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PO4. Rights and dementia-friendly society

Detailed programme, abstracts and presentations

PO4.1. Factors associated with participation in neuroimaging among individuals with mild cognitive impairment

HUNSAKER Amanda1, LINGLER Jennifer2, TANG Fengyan2, ENGEL Rafael2, ROSEN Daniel2

1University of Zurich, Zurich, Switzerland, 2University of Pittsburgh, Pittsburgh, United States

High uncertainty regarding etiology and prognosis of mild cognitive impairment (MCI) makes participation in neuroimaging, including amyloid PET, of particular importance for individuals who have received a diagnosis of MCI. Knowing who elects to complete such testing, as well as who declines, points to areas for tailoring neuroimaging counseling protocols to best address individual concerns. We used data retrieved from an Alzheimer Disease Center registry based in the United States that logged participation in neuroimaging research from 2003 to 2013 among individuals initially diagnosed with MCI (N=105). The majority (n=66; 63%) participated in a brain imaging protocol. Almost half (n=51; 49%) experienced a change in diagnosis during the time period under investigation; 38 were diagnosed with dementia, 12 reverted to no cognitive impairment, and 1 was diagnosed with dementia then again MCI. Thirty-nine percent (n=41) had an active depression diagnosis in the past two years. We applied logistic regression to explore what factors related to neuroimaging participation. People who were younger, had a higher Mini Mental State Exam score, had experienced any change in diagnosis, and had not been diagnosed with depression in the past two years were significantly more likely to participate in brain imaging. Gender, race, education, having an amnestic MCI diagnosis, and presence of physical health problems were not significant in modeling. A change in illness status may create greater uncertainty for those who have already experienced the ambiguity of an MCI diagnosis, and spur interest in testing that may lessen diagnostic uncertainty. Individuals with MCI may experience a confluence of risk factors for dementia when depression co-occurs. This co-occurrence, along with the overall high prevalence of depression among individuals with MCI implies that those with MCI and depression who refuse brain imaging may be missing out on significant diagnostic information.

PO4.2. Developing an environment to safeguard the quality of life (QOL) and wellbeing of people with advanced dementia in the care home sector

HUGHES Sian, WOODS Bob, ALGAR-SKAIFE Kat, HEDD JONES Catrin, JELLEY Hannah

Bangor University, Wales, United Kingdom

Background: Increasing attention is rightly being paid to well-being and rights of people living with mild to moderate dementia, but we understand much less about how to identify and support well-being and human rights for those living with advanced dementia. The needs of people living with the illness in care homes, is an important yet under-researched area, both on a national and international scale.

Aim: To explore QoL and well-being of care home residents living with advanced dementia, and to understand how personalized care can continue to be achieved where the person is completely dependent on others for care, and may no longer be able to verbally communicate their wishes.  A second aim is to explore how choices and rights of individuals are upheld and how decisions are made within the best interest of the individuals

Method: This study is a mixed method design, integrating qualitative and quantitative methods, building on the work conducted in a Masters by Research project. We aim to recruit 50 people living with dementia, their carers and family members. Methods will include observations of residents and in-depth, interviews with relatives of participating residents and staff.

Outcomes: Preliminary outcomes highlight the importance of family involvement in care of residents living with advanced dementia. Further, human rights are not widely discussed within the homes and information regarding them are not readily available. Evidence suggests that the confusion surrounding human rights, coupled with a reluctance to discuss, has made their application within the care homes difficult. Residents in care homes are at their most vulnerable, and it is crucial that their rights are protected. These issues need to be addressed in order to create a positive cultural shift, whereby human rights are understood to be universal, discussed openly and are no longer associated with a negative bias.

PO4.4. Evaluating dementia inclusivity and reducing stigma in retirement communities

BOOI Laura

Ontario Retirement Communities Association, Montreal, Canada

Background/Objective: The Ontario Retirement Communities Association (ORCA) represents 95% of the retirement community (RC) sector in Ontario. ORCA contains 610 members’ homes and provides accommodation and services to more than 55,000 seniors. RCs are an attractive option for aging-in-place because they allow older adults to remain independent while still receiving minimal assistance, as well as have access to activities and socialization opportunities. The average age of residents in RCs is 85 years and because of this the rates of dementia within this sector is greater than the general public. Stigma related to dementia within RC has yet to be evaluated. This present study offers preliminary findings on the state of dementia related stigma within RC as well as offering viable solutions to reducing stigma through the development and implementation of ORCA’s Dementia Inclusive Program.

Method/Overview: All aspects of this study have and will continue to involve the participation and guidance of individuals who are currently living with dementia, including the expertise from the Ontario Dementia Advisory Group.

Results: A total of 320 staff members of RC completed an online dementia stigma survey. Findings reveal that almost all respondents (96.13%) believe there are residents living in their RC who currently have dementia. Most respondents (86.60%) agreed or strongly agreed that they believe dementia is a point of concern for their residents. Approximately half (51.9%) of respondents reported feeling that their communities were well equipped to support people with dementia.

Conclusion: Findings shed light on the fact that almost half of respondents expressed that they do not feel their communities are adequately equipped to support those living with dementia. The results from the stigma survey will help guide the development of ORCA’s Dementia Inclusive Program, an educational intervention for staff, residents and their families.

PO4.5. Music Cafe: the role of music performance in promoting a dementia friendly society

INNES Anthea, POYNER Christopher

University of Salford, Salford, United Kingdom

Music is a powerful way to connect people. This paper will report on a project conducted in partnership with the organisationMusic in Hospitals and Carewhere music cafes are held once a month at the Dementia Hub at the University of Salford. Professional musicians from different genres perform to an audience of people living with dementia and other community members on a monthly basis. The venue for the cafes is a specially designed 'Dementia Hub' designed on dementia friendly design principles to promote engagement and use of the space. The cafes are a social occasion and begin with coffee and cake. The music cafe sessions promote interaction and communication via the medium of music with participants choosing to dance, sing and use percussion instruments during the performances or to simply watch and enjoy the music. The music cafes are part of an ongoing evaluation examining the impact on well being for all participants. Evaluation methods used include observations - unstructured, and structured (using Dementia Care Mapping); interviews with participants and musicians. The benefits of these cafes, both the music and social elements, as perceived by participants, will be shared. Short video clips of the venue and the performances will also be shown to enable conference delegates to experience the set up and conduct of the music cafes that may be helpful for them to consider using in their own countries/settings.

PO4.6. Shared leisure programme addressed to people with dementia and their carers

CASTILLO Ana, DE LA CRUZ Laura, GARCIA Luis

FAE, MADRID, Spain

The present project is based on the creation of a recreational space enabled for relatives and people with Alzheimer’s and other dementias, in order to promote both the positive aspects of care and social network and create a space where participation and meeting is important. As in any type of dementia, it is necessary to incorporate a wide range of resources aimed at families, to provide adequate care for the patients and at the same time the self-care of the main caregivers. The activities that will be carried out will cover the characteristic demands of this type of collective, developing it in an adequate space to meet the needs of people with dementia

The objectives to be achieved with the realization of this project are the following:

Improve the relationship between caregiver and the patient by creating a joint play space.

Encourage the active participation of caregivers and patients in different activities through an optimal space.

Support caregivers in the creation of activities in which they can participate together with the patients.

Encourage positive thoughts regarding care.

Expand the social relations of the assistants.

Reduce the isolation suffered by the affected person and their carer.

Promote intergenerational relations, given that the affected person may be accompanied by any member of the family, children and grandchildren included

PO4.7. Dementia-friendly campaigns: Simplified Stories & I'm still here

LAMERS Hilde

Flemish Alzheimer's Association, 2300, Belgium

The Flemish Alzheimer's Association focuses on dementia friendly campaigns. We try to involve many people with dementia and their families. Herewith two examples: 'Simplified Stories' and the campaign 'I'm still here'. 

Simplified Stories: Based on the advice of field experts Paradox Dementia Expertise Centre and the University of Antwerp we made Simplified Stories: rewritten and redesigned books for persons with early dementia. Stromae’s biography is the first one. As a worldwide phenomenon he’s also the perfect topic of conversation between persons with dementia and partners, friends and family. So we’re not only creating awareness about early dementia, we’ve created something that really helps. More important than the attention in the national press, the reactions on the book were heartwarming. (https://ddb.be/work/all/clients/all/simplified-stories#main-content) 

I'm still here: We've developed a new platform in collaboration with the Paradox Dementia Expertise Centre, on which people with dementia can leave their memories for later. So they can send little messages for their loved ones to listen to at a later date. It's one way to deal with early-onset dementia. But also a way to send a strong message: "We know how things stand, but that doesn't mean we're going to give up". The website is backed up by a captivating radio documentary. Six people with early-onset dementia recorded their finest memories for their loved ones. The memory is followed by an emotional passage in which they say that their finest memories will never disappear. "Alzheimer's will never rob me of these wonderful memories."  A message can be delivered up to 10 years later. (https://ddb.be/work/all/clients/all/ikbenernog-i-m-still-here)

PO4.8. “With head, heart and hand” Intergenerational project on supportive meeting between people with dementia and children

STEINBOCK Sonja

Demenz-Servicezentrum Münsterland, Ahlen, Germany

Problems: Intergenerational family structures (three-generation households) are rare; dealing with people with dementia is still an uncertainty in society regarding a lack of knowledge   even though there are various possibilities of information

Outcome: Avoidance of contact and exclusion of people with dementia

Aim: Enable intergenerational meetings (especially with people with dementia); support of societies future through human expertise; ensure social interaction through meetings      and makeup of relationships with people with dementia; promoting the acceptance of otherness as new normal

Method: ConceptKIDZELN(German for: explaining dementia to children –Kindern Demenz erklären): Existent module-game composed of working- and training material like drawings, photos, songs and exercises; project from theLandesinitiative Demenz-Service Nordrhein-Westfalen, a German regional supportive network for people with dementia and their relatives, supported by Alzheimer’s federal associationKreis Warendorf; developed in preparation for intergenerational meetings between children and people with dementia

Main target group: Children aged between 3 and 7 years

Facilitator: Initiator/attendants from intergenerational projects, professional and private Caretakers; Self-held consultants for example in regional Alzheimer associations

Topic: Module game leads to encouraging acceptance, congruence and empathy regarding meetings between children and people with dementia. It is based on the humanistic concept of man. Additionally, the children get information on the brain and nerve cells, as well as age-appropriate information on dementia. Added modules exist regarding topics like the behaviour in meeting-situations, the knowledge on professional skills, the use of daily activities and memories as resources and the understanding of the private caretaker’s situation.

Sponsorship of the Alzheimer federal associationKreis Warendorf

PO4.10. “We can’t change the person with dementia but we can change the environment they live in”

SHERRIFF Ian1, MARSHALL Fiona2, HITCHINS Liz3, KENNEDY Maxine3, PASCOE Ann4, MANN Val5

1Chair of The UK Prime Ministers Rural Dementia Task and Finish Group, Plymouth, United Kingdom, 2University of Nottingham, Nottingham, United Kingdom, 3Dementia Friendly Parishes around the Yealm, Plymouth, United Kingdom, 4DFC Helmsdale, Helmsdale, United Kingdom, 5University of Plymouth, Plymouth, United Kingdom

Many rural dwelling people living with dementia experience loneliness and isolation, which impacts upon their quality of life. Rural specific barriers such as limited transport, higher living costs, housing and fuel poverty are often barriers for access to often patchy health and social care services. Stigmatising and stereotypical attitudes may also exacerbate rural isolation among families living with dementia. These complex factors make life more difficult for people with dementia and those who care for them living in rural locations.   

The UK Prime Ministers Rural Dementia Task and Finish Group remit was to examine how people with dementia and their carers can be supported to remain and live in their rural communities.  The membership of the group was drawn from the wide spectrum of rural life in the UK and while not an exhaustive list included people with dementia and their carers; local business and transport; local services; faith groups; emergency services; local government; health and social care; BBC; rural voluntary and third sector organisations.  Following the three year programme, the group have published a Charter, which provides tangible guidance for the development and sustainability of rural dementia friendly communities.  

The Charter builds on the fundamental principles of inclusion and contribution among the diverse members of rural communities. We recognise that whilst every rural community is unique, local ownership is key to meet the changing needs of vulnerable families. Specifically, the charter provides flexible guidance in order to build firm foundations and create sustainable organisational structures that can embrace rural geographical challenges in order to make change happen.  The Charter reflects learnings, celebrates successes, identifies shared themes across the work of the group, and will provide guidance for others to confront these challenges to improve the lives of people with dementia, their carers and families in rural communities. 

PO4.11. "Young people, they just get it!" Working across generations to act on dementia.

FERNANDEZ GOMORA Daniela, MORE Sarah1, CAMPBELL (living with dementia) Dianne2

1Alzheimer's Society, London, United Kingdom, 2N/A, London, United Kingdom

Almost everyone knows someone affected by dementia. Young people are no exception. So how do you explain dementia to a young person? And why is it important to do so?

Explaining dementia to young people can feel overwhelming and many find it difficult to understand. However, Alzheimer’s Society has many resources to help parents and teachers explain the condition – from school teaching resources, Dementia Friends activities to factsheets.

The Scout Association’s ‘A Million Hands’ initiative encourages Scouts to take social action on dementia and work towards their Community Impact badge. Many have become a Dementia Friend and are working with their local communities to create dementia-friendly spaces, including delivering activities in care homes and creating dementia-friendly signage.

"Young people are so open and willing to learn, it almost doesn’t occur to them to have the prejudices and negative perceptions that older people tend to have picked up." - Bruce, Dementia Friends Champion

Our latest resource, ‘Memories with Grandma’ is an animation for 7-11 year olds. It was developed with feedback from people with dementia, and over 30 children of our target age. Alzheimer associations worldwide were consulted to ensure the animation could be used in different cultures and countries. All consultees made valuable contributions to the script and style of the animation.

Dianne Campbell, AS ambassador living with dementia, voiced Grandma.

‘It’s great to have been involved with a project that is actively raising awareness of dementia with younger generations. They are our future doctors, politicians, teachers... By educating people at a young age we are transforming the landscape for those affected by dementia today and in years to come’.

Since its launch in September 2017 the animation has been viewed on YouTube over 4,000 times in over 63 countries!

View the animation and other resources here - Alzheimers.org.uk/youngpeople

PO4.12. Working together in creating and maintaining a familiar and meaningful everyday life in a Danish Dementia Village

MOESTRUP Lene, PEOPLES Hanne, PEDERSEN Line Friis

University College Lillebaelt, Odense, Denmark

Background: The first dementia village was established in 2015 as a public institution in Denmark. The intention was to provide people with dementia a way of living which enables them to still be part of the local community in an environment that resembles familiar everyday life. The purpose of this project was to explore how people with early stage dementia living at home, relatives to people with dementia living in the dementia village and volunteers reflect on creating and maintaining a familiar and meaningful everyday life, in the context of a Danish dementia village.

Methods: A methodology for user involvement in public service development and evaluation called ‘The BIKVA Methodology’ was used. The project employed focus-groups and semi-structured interviews, participant observations and photo-elicitation. The sample consisted of 38 participants: seven persons with dementia, eight relatives, thirteen volunteers and ten healthcare professionals. A thematic analysis was used.

Results:

People with early stage dementia did not wish to use the possibilities of the dementia village, because they were confronted with people with dementia in a late stage. Relatives contributed actively in creating a meaningful everyday life in the village, but emphasized the importance of still connecting the residents with real life outside the village. The volunteers were essential for the residents’ abilities to use the possibilities of the dementia village.

Conclusion:  The interaction between the dementia village and the local community, as well as the resident’s sense of a meaningful everyday life, was dependent on active involvement of relatives and volunteers. This level of civil involvement is still unusual in a Danish healthcare context. Regardless of the intention of the dementia village, it was unable to include people with dementia in all stages.

PO4.13. Empowerment of people with dementia online

BRUIJS Anne-marie

Alzheimer Nederland, Amersfoort, Netherlands

Introduction: According to the literature, information access is an unmet need for people with dementia. To provide this need, the internet can be used. It is more difficult to use the internet for people with dementia than for healthy people. But there are still some people with dementia that do use the internet. Especially people who are recently diagnosed or are at younger age. However, the information provided on the internet and the lay-out of websites is mostly for the carer instead of the person with dementia, which excludes people with dementia.

Aim: Alzheimer Nederland wants to empower the person with dementia and give them a voice. Providing online information towards them will support this. 

Method: For the design and content of this page, the literature has been searched, other Alzheimer societies have been contacted and people with dementia are questioned and observed while using the computer to find out their preferences and needs.

Result: Lay-out and content are adjusted to the needs and preferences of people with dementia. The result is a webpage with short pages, a clear overview with pictures, and a back bottom on every page. Videos and text are used to provide the information. This information that was needed is divided in 6 themes: coping with de diagnose, move on with your live, tips for daily living, dealing with changing relations, accept help and being involved. After the completion of the webpage, it has been evaluated with people with dementia to refine the webpage.

Conclusion: Alzheimer Nederland thinks that these tips are easy and helpful for other societies to use for their website. With an oral presentation about this subject, we can spread the word.

PO4.14. How a dementia friendly Circle of Support works for its rural dementia families

ROSS Karina1, PASCOE Ann2

1Dementia Friendly Communities Ltd, Helmsdale, United Kingdom, 2Founder/Director, Helmsdale, United Kingdom

How a rural dementia friendly community was established in the Scottish Highlands with the aim of becoming not only financially self-sustainable, but also providing the kind of community support that dementia families really need. Case studies will be used to illustrate:

How social therapeutic interventions - especially in the early stages of the disease - can be effectively used to keep dementia families on a self-management pathway at home for much longer while at the same time giving them not only a sense of social inclusion, but also a life of real quality.

How the community Village Hub is run as a socially inclusive activity club rather than a dementia specific meeting place with activities centred on creativity, cognitive work and exercise, using not only trained support workers to oversee the programmes, but also taking advantage of interactive screens linking a number of rural villages to combat loneliness and isolation by encouraging engagement with old and new friends while sharing, amongst other things, onscreen activities around dance, music and art.

How programmes like:

Bridge over Troubled Waterbridges the gap between a problem and its solution by providing immediate short term assistance to carers at times of stress,

Dinner to your Doordelivers nutritious home cooked meals together with ‘chatting time’ to over 100 vulnerable adults each week

Men’s Shedprovides a safe haven for men to meet on a regular basis

Art ‘n Bletherprovides weekly recreational art classes for carers, including unidentified carers, plus a pop-up café for social interaction during/after the classes

How all these programmes can be individually and jointly financially self-sustaining thus enabling the community to look after their own. Moreover, how the programme will be rolled out across Scottish Highlands to 8 further remote rural areas over the next two years.

PO4.15. Umbrella Net Program

RUANOVA Lucía, HERMIDA Javier, RODRÍGUEZ Juan Carlos,

Federación Alzhéimer Galicia, Santiago de Compostela, Spain

Goals:
 1. Promote intergenerational relationships

2. Promote the training of families

3. Relieve the pressure of families

Methodology: Three projects were carried out in different areas of society:

1. Education: intergenerational activities (adapted to each educational group) that show the reality of the elderly to the young, bringing them closer to the concept of disability and dementia and showing the importance of family co-responsibility. This task was divided into three workshops aimed at: primary school students, secondary school students and high school students. At the end of the workshops, a didactic unit was carried out explaining the signs and symptoms of the disease. Finally, several students approached the associations to learn first hand the theory presented.

2. Promotion of the training of the families who care in the rural areas when caring for their family member. To this end, an informative talk was held in each locality, an 8-hour training cycle and social attention points were set up for family members and memory units for people with dementia.

3. Relief of pressure from families who care and help people with dementia to stay in stimulation programs to avoid isolation and decrease in quality of life. A scholarship program was launched that avoided the cost of resources.

Results:
 - Participation of 2,786 students from 37 educational centers

- Carrying out 39 informative talks in which 1,053 people participated

- Completion of 9 training cycles in which 200 people participated

- Start-up of 5 memory units in which 62 people participated

- Opening of 12 points of social attention in which 276 relatives participated

- Relief of family pressure of 32 families

Conclusions: It has been considered necessary to extend this training to more educational centers and other teachings. Independent projects have been born in several locations in Galicia.

PO4.16. CasAperta, music and arts café by people with dementia and their carers

HINNEKINT Bie1, BAERT Veerle1, BINS Elena2

1OCMW Gent, Gent, Belgium, 2Ms, Gent, Belgium

Introduction: In CasAperta, a music and arts café, people with dementia (PWD) and their carers, have new experiences together, enjoy music and arts in the mainstream-cultural scene, make friends and by participating spread the message “Living well with dementia is possible”. PWD and their carers meet monthly for an artistic afternoon in a community center-café, where other visitors are welcome to join and have a drink.

Methods: By creating stories, poetry, music, drawing, improvisation… a different experience of dementia emerges: imagination opens, there is no failure possible in art.

CasAperta is a support-group as well and has grown into a ‘safe haven’ enjoying together with their carer ‘networks of intimacy’ other cultural performances in the city of Ghent as opera, classical concerts and participating in cultural museum-programs…

Results: Since the start in 2016, over 25 duos are participating, coming from the wide region around Ghent.

CasAperta Music-Salon is newly developed in 2018 as an off-spring: six Sunday-afternoons. In QuatreMains Music-café classical music, including opera aria’s, dance music… is performed by two young musicians of KASK- School of arts Hogent and very much enjoyed by all the participating people with dementia and their carers. The Music-salon is always fully-booked and duo’s are coming back.

CasAperta believes in the creative capacities of PWD and use of imagination, branching out new ways, not holding on to activities people used to enjoy but uses creativity to dwell in the present. 

The group process is highly valued by participants and many reciprocal moments are observed including non-verbal reactions that can be interpreted as joy, attention, appreciation.

PWD have much to teach us, once the caregiver moves in the world of his partner he or she can assimilate another stand and live in a new way with the partner with dementia so the relationship is changed.

PO4.19a. Challenging sectors and championing the rights of people with dementia

FRANCIS Vivienne, BOULD Emma

Alzheimer's Society, London, United Kingdom

Our work challenging sectors is integral to creating a societal shift on dementia - ensuring people with dementia are empowered in their communities and their rights championed. 69% of people with dementia said the main reason they stop going out is lack of confidence; therefore, access to relevant and meaningful activities is crucial for mental and emotional well-being.

Heritage and cinema: Culture and leisure activities have a powerful impact by encouraging participation, decreasing social isolation and increasing social engagement. Impacting positively on cognitive and emotional stimulation, self-esteem and episodic memory. Consequently, heritage and cinema industries have a crucial role supporting people affected by dementia with greater understanding. Heritage sites and cinemas should be open and accessible, and promote an inclusive environment for all audience members. Alzheimer’s Society has developed two new guides: ‘Rethinking Heritage and ‘Dementia Friendly Screenings’. Both raise awareness of dementia, providing clear recommendations and best practice case studies.

Gardening: Gardens and gardening are incredibly important, especially for older people and people affected by dementia. From playing in gardens at home as a child, to exercising in public gardens or parks, and socialising with families. Gardens can help people to social and connect with others through a shared experience, take part in physical activity, stimulate the senses, and ultimately improve well-being. Gardening increases in importance not only as a source of physical activity, but for an individual’s identity, independence, and in reducing loneliness (Pettigrew and Roberts, 2008). Emerging evidence shows that gardening may be useful in preventing falls by maintaining balance and enabling people to remain active. Despite the data showing how important gardening is, those over the age of 65 – are less likely to visit green spaces than the national average. Reasons for this include poor maintenance, inadequate facilities and fears over safety (Natural England, 2015).

PO4.19b. Brand, marketing and rights: ‘uniting against dementia’ a movement for change

FRANCIS Vivienne

Alzheimer's Society, London, United Kingdom

The movement for change has been given definition, edge and impetus in two ways by Alzheimer’s Society in the past year.

The Society introduced its bold, engaging new identity in January 2017, with a view to turning up the volume on the disease. The brand, which was created in full consultation with people with dementia, combines the heritage and meaning of the ‘forget-me-not’ flowers with the relevance and anarchy of graffiti. The repositioning, as the ‘rallying point of the dementia movement’ has increased awareness of the issues around dementia as well as supporters who would be happy to donate to the cause, created new partnerships such as with edgy broadcaster Channel Four, built engagement with different stakeholders, and led to harder-hitting campaigns. 

Simultaneously, the Society worked with people with dementia to redraft the Dementia Statements, rooting the new version in human rights law. This gives a new framework to the movement, and is demanding rather than politely asking for change. The statements, which were also reinforced with a ground breaking study of more than 1,000 people living with dementia today, effectively create a new policy platform from which we can map out milestones for the movement more effectively and lead more change.

The brand, marketing strategy and rights-based approach is transforming the movement. This year’s annual awareness week has been renamed as Dementia Action Week. We are calling on Society at large to take whatever action they can to help the aspirations in the Dementia Statements become a reality. We are calling on government to increase its investment and focus on social care, based on the rights of people with dementia. This holistic approach to shifting the dialogue on dementia and creating real change is being welcomed by people with dementia.

PO4.20. The Seaside Week

BERTANI Eleonora, BIGLIARDI Mila, MORELLI Milva, BEDINI Ilaria, VALERIANI Maria Teresa, CARRETTI Barbara, MIZZI Alessandra

Aima Reggio Emilia, Reggio Emilia, Italy

The Seaside Week is a week of real vacation at the seaside with an excellent organization, in a pleasant costal resort. It is organized for the people who attend to the six Alzheimer Cafés held in the province of Reggio Emilia throughout the year.

To the people with dementia and their caregivers, this project means the chance to live a whole week out of home and their usual environment, to meet new people and make new friends. In particular, thanks to the help of volunteers, professional health service operators, psychologists and caregivers, it allows everyone to enjoy those “small things” that the disease too often takes away: taking a walk, going to the beach, sleeping and resting, playing cards with new friends, etc.

The first day trip to the seaside of the “Cafés” took place in 2008, when we organized a lunch at the Gran Hotel in Rimini. In the following years (2009-2010), we continued to propose some days of excursion increasing the stay away from home up to four days.  Then, starting in 2011, the trip turned into a one-week vacation.

In May 2018 more than 70 people will enjoy the project: 25 people with dementia, together with their family members and 15 volunteers.

Considering that it is often advised to keep the habits of the people with dementia in their living environment, the Seaside Week has proved to be a great achievement. As a matter of fact, we show in practice that travelling and spending a vacation together is still possible for people with dementia and their families. Moreover, living in the community allows us to encourage people to interact with people with dementia and to integrate them in everyday life.

PO4.21. Aspects of creating an adequate - environment and design for a dementia-friendly library: a collaborative project of a higher education institution in Austria

TATZER Verena C.1, ULLMER Rebecca2, CERLAC Marlies1, KAUTZ Annika1

1University of Applied Sciences Wiener Neustadt, Wiener Neustadt, Austria, 2Library - University of Applied Sciences Wiener Neustadt, Wiener Neustadt, Austria

In Lower Austria, a province in Austria, 312.717 persons are 75 years old or older (Statistik Austria 2017). Moreover, the number of people living with neurocognitive disorders among the elderly is growing. Public institutions and services are challenged to adapt their core-business to the needs of older people and vulnerable groups.

The public library Wiener Neustadt and the library of the University of Applied Sciences Wiener Neustadt are going to merge into one bigger public library, a process that is unique in Austria. During this transition process, it is the goal to offer better service to groups that have been neglected so far.

People with dementia and their carers can be at risk to experience restrictions in participation. Libraries are spaces of education and learning and thus have an important function in a city. They offer possibilities to participate in public life, but can also provide information about themes related to neurocognitive disorders.

Occupational therapists provide information to enhance the possibility to participate in meaningful occupation for people with disabilities because they have knowledge about the transaction of personal, environmental and activity-related factors and analyze their transaction (Christiansen, Baum, & Bass, 2015).

Thus it makes sense that the bachelor program of occupational therapy at the University of Applied Sciences and the library of Wiener Neustadt started a collaboration to develop a “dementia-friendly library”. The aim of the project presented is to provide recommendations for the new building according to age-friendly and dementia friendly design principles and reduce barriers.

Methods: A literature review is the first step intended to provide the basis for future recommendations

Conclusion: The collaborative approach is promising and has potential to contribute towards making the city of Wiener Neustadt a dementia friendly community in the future.

PO4.22. How does resilience promote dementia carers' wellbeing?

JONES Sue, KILLETT Anne, MIOSHI Eneida

University of East Anglia, Norwich, United Kingdom

Background: Those caring someone with dementia are at risk of depression, anxiety and stress. However, not all carers experience psychological distress due to caring, greater resilience may account for this variance. This study aims to: (1) compare levels of depression, anxiety, stress and burden between high and low resilient carers, and (2) to identify whether resilience acts as a mediator in the relationships between carer wellbeing and: depression, anxiety, stress and burden.

Methods: Cross-sectional survey of family carers in Norfolk, England (July–September 2016), using standardised measures of resilience, depression, anxiety, stress and burden. First, carers were split into those with high resilience and those with lower resilience, and group comparisons (independent t-tests) were made. Next, to identify if resilience is a mediator in the relationships between carer wellbeing and: depression, anxiety, stress and burden, four mediation analyses were conducted.

Results: Carers (n=110) aged between 30 -80+ years; 66% were female; 75% lived with the person with dementia and 72% were providing over 40 hours of care per week. 51% were classified as highly resilient. High resilient carers had lower scores for depression (MD=4.90,95%CI 2.75:7.06; p<0.01), anxiety (MD=2.93,95%CI 1.34:4.52; p<0.01), stress (MD=4.30,95%CI 2.37:6.24; p˂0.01) and burden (MD=8.49,95%CI 4.80:12.17; p˂0.01) when compared to carers with lower resilience scores. Resilience was a partial mediator in the relationship between wellbeing and depression (b=0.76,95%BCaCI-1.10:0.36), anxiety (b=-1.04, 95%BCaCI-1.53 : -0.59), stress (b=-0.96,95%BCaCI-1.38 : -0.57) and burden (b= -0.40 95%BCaCI-0.62 : -0.22), indicating resilience accounts for some but not all of the relationship between wellbeing and each variable.

Conclusion: Highly resilient carers report less distress. Resilience can mediate the adverse relationship of depression, anxiety, stress and burden on wellbeing. These results suggest that future interventions in the community which promote or maintain resilience may reduce morbidity associated with caring for a relative with dementia.

PO4.23. Identifying resilience in family carers

JONES Sue, MIOSHI Eneida, KILLETT Anne

University of East Anglia, Norwich, United Kingdom

Background: Caring for a person with dementia is stressful and can result in feelings of distress. However, while some carers express feelings of burden this is not universal, others describe caring as bringing positive changes. This variance in carer response has been attributed to resilience. Resilience can be defined as using personal assets and external resources to positively adapt to challenge and trauma in order to maintain or regain wellbeing.

Objectives: To explore resilient coping strategies used by carers as a means to maintain or promote their wellbeing.

Data collection and analysis: 13 adults were recruited from an earlier study which measured resilience and wellbeing in carers of people with dementia. Carers took part in face to face, semi structured interviews. Interviews were carried out by the first author, lasted between 42 and 90 minutes, were audio-recorded, transcribed in full and analysed using an Interpretative Description approach.

Findings: 6 carers had low resilience, 2 medium and 5 had high resilience. Two broad themes were identified, ‘sense of self’ and ‘social connectedness’: Highly resilient carers successfully used approaches which protected, maintained and enhanced their sense of self. Less resilient carers described losing their identity and feeling overwhelmed by the demands of providing care to a relative with dementia. Navigating statutory services and maintaining social networks was challenging for all carers in the group. However, resilient carers were more able to secure the services they needed and develop a new social network, less resilient carers withdrew from previous social groups and opted to ‘go it alone’.

Conclusions: Resilient carers successfully integrated caring into their sense of self and developed or maintained social connections with friends, family and the wider community. Highlighting these successful resilient coping strategies will inform the development of resilience focused interventions to support family carers.

PO4.24. Information about dementia on City of Oslo’s website

KARLSSON-HAIG Sissel, LYNGROTH Solfrid Rosenvold, WASSERFALL Ellen

1Centre for Competence Development and Research/ Development Centre for nursing homes and home care services, Oslo, Norway

Background: City of Oslo has produced a dementia plan «Living well with dementia, in Oslo» (2014).
 The council department for Primary Health and Social Services feels that this plan must be followed up and gave, therefore, Centre for Competence Development and Research/ Development Centre for nursing homes and home care services, Oslo, the task of gathering and publishing information about dementia on City of Oslo’s website.

Goals:

1) Customize and further develop information about dementia by involving persons with dementia (patient participation)

2) Make information about dementia available in several languages

3) Gather all relevant information about dementia on City of Oslo’s website

Method: Patient participationwas achieved with the help of qualitative method, experimental design, and narrative approach. Interviews were conducted as moderator-controlled focus groups, group discussions and dialogue conversations.

Web-testing took place by asking the participants individually to ‘navigate through the information’, making comments during the process.

Results: Many persons with dementia found it difficult to master using the internet to obtain information themselves. Assistance from relatives or health personnel was often necessary. It was revealed how the design of the information could be more dementia-friendly: There is a need to develop brochures as supplements to the website. The information relatives wish to have is more comprehensive than presumed: There is still a need for more printed brochures in different languages. Pages for dementia have now been established, structured according to the identified needs and tested for user friendliness, on City of Oslo’s website.

Conclusion: It has been established that it is important for persons with dementia and their relatives to be able to access information about dementia suited to their needs. This has been facilitated by publishing relevant information about dementia on City of Oslo’s websites. These pages must be supplemented by printed brochures.

PO4.25. Therapeutic groups for familiar caregivers of people with Alzheimer: from research to training multipliers to expand implementation

POUDEVIDA Sandra, PIROMALLI Desirée, GRAMUNT Nina, MAS Glòria, BRUGULAT Anna, GOTSENS Xavier, HUESA Gema

BarcelonaBeta Brain Research Center, Pasqual Maragall Foundation, Barcelona, Spain

In 2012-13, the Pasqual Maragall Foundation (PMF), concerned by the lack of direct assistance to familiar caregivers of people with Alzheimer, in collaboration with Obra Social La Caixa (OSLC), performed a pilot study to validate a cognitive-behavioral group therapy designed on purpose for them.  This therapy was compared to a passive control group. From this initial study it was obtained a well-structured intervention that pointed to promising beneficial effects for caregivers’ wellbeing.  Later on, in 2014-15 we carried out a multicentric clinical trial in 13 sites in Spain and with a sample of 221 caregivers where the intervention group was compared to an active control one, participating in non-structured support groups without the leadership of a therapist. The results showed superior benefits of the therapy intervention group with significant improvements in anxiety and depressive traits, perceived quality of life, functional social support and resilience.

Encouraged by this positive results the PMF established a permanent caregiver’s assistance program and trained several psychologists to conduct this therapy in different institutions with homogeneous administration criteria. Thus, the number of caregivers receiving the benefits of this intervention has been constantly increasing. Nowadays, more than 450 caregivers have attended a therapeutic group and their feedback has been always positive.  In order to reach much more recipients of such beneficial effects, we have recently launched an on-line university course in collaboration with OSLC, addressed to professionals for providing them with a well-structured therapy to offer a better assistance to Alzheimer’s caregivers in their day-to-day practice.  

In this poster we will show up the main program milestones of an experience that represents an opportunity for familiar caregivers to go through a path of acceptance of their situation, improvement of the quality relation with their beloved with Alzheimer and promotion of joint wellbeing.

PO4.26. Starting revolutions and taming tigers: navigating thresholds, boundaries and disability with dementia

PEMBLE Catherine

University of Stirling, Stirling, United Kingdom

Although the last decade has seen considerable advances in the ways in which society perceives, interacts with and supports people living with dementia, it is clear that there is much yet to be done.  Informed by the growing hunger for ‘dementia friendly’ spaces and initiatives, this research argues that it is only through acknowledging the importance of the social, relational and physical thresholds that we can effectively tackle the multifaceted and changeable challenges facing people living with dementia today. By using the lens supplied by the Social Relational Model of Disability (Thomas, 2004) the research explores the ways in which people living with dementia create and manipulate the social and physical threshold spaces around them.

This presentation draws on the results of an ethnographic study conducted over the course of a year, with 11 participants living with dementia in Scotland. Using insight captured in over 70 hours of unstructured interviews, digital photography and researcher field notes, this submission challenges the clichéd construction of the person with dementia as an ineffective actor, besieged by a hostile world.  Instead it presents people with dementia as powerful and calculating individuals who continue to draw and redraw their social, physical and relational boundaries in response to constantly evolving internal and external ‘landscapes’. This is highlighted by focusing on three key themes: People with dementia as ethnographers of their own experience, threshold crossing as a troublesome process, and using tools, technology and networks to manipulate threshold spaces.

This work speaks to both academic and practice audiences, drawing on Heideggerian philosophy to discredit the notion of a person with dementia as ‘lost’ or ‘reduced’ by the disease, even as it uses the focus on thresholds and boundaries to highlight key lessons for practice.

PO4.27. Dementia or mild cognitive impairment: @ work in progress

NYGÅRD Louise1, MÄKI PETÄJÄ LEINONEN Anna2, ASTELL Arlene3, NEDLUND Ann-Charlotte4, BOGER Jennifer5, HEIMONEN Sirkkaliisa6, ROSENBERG Lena7, YLHÄINEN Marjo2, KARJALAINEN Katja2, KOTTORP Anders8, RYD Charlotta7, ISSAKAINEN Mervi2

1Karolinska Institutet, Stockholm, Sweden, 2University of Eastern Finland, Joensuu, Finland, 3Ontario Shores & Univerity of Toronto, Toronto, Canada, 4Linköping University, Linköping, Sweden, 5University of Waterloo, Waterloo, Canada, 6The Age Institute, Helsinki, Finland, 7Karolinska Institutet, Stockholm, Sweden, 8Malmö University, Malmö, Sweden

This multidisciplinary project (occupational therapy, psychology, elder law and labourlaw, social and political science, and engineering) will provide new insights into what happens when people develop mild cognitive impairment or early stage dementia while still working, how this is influenced by legislation, and how it is experienced and potentially managed by those concerned.

The empirical project will include case studies and the joint compilation of information gathered from the case studies from different countries, providing in-depth understanding of how their situation and transition process might be experienced and managed, and of the influencing conditions, particularly related to the role of technology. Technology might be a hindrance as well as an asset in different cases, that is; technology might not be the solution for all. Development and evaluation of new tools will be included in cases. Based on knowledge generated in these longitudinal case studies, we will co-create a new computer-based tool to support the person in the transition, for example by supporting communication, education, and adapted occupation. We will also investigate how laws, regulations and policies in different countries and organizations can support and/or hinder continued work and/or transition from work, how these are practiced and how they can be understood better by people with dementia/MCI and their employers.

Researchers from Sweden, Finland and Canada will collaborate with people with MCI/dementia in the workplace, their families, employers and HR staff. An interdisciplinary, in-depth inquiry into cases in all countries, in combination with analyses of legal regulations and their translation into practice, will add profound new conceptual understanding to produce new guidelines, tools and technologies that enable people with MCI/dementia to take a lead role in managing and choosing their work life and that support these persons, employers, and workplaces as well as the social system.

PO4.31. Implementation of a Living Lab in a day care centre: involving people with dementia and their carers

CHARRAS Kevin, MABIRE Jean-Bernard, AQUINO Jean-Pierre

Fondation Médéric Alzheimer, Paris, France

Living Labs are in-vivo or in-situ social innovation laboratories relying on a scientific approach to develop and test services, interventions and products. Living labs encourage co-creation and co-validation in partnership with its targeted users in real life conditions. The goal is to create or to intervene in an existing place where users can test devices. Living Labs have no predefinies physical structure except for the fact they always take place in full-scale environment and realistic conditions. 

In France and Europe, several Living Labs experimenting devices for people with dementia have been developped. A recent census has shown that they mainly evaluate assistive technologies and serve as show rooms. They encounter methodological difficulties due to lack of familiaritry of the environment with participants with dementia, recruitment of participants and ecological validity. Thus, to palliate these difficulties and broaden the research scope to fields of interventions and services, the Foundation Médéric Alzheimer has formed a partnership with a day care centre and its users in order to involve them in the evaluation process of interventions, products and services aimed at people with dementia.  

In this presentation, we will present an innovative and participative experimental device that combines development of care practices and applied research for people with dementia: a Living Lab in a day care centre. To date, several interventions have been implemented in the Living Lab: environmental changes, dance, tactile devices, and healing gardens. And more are to come. Ethical dilemmas for involving people with dementia and their carers in scientific research will be raised, as well as scientific value of experimentations within the Living Lab. Communication strategies to raise awareness on interventions, services and products experimented in the frame of the Living Lab will be describe and the economic model of such a care and research device will be discussed.

PO4.33. Perpetuating memories

AGUIAR Nélida

Alzheimer Portugal and EWGPWD, Funchal, Portugal

Living with dementia and / or caring for someone with dementia requires an enormous capacity for adaptation, and it is fundamental to unite and strengthen family ties, and it is important to live with LOVE. Maintaining all the bonds that can unite it to its Past, providing the best comfort in the Present by the uncertainty of its Future. Living with dementia is INTEGRATION !!! It is of extreme importance to realize that a diagnosis of dementia is not only the illness of that person, but a disease that will affect the whole family. Living and / or caring for a person with dementia is like managing a large company, so the balance that allows us to slow the progression of disease is to integrate the person with dementia. The person diagnosed with Alzheimer's is listed, quoted and referred to as a "special case". However, they are not different. My mother has Alzheimer's, and we have been able to demonstrate that it is possible to live with dementia. How? Respecting the essence of the individual with dementia, stimulating and integrating it in society, with this new condition. Respect your condition but without diminishing your self-esteem. From the first moment, we were imposed limitations, both by the doctors, and by the very evolution of the disease. But why limit? The diagnosis must be accurate and early, but we should not accept it as if it were a death sentence. Fundamental rule: respect the person with limitation! We have to reinvent daily, small common acts, so that the memory is preserved as long as possible. It is to try, at all costs, to continue to make oneself heard and perceived by the will expressed by the person living with dementia, how important their integration, opinion and should be valued.

PO4.34. The person beyond dementia

BRUNO Patrizia, FRANCONE Caterina, SANTILLO Antonella, PENNACCHIO Antonietta

Amnesia Association, Napoli, Italy

Introduction: A.m.n.e.s.i.a Association (Associazione malattie neurodegenerative e syndrome Alzheimer) is setting up several activities for PWD and their relatives in its meeting center. Among these activities a psychological social stimulation project was developed: its name is “Ri.di.Co.” (couple rehabilitation) and is addressed to couple who live this diseaseboth as PWD and caregivers.

Purpose: “RI.di.Co” project’s goal is to give couples the opportunity of a normal life beyond the disease, thanks to the acknowledgement of their life path and their emotions, and thanks to the awareness of their needs into their social life.

Materials and Methods: The project is made of both cognitive and emotional stimulation activities for PWD and psychological emotional support for caregivers. These activities always take place three hours a week. Furthermore, the group members are involved in social events and funny activities, i.e. they cooked a lunch during a training course for professionals organized at the meeting center, theatre laboratory and gardening activities. On 6thNovember 2017 the project started. It included 6 couples who have been monitored via a former neuropsychological evaluation. There will be a latter evaluation in 6 months.

Results: Their participation to these meetings represented an important opportunity of living this disease from a different perspective. The project is able to give the disease a social and emotional value, because it preserves PWD needs and their life motivation. 

PO4.36. Driving eHealth education and innovation by involving experts with dementia: a case study

LEORIN Cristian1, STELLA Eloisa1, PAGGETTI Cristiano3, NUGENT Christopher3

1Associazione Novilunio Onlus, Padua, Italy, 2I+ srl, Florence, Italy, 3School of Computing - University of Ulster, Belfast, United Kingdom

Background: In this presentation, we will illustrate a case study of how people with dementia can contribute to the research and development of personalized eHealth technologies. The example focuses on the deployment of a new post-graduate training programme that helps researchers develop a deeper understanding of how individuals living with dementia expect to be supported and/or enabled by eHealth technologies and at the same time fosters a co-creation approach that transcends the stigmatizing images associated to a dementia diagnosis.

The Connected Health Summer School is an annual multi-disciplinary training programme designed for researchers interested in the development of new eHealth services and apps. Established in 2016 by Italian ICT company I+ in collaboration with the University of Ulster, in 2017 the programme was adopted as the leading training event of the Marie-Curie project “REMIND” whose aim is to create an international and intersectoral academic and professional network that fosters knowledge exchange in the field of smart environment and technologies for persons with dementia.

The “learning by doing” approach: For the 2018 programme edition, REMIND end-users partner Novilunio invited two members/experts of the Irish Dementia Working Group to provide students the opportunity to appreciate the human experience of living with dementia associated to the adoption and use of eHealth technologies. Throughout the 4-day training programme, the two experts gave frontal lectures and workshops intended to stimulate the creation of eHealth app mockups that adhered to their specific real-life needs, values, and expectations.

Fostering the value of real life experts: The involvement of people with dementia as subjects and experts in their own right was aimed to give a clear message to students: a true personalized approach to eHealth solutions can only emerge from a highly reflective and immersive appreciation of people’s subjective accounts of their lived experience.

PO4.37. What are the views of people living with dementia and their informal carers getting involved in Tai Chi practise?

BARRADO-MARTÍN Yolanda1, HEWARD Michelle1, POLMAN Remco2, NYMAN Samuel R.1

1Bournemouth University, Bournemouth, United Kingdom, 2Queensland University of Technology, Brisbane, Australia

Background: Falls are a public health issue amongst older adults and particularly amongst those living with dementia. Exercise interventions are effective in preventing falls, however, few intervention studies have involved people living with dementia and explored their experiences. People living with dementia have the right to be included in research exploring normalised exercises that could potentially benefit their health and wellbeing. The aim of this study was to explore experiences of dyads formed of a person living with mild-to-moderate dementia and their informal carer taking part in a Tai Chi intervention program.

Method: In the context of a Randomised Controlled Trial, twenty-five dyads from five localities in the South of England took part in weekly Tai Chi classes and daily home practice over a period of 20 weeks. Field notes were used to record researchers’ observations during the classes and participants and instructors’ feedback at the end of each class. Fifteen joint dyadic interviews were conducted around session sixteen to gather participants’ views. Thematic analysis was used to inductively code the field notes and transcripts.

Results: Findings suggest that a dementia friendly design based on repetition and individualised support enacted participants’ enjoyment and mastery of Tai Chi. Facilitators of adherence to the intervention point towards participants’ enjoyment, perceived impact on wellbeing, social interactions with people in a similar situation and qualities of the instructor. Barriers for adherence to the intervention included difficulties following the booklet provided to support home practice, unexpected or recurrent health problems and competing commitments.

Conclusion:  People living with dementia and their informal carers could benefit from getting involved in a Tai Chi exercise program. Joint practice in the community and at home could provide them with a normalised shared interest and a source of wellbeing and conversation.

PO4.38. Improving the communication and relation between people living with dementia and their relatives

THOFT Diana Schack1, ECKERMAN Ane2, OTTESEN Aase Marie3, WEBERSKOV Bente4, FOLMAND Gunver5

1University College Northern Denmark, AAlborg, Denmark, 2The Danish Alzheimer´s Association, Copenhagen, Denmark, 3Aalborg University, Aalborg, Denmark, 4Weberskov, Aalborg, Denmark, 5The Danish Alzheimer´s Association, Aalborg, Denmark

The aim of this study was to evaluate a communication and relation course for people with dementia and their relatives. The course was developed by the Danish Alzheimer´s Association, professionals and researchers in the dementia field. It is important to develop courses including both people living with dementia and their relatives, as both need to learn about the illness and learn strategies to live a meaningful life. Thus, it gives an opportunity for doing something together.

Four courses where held for people with dementia and their relatives in four different municipalities in Denmark. Including a total population of 92. Before attending the course, the potential participants met with the leader of the course and a teacher to identify the needs and wishes of the persons with dementia and their relatives. The course was then designed to fulfill the wishes when possible. In the beginning and in the end of the course all participants were together. Otherwise, the participants were divided, so people with dementia could participate in the social and learning activities they wanted, while the relatives received training in dementia, communication and relation building by e.g. using Mateo Meo.

A combination of participant observations, storytelling with pictures and focus groups were used within the evaluation of the course. The data was analyzed by a thematic analysis inspired by Braun and Clarke.

The evaluation shows a great need for courses including both people living with dementia and their relatives. It fulfills a need to be social and learn from other people in the same life situation. At the same time Mateo Meo was identified as a relevant approach to develop the communication and relation abilities of the relatives – leading to more positive relationships. The course also initiated social networking that for some continued after the course ended. 

PO4.40. Developing a resilience-enhancing resource for family carers of people with dementia: Lesson learned

FEALY Gerard1, MCCARTHY Sandra1, PHELAN Amanda1, FORDE Mary1, NICHOLSON Emma1, LAFFERTY Attracta1, MCAULIFFE Eilish1, O'SULLIVAN Liam2, O'SHEA Diarmuid3

1University College Dublin, Dublin, Ireland 2 Care Alliance Ireland, Dublin, Ireland, 3St Vincent's University Hospital, Dublin, Ireland

Published in 2014, theNational Dementia Strategyfor Ireland is underpinned by the dual principles of personhood and citizenship and stresses the importance of people with dementia and their carers remaining as active citizens in society. Consistent with these principles is the need to promote social connectedness for family carers, since caregiving in dementia can be experienced as burdensome, stressful and isolating. Maximising carers’ resilience can ensure that they are more socially connected, have good social support and are more resourceful in accessing support services, and thereby experience caregiving as less burdensome and isolating. The WHO recommends involving carers in designing support programmes for people with dementia and their family carers.

This paper reports the findings of a study to evaluate the process of developing a resilience-enhancing resource for family carers of people with dementia. Conducted within a participatory action research framework, we established the Enhancing Carers’ Resilience (EnCaRe) Network Group, comprising current and former family carers of people with dementia. Acting as co-researchers with a team of academics and practitioners, the EnCaRe Group developed a real-world definition of resilience in dementia caregiving, and co-created a family carers’ resource, comprising short video testimonials of family carers of people with dementia, supplemented with written materials. The paper reports on the self-reported experiences of the current and former family carers working as co-researchers in developing the resource. The evaluation design involved focus groups, interviews and an online survey. We report on the experiences of the family carers in co-designing the resource and we present our findings using thematic headings, supplemented with data extracts that exemplify the emergent themes. Based on the evaluation data, the paper discusses some of the opportunities and challenges associated with involving lay family carers as co-researchers.

PO4.42. The comprehensive view: combining self-reports and observations to understand everyday technology use of people with mci and dementia

BARTELS Sara Laureen1, ASSANDER Susanne2, PATOMELLA Ann-Helen2, JAMNADAS-KHODA Jenny3, MALINOWSKY Camilla2

1Maastricht University, Maastricht, Netherlands, 2Karolinska Institutet, Stockholm, Sweden, 3University of Nottingham, Nottingham, United Kingdom,

Objective: The use of everyday technology (ET) can be challenging, particularly for older adults with mild cognitive impairments (MCI) and dementia. To understand the relationship between ET and the elderly with cognitive impairments, different methodological approaches have been applied: self-reports and observations. Unclear is currently, if the information gathered with those approaches complement one another or greatly overlap. Thus, the present study aims to evaluate the association between a self-report and an observational tool assessing ET use and will give insight in aspects depicted or missed when using one or the other in people with MCI and dementia. 

Methods: People with MCI (n=41) and dementia (n=38) were included. Associations and group differences were explored with non-parametric statistics.

Results: In the dementia group, the correlation was significant on a medium level (R2=0.35, p<0.05), which was not effected by n=1 outlier exclusion (Rs=0.438, p<.01). In the MCI group, no significant correlation could be found.

Conclusion: Technology use of the elderly with cognitive impairments can be described with self-reports as well as observations. However, the combination of both approaches is recommended to get a comprehensive picture of the relationship of ET and older adults. Thereby, sufficient support to improve ET use in everyday activities can be provided and isolation from society prevented.  Particularly in people with MCI, self-reported and observed information differ and might thus especifically add to one another.

PO4.43. Meeting without boundaries

JUNGLAS Elisabeth1, LABRUYERE Sandrine1, KRAUS Tania1, BARTSCHINSKI Tobias2

1France Alzheimer Vaucluse, Le Pontet, France, 2Alzheimer Gesellschaft München e.V., München, Germany

A European programme, The « Meeting without Boundaries » programme began in 2012. It was created by two associations sharing the same conception and ethical views concerning dementia:  France Alzheimer Vaucluse (France) and Alzheimer Gesellschaft München (Germany).  Since five years this European programme has been enabling people with dementia accompanied by a family member, volunteer workers and professionals from both associations to regularly come together for a week’s time.

A programme based on exchange and communication, « Meeting without Boundaries » enhances communication between participants, enabling them to share their respective experiences. Each meeting is an opportunity to compare the vision and the approach of each country in regards to dementia in our society and how each one deals with dementia from a political, social and cultural point of view. These discussions between European neighbors are not only very enriching for the participants but they also give mutual inspiration for both associations.

A programme which gives priority to those with dementia: their wishes, their ideas, their role as citizens in society

The goal of this programme is to break through the prevailing prejudices concerning dementia and to change the way it is looked upon in our societies.  « Meeting without Boundaries » makes a point of highlighting the competences of those who have dementia and largely includes them in the organization of the annual meetings. This programme enables them to remain active members of our society and to express their opinions, their views, their experience as they did publicly at the European Parliament during their third meeting in Belgium in 2014.

“Meeting without Boundaries” is one of the awardees of the European Foundation's Initiative on Dementia (EFID) 2017 edition. 

PO4.44. "Living with Alzheimer's or a related disease"

GILLY Lorène, MOLLARD Judith

France Alzheimer et maladies apparentées, Paris, France

With this program, France Alzheimer’s and related diseases wishes to provide those recently diagnosed with new answers. 

General objectives:

  • provide a better quality of life for the sick people and their caregivers.
  • enable the newly diagnosed persons to be proactive in what they are going through by letting them process the situation,
  • immediately mobilize their resources to enable them to adapt their daily lives to the new situation
  • suggest to share their experience and needs within a group to find appropriate answers
  • find strategies and compromises to maintain family, friend, and social relationships.

The beneficiaries:

Criteria of admission to the program:

  • The diagnosis is done and is announced;
  • The person concerned is interested in the program and wishes to participate;
  • The person expresses a will to share her experience in a group.
  • The caregiver may not participate in the workshops.  

How it works / this program is threefold:

A personalized group information session to identify the needs and define priorities for the people with dementia.

Group workshops lasting 2 hours:

Workshop 1: Share my experience and knowledge of the disease

Workshop 2: Emphasize my skills and share my solutions

Workshop 3: Identify my available tools to help in my daily life

Workshop 4: My family and social environmment, and me

Workshop 5: Managing my stress

Workshop 6: What are my wishes?

A final individual overview led by the workshop moderator who will be able to assess the impact of the program on the quality of life of the person concerned and her surroundings.

PO4.45. Effect of long-term group rehabilitation on physical performance in community-dwelling people with dementia

JUNGE Tina, KROMANN KNUDSEN Hans, KAAE KRISTENSEN Hanne

University College Lillebælt, Odense, Denmark

Background: Elderly people with dementia are known to be less physically active compared with elderly, healthy people, emphasizing the need for interventions in order to maintain a high level of independence in activities of daily living. In order to meet the multi-facetted needs of people with dementia, also with respect to the dementia-related lack of initiative and motivation, group rehabilitation may have unique advantages beyond those achievable through individual rehabilitation. The aim was to evaluate the effect of long-term, group-based rehabilitation including physical activity on physical performance in elderly, community-dwellingpeople with mild to moderate dementia.

Methods: A cohort study of 18 elderlies, community-dwelling people, diagnosed with mild to moderate dementia, participated in an ongoing rehabilitation program based on integrated physical, cognitive and social activities. The outcome measure was physical performance: the 30 sec sit-to-stand test, Guralnik balance test, 10-metre walking speed test, timed 6-metre walk test, and a timed dual task walk test. The repeated measure ANOVA was used to analyze any overall differences between related means.

Results: No significant effect of time was found for the five outcome meaures during the entire period. The variation in the estimate of most outcome scores was higher within subjects than between subjects during the period. Profile plots illustrated that three of the participants, who experienced severe cognitive deterioration, markedly declined in all physical performance tests.

Conclusion: The expected, progressive deterioration in physical performance was delayed in home-dwelling people with mild to moderate dementia who participated in long-term, group-based rehabilitation. The findings of this study indicate that long-term, group-based rehabilitation has the overall potential to delay deterioration in ADL performance in home-dwelling people with mild to moderate dementia.

PO4.46. Personal communication books for people with dementia

SØRENSEN Kim Michael Alberg, HANSEN Helle Kousgaard

VUK-Aalborg, Nørresundby, Denmark

The aim of this project was to help people with aphasia due to dementia to conversate with other people, and thereby becoming able to participate in their on life and activities of the surrounding society - by the use of personal communication books. The personal communications books were developed at VUK-Aalborg together with each involved person with dementia.  The project is a result of a collaboration between Aalborg Municipality School department and the department of elderly people.  The project took place at VUK-Aalborg, which is a school for adults with cognitive disabilities. VUK-Aalborg has offered cognitive stimulation and training of normal day activities to people with dementia since 2000 - currently 52 students with dementia attend VUK. 

Approximatly 10 percent of the students at VUK have severe linguistic problems, while others have difficulties to a lesser extent - especially loss of nouns. In order to help these persons to communicate with family, cares and other people we have tested the use of personally adapted communication books - made together with the person with dementia and their family.  The project was evaluated through observation of the persons using the communication books - and through interviews with the persons with dementia and their relatives. 

The observations showed that the persons with dementia was happy to use the communication books, and they got better expressing themselves by the use of the books. Interviews showed the the books were used at home when the person with dementia should explain something to relatives and other people - and that the books made it much easier to understand each other.  

PO4.47. Stigma and dementia: our journey

DAVIS Katie1, OPEN DOORS Stigma Research Group2, KEADY John3, SWARBRICK Caroline3, BEE Penny3

1University of Manchester, Manchester, United Kingdom, 2Salford, United Kingdom, 3Manchester, United Kingdom

Dementia affects individuals worldwide, with the World Health Organization estimating there to be around 7.7 million new cases of dementia each year; equating to a new diagnosis every four seconds.  A review of current literature identified that although participatory research is beginning to be utilised within the field of dementia care, the voice of people with dementia is often lost or not recognised.

This poster will present the work of a co-operative inquiry exploring stigma and research. Co-operative inquiry is an approach to participatory research that involves cycles of action and reflection.  Heron and Reason (2006), who developed the model of co-operative inquiry, suggest that ‘good research is research that is conducted with people rather than on people’and highlight that traditional research includes exclusive roles for researcher and participant, yet within co-operative inquiry, those traditional roles are replaced by a partnership that fosters a creative, practical collaboration.

The co-operative inquiry was formed with people living with dementia and care-partners as co-researchers. The term ‘co-researchers’ will be used to define the collaborative nature of the research (Swarbrick, 2015) and is used to describe members of the public and experts by their own lived experience, actively working in partnership with ‘academic researchers’ in all - or parts - of the research process.

The group co-researched the idea of stigma and from this, co-produced an animation based on their own negative and positive experiences of living with dementia.  The animation explores these experiences and puts forward a message of people having a ‘CUP’.  Not of tea or coffee, but of Compassion, Understanding, and Patience.

PO4.48. The first experience of a working group of people with dementia for Federazione Alzheimer Italia

POSSENTI Mario, AROSIO Francesca

Federazione Alzheimer Italia, Milan, Italy

Federazione Alzheimer Italia has activated since late 2017 in Milan a working and confrontation group of people with dementia, so that they can be, within the organization, voice and help to debunk those myths that still today dementia brings with it.

Starting from the precious first Italian testimony and thanks to experiences of international groups, it was possible for the Italian group to move the first steps on mutual knowledge, set job goals and to involve a good number of enthusiastic participants. Currently the group, composed of 5 people with different diagnoses of dementia, meets weekly to discuss various issues; each member of the group feels free to share the strategies identified to cope with daily difficulties, the daily experiences at home and in the community, and, above all, suggestions and messages that they would like to take outside of the group. The group has been involved, as the first interlocutor, in a qualitative study about an active methodology for the re-enactment of memories: the members have shared experiences using the instrument so to be able to evaluate its use in wider contexts.

Benefits that can derive from participating in a working group for people with dementia:

  • Reducing the isolation that dementia often brings with it.
  • Increase the motivation by providing a purpose collaborating with a patient organization.
  • Show the person with dementia he is not alone and that the development of new relationships is possible.
  • Be the spokesperson of a positive testimony
  • Be an invaluable asset for the patient organization and for the Community

The group has already achieved a first important goal: to enhance the quality of life of the participants and to restore the importance of life experience of people that, despite the disease, they continue to be what they are, a father, a mother, a child.

 

 
 

Last Updated: Friday 07 September 2018

 

 
  • Acknowledgements

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

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