Northern Denmark).

 

PO1.32. Tackling isolation and loneliness through social action

CAMPBELL Zoe, VAVASOUR Jo

In 2013, Alzheimer’s Society UK produced a report: "Dementia 2013: The hidden voice of loneliness". This revealed:

  • A third of people with dementia lost friends following a diagnosis.
  • More than a third of people responding to the survey felt lonely.
  • Nearly two-thirds of people with dementia who live on their own felt lonely. Difficulties in maintaining social relationships contributed to this.

Many services for people with dementia are building-based, group services with only a small proportion offering individualised support that encourages access to the wider community.

Our new service that will aim to tackle these issues, Side by Side (SbS)

Objectives

  • Enable people with dementia to lead more fulfilling lives.
  • People with dementia are not excluded from services and activity and are able to remain active and involved in their communities.
  • Combat social isolation and the loneliness.
  • Empower people with dementia to develop their own solutions and responses
  • People with dementia identify their own personal talents, strengths and capabilities and what they contribute to the wider community.
  • Build local networks of support and activity.
  • Reduce stigma and contribute toward Dementia Friendly Communities

Method: The use of person centred supporting planning tools that enable people to identify the outcomes they can achieve and the activity and services they need to access to realise these. Volunteers are then placed with people to support them to access those activities and services.

This approach identifies the strengths, capabilities people with dementia have and if they wish to share these with peers and the wider community. If so volunteers support them in this.

The service is subject to a robust, external evaluation conducted by the Charities Evaluation Service which began in October 14 and is continually producing evidence that then feeds into development.

PO1.33. Knowledge of dementia among the general public: A population-based survey

SCERRI Charles, CACHIA Deborah

Currently, the number of people with dementia in the Maltese islands exceeds 1.5% of the total population. This figure is projected to more than double by the year 2050. The main objective of this study was to investigate the level of knowledge of the Maltese general adult population regarding dementia with a special focus on Alzheimer’s disease (AD) and comparing the data to Alzheimer’s Europe five country survey published in 2012. Participants were members of the general public living in the Maltese islands who were aged 18 and over. A total of 400 (representative sample) telephone interviews were conducted in which participants were asked a number of questions on dementia and AD. Socio-demographic data were also collected. The results indicated that the majority of respondents mostly feared of getting cancer and AD. They were also more inclined to vote for a candidate who favours more funding for AD research and care.  The survey also revealed that more work needs to be done in order to increase the awareness about the availability of a reliable test to diagnose AD and the availability of a medical treatment that slows down the disease progression. Initiatives need to be devised in order to increase the public’s knowledge about the different symptoms of AD, in particular, the behavioural and psychological symptoms. The majority of the respondents agreed that they will seek medical assistance either for themselves or a family member on becoming aware of symptoms related to AD.  Overall, the results are consistent with those reported in the AE study and should aid policy makers and health care professionals in developing targeted information campaigns aimed at increasing awareness and understanding of dementia, the latter being one of the main objectives of the National Strategy for Dementia in the Maltese Islands launched in April of 2015.

PO1.34. ‘Golf Days Out’ - A dementia friendly initiative

WALSH Danny

This dementia friendly golfing experience aims to improve the quality of life of people living with dementia and their carers. The scheme links people with dementia to golfing ‘buddies’ who are ‘dementia friends’ - ordinary golf club members who are given a little insight into dementia and have been trained for the role of buddy.

The help and support the venture gives can help people achieve more than is often assumed of a person living with dementia. It provides a unique combination of physical exercise (walking the course and hitting the ball), cognitive stimulation (counting your score and judging the distance to the hole) and socialisation through participating in the golf sessions and competing in groups.

Another important factor is that this all takes place in a green and semi natural environment where there is a connection with wildlife nature and the outside world and a healthy dose of fresh air. The Golf Days Out’ also acts as a support group and social event for carers who meet together whilst their loved ones are playing golf. So the session provides two important activities at the same time. It provides day care activity, respite and carers support in the normalising environment of the local golf club away from hospitals and institutions and so is less stigmatising and fosters a sense of belonging to the community.

A pilot scheme is currently underway which is being evaluated via an adapted dementia quality of Life assessment tool and semi structured interviews. This will examine the impact of the project upon both the people living with dementia and their carers. ‘Golf days out’ is being started as a social enterprise scheme and it is intended that eventually it will be cascaded throughout the UK helping to provide stimulation for those with dementia and respite for carers.

PO1.35. How contextual aspects influence the performance of challenging activities in everyday life for persons with mild cognitive deficits

LINDQVIST Eva, PERSSON VASILIOU Annika, HWANG Amy, ASTELL Arlene, MIHAILIDIS Alex, SIXSMITH Andrew, NYGÅRD Louise

People with mild cognitive deficits due to, for example, early stage dementia face challenges when performing activities in their daily lives, both at home and in public space, and more knowledge about these challenges is essential when aiming at creating a more dementia-friendly society. Even if the challenges are relatively well known, the literature shows that little is known about the contextual aspects that can influence.

The aim of this study was to examine the different types of contexts that people with mild cognitive deficits encounter, and where they experience challenges in valued everyday activities. A second aim was to describe how they relate to those contexts and challenges.

Five focus groups were undertaken with four different groups of stakeholders. These included members of voluntary health organizations (i.e. people with early stage dementia and significant others), health professionals, researchers and manufacturers of technology. The transcribed interviews were analyzed with a content analysis approach.

From the analysis of data, five areas of concern emerged, in which the persons with mild cognitive deficits commonly met challenges when performing everyday life activities: Doing everyday chores, Managing personal finances, Meeting family, friends and others, Getting around to places, and Engaging in culture and media. Four types of contexts showed to have a significant impact on the challenges: the physical, social, everyday technology and information contexts. The contextual aspects were intertwined, that is, how they were related influenced the challenges for the persons with mild cognitive deficit. Further, all types of contexts could bring about very multifaceted meanings and consequences, even contradictory ones; they could at the same time present challenges and provide solutions. The challenges included in the five areas of concern were modeled into a flower-like figure, “the Flower of context”, which further displayed how the contextual factors together influenced the identified challenges.

Conclusions: this study sheds new light on how contextual aspects can be challenging as well as supporting when people with mild cognitive deficits interact with them in everyday life. The findings lay a foundation for more structured consideration and elaboration of the interaction between these people and different types and layers of contexts, when the aim is to reach novel support solutions and to create a more dementia-friendly society.

PO1.36. The importance of finding joy and humour in caregiving for family caregivers caring for a person with dementia

VAVILLA Jayasudha

Background: As the needs of persons with dementia increase, caregivers who provide the bulk of the care will encounter significant impact on their physical and mental well-being.[1] Research points to the need for more investigation into the positive effects of incorporating joy and humor into educational training as a means of developing positive coping strategies that can be associated with the caregiving experience.

Aim: To deliver educational workshops that explored the strategies and approaches for incorporating joy and humor into caregiving.

Method: The Social Worker developed a workshop titled ‘Finding joy and humor in caregiving’ by exploring the benefits of using humor, having a positive outlook and creating opportunities for joy in caregiving. Interactive activities with didactic discussions, active sharing of personal joyful and humorous anecdotes and a video clip formed part of the content. The workshop was designed to be an engaging learning opportunity. A total of 4 workshops have been conducted in various community settings.

Outcomes: Evaluation survey results from 36 participants from different community agencies indicated a high level of satisfaction with the workshop content. Feedback also indicated that the workshop helped in building awareness about thinking about dementia and their caregiving role in a different way and learning about different strategies that focussed on joyful and humorous experiences. Agencies have increased their requests for the Social Worker to deliver  this workshop for their clients emphasizing the need for further research on the impact of the workshop on caregiver outcomes and the need for exploring strategies for living well with dementia and building resilience.

Conclusions: Increasing role demands and stressors impact caregiving and take a toll on caregiver health. This program focuses on the protective factors and positive aspects of caregiving including: joy, laughter and humor. The emphasis is on building protective factors and increasing resiliency and better coping in spite of all the stressors in the caregiving journey. This program aims to enhance the knowledge of participants with newer strategies to deal with the caregiving roles and demands.

 

PO1.37. The attachment to the neighbourhood in Swedish context – experiences from people with dementia

 ODZAKOVIC Elzana

The number of people living with dementia is increasing worldwide and in Sweden it is estimated that 158, 000 (CI 110,000 - 170,000) people live with dementia and this figure is expected to double during the next twenty years.  The number of people with dementia living in their ordinary housing will also increase, the neighbourhood as place will become more important because that are the place where we feel attach to and shape our knowledge of social processes. The understanding about how people with dementia experience the attachment to the neighbourhood in a Swedish context is a research area that still is unknown. This study aims to explore how people with dementia attach to their neighbourhood as a place during the aging process. 15 persons with dementia were included in this study, who lived in ordinary housing such as a single-family house or in a city in a flat or rural areas. A sit-down interview and walking interview was performed in their neighbourhoods. All interviews were video-recorded and audiotaped, analysed using thematic analysis. Preliminary results from the interviews show that people with dementia attach to the neighbourhood at the same way as before.  The place neighbourhood uses in different ways dependent on the person’s life experiences and social contacts is very important to feel attach to the place. The attachment to the neighbourhood is still strong despite a dementia diagnosis; this is now knowledge that needs to be in use to make the neigbourhoods in Sweden dementia friendly.

PO1.38. Talking time: telephone support groups for informal caregivers of people with dementia– Study Protocol of a randomized controlled trial

ALBERS Bernd, DICHTER Martin, WERMKE Katharina, HALEK Margareta, BERWIG Martin

Background: Caring for people with dementia (PwD) at home requires an enormous amount of time, organization and commitment. Therefore, informal caregivers (ICs), mainly relatives, of PwD often feel a high burden. Even though support groups on-site have shown positive effects on the subjective well-being and on the perceived social support of ICs, relatives often either have no time or opportunity to leave the PwD alone or there are no support groups in the vicinity. The Talking Time project therefore aims to close this supply gap by providing structured telephone-based support groups in Germany for the first time. International studies have shown resulting benefits for ICs. 

Methods: The project will be evaluated in a cluster adjusted randomized controlled trial. The effects of the 3-months Talking Time intervention will be compared to a normal care group. Outcomes will be measured at two different times (baseline = T0, after 3 months =T1). The control group will receive the Talking Time intervention after T1.

ICs are eligible if they are 18 or older, have cared for the PwD for at least four hours on four days per week in the last six months. Exclusion criteria are psychiatric disorders of the IC.

Primary outcome of the effectiveness elevation is the subjective wellbeing of the relatives measured by the mental component of the SF-12. Secondary outcomes are the physical component summary of the SF-12, the Perceived Social Support Caregiver Scale, the Caregiver Reaction Scale and the Neuropsychiatric Inventory. For the process evaluation different quantitative and qualitative data sources will be collected addressing reach, fidelity, and dosage.

Discussion: Results will provide further information about the effectiveness and optimization of telephone-based support groups for IC of PwD. This could help to guide the further development of effective telephone-based social support group interventions.

PO1.39. Relational conceptions of dignity and the dementia-friendly communities programme

DE SABBATA Kevin

For a long time, dementia was seen mainly as a medical/health care issue. However, in the last decade, experts have started to look more carefully at its social dimension and implications for the person’s everyday-life. In this context, many of them are focusing on the problem of dignity in dementia, applying relational approaches such as those theorised by Martha Nussbaum and Amartya Sen. According to such conceptions, dignity consists in the realisation of each individual’s capabilities within society. This brings to a new approach to dementia care.

One of the examples of this new approach may be found in the Dementia-Friendly Communities Programme (DFCP), launched by Alzheimer’s Society in 2012. The programme aims to help local communities in the UK to remove the barriers that prevent social inclusion for people with dementia. Therefore, it focuses on ten main objectives including challenging stigma, providing care which is tailored to the person’s wishes and developing respective businesses and services. In this context, Alzheimer’s Society and local charities are undertaking different actions such as providing adequate training for carers and retail staff, developing permanent networks of support and organising informative talks.

This paper analyses the implications of relational conceptions of dignity in the field of dementia care, looking at the example of the DFCP UK. In this context, it shows how such conceptions of dignity provide a conceptual framework which helps to identify the objectives and messages emerging from the DFCP and could form the basis for future developments of the project itself. In order to do this, it analyses official documents of the DFCP, looking at them in the light of the ideas discussed by Nussbaum and Sen.

PO1.40. Cogs club: first Italian experience

BEVILACQUA Petra, FABBO Andrea, DE VREESE Luc, CAPITANI Andreina, DRAGHETTI Anna, GARZETTA Glenda, MENABUE Giacomo, CHATTAT Rabih

The "Cogs Club" was born in England in 2011 thanks to the efforts of a nurse, Jackie Tuppen, specialized in the assistance of people with dementia. The project is based on the Cognitive Stimulation Therapy (CST, Spector A.), that has shown over the years its validity in slowing down the progression of dementia (2003; 2006; 2011) related to other psycho-social activities (occupational activity, music, gymnastic), turning every meeting from a traditional session of about an houre into a half day of 4 hours of activities. The purpose of the project is also to offer the opportunity of a psycho-social intervention, creating a context for the socialisation and a net of formal and informal connection to people that traditionally do not ask for the start up of the services, with the goal to delay the development to the disability, keeping a reasonable level of independency as long as possible.In each group there are about 12 people. People who take part at the project have a diagnosis of light-moderate dementia, rather of Alzheimer kind. People with sensorial deficit, motor or behaviour disorder are excluded. The trial of this project began in Italy in 2015 with the start of two clubs with a weekly attendance; in this year other 2 clubs have been opened .The conduction of the cogs-club is entrusted to a psychologist with the function of coordination, that involves an occupational therapist and a psychiatric rehabilitation therapist. The first person is involved in the welcome, in the activity of cognitive stimulation for the CST; the second one's duty is to cook and to stimulate reminiscence; the third one's activity ist related to music and motor activities. In every club are also present some volunteers of the promoting association of the project, purposely trained for the activity. The participants are submitted at a batch of cognitive evaluation, functional and emotional, composed by ACE-R, GDS-15, DAD, QoL-AD and ZBI, at the beginning and at the end of the cycle of meetings that should last 3 months. At the end of the meetings a final satisfaction questionnaire will be delivered to the participants and to their families. The quantitative and qualitative results on the participants and on their caregivers are really encouraging and are in the stage of statistical processing. To check whether a mean change within subjects reached a statistical significance level we applied a Multivariate Analysis of Covariance (MANCOVA) for repeated measures using an outcome (MMSE, ACE-R, DAD, ZBI, GDS, QoLAD for PWD and QoLAD caregiver) as variable within subjects, sex as a factor between subjects and age, schooling, level of depression (GDS) and cognitive impairment (MMSE) as covariates. The mean change in MMSE and ACE-R before and after the Cogsclub frequency, although positive, does not reach a level of statistical significance; only the basal value to the GDS is a significant covariate indicating that the level of depression impact significantly on the performance of the cognitive tests. The mean change in the GDS pre- and post, although positive, does not reach a statistical significance level but significantly influences the variation in time of the tone mood. The mean change the DAD and ZBI  before and after the Cogsclub frequency, although positive, does not reach a level of statistical significance.There is a significative difference within the subijecs regarding quality of life as judged by the PWD  ( QoLAD for PWD F= 20,606; p = 0.001) and the quality of life as perceived by the caregiver (QoLAD caregiver ; F= 6,448; p = 0.039) after Cogsclub frequency.Further research is necessary to verify the beneficial effects of these multidomain psychosocial interventions and its effectiveness compared with other models such as Dementia Day Center or Meeting Centers.

PO1.41. A shared experience network for Vienna

ROESLER Petra, HALLWIRTH-SPOERK Christina

In 2014 CS Caritas Socialis (a medium-sized provider of dementia care in multiple settings, hospice care and other social services) started Vienna’s first network for a dementia-friendly (3rd) district. As in other such initiatives, awareness building, information and fostering participation were among the main goals.

By inviting and involving various players (from other care providers, city administration, drugstores, parishes, libraries to hospitals and many others), they managed to build a network of trust and common interest with various short- and medium term effects:

  • A master thesis about the interests of people with dementia in the city led to the establishment of Vienna’s first self-help group for people with dementia.
  • An information fair was held at a central shopping center.
  • Dementia-friendly church services as both Catholic and ecumenical services.
  • An “action week” where each network partner offered a special, inclusive service, e.g. a “walk of memory” or a dementia workshop for small children at the library.

After roughly 12 months, CS Caritas Socialis identified another (the 23rd) district for a roll-out of their network model. Building on the experiences from the 3rd district, a similar process was started with new players. The new network defined its own goals, ideas and rules and will instigate activities as it sees fit.

Another 6 months on, Kardinal König Haus (education & training) has expressed interest in developing a network for the 13th district. Players in other areas of Vienna are working on similar projects, and CS Caritas Socialis is currently defining criteria for passing on its well-established logo (“Demenzfreundlicher Bezirk”) and process know-how to partners who share goals and ideas, i.e.:

  • awareness building, de-stigmatisation and participation
  • Involving people with dementia and their relatives in the process wherever possible
  • Putting the emphasis on long-term networks rather than short-term publicity

By passing on their process know-how, their experiences and best practice, CS Caritas Socialis will facilitate a common direction for dementia-friendly initiatives, common learning, mutual trust and easy access for all those affected and interested. As the model is adapted to each district with its very specific population, culture and mix of players, feedback and new ideas will trickle down to all other projects around Vienna.

PO1.42. A dementia friendly society

FRY Ingrid Rise, KIIL Randi

Background: Inspired by work with dementia friendly communities in Scotland and England, Norwegian Health Association started a program in this area in 2014.

Method: The process is organized so that mayors of Norwegian municipalities sign a collaboration agreement with Norwegian Health Association. In this agreement they, as a community, commit to work towards becoming more dementia friendly, and take certain steps to facilitate this process. Municipalities who sign the agreement are given permission to use the campaign logo. We also provide this as a sticker for companies where personnel have participated in dementia awareness workshops.

The first step is to establish a working group that develops a local plan for the process of becoming more dementia friendly. We emphasize that these groups should include people with dementia and/or carers.

Norwegian Health Association delivers educational material to hold local dementia awareness workshops. This includes brochures, film, and a power point presentation. The aim for this material is to enhance knowledge and commitment among service personnel in public and private sector in order to better understand and support customers with dementia.

Results: By the end of April 2016 Norwegian Health Association had signed agreement with 36 municipalities. Dementia awareness workshops have been held for a range of different groups in these municipalities, among them taxidrivers, shopassistants, employees of libraries and pharmacies, in addition to pupils in schools. We would like to show three of these municipalities, Løten, Bærum and Tromsø and the dementia friendly work that has been going on there.

PO1.43. Dementia-friendly Aalborg

NIELSEN Karin Boye, SVENDSEN Pia Christina

In the Municipality of Aalborg we aim to achieve the goal of 4000 dementia friends, as a part of a larger project towards becoming a dementia-friendly society and breaking taboos concerning dementia.

We are doing this by involving volunteers, the civil society, church deaneries, relatives to people with dementia and employees in the municipality.

The Dementia-friend campaign in the Municipality of Aalborg.

Elements in the dementia-friend campaign are:

  • Social Medias; primarily Facebook and the official webpage for the Municipality of Aalborg.
  • Newspapers and other publications
  • Information screens in busses and libraries
  • Exhibition stand (hand-outs and face-to-face recruitment) at official gatherings in the Municipality,
  • Interviews in the radio
  • Face-to-face recruitment
  • Lectures on dementia and dementia-friendly society at staff meetings etc.

We have found it important to reach many different groups of people and sectors, e.g. caregivers, schools, police, merchants etc.

The campaign has primarily communicated more knowledge and understanding about dementia diseases in the civil society. The aim is to make people feel more at ease and helpful when meeting people with dementia.

Initiatives made independently by Dementia-friends in Aalborg:

  • Excursions for people with dementia and their relatives
  • Art exhibitions by a woman with dementia
  • Collaboration with libraries - small presentations on dementia on their weekly “Health day”

PO1.44. Do we need a global symbol for dementia friendly communities?

JACOBSEN Wienke, WALTON Clare, BOOI Laura, NEWMAN Kristine, HU William

Dementia Friendly communities empower people with dementia to have high aspirations and feel confident, knowing they can contribute and participate in meaningful. Dementia Friendly initiatives are emerging around the world and many of them use a symbol or a brand to promote their activities.

Some dementia advocates have highlighted the need for a Dementia Friendly symbol that has global recognition. This could connect Dementia Friendly efforts across regions and countries and help people with dementia and caregivers to recognize the symbol when they travel. The World Young Leader in Dementia (WYLD) have completed a review of Dementia Friendly symbols currently in use around the world and collected attitudes towards the concept of developing a global Dementia Friendly symbol.

Survey responses were received from 21 representatives of 16 countries, 15 of which have at least one Dementia Friendly initiative in place. A wide range of symbols are already in use. The concept of “not forgetting” can be found in symbols using the forget-me-know flower, the elephant and a knot. Three main colour groups are represented: orange (mostly in Asian nations), purple, (mostly in North America) and the blue/yellow combination (forget-me-not).

No survey responders rejected the idea of a global Dementia Friendly symbol. Fewer people favoured a global symbol (29%) than a global theme or element (67%), i.e. a colour, logo or design that can be incorporated into existing symbols or adapted for different regions. A second consultation at ADI Conference 2016 gave an opposite view, with 65% of responders favouring a global symbol and 28% favouring a global element or theme. A key reason for this difference could be a separation of views between nations that already have a well-established symbol and those that do not. Further results from WYLD’s scoping review will be presented.

PO1.45. Cueing autobiographical memory retrieval in people with dementia: Do museum-based reminiscence sessions promote wellbeing in people with dementia?

OVERGAARD Susanne, ERLINGSSO Christen, DAVENPORT Bruce, MASON Rhiannon, GALANI Areti, BERNTSEN Dorthe 

The EU-funded `AHA – Active Aging and Heritage in Adult Learning’ project involves 5 open-air museums: Den Gamle By (Denmark), Jämtli (Sweden), Maihaugen (Norway), Beamish (UK) and Szentendre (Hungary). The project addresses how museums can take active part in dementia care and contribute in making our societies dementia friendly. The project includes an evaluation of the impact of heritage-based reminiscence sessions in these museums on people with dementia and their caregivers. The evaluation is an international and multidisciplinary collaboration between Aarhus University, Denmark (Psychology), Linnaeus University, Ôstersund, Sweden (Caring science) and Newcastle University, UK (Cultural-heritage science).

During a session, 3-4 persons with dementia and accompanying carers visit a historically correct re-created mid-20th Century living space that should coincide with the ‘reminiscence bump’ amongst the people with dementia. Participants encounter familiar experiences and objects and will see, hear, taste and smell the past and engage in conversation. During the session, participants eat, sing and engage in activities. Theme-related objects are passed around and handled by the persons with dementia in order to evoke memories, generate conversation, and telling of anecdotes. Additionally, the manner of heating, cleaning, and preparing food matches the era in order for visitors to have multisensory exposure.

We hypothesize that this will promote wellbeing. A wellbeing observation toolkit was used to create questionnaires capturing the perceived impact of the reminiscence session from the perspectives of participants and session facilitators as quantitative data and qualitative data (free text comments and interviews). Data will be gathered from 132 participants (people with dementia) and their carers from across the 5 museums. Although data collection has not finished and analysis is ongoing, the first preliminary results show a distinct trend that both persons with dementia and their accompanying carers enjoyed and appreciated the session and reported overall positive experiences. 

PO1.46. New trail – an activity service involving younger people with dementia in early state

WESTERBACK Camilla, CLAUSEN Laila Catharina, ECKERMANN Ane

Background: Many studies show that active participation, social interaction and physical activity is important for people with dementia to maintain physical and mental resources. Most activities for people with dementia in Denmark is for the elderly and for people with dementia at a later stage. New trail was established to empower younger people (<65) with dementia to remain being active in their own life by involving them in planning activities that are meaningful to them, thereby promoting their quality of life.

Methods: In the period 2012 to 2016 the project was carried out. The project is facilitated by a project manager, a project assistant supported by volunteers. Twice a week activities are carried out in cooperation with the participants. The activities can for example consist of music, nature walks, cultural experiences, exercise, lectures, café visits, cooking, ect.  

The project is evaluated annually using questionnaires targeted the participants and their relatives, interviews with the participants and systematic registration of participation. The results of the evaluation are used to develop the project.     

Results: Present evaluations show that there is great satisfaction in participating in the project. More than 80% of the participants express that they feel involved, have influence as well as they are more social than before. There has also been a strong interest for participation in the project also for older people with dementia at an early stage. The great success and demand for the project means, that the Danish Alzheimer Association will continue develop the project to become even better at involving people with dementia to take action in own life. 

PO1.47. The MinD European project: The development of a mindful design to improve self-empowerment and social engagement in people with dementia

TOURNIER Isabelle, FERRING Dieter, ALMEIDA Rose, BLACKLER Thea, CASALDALIGA Pau, CID BARTOLOME Teresa, COLESTON-SHIELDS Dons, CRAVEN Michael, DENING Tom, ESCOBAR Gara, GRIFFIOEN Ingeborg, GOVE Dianne, HOLTHOFF-DETTO Vjera, LEBIS Evelyn, LUDDEN Geke, NOTENBOOM Ed, POPPOVICH Vesna, WÖLFEL Christian, ZANAZI Michele, NIEDDERER Kristina

MinD is a four-year project financed by the European Union Horizon 2020 Marie Skłodowska-Curie Research and Innovation Staff Exchange (RISE) programme and will run until February 2020. This project aims to improve self-empowerment and social engagement in people with dementia (see http://designingfordementia.eu/). These aspects are known to be strongly and prematurely challenged during the course of disease and to have a negative impact on the wellbeing of people with dementia. The innovative approach of MinD is to utilize the concept of mindful design to develop novel solutions enabling self-empowerment and social engagement. The idea of mindful design refers to the attentiveness of the user towards the consequences of their actions performed with an object, encouraging behavioural changes and adaptation by reconsidering actions and their causes (Niedderer, 2014). The main targets are the development of wearable devices supporting identity perception and emotion management as well as to understand how environmental aspects can improve self-empowerment and decrease cognitive overload feelings. To do this, theoretical frameworks about mindful design and a holistic model of dementia care will be performed to develop innovative design solutions. People with dementia, their carers, but also stakeholders, will be solicited to test the developed prototypes and design proposals. This testing will be performed via a robust methodological framework combining questionnaires, interviews, and situation testing. This groundbreaking project is possible through the partnership of academic and non-academic experts on dementia care, product and environmental design, and information and communication technology. The expected outcomes are the development of new uses of design to help improve the subjective well-being of people with dementia and to engage them socially.

PO1.48. “Together against dementia”: experiences with destigmatisation campaign

GRNIAKOVÁ Darina, BRANDOBUROVÁ Petra, ADAMOVIČOVÁ Simona

In Slovakia exact statistics regarding the incidence of dementia do not exist, but according to estimates there are about 60,000 people living with dementia and about 150,000 dementia caregivers, who are faced with a number of prejudices, myths and stigmas. This is why the preventive and educational campaign “Together against dementia”, aiming to increase knowledge and provide information about dementia, has been started. The survey including perceptions and image of dementia as perceived by carers of persons with dementia has been realised. The results confirmed the assumption that there is a need for clear, accessible information that gives public an accurate understanding about dementia and how it impacts on the person with dementia. A new website to meet the information needs has been made available and a guide book has been published for caregivers of people with dementia, which discusses 11 main issues to be considered after someone is diagnosed with dementia. As part of this project, the event “Days of open mind” was organised at the Centre MEMORY - a specialised facility for people with dementia and memory problems. People with dementia, their families, caregivers and other members of the general public had the opportunity to hear lectures, experience different therapies, test their own memory and to share and talk about their issues- the message being that we can talk about dementia and find people with similar problems to our own. We have come together to stimulate the conversation around the causes of the stigma, range of insights and experiences faced by people with dementia, and to move towards addressing what actions and interventions are required to reduce stigma and promote a positive awareness of dementia.

PO1.49. POSitive About DEMentia – How to support a positive approach to people with dementia in the educational context

KOHLMAYR Sibylle, GEBHARD Doris, MIR Eva, COLLIER Elizabeth, HEASLIP Vanessa, DE VUGT Marjolein, KLINKENBERG Inge, DE JONG Nynke, JOHNSON Martin

Worldwide, 47.5 million people have dementia, with 7.7 million new cases diagnosed each year (WHO 2016), as such there is a strong need for special education programs in this area. Formal and informal caregivers, other health professions, managers of health care facilities as well as policy makers or other professions working with this target group should be empowered to support people with dementia to have a good life.

Against this background the multi-lateral Life Long Learning EU-project POSADEM was launched in September 2013 to develop a transdisciplinary education program in the field of dementia care. An international consortium, including experts from Austria, Finland, Ireland, United Kingdom and the Netherlands, developed an education program from participation with people with dementia and their caregivers. Three modules represent the core elements of the program with focus on the topics `Living with dementia: Personal Perspectives` (module 1), `Living with dementia: Societal Perspectives` (module 2) and `Living with dementia: Innovation and Leadership` (module 3).

Module 1 was developed by the Bournemouth University, the Carinthia University of Applied Sciences, the Maastricht University and the University of Salford. The aim of this module is to generate a positive and resource-orientated framework that enables students to support people with dementia to live a good life. Due to the interdisciplinary and international perspective of the module team, innovative learning materials were developed. Module 1 focuses on the life with dementia from the individual´s perspective and on the relationship between people with dementia and their formal and informal caregivers. The learning materials offer a variety of didactical methods and tools, like online lectures, videos, vignettes, research articles and checklists.

From January to March 2016 module 1 has been piloted. Students from each partner university worked on the learning materials during a 10-weeks online course provided on the platform Moodle. Online discussion boards and weekly live video sessions enabled an international exchange and gave students the opportunity to get some feedback from the lecturers. After the piloting phase the students had to rate the learning materials and the online platform by using a predefined questionnaire. The 6 participating students spent 161 hours on average for piloting module 1. The highest ratings on a 4-point-scale (1=strongly disagree, 4=strongly agree) got the diverse learning environment (MV=3.83, SD=0.37) and the good possibilities to reflect the contents (MV=3.66, SD=0.47). The interaction with other students (MV=2.17, SD=0.69) and the navigation through the learning materials (MV=2.33, SD=0.94) were rated lowest. Using a 5 point-scale (1=very satisfied, 5=not satisfied at all), the all in all experience was rated as satisfying (MV=2.16, SD=0.37).

So far, the POSADEM education program is a successful example for the transdisciplinary development of resource-orientated learning materials. Furthermore, the intercultural and interdisciplinary composition of the POSADEM project team offers the opportunity to walk along new educational pathways in the European context.

PO1.50. General practice based psychosocial interventions for supporting carers of people with dementia: a systematic review

GREENWOOD Nan, HASSENKAMP Anne-Marie, PELONE Ferruccio

Background: Much of the support for people with dementia comes from unpaid carers. Although often rewarding, the carers’ role is frequently challenging and carers may need both informal and formal support. General practice is often the first point of contact for people with dementia and their carers, making it potentially an important place to find support.

This systematic review synthesised the available evidence published in English for the impact of supportive psychosocial interventions for carers provided in general practice.

Methods: PRISMA guidelines were adopted and seven electronic databases including MEDLINE; EMBASE; the Cochrane Library; PsycINFO; CINAHL Plus were searched.

Results: 2489 results were identified with four studies, involving 447 carers, fitting the inclusion criteria. Three studies came from the USA and one from Spain. Study quality was fair to good.

The interventions focussed on improving carer mental health, dementia knowledge, caregiving competence and reducing burden, primarily by the provision of information and educational materials. Overall the evidence suggests that these interventions may improve carer well-being and emotional health but the impact on physical health and social variables was less clear. However, the diversity of the carer outcomes and the measures adopted in the research means that the findings must be viewed with caution.

Conclusions: Unpaid carers pay an essential role in caring for people with dementia and the dearth of literature investigating the impact of general practice based supportive interventions for them is surprising. The available evidence suggests that it may be possible to offer support for carers in general practice but future research should consider focussing on the same outcome measures in order to allow comparisons across interventions. Furthermore, all interventions should be developed in consultation with people with dementia and their carers.

PO1.51. Barriers and facilitators for male carers in accessing the help and support they need: a literature review

GREENWOOD Nan, SMITH Ray

Background: Unpaid, informal often family carers play an essential vital role in supporting people with long-term conditions such as dementia. Although often rewarding, being a carer can be challenging, especially for those caring for someone with dementia.  Carers would often like support but they frequently fail to get the help they need. Much of the research investigating the experiences of carers focuses on female carers, whilst research with male carers remains underdeveloped. Evidence suggests male and female carers have many experiences in common but some research suggests that compared to females, male carers are even less likely to access services. The aim of this systematic literature review was therefore to bring together research investigating adult male carers' experiences of accessing formal and informal support focusing on the barriers and facilitators.

Methods: Nine health and social care electronic databases were searched (e.g. CINAHL Plus, PsychINFO, PubMed, Social Policy and Practice). Reference lists of selected articles were also searched.

Findings: Seven relevant studies (five qualitative and two quantitative) were identified. Most studies investigated the experiences of male cares supporting partners with dementia. All the studies came from North America. All seven studies described barriers to accessing support and only three highlighted facilitators. Male carers saw caring as their responsibility and were committed to their role, but were often hesitant about seeking help. Insufficient information about available services was frequently emphasised. Participants highlighted positive past experiences and voluntary sector or professional support in providing information and helping access services.

Conclusions: Research into male carers' experiences in accessing support remains underdeveloped. Research that distinguishes between, for example, the experiences of spouses and sons and with direct comparisons between male and female carers is needed. Whether gender specific services would benefit male carers remains undetermined.

PO1.52. Systematic review of positive psychology outcome measures for family carers of people with dementia

STANSFELD Jacki, STONER Charlotte, WENBORN Jennifer, VERNOOIJ-DASSEN Myrra, ORRELL Martin

Introduction: The importance of positive psychology in understanding the wellbeing and experiences of family carers of people with dementia is increasingly being recognised. Despite this, outcome measures used in research with family carers of those with dementia are often centered on concepts such as burden and depression, which creates a negative perception of the experience of caring. There is a scarcity of positive psychology measures developed for or validated in this population (Tarlow et al., 2015).

Aim: By employing standardised criteria, this review aimed to assess the quality of positive psychology measures developed for or already in use with family carers of people with dementia and to determine their potential utility in future interventional studies.

Methods: We performed a systematic review of positive psychology measures for family carers of people with dementia. The databases searched were PsychINFO, CINHAL, MEDLINE, EMBASE and PubMed. Two reviewers independently assessed full-texts for inclusion and performed a quality assessment of each of the scale development studies identified to examine the psychometric properties reported.

Results: This review identified 10 positive psychology outcome measures (and 6 validation papers of these scales) within the constructs of self-efficacy, spirituality, resilience, gain, and meaning.

Conclusion: Several outcome measures were identified that may have potential utility for future interventional studies, but it is clear that there is still work to be done to develop and refine more positive psychology measures for this population. A lack of reporting of the psychometric properties by development authors limited the conclusions that could be drawn. It is recommended that authors aim to report this in the future.

PO1.53. Exploring the experiences of volunteer peer supporters and befrienders for carers of people with dementia

SMITH Raymond, GREENWOOD Nan, MACKENZIE Ann, DRENNAN Vari

Background: Volunteer led befriending and peer support is used across a wide range of services for people with varying health conditions. Despite such services for carers of people with dementia increasing in number, there is little research exploring the experiences of the volunteers who deliver these interventions. This research aimed to explore the experiences of volunteer peer supporters and befrienders, many of whom are former carers of people with dementia.

Methods: Participants were recruited through voluntary sector organisations which offered either peer support or befriending services. All services were based in Southern and Central England. Data collection took place between March and July 2014 and involved conducting in-depth semi-structured interviews either face-to-face or over the telephone. Data were analysed for themes using framework analysis.

Findings: Analysis of 10 in-depth interviews with 7 befrienders and 3 peer supporters revealed volunteers gained emotional and social support from the carers. They perceived a ‘two-way’ flow of support between themselves and the carers and that these mutual benefits were a strong reason for choosing to volunteer. Additionally, experiential similarity helped facilitate a mutually beneficial relationship. Volunteers also reported satisfaction and enjoyment from their roles, and former carers talked about how it enabled them to reintegrate into society after caring had ended. However, some volunteers described challenges with their role, such as difficulties in knowing how to respond when carers become emotionally distressed and the bringing back of painful memories from their own past caring experiences.

Conclusion: Peer support and befriending can offer benefits to the volunteers delivering the interventions. However, benefits are facilitated by the experiential similarity of the carers and volunteers. Future research should seek to investigate the impact of these services on volunteers who are former carers of people with dementia to establish the benefits and detractors for this under researched group.

PO1.54. A shortcut to the past: Object-cued autobiographical memory recall in Alzheimer’s disease

KIRK Marie, BERNTSEN Dorthe

The present study examines whether is it possible to optimize autobiographical memory recall in Alzheimer’s disease patients by manipulating the sensory richness and concreteness of the memory cues, i.e. objects versus their verbal referents, at the time of retrieval. Overall, results suggest that strong and distinctive environmental cueing diminishes the impact of cognitive dysfunction on autobiographical memory retrieval in Alzheimer’s disease and create a shortcut to the past. Alzheimer’s disease patients retrieve significantly more memories when they are cued with objects, e.g. a skipping rope, a bottle of perfume, as opposed to their verbal referents, e.g. the word ‘skipping rope’ or ‘perfume’. Results furthermore demonstrate how object-cued memories contain a significantly higher degree of autobiographical content than word-cued memories. The results have novel and practical implications as the present study is one of the first to demonstrate how autobiographical memory retrieval in Alzheimer’s disease can be significantly improved provided this group is offered distinctive and sufficient cueing with the help of objects from their past. Because of its central functions in daily life, improving autobiographical memory may reduce apathy, increase well-being, personal integrity and level of functioning. Findings could furthermore have direct implications for the organization of care environments: How can they be arranged to optimize autobiographical remembering and potentially minimize depersonalization and estrangement.

PO1.55. Use of Montessori-based activities in residential care for persons with dementia

LEVICKA Katarina

Montessori activities are based on the principles of Italian educator Maria Montessori. These principles involve teaching of cognitive, social and functional skills. The main idea of the activities is to build them up on the actual skills and possibilities of the participant, based on each individual’s strengths, interests, and needs. Tasks are divided into separate steps, based on repetition which allows the person to progress from simple to complex and from concrete to abstract.

Montessori principles are focusing on the implicit or procedural memory, which are less affected by dementia than the other types of memory. By working with the repetitive muscle memory and multiple senses therefore Montessori-based activities help to reestabilish recognition skills and enhance memory.

Montessori-based activities are showing good results in improving person’s engagement, reducing disturbing behavior and enhancing mood.

Most of the Montessori-based activities are focusing on an individual but they can be applied also in small groups. Applying Montessori-based activities includes providing meaningful activities, supporting maintaining roles of persons with dementia, so they are able to make meaningful contributions to their community and have to opportunity to maintain, and even restore function. Montessori principles and implementing environmental adaption’s, thus supporting the fit between person and his/her environment. Therefore we consider Montessori-based activities a good way to innovate dementia care in residential settings.

We are describing some of the basic principles of applying Montessori-based principles to residential care for persons with dementia as well as examples of some of these activities, how to provide them in residential care settings.

PO1.56. Adapting practice to recruit from ‘Join Dementia Research’

SMITH Adam

Join Dementia Research (JDR) is a national service that has been set up in the UK to facilitate the identification and recruitment of people to dementia research studies. In April 2014 the service has over 17,500 volunteers registered, and has recruited over 5,000 people into dementia research studies.

The service is promoted to volunteers both inside and outside the NHS. Volunteers are asked to provide information about themselves and their health, enabling them to be matched to potential studies.

Most studies traditionally recruit volunteers in specialist memory clinics within NHS Trusts. Here the research team are in contact with people during and immediately after diagnosis and have the benefit of patient medical notes.

Recruiting to dementia studies from JDR reduces the time taken waiting for the matching volunteers to come through clinic, it also improves public access to research. However, there is a significant change to working practices to benefit from these potential benefits.

A 12 month review of the service has highlighted various challenges and differences that should be considered when recruiting to studies from cohorts or registers:

Capability, studies teams were not always prepared / hadn’t planned resources to support recruitment is a shorter time frame.

Remote Screening, telephone screening needs to be comprehensive and high quality and conducted at the right time of day, when volunteers are at home.

Physical Space, having access to a telephone, computer and quiet space.

Researchers were not always confident in discussing studies over the telephone.

Where these aspects were considered, study recruitment has improved – four study examples recruited between 30-50% more volunteers where working practiced had been adapted.

Recruiting from a register means changing the way we work.

PO1.57. Perceptions of first-degree relatives of Alzheimer's disease and source of information in an Asian population

FOO Nadine, TONG Kamun, MERCHANT Reshma

Background: With an aging population, the prevalence of Alzheimer’s disease is increasing. Successful management involves close involvement of family members. We aim to examine family members’ insight into AD, and their sources of information.

Methods: This study was done in an outpatient setting. 22 first-degree relatives of patients with a diagnosis of AD were interviewed by the same assessor. The survey covered demographics, their sources of information, knowledge confidence, beliefs on the causes, treatment, and risk of developing AD. Collated results were then reviewed.

Results: Majority of relatives were aged between 50-69 (68.2%) and ethnic Chinese (72.7%). They obtained most of their information about AD from the internet (27.3%), friends/support groups (27.3%), books and magazines, and doctors.

54.5% of subjects reported that they felt “confident” on their knowledge of AD. Of which, 80% were from the “books and magazines” group.

81.8% listed chemical changes in the brain as important in “causing” AD. 100% of “information from doctors” group reported this.

Low education/occupational attainment was rated as the least important cause among all patients (86.4%). 100% of “most information from internet” reported this.

4.6 % felt that drugs to prevent AD were likely to be developed in the next 5 years, and all were from the “friends and support groups” cohort.

59.1% reported that they were “very concerned” about themselves developing AD, and of these, 83% were from the “friends and support group” cohort.

Conclusion: This survey has shown varying concerns and perceptions of first-degree relatives, depending on where they received most material from. More should be done to provide adequate information to the family of AD sufferers by the health care providers.

PO1.58. Perceived stigma of persons with dementia after six months psychosocial intervention in the Meeting Centres Support Programme

URBAŃSKA Katarzyna, SZCZEŚNIAK Dorota, MEILAND Franka, FARINA Elisabetta, D’ARMA Allessia, GAMBERINI Giulia, EVANS Shirley, EVANS Simon, HENDRIKS Iris, BROOKER Dawn, CHATTAT Rabih, DRÖES Rose-Marie, RYMASZEWSKA Joanna

Introduction: Persons with dementia can feel stigmatized due to their progressive impairments which may lead to social rejection, internalized shame and social isolation (Burgener & Berger, 2008). There is much theoretical knowledge about stigma in dementia but empirical data on stigma is largely lacking, especially in non-English speaking countries. Aim of the study is to evaluate the experienced stigma by persons with dementia participating in the Meeting Centres Support Programme (MCSP). This psychosocial intervention, that supports people with dementia and their carers, is developed in the Netherlands, and was adapted and implemented in Italy, Poland and the United Kingdom (UK) in the JPND-MEETINGDEM project.

Methods: The level of stigma among all Meeting Centres’ users with dementia (n=60) in Italy, Poland, and the UK was measured by The Stigma Impact Scale (Burgener & Berger, 2008) at the start and after 6 months of participating in MCSP. Additionally, data on background characteristics, stage of the disease (GDS, Reisberg et al. 1992) and social support (The Duke Social Support Index, 1993) were collected.

Results: Preliminary baseline results show that the level of stigma is negatively associated with the satisfaction with social support. Perceived stigmatization differs at different stages of the disease. We found no correlation between age and perceived stigma, and no significant differences in perceived stigma with respect to gender, nationality or other background characteristics. It is hypothesized that after 6 months of participating in MCSP, the perceived stigma will be lower because of an increased satisfaction with social support.

Conclusions: The differences in background characteristics such as country of living, age etc. do not seem to play a significant role in the experienced stigma in persons with dementia. However, the experienced social support does, and may be influenced by adequate psychosocial support of the people with dementia and their families.

PO1.59. Polish adaptation of the stigma impact scale for people with dementia – pilot study report

URBAŃSKA Katarzyna, SZCZEŚNIAK Dorota, RYMASZEWSKA Joanna

Introduction: Knowledge of dementia, identification of early symptoms and timely diagnosis are still very low in Poland. Another problem is that dementia is often seen as a normal experience of ageing rather than an illness. People are usually diagnosed with dementia at moderate stage. Although people with dementia may experience the stigma, there is lack of proper instrument to measure the level of stigmatization for people with dementia in Poland.

Objectives: The aim of the study is to adapt the Stigma Impact Scale (Burgener & Berger, 2008) in Polish sociocultural context and assess the level of stigma in a pilot study.

Material and methods: The Stigma Impact Scale: neurological impairment already used for people living with dementia was translated into Polish within the MeetingDem Project. The instrument consists of 21 items shared into three subscales: Social rejection, Internalized shame and Social isolation. The pilot study was conducted among the Meeting Centre participants and people not using the day care service (n=30). They were people with MCI, mild and moderate stage of dementia. After first measure the modified version of the scale was created using an expert panel review including specialists as well as people living with dementia and their informal carers. In the second part of research the level of stigma among people with dementia in Poland will be measured using the modified SIS scale. This will then be examined along with clinical, psychological and sociodemographic variables to see if there is any correlation.

Results: The poster will present the process of adapting the Stigma Impact Scale in Poland. 

Conclusions: The Polish adapted and modified Stigma Impact Scale for people with dementia will allow to measure the experience of stigma in Poland and to translate this important area of dementia knowledge into research, and further into practice.

PO1.60. Forms and functions of the representation of dementia in contemporary anglophone literature

CHRIST Susanne Katharina

The project aims to explore the potential of fictional literature in the narration of dementia. It will investigate three specific areas: (1) the particular knowledge about dementia that fictional literature can produce (2) the ways in which the narrative text produces this knowledge and (3) its cultural significance in current discourses. To this end, a corpus of contemporary European and North American literary fictional texts has been selected for analysis. A narratological approach will provide insight into both histoire and discours of an emerging body of dementia narratives in the industrialised West. The findings will be discussed with regards to both the current cultural discourse on mental illness, disability and age, and the potential of literary representation and humanities’ research to offer a different perspective on the complex phenomenon of dementia.

PO1.61. With Blue Bracelet towards dementia friendly community

CVETKO Tatjana

Background: Trend of dementia treatment in community care is that patients with family support and appropriate assistance of social services remain in homecare as long as possible. Patients are encouraged to perform independently all the tasks they are capable and participate in public using public services. For the successful integration of patients in public life, it is important that the disease and its peculiarities are recognized in the society. Presenting braceletes and specifices of communication actually we present the importance of proper ommunication with patients with dementia. Appearance of blue story about dementia in the community means a beginning of broader systematic information and communication.

Aim:  to raise awareness in public about the problems which might occure with the inclusion of patients with dementia in public life.

Methods: Designing of blue bracelet as a discrete visual communication tool for patients with cognitive decline who have difficulty in communicating.

Results: Promoting blue bracelets on 20 various public events in 3 months as European conference, memory walks, meetings and lectures on dementia for lay public and professional public, public projection of the movie and other media we stimulate reflection in the lay and professional public about the situations that occur in everyday life in contact with people with dementia. . We launched and donated 700 bracelets to patients with dementia in all regional nursing homes. As bracelets are discrete, relatives and patients accepted them without concern of stigmatization. Blue story continues next year with blue pendant.

Conclusion: Project of knowledge about dementia offers solutions that allow patients with cognitive decline to participate in public life as they alert to their difficulties in communication or behavior with blue bracelet.

PO1.62. How do proxies of people with dementia make decisions on their behalf – substituted judgement or best interests?

FETHERSTONHAUGH Deirdre, McAULIFFE Linda, BAUER Michael, SHANLEY Chris, BEATTIE Elizabeth

The decision-making capacity of a person with dementia has been shown to decrease as the severity of the dementia increases. Eventually, the person with dementia will reach a stage where they are no longer able to make decisions for themselves. At this point, major decisions (e.g., moving into residential care, being transferred to hospital from residential care, consenting to an operation, and deciding on end-of-life care) become the responsibility of someone else, typically a family member or a legally appointed proxy.

This presentation will discuss how proxy decision-makers of a person with dementia make decisions on their behalf. Thirty four semi-structured interviews were undertaken with proxy decision-makers of a person with dementia (either legally appointed or else recognised as the ‘person responsible’) who had already made a major life decision on behalf of a person with dementia. A mix of proxy decision-making methods was reported, and included both the substituted judgement standard and the best interest standard, which were applied to a range of situations.

This presentation will also discuss how the proxy decision-makers were supported (or not) in their role and will provide recommendations on how they could be better assisted.

PO1.63. Cognitive improvement in people with dementia

ALBERG SØRENSEN Kim Michael, KOUSGAARD HANSEN Helle

 The aim of this study was to investigate whether people with early-stage dementia are able to obtain new knowledge, improve on, learn new skills and maintain this knowledge and these skills for a period of time (minimum 12 weeks).

The study took place at VUK-Aalborg, Denmark, which is a school for adults with cognitive problems. VUK-Aalborg has offered cognitive stimulation and training of normal day activities to people with early-stage dementia since 2001 – currently 37 students with dementia attend VUK.

The study engaged 12 students with Alzheimer’s disease, who were aged 59-82 (average age 72), with a MMSE score of 14-29 (average score 21). Seven different cognitive activities were completed and tested, with one activity run per week for a period of 12-14 weeks. The seven activities were run over a 15-month period with regular testing on each activity being undertaken.

The tests measured visual memory, auditory memory, tactile recognition, short-term memory, working memory, vocabulary mobilisation and the ability of transforming elements to a whole.  

The activity method was based on the use of repetition, and testing showed improvements in the students’ performance across all seven aptitudes, with a variation of the number of students improving in each test from 43-100%. For example did 100% of the students show improvement in the test of visual memory, while 86% of the student showed improvement in the test of tactile memory.

The results and the learning from this study have been used in the development of educational material for the students with dementia at VUK-Aalborg – with the purpose of helping people with dementia to maintain their abilities for as long time as possible.

Please notice that this study links well with Alison Ward’s (University of Northampton) and Diana Schack Thoft’s (UCN) presentations – both studies performed at VUK-Aalborg.

PO1.65. How to create a home with help from people with dementia?

NEVSTRUP ANDERSEN Lise

In the daily life of people with dementia living in a nursing home and specialized dementia- ward the occupational therapist (OT) can be one of many who help the person with dementia to achieve a fulfilled and satisfied state of life. The OT focus much of the work on identifying and eliminating the environmental barriers to independence and participation in the daily life.

With the help from the elderly people with dementia we learned more about the outdoor environment and what kind of choice to make when the garden should be re-designed related to the Eden-philosophy and to a more supportive and dementia friendly surrounding.

Furthermore we learned about the indoor environment and what kind of creative achievement and art on the walls in the long corridors the elderly person with dementia preferred. We did also learn that the people who live in the nursing home and with dementia are unique individuals who can tell or show us what is beneficial for them. We learned that on one hand what could be good for one person could be opposite for another person – thus we have to find ways where we give the best support for a group of people who use the same common room or garden.

The methods used are observation information gathered during the use of the gardens and selected rooms in the nursing home and also when we introduced items who fitted to the garden activity or to the indoor tasks. The behavior of the persons with dementia were observed and photographed and highlighted when the environment gave 1) a positive stimulation, 2) an intention to do a task, 3) a subject to talk about and 4) a positive contact between the persons living in the nursinghome or relatives or staff. The methods are not scientific. We got useful knowledge about bad-fit design and positive stimulated environment.

PO1.67. “France Alzheimer listens to the people with dementia”

JAOUEN Joël

The key issues in the 2015 survey launched by France Alzheimer and related diseases were to listen to people with dementia, not to speak for them, to be attentive to what they have to say about the disease, their difficulties and their needs. 

So far, there have been few endeavors seeking to inquire into the voices of those who are sick.  This approach is one of its kind.  A few qualitative studies have been conducted but never have those afflicted with the disease been approached to participate in a quantitative study.

A total of 1,400 questionnaires have been answered treating various subjects (perception, feelings, self-esteem, hardships, impact of the disease, social relationships and needs).  When replying, people with dementia were allowed to be accompanied by a close friend or relative, a professional or a volunteer (75% replied to this questionnaire with assistance versus 24% by themselves).

This survey has brought two key parameters to our attention:

Those who are people with dementia feel like they are still the same person as before, unique individuals, each with their own story, identity, sensitivity and needs. These are people who are full-fledged members of society, despite the disease and its repercussions, who are « still there », living with us and within our society.

These people learn to live in a way which goes over and beyond their illness, active from day to day through rich and stimulating social and family ties, activities, moments of leisure, relaxation and travel.

Again this demonstrates the crucial role played by families and close ones considered who are essential the support system.

This survey also underscores the absolute necessity of improving the quality of listening of the ill, who will never risk expressing their feelings if they do not sense the kindness and compassion of their listener.

France Alzheimer and related diseases strongly advocates for a society in which those affected by Alzheimer’s are heard, by acknowledging their feelings and having a better approach to the disease: an approach in which they have an active role in their own care.

PO1.70. How people with dementia and their carers access research findings and make practical use of them in their everyday lives

REHLING Tracey, SIXSMITH Judith, CORR Susan, CHARD Gill

This presentation considers the dissemination and implementation of dementia research, with particular reference to how people with dementia and their carers access research findings and make practical use of them in their everyday lives. This is an issue which receives limited coverage in the literature. Although there is a growing body of research identifying evidence-based interventions for people with dementia and for their carers, it remains unclear how effectively this research knowledge is disseminated and implemented beyond the systems responsible for the delivery of dementia care. Whilst the emergence of knowledge mobilisation and developments within the discipline of implementation science are informing current thinking about how research can better inform public policy and professional practice, a broader focus is also needed on how this knowledge reaches more diverse public audiences.

Drawing upon relevant literature and recent experience of developing a dissemination strategy for a UK dementia study, this presentation considers how people with dementia and their carers access research knowledge, assess its value to them and apply it. In light of this, researcher responsibilities in delivering an effective dissemination strategy that is empowering for this population are also explored. Whilst it is acknowledged that dissemination strategies may be influenced by the nature of the research, the intended audience, the priorities of the researcher or the expectations of funding bodies, alternative ways of ensuring the inclusion of people with dementia and their carers in this critical aspect of the research process are considered. Finally, recommendations are made concerning future research into this key issue, so that opportunities for people with dementia and their carers to benefit from the evidence-based practices that are potentially useful to them can be maximised.

 

 
 

Last Updated: Thursday 06 October 2016

 

 
  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

Options