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PO1 - Dementia Friendly Society

Detailed programme, abstracts and presentations

PO1 - Dementia Friendly Society

PO1.1. The Influence of Empathic Concern on Views of the Humanness of Persons with Dementia

MCFADDEN Susan, MIRON Anca, NAZARIO Amanda, BUELOW Jennifer, SWENSON Nicole, FEDRAN Christina

We tested whether elicitation of empathic concern through imagining the situation of a person with dementia would increase the amount of evidence of ability impairments needed for individuals to conclude that someone with dementia fails to meet standards of humanness. We used Haslam’s two-factor humanness model (Haslam, 2006) to assess human nature standards (HN Standards; evidence of human nature such as emotional responsiveness, interpersonal warmth, cognitive openness, agency, and memory) and uniquely human standards (HU Standards; evidence of uniquely human characteristics such as moral sensibility, rationality and maturity). Participants were shown a photo of a woman with dementia, and then were randomly assigned to imagine her situation (imagine-other condition), remain objective and detached about her situation (objective/detached condition), or were not given further instructions (control condition).

Participants in the imagine-other and control conditions reported greater empathic concern for the woman compared to the objective/detached participants, both ts>.2.80, both ps<.01.  Participants in the imagine-other condition asked for more evidence of HN and UH characteristics in order to conclude that the woman failed to meet standards of humanness, compared to objective/detached participants, both ts(103)>2.25, both ps<.03. Participants in the control condition also asked for more evidence of HN (p=.08) and UH characteristics (p<.05) in order to conclude that the woman failed to meet standards of humanness, compared to the objective/detached participants. Indirect tests revealed that empathic concern mediated the effect of the imagine-other (i.e., perspective-taking) manipulation on HU standards, but not on HN standards. These findings show the role of empathic concern in how people perceive the humanness of persons with dementia and suggest that those who are encouraged to remain objective about and detached from the situation of persons with dementia are more inclined to dehumanize them.

PO1.2. Making a difference: Can ‘Dementia Friendly Communities’ increase awareness of dementia and help people affected by the condition to feel supported and valued within their community?

HEWARD Michelle, CUTLER Clare, INNES Anthea, HAMBIDGE Sarah.

A Dementia Friendly Community (DFC) is a community where people with dementia are empowered and feel confident, knowing they can contribute and participate in activities that are meaningful to them. In Dorset, seven independent DFC initiatives were created to increase awareness of dementia. The project was evaluated using a mixed methods approach, including questionnaires, interviews and focus groups. The evaluation examined the experiences of people with dementia and their carers, members of the public, Project Workers from the localities, and businesses that became involved, during the first year of activity. Within each locality an increase in dementia awareness raising activity was noted. A successful mechanism for raising awareness within a local community was to provide one person with information about dementia to disseminate to others. Although, limited involvement of people with dementia and their carers meant it was challenging to ensure their perspectives were included. For DFC’s to develop an inclusive, community focused approach to becoming dementia friendly, it is suggested that they follow guidance that identifies 10 areas of focus: involvement of people with dementia, challenge stigma and build understanding, accessible community activities, acknowledge potential, ensure an early diagnosis, practical support to enable engagement in community life, community-based solutions, consistent and reliable travel options, easy to navigate environments, and respectful and responsive businesses and services. By raising awareness of dementia within communities, DFC’s can make a difference to people affected by the condition. However, establishing networks and connections within a community takes time and is an on-going task for all DFC’s to contend with.

PO1.3. Dementia detectives: Busting the myths surrounding dementia in schools

OYEBODE Jan, PARVEEN Sahdia, ROBINS Jan, GRIFFITHS Alys,

The national dementia strategy in the United Kingdom is focused on reducing the stigma attached to dementia through public awareness. This has led to a number of dementia awareness initiatives that aim to reduce the negative connotations associated with dementia and promoting positive imagery and accurate information to the public. Most of the dementia awareness done in the UK has focused on adults. To develop and sustain dementia friendly societies, further work is required with young people. Dementia Detectives is a one hour session dedicated to promoting dementia awareness and is designed for secondary school students aged 14 to 16 years. The main aims of Dementia Detectives are to demystify the condition in order to encourage a positive attitude towards those living with dementia and inspire young people to play an active role in ensuring they live in a dementia friendly society. Dementia Detectives has been piloted with 38 students in a secondary school. Students rated their perceived level of knowledge pre and post session on a 10 point Likert scale. Students’ perceived knowledge improved from an average score of 4.5 to 8. On a 10 point Likert scale students rated the session 7.8 for ease in understanding the information presented, and 7.9 for overall enjoyment. Thirty six of the 38 students said they would recommend the session to their friends and other people. Students highlighted the ‘best bits’ of Dementia Detectives as: learning about types of dementia, group discussions, the videos and discovering how to become a dementia friend. To improve the session, students suggested inviting persons living with dementia to present face to face accounts of their experiences. The pilot suggests that Dementia Detectives has a positive impact on young people’s knowledge and is an important first step to promoting positive attitudes towards those living with dementia.

PO1.4. We and the others: How residents in elderly care facilities perceive residents with dementia

LEVICKA Katarina, VNUK Ivan

The purpose of this poster is to closer how residents with dementia are perceived by the rest of the residents in social care facilities.

Slovakia is still a lack of specialized facilities for people with dementia, particularly with Alzheimer's disease. People with dementia are therefore placed in other types of facilities that are available, mainly elderly care facilities.

However, into these facilities people with dementia are placed along with the other residents. Despite the efforts of most elderly care facilities to generate at least a separate part of the building designed specifically for people with these specific needs, it is not always possible to provide the people with dementia with ideal conditions. As a result, some residents with dementia are in daily contact with the populations of facility that do not have similar specific problems or needs. Their perceptions and behavior towards the residents with dementia is often problematic. Negative approach, accompanied by misunderstanding and rejection is quite common.

This poster therefore focuses on how non-demented residents from residential care perceive residents with dementia. We also describe the possibility of working with the residents so that their perception of residents with dementia would be more positive and bring change in their attitudes and behavior. We discuss results of specific educational-integration program for the residents used in our elderly care facility.    

PO1.5. “Alzheimer: the voice of people living with dementia”

DESANA Marie-Odile

Over the past few years, as diagnoses are made increasingly early, as public information is more and more accessible, as patients are not afraid to speak out anymore… the public’s view of people living with dementia has notably evolved.

The newly acquired visibility within society, stimulated by the means of expression and speech which are now available, has encouraged the forming of new social representations and a change of society’s perception vis-à-vis the illness.

Namely, it has contributed to recognize the people living with dementia as fully legitimate actors whose consent, as well as freedom of choice and expression must be systematically researched.

Far from being reduced solely to the disease, people living with dementia are finally progressively recognized for what they are, and continue to be in spite of the illness: full-fledged humans modeled by their life history, their experience, their personality; people who make themselves fully involved in decisions which concern them; people who wish to make their voices heard and express their experience of the illness and their needs.

France Alzheimer and related diseases has always worked for the voice of the ill to be heard and respected regardless of the form it may take, and has always considered it to be crucial to factor it in the care process. As such, the various actions suggested by the associations in our network attempt to encourage and develop all possible means of communication: language, speech, gestures, attitudes…

For World Alzheimer's Day 2015, our Association again wishes to shed light on the topic of the people living with dementia speaking out, being heard, having their choices, desires and their will respected, throughout their care, from the diagnosis to end of life.

Whether seen from a sociological, psychological, ethical or legal standpoint, habits have evolved. A growing number of expression outlets, improved social inclusion, increased participation opportunities, greater respect for the identity of each people living with dementia, a more personalized care pathway… We will review existing notions, concepts and structures.

The people living with dementia are speaking out, let us listen! Let us give their voice its due status.

PO1.6. The potentiality of expressive and sign language

De ROSA Giuliana, FRANCONE Caterina, SOMMELLA Francesca, De ROSA Guglielmo, BRUNO Patrizia

Introduction: The association A.M.N.E.S.I.A., Italian acronym for Neurogeriatric Diseases and Alzheimer Syndrome Association, has amongst its main objectives, that to provide support to the familiar, informal and institutional network creating a system culture for taking care of the Neurogeriatric pathology.  Amongst the activities that the A.M.N.E.S.I.A. team offers to people affected by Alzheimer, there are artistic laboratories such as the education to theatricality. The pedagogical value of the theatrical experience allows to reveal the active energies of the human expression and to educate the elderly to creativity.

Purpose: The objective of the artistic-theatrical laboratory is found in the expressive action, transforming it into an auto-pedagogical process, and one of development of one’s own creative acting. Hence the objectives have located in the education to the development of attention, logical thinking and the expressive and motor coordination.

Materials and methods: The encounters took place in the home of one of the members of the group. Fundamental was the actualisation of the process of individual and collective empowerment. They started with social activities and viewings of film scenes with Charlie Chaplin, actor to be observed, picked by the activities’ participants. Finally, there was a re-enacting of a “wordless” scene through the reading of simple sentences to express in sign language.

Results: The parameters taken into consideration during the qualitative analysis are: attention, learning, expressivity and motor capabilities, measured at every encounter through a Likert scale of evaluation created ad hoc, made up of ascendant scores from 0 to 4, directly proportional to the level of adequacy of the single ability. The maximum of scored points manifested itself in the attention and expressivity items.

PO1.7. Antidepressants for the treatment of agitation and aggression in Alzheimer’s disease

ŽMUC Veranič Lea

Background:Behavioral and psychological symptoms (BPSD), especially aggression and agitation are a common accompaniment of dementia and are often responsible for a large share of suffering of patients and caregivers. There are many different treatment options available for the BPSD treatment. Antidepressants are often used in patients with Alzheimer’s disease (AD), but efficacy in the treatment of aggression and agitation is not well documented.

Subject and methods:A 6 week prospective, structured clinical trial was conducted in AD patients. 35 patients were recruited and patients were divided to escitalopram group, where the maximum daily dose of escitalopram was 10 mg in the morning and standard treatment group (STG), where treatment of BPSD was standard.  Primary efficacy measures were the 10 item Neuropsychiatry Inventory (NPI - 10) and change from the baseline in the Cohen-Mansfield Agitation Inventory (CMAI).

Statistical analysis:SPSS for Windows was used to manage data. Counts (percentages) for categorical variables were used, as well as mean (SD) for normally distributed continuous variables. ANOVA was conducted to evaluate scores from baseline over week 6 and mixed model analysis was used to compare the two treatment groups over the total follow up period.

Results:Demographic and clinical characteristics at baseline were similar across the two groups. Improvement of aggression and agitation according to NPI and CMAI scores has been shown in escitalopram and standard treatment group from baseline to week 6. No statistical difference was found in the efficacy of escitalopram and standard treatment group.

Conclusion:Escitalopram could be an option of the treatment of aggression and agitation in AD patients.

PO1.8. Ethical problem: dignity and self-determination of people with dementia against “locking up” these people in the name of their safety

GROBELNIK Jera

There are 44 million people in the world diagnosed with any kind of dementia. Statistical prognosis say that by the year of 2050 this number will increase up to 135 million.

Therefore, taking care of people with dementia is a great challenge these days. For families, for health and care systems, for local and national governments.

 I would like to highlight one ethical problem or dilemma regarding “locking up” people with dementia with excuse that it is for their own safety and wellbeing. Is it really?

This question goes for those who live at home as well as for those who live in the institutional care.

Can people with dementia get lost because they are disoriented in time and space? Yes, unfortunately they can. Can they get hurt because of that? Yes, unfortunately they can. Can “locking up” people helps to prevent these accidents? Sometimes it can. However…

Do people with dementia understand why there is a closed door that they cannot open? Do they feel safer? What kind of reactions and feelings locked doors bring out to them?

For who are we really locking the doors?

How can we develop an environment, a society that does as much as it can to recognize, accept and help people with dementia and at the same time allows these people to maintain their dignity, self-determination and never forgets that accidents are unfortunately a part of a life?

PO1.9. Social pedagogical concepts in working with patients suffering from dementia

KOBENTAR Radojka, ZORC MAVER Darja

Theoretical background: The societal resources for the care of the elderly population, especially those with cognitive disorders, do not guarantee the necessary support for dementia patients' quality of life. The new treatment paradigm hence encompasses the plasticity of aging, subjective feelings and individual characteristics of the individual.

Methods: The quantitatively analyzed data was chosen by direct observation, polling and patient documentation research. The eligibility criteria for the subjects were, minimum age of 65 years, living in a nursing home a diagnosis with dementia. The reliability of the scales was verified with the alpha-Cronbach testom. The level of statistic reliability was p=0.05.

Results: The sample of 233 patients, included only 15% of men. The sample average age was 86 years [± 6,3 years]. In average women were 4 years older than men, 86,7 years of age [±5,9 years] and men were 82,5 years old [±7,2 years]. Patents that have fulfilled their social needs with active participations were found to be significantly less dependent of the assistance from other persons (t=3,22; df=231; p=0,001). Furthermore, those treated via the medical model show significantly less social inclusion though there is no statistical difference shown (chi-square=2,13; sp=1; p=0,15).

Discussion: The comprehensive understanding of the patients' problem must also account for multimorbidity, chronicity and the individual personal characteristics of the elderly, which also depends on the level of self-reliance and independence. In the future, more than a purely medical approach we will need to consider changing the current concept of working with patients.

PO1.10. Dementia Outcome Measures: charting new territory

MOUNTAIN Gail, Moniz-COOK Esme, OEKSNEBJERG Laila

This project is funded through the EU Joint Programme for Neurological Diseases and involves members of Interdem (www.interdem.org). It is based in the understanding that there is a need for further work on outcome measurement for psychosocial dementia research that embraces new ideologies and practices in dementia care. The project which will complete in 2015 has been working with this extensive agenda. 

Methods have involved 

  • Reviews of the literature within relevant domains
  • A series of expert, consensus workshops with members of Interdem (including participation by early stage career researchers)
  • Collaboration with other research groups and individuals working in this area
  • Pan European consultation with people living with dementia about what they consider are the important questions to be asked

Results include:

Recommendations regarding which existing outcome measures should be used for psychosocial research, thereby updating the contents of a well cited paper published in 2008 (see Moniz-Cook et al, Ageing and Mental Health)

Consideration of what should be measured in the future taking into account the growing movement to hear the voices of people with dementia

Views of people living with the condition; both in terms of how outcome measures are currently applied and what should be taken into account. 

Outputs:

The work is yielding three publications:

  • An update of the 2008 paper
  • A review of need for new measures to reflect new measurement domains, including recommendations from what exists already
  • An account of the process and outcomes of the pan European consultation with people with dementia and their supporters.

PO1.11. Detection of disorientation to enable situation-aware navigation assistance

KOLDRACK Philipp, HENKEL Ron, TEIPEL Stefan, KIRSTE Thomas

Engagement in cognitively stimulating activities is one of the most effective measures against the decline of cognitive abilities due to dementing disorders today. While outdoor and social activities are cognitively challenging and provide emotional support at the same time. Alzheimer’s disease as the most frequent cause of the dementia syndrome however early affects skills for spatial orientation and simultaneously impedes planning and error compensation abilities. These are necessary to overcome disorientation in unfamiliar environments. People with dementia progressively limit their life-space and diversity of activities in reaction to growing security concerns. It is desirable to provide appropriate guidance in disoriented situations to avoid dangers, while not, in addition, complicating normal mobility in order to maintain a person’s life-space, activity spectrum and cognitive health.

We intend to realize a detection system for disoriented behavior in outdoor situations, that is able to discern different types and causes of disorientation, building on knowledge based computational techniques for human activity recognition, called Computational State Space Models (CSSM). The application of CSSMs depends on a set of sensor data assessed under realistic conditions and labeled with a description of the underlying behavior. This serves as a ground truth for model building and training of its statistical parameters.

We performed 10 sensor and diary based assessments of the everyday mobility of study participants with MCI or mild dementia due to Alzheimer’s disease, each lasting for about 28 days. Additionally 4 accompanied walks along a predefined route in an urban environment took place and are continued until 14 runs are completed. Here the participants have to navigate back to the point of origin, drawing on own navigational skills. The display of disorientation is analyzed by an accompanying psychologist and the additional recording of biofeedback enables to identify stressful environmental influences. The result of preliminary analysis is an ontology for the description everyday mobility, comprising 66 behaviors organized in 8 orthogonal classes. The ontology is applied to annotate the sensor protocols and will soon enable to comprehend and map the causal structure of mobile behavior onto a CSSM for its detection.

PO1.12. The fundamental drama of mankind is repeated in the drama of dementia

FRETER Björn

Man, as we can still ascertain with the aid of Kant’s insights, suffers from a very particular fate, namely that of being besieged by questions which he cannot answer, such as those relating to the existence of God etc. These questions cannot be answered, since they necessarily exceed the limits of human understanding, but they cannot be ignored either.

The ability to pose questions like these is a key characteristic of the fundamental existential situation of mankind. Considerable effort is required to come to grips with this existential determination. Every person must find his or her own particular method of coping with such questions. This makes up a significant part of the human maturing process.

A person with dementia, having already found his or her personal solution to the problem of these unanswerable questions, radically stumbles into this existential situation once again. The tragedy of this repetition is that the people with dementia can only make limited use, if indeed any use at all, of their previously successful biographical strategies. The drama of human existence as such thus repeats itself within a person with dementia. We must recognise the seriousness of this task.

If we must concede this, then it is clear that we must support people with dementia in coping existentially with this renewed task in the best possible way. The existential dignity of this task is no different from that of a young person.

This is very important for the care of patients: people with dementia should be recognised as a people in an existential situation, and should be encouraged and strengthened in this situation in terms of their own particular possibilities. Using this thought, it is possible to establish the dignity of the person with dementia theoretically, in order to demand it subsequently in practical terms.

PO1.13. Perceptions and image of person with dementia yesterday and today in Bosnian society

KUCUK Osman

These are just the names of the chapters!!!!

-Dementia in the Bosnian society

-Traditional acceptance of people with dementia

-War and migration of population

-Acceptance of persons with dementia today

-Number of people with dementia in Canton Sarajevo

-Home care methods for persons with dementia

-Help society

PO1.15. Air travel and Dementia

MUKHERJEE Sujoy, SAHAY Anju

Travelling has become an integral part of modern life but it can be tricky if the passenger is living with dementia or one is travelling with such an individual.    This is particularly challenging when the journey involve air travel, often long haul flights. The prospects of going through noisy and busy airports, long queues at check in and security, several hours in a crowded aircraft, landing in an unfamiliar place and the difference in time zones can all lead to confusion and behavioural disturbances among people with dementia.

It was estimated that in 2010 over 35 million people lived with Dementia across the globe and the number is expected to double every 20 years. It is increasingly common to see such people travelling by air and to make such journeys safe and comfortable should be a key element of our drive to a Dementia friendly society and world. However, research in this area is still surprisingly limited.

We have explored the physiology of flying and its potential impact on people living with Dementia, challenges and helpful advices for people with Dementia and carers, issues around policies and stakeholder participation, indicators of good practice and directions for future research.

PO1.16. Spreading care through the community

DEPONTE Antonella, PACCO Giovanna, BONIFACIO Teresa

Once diagnosed, Alzheimer's disease provokes a great distress in the person and in his/her family. Such a distress involves psychological, physical, emotional aspects and can be dramatically enhanced by the difficulties in finding the relevant information about services and assistance, by the social stigma associated with dementia, by the fragmented composition of the network of the resources. Bureaucratic and helping tasks sum up to the disruptive impact that the diagnosis has per se, making harder the possibility for people with dementia to remain at their own homes.

A model of inclusive care is proposed here, originating from the twenty-year long experience of activity of a no-profit Italian organization that promotes a wide range of services and involves the resources of the community. A system including volunteers, public and private institutions, families, collaborators from different professional profiles has been progressively built from 1995 to this day, with three main goals:

  • to help the person affected by Alzheimer's disease (and other forms of dementia) and his/her family, both in developing an organized and functional care plan, both in react to the psychological distress
  • to spread the awareness and the knowledge about dementia in the population, stimulating participation and involvement in the community members
  • to compel a revision of the whole care system, through coordinating efforts among agencies.
  • Some data are presented about the composition of the system and on its effectiveness.

PO1.18. Developing a code of practice for dementia friendly communities

CAMPBELL Zoe

The Alzheimer’s Society is working with the British Standards Institution (BSI) on developing a code of practice for communities working towards becoming dementia friendly.  This code of practice will provide guidance and ideas about:

  • Who needs to be involved in setting up a dementia friendly community,
  • Aims that should be central to all dementia friendly communities,
  • Areas to focus on the processes needed for your dementia friendly community to operate successfully
  • The positive changes for people with dementia we would expect to see from a dementia friendly community.  

The aim of the code is to provide a framework, recommendations and some minimum standards for areas that are looking to become dementia-friendly and those communities that are part of the Alzheimer’s Society’s official scheme for recognising dementia friendly communities. For those already committed to becoming dementia-friendly, the aim is to build upon and further develop their current plans.

The code defines what dementia-friendly communities are and what to consider when starting or advancing a journey for a community to become more dementia-friendly. It provides guidance about who needs to be involved in setting up a dementia-friendly community, the particular aims that should be central, the processes needed to operate successfully and the outcomes we would expect to see from a dementia-friendly community. It also includes links to relevant resources and sign-posts to information for the public, private and voluntary sectors to be a part of the greater community development process that is required to build a dementia-friendly community.

PO1.19. The influence of Alzheimer’s disease on family caregivers

STIGLIC Neza

Alzheimer’s disease (AD) is the most common cause of dementia and is defined as an irreversible, progressive brain disease. AD effects not only the person who is diagnosed but also brings challenges to those who assume caregiving responsibilities. In 2013, there were an estimated 44.4 million people with dementia worldwide and this number will increase to an estimated 75.6 million until 2030. Consequently each year there are more family caregivers who are facing a physically, emotionally, and financially challenging task.

The purpose of the research project was to investigate the influence AD has on family caregivers. Do they seek informational and instrumental support? Is taking care of a relative with AD a financial burden? Are there any differences between genders in their response to diagnose and are there any differences between partners and children of AD patients in capability of adjustments to new life conditions? Lastly we wanted to research what kind of environment do family caregivers design for patients and investigate signs of exhaustion that family caregivers suffer from.

Results show that effects on family caregivers are generally negative, AD loosens family bonds and relationships due to required high level of care. In most cases caregivers seek information and knowledge from health professionals and nursing-homes. Importantly women tend to react more active (seek informational and instrumental support) when facing diagnose of AD in family in comparison to men, who stay more passive. We did not found significant differences in capabilities to adjust to new living conditions between partners and children of patients AD. Moreover caregivers provide a safe environment for their relatives, but suffer from different signs of exhaustion, such as distress, irritability and anxiety.

We conclude that psychosocial interventions are advised to reduce caregivers’ burden. It is important that caregivers focus on their own needs and get support, both emotional and practical. There should also be more educational programs about Alzheimer's disease and help groups for caregivers, so they could provide the best possible care for their relatives.

PO1.21. Pilot project in St Gillis commune (Brussels):  How to do more with less public financial means for dementia patients:  mobilization of all the potential resources (professionals, population, and environment) available in the commune. Results through 3 real stories of dementia people.

CLOSON Marie-Christine, CAMMARATA R, DUFOUR Anouk, PRAET Jean-Philippe

To support dementia patients and their caregivers a lot of actors often intervene punctually, some without any expertise in dementia, in a crisis situation and are not well coordinated. This lack of coordination induces duplication of tasks (social and medical records…) without efficient return for the patient.  A lot of models plaid for a special case coordinator. This solution creates problems: each actor (physicians, nurses, hospital…) will have the leading role in the coordination and will be paid for it in a context where no additional resources are available. . 

That is why the St Gillis commune develops a continuous and long term strategy supported by the population:

  • To forge pragmatic personal and professional links between the medical  (general practitioners, nurses, pharmacists …), assistance  (housekeeping, …) and social actors (social services, public services, older persons care services, cultural or other activities) working actually in the commune in order to better respond to the needs (medical needs, dependence, solitude, insecurity) encountered by elderly and their caregivers. Coordination in not a formal superstructure of institution or professionals but meetings or contacts between actors around the patient and their caregivers to find pragmatic solutions of each concrete problem.
  • To develop population awareness of their capacity to be useful and to improve to improve the human environment of dementia people and their caregivers:  more attention and very little actions Social cohesion can allow dementia patient to stay alone and help caregivers. It will never be possible to finance on public resources all the needs for the continuity of care of dementia patient at home

Strategy includes several axes:

  • ‘Destygmatisation’ of dementia patient: training and didactic folders
  • “Alzheimer café” every month;
  • Cognitive check-up within the geriatric service of the commune hospital (day care hospital) to identify the main problems to be able staying at home. Visit sat home of an occupational therapist and a social worker of the commune to discuss pragmatic solutions based on all the commune resources. Actually, the biggest problem is often that dementia people and their caregivers refuse progressive external help.
  • Establishment of a volunteer service to help elderly in their everyday life;
  • Establishment of an accompanying card for the older person in case of a problem
  • To profit of the neighbour’s day to create contact with older persons.
  • Actions lead by the pharmacists which whom older persons keep a contact for the renewal of their drugs prescription, can play a useful role by advising them and transmitting information

Through the stories of 3 dementia patients living in the commune during the 10 last years ( since the diagnostic to now), we will show how this organization and mobilization allow to manage pragmatic, human, respectful of the patient and their caregivers solutions along the different stage of the disease.

  • Mister X: 60 year, with early dementia, very difficult social and financial situation, diabetic, blind. Exhausted wife refusing external help.
  • Misses Y: 79 year with dementia, Spanish, alone, crises of paranoia, running away, naked
  • Misses Z: 84 year, with dementia, violent with her husband, daughter living in France. Fusional couple without outside contact and refusing to enter in nursing home

This experience has proved that, much more then timely and  heavy  interventions, a long-term action, supported by population and all the medical and social actors of the commune is necessary to facilitate keeping at home old and/or dementia patients and to support the caregivers.

PO1.22. Peterborough Dementia Resource Centre

DUNNERY Paul

Launched in 2014 the Peterborough Dementia Resource Centre acts as a unique One Stop hub for People with Dementia and Carers to gain a diagnosis and access advice information and support to help them to live well with dementia. Anyone affected by dementia is able to drop into the centre and speak to an experienced member of staff. The range of services on offer at the centre include dementia support services, access to dementia advisors, information sessions, Singing for the Brain, Dementia cafés and training for carers. In addition, Alzheimer's Society is working with key partners from the local health and social services sector, in order to deliver a wide range of holistic services, such as opticians, podiatrists and dentistry, hairdressers, and cookery classes.

The building is designed to be as dementia friendly as possible, with dedicated consultation and diagnosis space and an assessment environment designed with best possible outcomes for people attending. 

We aim to promote choice to our clients and offer our one to one support in a variety of locations that best meets the client’s needs. Clients who accessed combined support report considerably higher outcomes than those who only accessed only one kind of support.

The Centre is centrally located within Peterborough City and is easily accessible. The building houses Consultants, a Community Mental Health team, a day centre facility and a not for profit café run by people with learning disability. 

We see the DRC as the hub of community engagement and activities – promoting Dementia Friends and a local Dementia Action Alliance. The Centre has supported Peterborough achieve Dementia Friendly Community Status. The Centre is also reaching out to local communities and working with them to understand dementia and raise awareness and promote understanding.

PO1.24. Possible explanations for and barriers to allocating and organizing support contacts for people with dementia: A qualitative study with reports from administrators

JOHANNESSEN Aud

Background:Services to make society more inclusive or “dementia friendly” for people with dementia are needed. Support contacts can be one such service. Support contacts are “paid friends”. Their work tasks can be compared with respite care’ or volunteer work in other Western countries. Flexibility, adequate compensation, affiliation and satisfaction, together with potential for building relationship, are factors that stimulate support contacts in their work. The support contact service is rarely used in Norway and little is known why that is so. We therefore carried out present study based on reports from administrators in Norwegian local authorities.

Aim:To investigate administrators’ possible explanations and barriers to allocate and organize support contacts for people with dementia.

Method:The data was gathered from interviews with 35 informants, from 32 local authorities, during 2011. The analysis of data involved qualitative content analysis.

Findings:Three main categories emerged: knowledge, reaching out and management. Knowledge describes the administrator's knowledge of dementia and of the law concerning offering people with dementia a support contact, and is described through two subcategories: formal knowledge and experiential knowledge. The category reaching out describes the circumstances leading families with dementia to apply for help and covers the subcategories supplying information about the service and characteristics of target group receiving a support contact. The category management describes the various ways in which the service may work satisfactory and contains the subcategories recruitment and organization.

Conclusion:Support contacts are considered as a valuable service rated by the administrators. Furthermore, managers need to organize their departments so that administrators have sufficient knowledge about how to make the service available. In addition, support contacts must be given appropriate guidance and knowledge to maintain the service effectively.

PO1.25. Improving the quality of life of people with dementia with targeted rehabilitation

GOMBOC Marjeta

The decrease in physical activity is one of the earlier symptoms of dementia. Together with the consequences of aging leads to a decline in functional abilities of the individual. The result is a higher risk of falling and injuries. The deterioration of physical fitness and harder cooperation of the patient due to declining cognitive abilities are making the rehabilitation after injuries difficult and are extending it. Regular physical exercise and its positive effects on physical and mental well-being of patients with dementia help to improve the quality of life, but the approach to the patient should be appropriately adapted to the patient’s abilities.

The purpose of the study was to determine the improvement of motor skills achieved through regular and targeted exercise in patients with dementia.

The study included patients with moderate to severe decline in cognitive abilities. We carried out an individual rehabilitation program, which included exercises for flexibility and muscle strength, balance training and training of getting up and walking.

The efficiency was monitored by three timed tests: the Timed Up and Go Test, 10 Metre Walk Test and Rivermead Mobility Index. Measurements were performed before inclusion and after completing the program.

The study included 40 patients. 34 have completed the 3-week program. The results showed statistically significant improvement in motor skills in all three tests.

Execution time of the Timed Up and Go Test was shortened after rehabilitation on average by 33.4 s (t = 4.68, p = 0.000). The 10 Metre Walk Test was shortened after completed rehabilitation on average by 32 s (t = 4.63, p = 0.000). The result of the Rivermead Mobility Index after rehabilitation increased by an average of 3.5 points (t = -8.61, p = 0.000).

Regular physical activity has favourable effects on functional abilities of patients with dementia, which we also proved with our study. Nevertheless, many patients with dementia remain immobile after different health complications. Inclusion of these patients in targeted rehabilitation programs could also improve their quality of life and thereby is performed the mission of rehabilitation.

PO1.26. Partnership between Bistrot Mémoire and cultural disposals

DONNIO Isabelle

The Bistrot Mémoire is born of the desire shared by both family caregivers and professionals to fight the stigmatization around dementia and work towards changing the societal perception of the condition. It is a place, a « café », « pub » (Bistrot), for people to share feelings, experiences and develop social ties between people with memory troubles, Alzheimer disease or assimilated forms and their family caregivers, one afternoon per week. Since we set up the first Bistrot Mémoire in Rennes, in January 2004, the concept, reproduced around 50 times in France, has been developed. We regularly introduced different supports to enable the citizens to reconsider their point of view about these troubles and to involve much more people with Alzheimer disease to take a real place in the community and participate, as citizens, to social life and cultural activities.

Our new project consists in creating partnerships with cultural and artistic structures, both linked with a “plateforme de répit”, one of the Alzheimer plan issue. The purpose is to give “good time shared” for both caregivers and people with dementia. For example, spending an afternoon at the museum, often a lost habit, by frighten, can become a new habit and a creative moment.

Thanks to the EFID workshop organized last year in Vienna, after the EFID award, we have been encouraged in our project in the way it contributes to change the image currently conveyed regarding Alzheimer’s and related conditions. We were invited to communicate differently on Alzheimer and similar diseases, with a slogan “I am still the same person”. And we tried together to bring much more nuance to the manner in which we communicate about these illnesses.

We began by testing, with the participants, the opportunity to propose a first visit to the museum in discussing about “arts and emotions”. As they enjoyed to get involved in the project, and spoke a lot about it in the meetings in Bistrot Mémoire, notably a man who talked about his difficulties to carry on with creative writing, we introduce with him the idea of a writing workshop, a time to make fun of words, to use “a word for another” or to experiment automatic writing as the surrealists.  

Furthermore, we imagined together to collaborate with dancers and choreographers in a project of choreography writing.

Our priority is always to get and give pleasure with the proposal for both people with dementia and caregivers. And finally we are thinking about a film which would express, through these moments and experiences shared, the capacities that can be preserved, developed and enhanced in such moments and with such supports. 

It is a moment of discovery that being ill does not impair feelings, that there is a lot going on inside each person, it is a time when each person is recognized positively, tenderly by the other ones…

There are a lot of resources within each person: the Bistrot Mémoire enhances the expression of everybody, ill person or ken, and can contribute to illustrate the slogan “I’m still the same person”.

PO1.27. Ten years of experience for Bistrot Mémoire in France and a National Union to be representative and evaluate the concept

DONNIO Isabelle

The first Bistrot Mémoire in France is born of the desire shared by both family caregivers and professionals to fight the stigmatization around dementia and work towards changing the societal perception of the condition. It is a place, a « café », « pub » (Bistrot), for people to share feelings, experiences and develop social ties between people with memory troubles, Alzheimer disease or assimilated forms and their family caregivers, one afternoon per week. Since we set up the first Bistrot Mémoire in Rennes, in January 2004, the concept, reproduced around a hundred times in France, has been developed and also with different names as “Alzheimer cafés” or “respite café”. The initial project has entailed the drafting of basic principles, including ethical principles. Respecting one’s freedom of thought is the key word, whether he/she is a professional or a layman. Each new Bistrot Mémoire is supposed to create its own initiative in using these principles, in respect to the local projects and particularities. It’s important for us to be reactive and to keep up the dynamic to contribute to the well being of both persons suffering from Alzheimer disease and caregivers. We regularly introduced different supports to enable the citizens to reconsider their point of view about these troubles and to involve much more people with Alzheimer disease to take a real place in the community and participate, as citizens, to social life and cultural activities.

Since 2006 we organised National Days of Bistrot Mémoire in order to share our experiences, the evolution of the concept in different territories, the difficulties to promote such new types of organisation which do not belong to classical social-care disposals but gives new conditions to welcome relations with people suffering from dementia and their caregivers.  This way we evaluate our proposal and the different results observed in any place.  Through the process of sharing our concerns, we have been growing all together. The large diffusion of the Bistrots Mémoire in France and in other countries (NL, UK, IT, AU) requires more research to gain a better understanding of their potential for socialization and participation of persons with dementia.

The concept of “Bistrot Mémoire” has been first recognized by Foundations and Public Health Insurance, then by public administrations (city, department, region, state), and by the French Alzheimer Plan 2008-2012, particularly in several “plateforme de répit”, one of the Alzheimer plan issue, or in guidelines for promoters who have chosen to settle such initiatives or in different disposals as .

The National Union of Bistrot Mémoire has been found in 2009 in order to be much more representative and to have better recognition by all these institutions. Also, their role in fighting the stigma of the disease should be further investigated. The open access to persons with dementia without any previous assessment, their participation in "normal activities" with others, the opportunity to discuss and share ideas with others, can be seen as a way to stimulate inclusion and recognition. The Bistrots mémoire are set up in the west of France, and a national alliance was established with a website (www.bistrot-memoire.fr) in order to share, define preconditions and provide information about the Bistrot.

PO1.28. Engaging the voice of family carers: the development of a dementia carers campaign network

JOYCE Joanna, LEONARD Tina

In Ireland there are approximately 48,000 people living with dementia. Most of these people are cared for by a family member and there are approximately 50,000 dementia family carers. The Alzheimer Society of Ireland (ASI) is committed to ensuring that the voice of the person with dementia and the family carer is heard by the public and by policy makers. ASI facilitates the Irish Dementia Working Group and the Dementia Carers Campaign Network (DCCN). The DCCN is an opportunity for people who care for someone with dementia to meet and discuss issues which affect them and to campaign and lobby for change.

This presentation will discuss the importance of supporting the voice of dementia family carers. It will trace the development of Ireland’s Dementia Carers Campaign Network, the first meeting of which was held in December 2013.

The presentation will reflect on the role national organisations can play in engaging the voice of family carers and lessons learned during the initial development of the DCCN. It will include examples of work undertaken by the DCCN, highlight issues that have arisen for family carers through their participation and set out the group’s plans for the future.  

PO1.29. About beliefs or why carers / volunteers need support, supervision and coaching

ŠKRLJ Jože

People with disabilities (including people with dementia) should be looked at as subjects (with emotions and rights) rather than the objects (of medical treatment, social protection, physiological needs). If we focus on disease and symptoms rather than on persons, we fail to understand person-centred care. It begins with knowing the person and it requires the carer to recognise and value the person and treat him/her as an individual. Their biography, life experiences and the person’s actual needs as well as their beliefs, their likes and dislikes, even their fears should be taken into account. Therefore, it is essential that they are accepted as they are and not as we think they should be. 

Kate Swaffer said on her blog (http://kateswaffer.com): "Dementia care is caring for people who often do not know they need care, and don’t want to be in care; no wonder we may become angry and upset."  And many carers become angry and upset too. Although they are 'trained' to be good and effective 'helpers', they often perceive the wants, activities and reactions of the persons with dementia as 'an attack' on their competencies or on their willingness to help. The terms like 'distressed reaction', 'behavioural disturbances', 'combative dementia', 'challenging behaviour' are indicators of such conclusions. As our behaviour is led by our beliefs and expectations about the persons with dementia, we should be aware, that our reactions are (un)conscious part of caring, therefore, it is very important to recognize them.

Person-centred care for people with dementia has to be accompanied with caring of caregivers. Different types of support such as supervision, coaching and others (peer, expert, individual, group ...) should be essential for a professional approach of formal carers and also for effective care of informal carers, which enhance wellbeing of the persons with dementia.

PO1.30. Carer involvement in cognitive-based interventions for people with dementia: a systematic review

LEUNG Phuong, ORRELL Martin, ORGETA Vasiliki

Background:There has been increasing research interest in evaluating cognitive-based interventions (CBI) for people with dementia which comprise of cognitive stimulation (CS), cognitive rehabilitation (CR) and cognitive training (CT) approaches.  Given emphasis on the importance of ‘dyadic’ interventions, identifying whether these improve outcomes for people with dementia and their carers is important. The present review aims to systematically review current evidence base on carer-led cognitive based interventions for people with dementia and their effects on carer well-being and relationship functioning.  

Methods:Systematic electronic databases were searched for randomised controlled trials (RCTs). Two reviewers worked independently to select trials, extract data and assess risk of bias for each of the studies meeting inclusion criteria, according to the criteria set by the Cochrane Review Group.   

Results:  A total 8 studies (n=938) dyads of people with dementia and family carers were included in this review.  Four different levels of carer involvement were identified; 1) carers delivered the intervention, 2) carers delivered the intervention and received additional support by being provided with information about dementia and coping strategies, 3) carers were encouraged to repeat the cognitive-based activities at home with people with dementia and 4) carers were involved in repeating some activities at home and at the same time received psycho-educational support. Four studies examined quality of life outcomes for carers and most studies measured anxiety and depressive symptoms. Only two studies examined relationship functioning. 

Preliminary analyses and pooling of the data indicate that carer-led cognitive-based interventions may be useful in improving carer well-being but further high quality studies are needed. 

Conclusions:Our preliminary results show that limited data from two studies of carer-led CBI for people with dementia may enhance carer well-being.

This review suggests that future carer involvement in CBI should be investigated by studies with sufficient sample sizes.  It is important for future research to consider intervention duration and ‘dose’ of effect; as well as developing carer-led cognitive based interventions guided by interpersonal dementia caregiving theories.    

PO1.31. Experiences and perspectives of people with dementia and their carers in taking part in a carer-led cognitive stimulation intervention: A qualitative study 

LEUNG Phuong, ORRELL Martin, ORGETA Vasiliki

Background: Individual cognitive stimulation therapy (iCST) is a carer-led intervention for people with dementia. The iCST programme is a randomised controlled trial (RCT) that provides opportunities for people with dementia and their family carers to take part in a wide range of enjoyable and pleasant activities to stimulate thinking and general memory. The iCST programme is the first RCT to conduct an embedded qualitative study to explore the experiences and perspectives of people with dementia and family carers in taking part in a carer-led cognitive based intervention.  

Methods: A sub-sample of 23 dyads of people with dementia and family cares who completed the carer-led cognitive based intervention took part in semi-structured in-depth interviews.  Data was analysed using Framework Analysis. 

Results: Major themes emerging from the data gathered were opportunities of being stimulated, being active in every-day life, ‘getting closer’,  and understanding dementia in every-day life. The study findings suggested that taking part in the iCST programme provided general intellectual stimulation, helping people with dementia to ‘think better’ and increase their alertness and awareness.  Some people with dementia and carers reported benefits of engaging enjoyable and pleasant activities which helped them to revisit or focus on new interests and hobbies. Many people with dementia and carers found that doing the activities together, provided opportunities to revisit ’shared values’ enhancing mutual understanding and strengthening their relationship.  It also provided carers with ‘awareness of the needs’ of their relative.   

Conclusion: There are several limitations in this qualitative study such as a convenience sub-sampling. Most participants interviewed have done well with the intervention and data could have been affected by social desirability bias.

This study provides further insight about the person with dementia perspective in engaging in home-based cognitive interventions led by carers. Some participants did not remember details of the activities but they were able to reflect on feelings of enjoyment. A considerable number of carers emphasised that iCST provided the frame for gaining a better understanding of the needs of the person with dementia, possibly by making carers more aware and sensitive to the person’s cognitive limitations.

PO1.33. Long-term and short-term predictors of worries about getting Alzheimer’s disease

CUTLER Stephen J., BRĂGARU Corina

Among older persons, Alzheimer’s disease (AD) generates higher levels of fear than any other disease.  Concerns about cognitive functioning and worries about developing AD are also related to poorer health and lower psychological well-being.  However, much remains to be learned about predictors of worries, concerns, and fear and especially from a long-term perspective.  Thus, in addition to selected short-term effects, the principal objective of this research is to examine long-term effects of self-perceptions of cognitive functioning on current worries about developing AD.  Data for the study come from the University of Michigan’s Health and Retirement Study.  We use up to ten measurements of self-perceived cognitive functioning collected from 1992 to 2010 for respondents 50 years of age and older at the time of their entrance into the study.  Demographics (marital status, age, education, and gender), beliefs about the role of genetics in AD, and personal knowledge of someone with AD are other variables included in the study. The data are analyzed using the full information maximum likelihood procedure within a structural equation modeling framework. The results show evidence of both long-term effects of cognitive self-assessment and short-term effects of beliefs and personal familiarity on worries about getting AD.  Specifically, a cumulative history of negative self-assessments of memory functioning, knowing someone with AD, and believing that being a first-degree relative of someone with AD increases one’s chances of having AD are all independently associated with higher levels of worry about getting AD.  These findings reinforce the importance of examining cumulative subjective assessments of cognitive functioning as predictors of worries about developing AD.  They also add to the body of information indicating that knowing someone with AD is associated with worries, and they point to the importance of beliefs and knowledge about the genetics of AD as predictors of worries.

PO1.36. Dementia-friendly communication: a win-win for everybody

CONSTANT Olivier

No dementia-friendly society without an emancipatory dementia-friendly communication. Only in this way, we can reach a global change of attitude. The roots of the still existing stigma on dementia starts already with our shared visions on ‘dementia as a disease’ and ‘dementia as a caring process’. The consequence: negative perceptions that have an impact on the quality of life of all ages, not only elderly people.* Therefore, there is an urgent need for innovative communication visions, strategies and methods. One thing is clear: if we want to involve all relevant stakeholders in a dementia-friendly community without barriers, we have to focus on added values and bottom-up strategies. Because of the impact of dementia-friendly communication on early diagnosis (as indicated during the first global WHO Conference on Dementia in March 2015), adequate training is needed. In this presentation, we combine the experiences of different small and large scale actions to break down the taboo concerning dementia in Belgium. Moreover, we learn from the latest conducted survey of the Flemish Expertise Centre on Dementia to measure perceptions on dementia across the country.

The goal: a transparent communication model that gives people with dementia and their caregivers the place they deserve: not in the margin, but at the center of a warm society. The key ingredients: a ‘tone of voice’ tailored to different groups, a layered and creative mix of media channels (online and offline), a proactive approach and the most important of all: the voice of people with dementia as a touchstone throughout the whole process. Inclusion, autonomy, permanent incentives and breaking down walls between health care and other policy areas are the essential basic conditions.**

Everybody must dare to step into the world of people with dementia and learn from them. This takes time and patience, but the return for daily care practice and local policy will be priceless. Only if we dare to give meaning to the communication needs of people with dementia in every step of the process, we can really do justice to their dignity. The Belgian statistics are a call to action: the time is now to anchor the message of empowerment, across national borders. To conclude, we put our analysis in international perspective to clarify future learning points, challenges and opportunities. A cross-national dementia-friendly communication strategy is needed more than ever to preserve and intensify commitments made in all European countries.

*‘Perceptions on dementia, a matter of choices’, Belgium, Olivier Constant (2013)

**Masterclasses dementia-friendly communication strategy, The Netherlands, Olivier Constant (2014 & 2015)

PO1.40. Sharing the journey: a pilot study in creating enriching relationships through expressive art

BURNS Michelle

Art as a creative process enhances the lives of those living with dementia in many ways. It provides an avenue for expression, it becomes a therapeutic tool for evolving cognitive and physical abilities, and it offers an opportunity to build autonomy and independence.

Expressive art activities are an integral part of progressive dementia care but they can be challenging to execute successfully. Facilitators often observe anxiety, frustration and apathy, making it difficult to develop genuine connections. Over the past 8 years, I have developed an innovative expressive arts program to help address these issues in a non-pharmacological and often touching way.

As the Creative Director at Senior Access Adult Day Services in San Rafael, CA, I initiated a pilot study to test the hypothesis that caregivers can replicate this creative process to cultivate a deeper connection with people living with dementia. This method incorporates intentional steps that encourage interaction, helping caregivers experience spontaneous and striking moments that build meaningful rapport. Caregivers learn to recognize these moments as pivotal in the pursuit of dignified care.

The pilot study consists of a comprehensive workshop demonstrating the practical tools of this method. Caregivers participate in an instructional creative session as students and then facilitate their own creative sessions for individuals with dementia using these tools.

At this presentation I will share the outcomes of evaluations and reflections to determine what impact this method has on the caregiver’s ability to connect with the person living with dementia and the possibility of replicating this method in other care communities. This study embodies the ongoing effort to increase quality of life for people living with dementia, to honor their evolving place in society and to provide support for caregivers.

PO1.42. Come to your senses – sensual architecture for people with cognitive riscs

DIETZ Birgit

As life expectancy continues to increase around the world, the need for new ideas on how to create an environment that is stimulating for all the senses is becoming more and more urgent. It is our senses that deliver us information on the state of our environment and our body´s position in relation to it. Every part of the body is involved in that process. Good design suitable for both, for the elderly and for people suffering from dementia can help to facilitate the processing of such sensory impressions and to minimize any misinterpretations.

The presentation is based on different investigations in acute care hospitals and care homes. We introduce planning parameters which stimulate all senses and also offer safety and comfort. On top, we can reduce length of stay in hospitals, reduce falls and safe caretime.

PO1.43. Counseling Services Network for promoting dementia prevention and non-pharmacological interventions within public local authorities

SAKKA Paraskevi, EFTHYMIOU Areti, LAVDAS Michalis, PANTELIDOY Stella, MASTROGIANNAKIS Tasos,

There are 200,000 people living with dementia in Greece and 400,000 family carers looking after them. Compared to existing needs, large areas of the country are not covered by any specialised service. Athens Association of Alzheimer’s Disease and Related Disorders (AAADRD) and Association for Regional Development and Mental Health (EPAPSY) in collaboration with municipalities in the metropolitan area of Athens and in Cyclades islands have developed a project for promoting dementia prevention and non-pharmacological interventions for people with dementia and their carers in the local community. The project is funded under the program “We are all citizens” by EEA and Norway grants. Bodossaki foundation is the National funds operator for Greece.

Since November 2014, 9 Dementia Counseling Centres have been established in Athens area and 4 in Cyclades islands. All Centres operate under the supervision of AAADRD and EPAPSY multidisciplinary health care professionals’ team.

The services provided are: 

a) Dementia prevention: awareness campaigns, cognitive screening, cognitive training groups of healthy elderly

b) Interventions for people with dementia: diagnosis and follow-up, non-pharmacological interventions for people with Mild Cognitive Impairment and dementia

c) Interventions for carers: seminars, psychoeducational interventions, counseling services

d) Training of health care professionals already employed by the municipalities

AAADRD and EPAPSY are responsible for the service provision till the end of the project, April 2016. Health and Social Care Consultant, CMTprooptiki will evaluate the quality of services provided by the Counseling Centres and disseminate results to all relevant stakeholders.

A core aim of the project is to develop guidelines for dementia counseling services in Municipalities in Greece. In this respect, we strongly believe that the health care professionals of the municipalities who have been evolved and collaborated with the implementation team, will continue the service provision to their local community after the end of the project.

PO1.44. The alzheimer café: an espresso with friends in adagio time

BARTORELLI Luisa, GIUBILEI Annalisa, BANCHETTI Serena, ARCANGELI Francesca, CHERUBINI Laura, LEVI Stephanie, RAGNI Silvia

The Alzheimer café, born in Northern Europe, arrived in Italy in early 2000. The goal was to prevent isolation of people with Alzheimer’s and their families by giving them an opportunity to get together socially and to discuss their problems openly.  Alzheimer Uniti has followed this philosophy choosing non-institutional meeting places that can accommodate people with Alzheimer’s disease.  Alzheimer cafes, also called Memory cafes to avoid the impression of a therapeutic setting, however, still provide dignified “places of caring”, offering psychological support and information. They also promote social contacts and create networks of solidarity.

Material and Method:  Alzheimer Uniti has opened and runs six Alzheimer cafes, which operate twice a month and are managed by a psychologist and a voluntary helper. Five of the cafes are in the city of Rome and the sixth is in the coastal town of Fiumicino.  In honour of World Alzheimer Day in 2014, a new Memory cafe was inaugurated in the center of Rome, near the Parliament, and it is very popular thanks to the participation of invited guests (writers, actors, musicians, singers) who involve the people in activities.  Alzheimer Uniti intends these cafes to be comfortable spaces, in a protected environment, where people with dementia can feel that they are the protagonist, have a voice and can avoid stigma.  Cafes are attended by an average of 10 families and participants are normally people with a low to medium stage of dementia and their caregivers. A satisfaction questionnaire is distributed.   

Results and Conclusion: By observing the evolution of the cafes over the past year one can see a gradual reduction of social isolation for the people with dementia and their families. The caregivers have said that this also leads to an easing of the burden of care.  The Alzheimer café, under the supervision of experienced professionals in the field, is rightfully considered an informal service, part of the network. It is a form of social support where people feel considered and accepted in their fight against the loss of self-esteem.  Also the caregivers feel accompanied along their difficult path.  

PO1.45. People with dementia’s perceptions of the factors that strengthen resilience.

MURPHY Kathy, CASEY Dympna

Participation of people with dementia in family and civic life is diminished by cultures of exclusion and stigmatization.  Building resilience has been identified as a strategy that may help foster social inclusion of people with dementia within communities. Windle (2011) defines resilience as ‘the process of effectively negotiating, adapting to, or managing significant sources of stress or trauma. Strengthening the assets and resources within the individual, their life and environment, ‘facilitate this capacity for adaptation and ‘bouncing back’ in the face of adversity. Resilience is therefore a ‘behavioural process’ built by strengthening personal attributes and external assets.  However despite the recognized potential of resilience theory, the extent to which resilience exists or can be cultivated and nurtured in people with dementia is still relatively unknown. 

Aim: This study explored people with dementias perceptions of resilience and the factors that facilitated or hindered their capacity to develop resilience.

Methods: A descriptive qualitative study was conducted based on the work of Thorne (2004). Semi structured interviews with a purposive sample of eight (n=8) persons with mild dementia were undertaken. The CORTE interviewing framework (Murphy et al 2014) was used to guide the interview process. This process maximizes the meaningful involvement of persons with dementia, ensuring that their voices are heard and to the fore.  All interviews were tape recorded and transcribed verbatim. Transcripts were analyzed for themes and Windle’s (2012) resilience framework was used to guide the analysis.  The criteria identified by Lincoln and Guba (1985) was used to ensure and maintain rigor.

Findings: Findings indicate that personal factors, enduring relationships, social support and community engagement matter to strengthening resilience.  This small study concludes that people with dementia have the capacity to be resilient and building resilience matters for social inclusion.

PO1.46. Living with dementia at home

KRIVEC David, KUNAVER Mojca

Spomincica - Alzheimer Slovenia with its 14 local branches was established in 1997. It is a non-governmental humanitarian organization, aimed at raising awareness and de-stigmatization of dementia and providing support to carers. Through our activities, volunteers of Spominčica focus on meeting growing needs in this field in our society, especially among those affected by the disease and their carers. The main activities of our program “Living with dementia in dementia-friendly environment” are aimed at providing support, information and education to carers and family members of persons with dementia. Throughout Slovenia more than 5000 participants, mainly persons with dementia, their carers and professionals in the field, are involved in our activities.

In implementing our activities, we are seeing an increased demand for assistance at home from relatives of people with dementia. They require 24h assistance that is in most cases provided by their family members, which are faced with heavy physical, psychological, emotional and economic burden and are often faced with social exclusion and stigma.

For that reason, we have successfully applied for EEA and Norway grants with a project "Educational Program and Home Aid Group for People with Dementia". The objective of the project is to contribute to the empowerment of groups of citizens suffering from dementia, to the recognition of signs of disease and facing illness, thus reducing the social exclusion of patients and their carers. With the project will transfer innovative good practice to Slovenia. We prepared a training program and a handbook for providing active home aid to the persons with dementia. We have launched a dedicated web site with useful information for carers. In addition to this, a pilot project with training workshops for caregivers and home aid group will be carried out. We plan to organize 4 workshops for volunteers who will act as home aid group.

PO1.47. Dementia and rural housing

GRAY Patrick, HARRINGTON Paul, PASCOE Ann

To show how a partnership has been established between the statutory sector as well as small and large partners from both the private and third sector such as housing associations, private landlords and local trades’ people to examine how local government, professionals and dementia friendly communities can work together to ensure people with dementia remain in their own homes for as long as possible.

How local communities were involved in raising awareness around rural housing issues i.e. that situations are constantly changing and often requiring urgent adjustments which cost money, but as importantly that ordinary families live in ordinary homes and that these homes are their family homes not institutions specifically for people with dementia.

How the rural partnership challenged existing preconceptions around rural housing by using local expertise to ascertain not only the existing rural situation and desires for the future, but also to show how communities could support government to ensure all local housing is dementia friendly. 

And how a Rural Housing Charter can be developed for inclusion in a national Housing Charter.

How those ultimately responsible for funding and others who had authority to make change (generally from urban areas) were invited to a workshop to better understand how community connections and resources could aid in developing appropriate rural housing for dementia families.

How the work was intergenerational and socially inclusive i.e. how the students of the Glasgow School of Arts were invited to develop housing designs that incorporated not only dementia requirements, but also ensured any dementia friendly rural housing was also family friendly.

PO1.48. Working effectively with people with dementia as Peer-researchers in qualitative research

DI LORITO Claudio, BIRT Linda, POLAND Fiona, CSIPKE Emese, ORRELL Martin Orrell

Background: Peer-research, the involvement of People with Dementia (PwD) working as researchers alongside academics is a relatively new approach to Patient and Public Involvement (PPI) in research.

Objective: To report on the pragmatic realities of employing PwD as peer-researchers in projects using qualitative data collection methods and to appraise principles that can be used to assess the impact of peer-research and highlight some positive and negative outcomes for peer-researchers, academic researchers and research outputs.

Design: We searched on PsychInfo and PubMed for specific articles about peer-research with PwD. Very few papers with a focus on PwD as peer-researchers were retrieved and therefore we broaden our focus and gathered information also from studies on peer-research with other service user groups (people with mental health problems, older people). To supplement published research with information on the practicalities of peer-research, we resorted to the toolkits published on the websites of organisations with a focus on health care and dementia such as the Alzheimer’s Society.

Results: 11 studies were included in this review. One specifically addressed peer-research with PwD, two peer-research with older people, four peer-research with other service user populations and four focused on the general population of PwD. Results evidence that the process appears to generate a number of benefits for peer-researchers, academic researchers, participants and the research project as a whole.

Conclusion: This review, which is exploratory in nature, provides preliminary evidence that if risks are properly addressed and principles of good practice are applied, peer-research with PwD feasible and can generate a positive impact. Nonetheless, the extremely limited amount of research addressing peer-research with PwD and the lack of an established method to measure research outputs highlights the need for further research to understand how to effectively involve PwD as researchers.

PO1.49. Who am i?: an insight into the interpretations and social constructions of dementia in singapore

HO Qiao Ying Elaine

Awareness of dementia is lacking in Singapore, despite efforts to promote knowledge of dementia. This is crucial in a rapidly ageing country where the number of people suffering from dementia is expected to rise. Singapore has the fastest ageing population in the Asia-Pacific region, with 15-20% of the total population expected to be aged 65 and above by the year 2030.

This research study seeks to have a better understanding of the interpretations attached to dementia to understand Singaporeans’ lack of awareness of dementia. The perspectives elucidated from the qualitative narratives of 20 individuals can be categorized into three main categories: dementia as a natural process of ageing, medicalization of dementia, and dementia as a social stigma. Structural factors such as education, age, religion, media, social networks and cultural factors are also found to be main contributors to the interpretations of dementia.

While it may be difficult to prevent certain illnesses such as dementia, early intervention may help to alleviate the effects of the disease. This lends importance to the need to understand interpretations of dementia to raise awareness for early detection in hopes of a better management of the condition.

PO1.50. Estimul’art: History, Art and Alzheimer

GELONCH Antoni, TRULLÉN Josep M., ROCA Joan, MORERA Amèrica, BOADA Mercè

Introduction: This project has the goal to stimulate the memory and the cognitive capacities of Alzheimer’s patients by means of the art and the historical memory.

Objective:

To establish an ongoing relationship of activities between Fundació ACE, MFM and MUHBA.

To make it easier for people with Alzheimer’s to have access to activities that are specifically designed for them.

To carry out activities which improve memory and favor the reminiscence processes of the participants through the art and history, and material and immaterial heritage.

To evaluate the impact of these activities with the aim of understanding your impact on the cognitive and emotional development of the patients.

Subject and methods: The initial recipients of the program are 20 Alzheimer patients in mid or moderate stages of the disease, all of whom use SAD (Fundació’ Daytime Care Services) and with a mid or medium-high socio-educative level. During the visits the staff from the Foundation will be there to accompany them as well as their families. The museums visits will be made in small groups and in alternate sessions. There will be a control group which will not visit the museums but will take part in the Fundació’s work sessions.

Results:One aim of this project is to perform a qualitative evaluation of the activities and their effect on the people suffering with Alzheimer’s and their caregivers. An evaluation would be able to show whether the effect is significant enough to improve their quality of life, or whether they are just leisure activities which take up their free time but do not result in any improvements.

In addition to a qualitative evaluation performed by those with Alzheimer’s, the museum will also evaluate their activities. The result of the evaluation will help to future plans.

Conclusions: In progress.

PO1.51. Spouses of people with early-onset dementia. “Fundació ACE” groups’ experience.

GELONCH Antoni, CANABATE Maria Pilar, GUITART Marina, MORENO Mariola, PRECKLER Silvia, ALEGRET Montse, ORTEGA Gemma, HERNÁNDEZ Isabel, RUIZ Agustín, TÁRRAGA Lluis,

Introduction: One of the most important elements that influence on a caregivers well-being of a person with dementia is the social support. It is transmitted through the emotional support and practical assistance provided by natural social networks and social services. In this aspect, in the field of health, social, educative and therapeutic groups have been considered as an effective tool to complement the natural networks.

In assisting spouses of people with early-onset dementia, it was observed that those existing support groups, therefore, groups for people with late-onset dementia did not work; they used to give up the group although they still kept asking for help to manage those changes that dementia brought into their life.

Objective: To present the experience of specific groups addressed to those spouses with early-onset dementia in “Fundacio Ace”.

Subjects and Methods: In response to caregivers needs, in 2010 it was carried out the first group in “Fundació ACE”. Since then, there have been 10 groups, including a total of 104 people.

Results: Participants mean age was 59.5 years old (male: 58%, female: 42%). A 40% of the sample were occupationally active; 79% were taking care alone and, from them, 31% of women had dependent children. The 72% had depressive symptoms, 54.5% were alone and 20% of participants considered that their health had been affected.

We have identified 3 stages in the dynamics group: the first one was revolved around sick spouses, illness and its symptoms; the second one around issues concerning to the care and exchange of information for solving practical problems and the last stage was focused on their own needs.

Conclusions: The participants, as well as having the same challenges than families with late-onset dementia, they have additional needs. The specific groups have been demonstrated to be an effective tool to cover them.

PO1.52. The influence of day care centres for people with dementia on family caregivers: an integrative review of the literature

TRETTETEIG Signe, VATNE Solfrid, MORK ROKSTAD Anne Marie

Objective: Day care centres for people with dementia have received increased attention recently, due to a shift in policy from the use of residential care towards home-based services. The aim of this study is to provide an extended understanding of the influence of Day care centres on family caregivers.

Method: An integrative review including 19 studies was used: Qualitative (n=2), quantitative non-randomised (n=8), quantitative descriptive studies (n=7), and with mixed-method design (n=2). The quality of the studies was evaluated by the Mixed Methods Appraisal Tool (MMAT).

Results: Family caregivers experienced the Day care centres both as a respite service, and to some extent as a support service, improving their competence in caring for the Person with dementia. The quality of the Day care centres influenced its use, and the Family Caregiver’s motivation to care for the Person with dementia. Family Caregiver`s gender, role, individual needs, Person with dementia behavioural problems and need for assistance played an important role.

Conclusions: As a respite and support service, Day care centres have the potential to give Family caregivers a feeling of safety and relief, reduce the caregiver’s burden, and increase their motivation towards their role as caregivers. These outcomes depend on the quality of treatment, and how the service meets the Family caregiver’s needs for flexibility, support, information, and responsibility sharing.

PO1.53. Music and Dementia: A Conceptual Framework

GREASLEY-ADAMS Corinne, REYNISH Emma

In recent years there has been an increasing promotion of musical activities and singing groups for people with dementia. The power of music in the lives of people living with dementia is increasingly being observed through anecdotal reports, case studies and empirical research studies. Whilst the association between music and positive experience initially seems a simple one, our evidence-based framework highlights the complexities that underlie this phenomenon.

Our research sought the opinions of people who are working with, and/or have an interest in the role of music in shaping the experiences of people with dementia. A total of 106 respondents completed an online survey that asked open-ended questions about the impact of music and the mechanisms that might explain that impact and the challenges faced in facilitating music for and with people with dementia. Analysis of this data led to a draft conceptual framework being produced and being shared with 25 people at two working groups focusing on this topic. Feedback from these sessions was considered in the refinement of the conceptual framework.

We will present pictorially the conceptual framework that encapsulates holistically the various complexities that need to be borne in mind when thinking about the impact of music in the lives of people with dementia. The conceptual framework introduced highlights what people think might be happening and why, but also serves as a platform to inform the direction of future research and practice within this field.

PO1.55. Prostovoljska akcija univerzalne preventive pred demenco

HEBAR Karmen

V prispevku predstavljam namen, pripravo, izvedbo in evalvacijo akcije na temo univerzalne preventive proti demenci z naslovom »Z aktivnostjo do kvalitetne starosti«, ki smo jo v okviru dijaškega prostovoljskega krožka ob Dnevu za spremembe izvedli na zavodu AMS. 

Akcijo smo izvedli v obliki medgeneracijskega druženja, v katerem so sodelovali gimnazijci, starostniki okoliških domov starostnikov, njihovi spremljevalci in mentorji prostovoljskega dela na gimnaziji. Z akcijo smo želeli udeležence ozaveščati o demenci ter o rizičnih in zaščitnih dejavnikih. Želeli smo jih spodbuditi k zdravemu stilu življenja (Na socialnem, mentalnem in telesnem področju), saj je slednji lahko zaščitni dejavnik pred demenco. Hkrati je bil namen akcije tudi spodbujanje mladih k prosocialnemu vedenju, k strpnosti in empatiji, k zmanjševanju morebitnih stereotipov in predsodkov ter h gradnji posamezniku (z demenco) prijazne družbe.

Akcija je poleg ozaveščanja, izobraževanja in informiranja o demenci ter o rizičnih in zaščitnih dejavnikih, zajemala konkretne aktivnosti v delavnicah, ki lahko ob kontinuiranem izvajanju Na daljši rok delujejo preventivno, pri blažji obliki demence pa tudi kurativno. V delavnicah so udeleženci z družabnimi in didaktičnimi igrami urili socialne, motorične in orientacijske, vizualne, akustične in telesne sposobnosti. Akcijo smo zaključili z druženjem ob čaju in pecivu ter evalvacijo srečanja, v stilu »Alzheimer Cafe«.

Po izvedeni evalvaciji akcije se je pri dijakih poleg večje ozaveščenosti o demenci ter večji informiranosti o zaščitnih in rizičnih dejavnikih, pokazala tudi visoka stopnja zadovoljstva ob novih neposredno pridobljenih izkušnjah. Pozitivni odzivi vseh sodelujočih in njihova izražena želja po pogostejših tovrstnih akcijah so nas spodbudili k razmišljanju o ponovitvi delavnic. Akcija bi lahko bila primer dobre prakse za šole, predvsem za tiste, ki v svoje programe vključujejo socialne ali/in prostovoljske interesne dejavnosti.

PO1.56. I want to be free

URH Miranda

Dementia brings considerable changes into someone’s life. It changes the life of the person with dementia, as well as relatives who at that moment may not realise they will not be able to face the disease. The distress and powerlessness of the relatives often results in placing the individual in a day care or an institutional care. Probably no one wishes to live like this, unable to take care of himself. The retirement homes, so it seems, are like a lifeboat, helping the relatives to survive the storm waters of emotion. Can this be changed?

Retirement homes in Slovenia are public and private. Those with a concession of Ministry of Labour are mostly private. The main difference is the price. Price-wise the private homes with concession in Slovenia could easily be compared to the prices of retirement homes abroad. Such retirement homes tend to be new and built according to the latest architectural standards. They have special care units for individuals with dementia since they require close monitoring and protection throughout the day. Retirement homes provide different forms of care for people over 65: day care, the centre for elderly, sheltered housing and home care. Persons with dementia entering a retirement home and their relatives can choose the service and make the transition less stressful. However, this depends on the vision, strategy and professional management of the retirement home.

I have decided to focus my research on 4 retirement homes (CS Cerknica, CS Zimzelen, DS Rive, DU Idrija) out of 99 total in Slovenia. My first impression was trough its communication (website, brochure..), later talking to the CEO, interviewing the head of the special care unit and personally visiting each unit. The results are part of my next benchmarking project comparing more institutions, searching for calm in storm water.

 

 
 

Last Updated: Monday 05 October 2015

 

 
  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene
 
 

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