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PO14. Inclusion of people with dementia

Detailed programme and abstracts

PO14.1. Understanding contexts, mechanisms and outcomes of dementia friendly initiatives

THIJSSEN Marjolein1, DANIËLS Ramon2, LEXIS Monique2, PEETERS José3, JANSENS Rianne2, NIJHUIS-VANDERSANDEN Ria3, GRAFF Maud3

1Radboud UMC Nijmegen, Netherlands, 2Heerlen, Netherlands, 3Nijmegen, Netherlands, 4Heerlen, Netherlands, 5Nijmegen, Netherlands

Background: Due to societal challenges of a rising number of people with dementia (PWD), the concept of ‘dementia-friendliness’ is embraced.  Dementia friendliness (DF) is a theoretical construct that underpins initiatives that aim for social inclusion of PWDs and their carers in the community.

Until now, theories about DF do not address the mechanisms that are underlying to the success of initiatives. The aim of this study is to explain what kind of DF initiatives work, for whom, in what circumstances, in what respect, to what extent, why and how they are related.

Methods: A rapid realist review was performed to develop explanations for understanding the success of initiatives to improve social inclusion for PWD and their carers in the community. A realist review approach was used because it is known for its methodological rigour in explaining and evaluating complex social interventions or programmes.

Procedures: Two search strings were applied in 5 databases for scientific and grey literature. Using a bespoke form, DFI and characteristics of the studies were recorded. Subsequent the essence of the realist approach, data were extracted and synthesized by creating context, mechanisms and outcomes configurations (CMOc). Initial CMOc were synthesized into midrange CMOc because of their capacity to bridge between different cases and contexts.

Results: Of the initial 6736 search results, 29 were included based on in/exclusion criteria. Data synthesis resulted in midrange CMOc, explaining how contexts and mechanisms produced the outcomes of DF initiatives. In this presentation, the midrange CMOc, with special attention for the mechanisms, will be presented and discussed.

PO14.2. What does it mean to be a dementia associate? Evaluating the Salford Institute for Dementia Associates initiative

SMITH Sarah Kate1, INNES Anthea2, BUSHELL Sophie2, POYNER Chris2

1Salford Institute for Dementia, Salford, United Kingdom, 2University of Salford, Salford, United Kingdom

In recent years there has been a noticeable, positive shift in awareness regarding the way society engages with people living with dementia and increasing emphasis on their advocacy needs. Hearing the voice of people living with dementia is becoming common practice in research as well as influencing policy and practice. People with dementia can provide accounts of their advocacy needs and the opportunity to share their views and perspectives can illustrate that many people living with dementia remain capable in their continuous and valuable contributions to society despite receiving a diagnosis.

This paper reports the findings from an 18-month evaluation of an initiative designed to include people living with dementia in the governance of a University based Dementia Institute: The Dementia Associates Panel. Social citizenship offers a lens to view people living with dementia as empowered agents, active in the development of research, policy and services and away from a discourse describing passive victims of dementia and its symptoms. The Dementia Associates Panel was created to enable the ‘voice’ of people living with the condition to be heard in the local research, policy and practice agendas, educational programmes, public engagement and community involvement activities.

In month one, thirteen (5 people living with dementia and 8 care partners or former care partners) Dementia Associates agreed to be interviewed to explore their motivations and expectations of becoming a Dementia Associate and how and if this might relate to increased wellbeing. Self-report questionnaire data was collected following each meeting and interviews were repeated at the end of the 18-month evaluation. Our findings indicate that the Associates panel provides a ‘platform’, to utilise experiences and maintain skills to influence research, education and services. The positive impact on wellbeing is aligned with a sense of purpose and achievement, felling valued and having our ‘voices’ heard.

PO14.3. Social engagement for nursing home residents with dementia – Excerpts of preliminary findings

NIELSEN Daniel Krag1, PETERSEN Kirsten Schultz1, VARDINGHUS-NIELSEN Henrik1, THUESEN Jette2, TRENTHAM Barry3

1Department of Health Science & Technology, Aalborg University, Aalborg, Denmark, 2REHPA, University of Southern Denmark, Nyborg, Denmark, 3Department of Occupational Science & Occupational Therapy, University of Toronto, Toronto, Canada

Aim: To explore how activity-based interventions enable social engagement of nursing home residents with dementia, to maintain or increase the social engagement of nursing home residents with dementia, and thus contribute to quality of life and well-being.

Introduction: As a chronic progressive condition, the physical, cognitive and social functioning of people with dementia deteriorates over time. Over 35 million people worldwide live with dementia and with more elderly people this number is expected to increase. The condition has severe consequences for people with dementia, their relatives, and caregivers.

The deterioration of physical, cognitive and social functioning limits social engagement for people with dementia, increasing the risk of social exclusion and decreasing quality of life. Interventions enabling social engagement contributes to maintain social relations for people with dementia, and contribute to quality of life.

The progression of dementia often results in increasing care-need and people with dementia often moves to a nursing home, which further increases the risk of social exclusion, since people with dementia have difficulties in establishing new social relationships. The focus on interventions enabling social engagement in nursing homes contributes to quality of life for residents with dementia.

Methods:

1) Systematic Scoping Review of activity-based interventions enabling social engagement inspired by Joanne Briggs Institute Guidelines.

 2) Fieldwork in two dementia specialized nursing homes with participant observations and ethnographic interviews inspired by Spradley.

3) Findings from review and fieldwork informs the development of a reflection theory to be utilized by healthcare professionals in their relations with the nursing home residents with dementia. Development of reflection theory includes focus groups interviews with healthcare professional inspired by Halkier.

The reflection theory contributes to an alternative reflection model for the healthcare professionals and potentially contributes to evidence-based practice.

Findings: Excerpts of preliminary findings from fieldwork will be presented at the conference.

PO14.4. Cine Relax: an inclusive program developed with Alzheimer persons

RIVASSEAU JONVEAUX Therese1, JACOB Christel1, GERARDIN Pascale2, VERGER Laurence3, SIMZAK Anne Berenice4

1CHRU Nancy Laboratoire de Neurosciences de la Dynamique des Comportements, Université de Lorraine, Nancy, France, 2CMRR CHRU Nancy, Nancy, France, 3CHRU Nancy, Nancy, France, 4Fondation Méderic Alzheimer, Paris, France

Going to the cinema is usually a cultural activity people have easily access to, but it can become a real challenge for individuals with Alzheimer disease (AD) and other neurocognitive diseases. We conducted a preliminary reflection to find adapted and appropriate content and duration for cinema sessions suitable for older people with moderate cognitive disorders.

Through review of the literature we gained an overview over experience made in other countries and also confirmed that such an approach is of value.

Our current approach aims at indentifying the concrete measures that are necessary for the success of cinema inclusive sessions for persons with AD. To underpin the inclusiveness of the project, sessions take place in a local cinema and are open to general public.

We set up a pilot group with relevant partners: Fondation Mederic Alzheimer, Fondation de France, patients and caregivers association, public institutions.

Based on European and international published experience we identified sucess factors as well as factors leading to failures.

In order to adapt the modalities to a French audience and to know best the expectations of persons with AD and their relatives we conducted two focus groups: one with persons below 65 years old, and one with older persons, to explore their expectations and wishes for such activities.

We concluded to start with an exploratory phase of one year with a define model for each age group.

From this exploratory phase, factors that are favorable for the promotion and sustainibility of this activity will be identified, collected to be shared as a "What Works" program.

Having an option to come together aroud a cultural reference that can be shared and which resonates specifically in each generation may prompt exchanges between participants’ ad helps to maintain or even restore social and family relations for persons with AD.

PO14.5. People with dementia maker/ partner of their own destiny

BRUNO Patrizia, FRANCONE Caterina, PENNACCHIO Antonietta, PICCOLO Ludovico

Associazione AMNESIA, Napoli, Italy

Introduction: ‘Appreciating people with dementia (i.e. PWD), trusting them and making them feel part of the community through active participation’ is the goal of every dementia friendly community. The Amnesia Association, as a meeting center based in Villaricca (Naples), has developed a program to promote cognitive and emotional awareness in PWD and their families.

Objectives: The aim of the programme is investigating the progress of cognitive and emotional awareness and the degree of active participation during the development of the therapy. Materials and Methods: The group consists of 4 people (≈ 71.7) diagnosed with mild to moderate AD who performed psychosocial stimulation activities and their caregivers (≈ 69.5) who performed psychological support meetings. The program consisted of a weekly session of 2 hours, for the duration of 6 months. An ad hoc questionnaire was created, with questions regarding the awareness of the deficits and how the proposed activities were useful in achieving the goal set. The administration of the questionnaire took place, for both groups, in three stages: at the beginning of the program, after one month and six months later.

Results: From the qualitative analysis of the results it appeared that the awareness of the disease increased over the three measurements, both for PWD and for family members. This increment is associated with greater involvement of PWD in the choice of the therapeutic activities, as well as in the degree of their active participation.

Conclusions: Although the study is still a 'work-in-progress', a greater effort is needed for a enhanced involvement of PWD and their caregivers. Increasing awareness and preserving a positive self-image helps in making PWD feel as maker of their own destiny with positive repercussions on their quality of life as well as of the caregivers.

PO14.6. A different perspective into dementia to enhance understanding and improve care

GHILARDI Nicoletta1, CAROBBIO Egle Miriam1, PACENZA Caterina1, BRIGNOLI Paola2, BEVILLE Paula Kay3, JACKSON Melora3

1Associazione Insieme a Te Onlus, San Paolo d'Argon (BG), Italy, 2The Care Group, San Paolo d'Argon (BG), Italy, 3Second Wind Dreams®, Roswell, United States

A better understanding of dementia results in better care. One of the tools created to reach this challenging purpose is the Virtual Dementia Tour® (VDT®). This is a scientifically proven method developed by the international no profit organization Second Wind Dreams® (SWD®) and designed to build a greater understanding of dementia through experiential learning. During the VDT, patented sensory tools and instruction temporarily alter physical and sensory abilities of the participants, simulating changes associated with cognitive decline. This experience allows participants to examine how they would like to be treated and encourages them to use their experience as the example by which they treat people with dementia (PWD). The VDT can be conducted both to members of the community (e.g. emergency first responders, police officers, local businesses, houses of worship …) and to staff of care giving facilities such as hospitals, home care agencies, hospices and colleges/universities. Participants to the VDT are more aware of how to provide “person-centered-care” to PWD, because they have experienced what PWD live with every day. A very important result of use of the VDT is a reduction in the use of psychoactive medication once staff has a better understanding of expected dementia behavior. Scientific results can be obtained coupling the VDT with a tailor-made tool (the Dementia Aware Competency Evaluation®, DACE®), developed to assess caregivers person-centered care understanding before and after the VDT.

The VDT has been experienced today by more than an estimated three million people in 20 countries in the world. The Italian partner of SWD is the Associazione Insieme A Te Onlus, which is in charge of the diffusion of VDT in the Country. The VDT program and the main results so far obtained will be shown and explained, with particular attention to the project development in Italy.

PO14.7. Creating a community of care - The Alzheimer Society of B.C.'s Dementia-Friendly Communities initiative

HOWARD Maria

Alzheimer Society of B.C., Vancouver, Canada

Negative attitudes held by friends, family and the general public often discourage people living with dementia from remaining engaged in their community. As evidence of this, in an online survey conducted by the Alzheimer Society of Canada, 46 per cent of respondents said they would feel uncomfortable disclosing a diagnosis of dementia to their family.

Historically, the world has focused on how people living with dementia must adapt to their communities as their abilities change. The Alzheimer Society of B.C.’s Dementia-Friendly Communities initiative flips this around to focus on how our communities must adapt to better support people living with dementia.

Founded in 1981 by a group of caregivers, the Alzheimer Society of B.C. has blossomed into an organization active throughout the province of British Columbia. Our vision is a world without Alzheimer’s disease and other dementias, and that world begins with a more dementia-friendly society, where people affected by dementia are acknowledged, supported and included.

Aimed at supporting the 60 per cent of British Columbians living with dementia who live in the community, our Dementia-Friendly Communities initiative is an essential part of this vision. The initiative forges strategic partnerships with professional sectors – including finance, housing and transportation – to produce dementia-friendly practice guides and create education programs. Working with local governments to develop individualized dementia-friendly action plans, the initiative empowers communities to commit to long-term action to improve policy and accessibility and educate the public so people affected by dementia are included throughout their journey. Advisory groups of people living with dementia and caregivers are close collaborators in this work.

This presentation will demonstrate how a socially inclusive vision can drive concrete action that supports people living with dementia to remain active members of their community for as long as possible.

PO14.8. People with dementia and the development of an age and dementia friendly library

WASSERFALL Ellen1 AKETUN Sigrid2, TORP Mari Gudim3

1USHT Oslo, Oslo, Norway, 2City of Oslo Center for professional development and research, Oslo, Norway, 3Oslo Public Library (Deichman library), Oslo, Norway

Background: Oslo has about 21 000 inhabitants over 80 years and more than 7000 people with dementia. The numbers are expected to double by 2040. In order to meet future health challenges, innovative solutions will be necessary, like services and activities created in cooperation between health care and the cultural sector.

Elderly and people with dementia are vulnerable to loneliness, social isolation and exclusion. Activities that stimulate social contact are important. Libraries are cultural and social meeting places that stimulate activity, participation, belonging and inclusion.

The City of Oslo underlines that cultural attendance, such as going to the library, in order to borrow or read a book or go to a concert, should be possible also for elderly and people with dementia. When the public library is adjusted to their needs it is more likely that they will go there and be able to participate and enjoy the cultural possibilities offered.

The project's aim was to stimulate elderly and people with dementia to use the library. A pilot was tested at Deichman Oppsal, a branch of Oslo Public Library.Two methods were used. Firstly, the target groups were involved to express their wishes about the library’s physical environment, activities and services. Secondly, the library staff and the local health care personnel attended an educational program.

As for the results, elderly and people with dementia expressed positive opinions about the age and dementia friendly adjustments. Library staff felt confident working with the new age and dementia friendly focus. Health care personnel felt confident that the new age and dementia friendly library was a good arena for the target groups.

PO14.9. "Radio Alzheimer!" A new information channel for patients, their caregivers and the general public

GILLY Lorène, ALZHEIMER France

France Alzheimer's and related diseases, Paris, France

From the very start 34 years ago, France Alzheimer has made the dissemination of information one of its 4 core missions. To honor it, the Association has engaged in multiple endeavors.

It is indeed crucial to inform and educate patients and their caregivers on all the issues they face. Many families are looking for knowledge about the illness and its consequences, available financial aid, daily help, in particular for working family members.

In order to bring direct and interactive support, France Alzheimer has recently chosen to launch Radio Alzheimer! To this day, it is the only internet radio in France fully dedicated to the topic of Alzheimer’s and related diseases.

There are multiple issues at stake:

·         to inform the listeners about the illness, its evolution and care methods

·         to give practical advice and to share knowledge from experts (neurologists, psychologists, nutritionists, occupational therapists, researchers) addressing various topics

·         to win over the public opinion battle by lifting stigma and discriminations endured by patients and their caregivers.

The radio also helps raise awareness by giving a voice to those who are primarily concerned: people with dementia and their caregivers.

Radio Alzheimer is not only a great way to spread information, it is also a place for debate and dialogue. It is an interactive tool thanks to the “Comments” section of the radio which enables listeners to share their point of view, questions, rants and experiences.

Since March 2018, two shows have been set up and air on a regular basis:

·         A weekly segment titled “5 minutes to understand” during which an expert is interviewed to help decipher and explain a precise topic (educating the audience in a simple and practical manner)

·         A live bimonthly show “Your questions, our answers”: several experts speak and answer audience questions.

PO14.10. Moving outwards

KRAUS Tania1, HEISE Bernd2, JUNGLAS Lisa1, BARTSCHINSKI Tobias1

1France Alzheimer Vaucluse and Alzheimer Gesellschaft München, Le Pontet, France, 2Munich, Germany

A multicultural approach to enhance communication, tolerance and inclusion in society by valuing difference, arousing curiosity and learning from others

“Moving Outwards” aims at identifying, valuing and sharing different facets of culture as expressed through language, habits of everyday life, the arts and national policies amongst European countries. Multicultural strategies are developed to enhance mutual learning for professionals, patients and families.    

For years, France Alzheimer Vaucluse and Alzheimer Gesellschaft München have set up various programs to meet the needs of people living with dementia and their families.  In spite of the different means implemented by each association, a common theme has emerged showing a convergence of goals, all pointing in the direction of a multicultural approach to questioning and finding adequate ways to include patients in society. The “Meeting Without Boundaries” program -  having shown the relevance of such an approach since 2012, became a source of inspiration for new initiatives on each side of the Rhine and gave birth to a European platform for cooperation and reflection based on a common vision of looking outwards, cherishing the value of difference.

Valuing difference for better inclusion

Language:

·         Multilingual professionals facilitate communication with patients originating from other countries and help maintain relationships with families living abroad

·         Movement workshops are led in three languages

·         Language classes are offered throughout the year. Not only do language barriers fall but they actually become a challenge, inciting communication in a pleasant and joyful way!  

Strategies emerging from different cultures and political landscapes on how to cope with life with dementia are compared, thus contributing to embracing and inventing new adaptive ways.

Transcultural activities in the arts (music, painting, culinary) are shared.

People living with dementia are active actors in the implementation of « Moving Outwards ».

PO14.11. People with dementia sing St Matthew Passion and tell their personal passion stories

ZWIERS Erik1, HEEREMANS Wim2

1St. Participatie met Dementie, Heemstede, Netherlands, 2Heemstede, Netherlands

People with dementia are commonly treated as mere patients, often leading to their (unintended) exclusion from the social and cultural domains in our society. The main goal of our foundation “Participatie met Dementie” is to let people with dementia continue to participate in cultural activities.

We do this through setting-up Participation Choirs and organising concerts in which, together with project singers and (professional) soloists, people with dementia perform the most well-known parts of “St Matthew Passion” by J.S. Bach. During our concerts people with dementia tell their stories of suffering and loss, hope and love.

In 2018, we started off with one Participation Choir, consisting of 54 singers, 12 of which were people with dementia. In 2019, we grew to three choirs, in Haarlem, Leiden and Bergen (NH), with a total of 159 singers, 45 of which had some form of dementia. In 2020, we hope to have 10 choirs perform St Metthew Passion during the Holy Week. Already 7 cities have registered for next year. Besides Haarlem, Leiden and Bergen this means Almere, Ronde Venen, Helmond and Groningen will also have a Participation Choir.

All our choirs are set-up in cooperation with regional care facilities and welfare organisations, choir directors, musicians and choir and project singers.

Our goals: give people with dementia the opportunity to keep enjoying their hobby without restrictions, provide audiences with a beautiful Easter concert, and by telling the personal passion-stories, giving them a better insight into day-to-day life with dementia.

How we achieve this: in the Participation Choirs, people with dementia fully join in. Where necessary they are supported by project singers. During 7 rehearsals, the singers prepare for the concert. The residents of the home and others are welcome to come and listen to these public rehearsals.

PO14.12. At home with you

BOSCHI Federica1, MARIANI Elena1, SERVIDIO Valentina2, DANTI Eugenia3, TROIANO Manuela Pia2, LEUZZI Lucia2, PROLI Luca2, BENATI Giuseppe1

1U.O. Geriatria, Memory Clinic Ospedale Morgagni Pierantoni, Forlì-Italy, Forlì, Italy, 2Rete Magica Onlus, Forlì-Italy, Forlì, Italy, 3Rete Magica Onlus, Forlì-Italy, Forlì, Italy

Background: In Italy, most persons with dementia are living at home: 46.4% with family caregivers and 28.7% with formal ones. It can be overwhelming for caregivers of people with dementia to take care of them and this can have a negative impact on their quality of life, psychological and physical health, social and financial resources.  

Main aims of the present project are to tackle families’ social isolation, informing on their current psychosocial opportunities and on local social services; to provide psychoeducation about the disease and behavioural management strategies; to enhance their resilience by improving their coping strategies.

Methods: The project is funded by the Emilia-Romagna Region. Psychologies with expertise in geriatrics are expected to contact families that could benefit from the intervention. These families are identified by the multidisciplinary team of the local Memory Clinic and by the local social workers. Inclusion criteria are: families in need of understanding and coping with persons with dementia’ behaviour changes; social isolation. A total of 24 families will be involved. Psychological counselling will be provided biweekly for 5 months. The Caregivers Burden Inventory will be administered to caregivers before and after the intervention. Data about real participation to psychosocial or recreational interventions and number of contacts with the local social and health services will be also collected.

Discussion: This project is expected to improve the link between families and local support services; to improve caregivers’ coping abilities to manage challenging behaviours and wellbeing.  

PO14.13. Research involving people with dementia: A human rights-based approach

DIAZ GIL Alicia, BROOKE Joanne, APPLETON Jane, KOZLOWSKA Olga, JACKSON Debra

Oxford Brookes University, Oxford, United Kingdom

Background: Traditional research methods have been proven to be exclusionary towards people with dementia. This raises issues regarding the rights of this group of people to access research and contribute to society. Recent published literature discusses how the benefits of involving persons with dementia in research outweigh the risks. Several dementia organisations are acting as the voice of people with dementia. These organisations advocate for people with dementia and their human rights, claiming their right to be an active asset for research. The PANEL principles (Participation, Accountability, Non-discrimination and equality, Empowerment and Legality) were developed by Alzheimer Scotland and recognised by the WHO as a guideline to protect the human rights of people with dementia. Yet their participation is still limited due to the lack of flexibility of researchers on applying different methodologies that adapt better to the requirements of participants with dementia.

Aim: To discuss the practicalities of a human rights-based framework, based on the PANEL principles, for researchers involving people living with dementia. 

Methodological discussion: The PANEL principles aim to protect the human rights of all persons despite their diagnosis or disability, including the opportunity to participate in society. Currently there is no guidance for researchers on how to effectively involve people with dementia in research. Having a human rights-based framework ensures that the participants rights are protected and gives researchers the ability to be flexible and develop strategies to involve people in any stage of dementia. Issues relatd to participation and informed consent should be addressed with the appropriate methodology in order to adapt to each participant's capacity.

Conclusion: Current research needs to evolve towards a more inclusive philosophy, but it is the researchers’ responsibility to promote the active involvement of people with dementia in research.

PO14.14. SDWG - Developing our campaigning priorities

NOONE Archie, RANKIN Wendy, HARGREAVES Carol

SDWG, Glasgow, United Kingdom

The Scottish Dementia Working Group (SDWG) exist to represent and reflect the views of people living with a diagnosis of dementia across Scotland.  Each year, the SDWG review the previous year’s work and decide on the group’s priorities for the coming year.

The SDWG has a membership that includes people at different stages of dementia and also people living throughout Scotland, and it can be a challenge to hear some of the ‘quieter voices’.

To overcome this, we used different methods to meaningfully engage with our membership. These included; Twitter, one to one conversations, local group meetings facilitated by Alzheimer Scotland staff, and the SDWG newsletter. Using these methods, we collated themes and issues on the following questions: (1) What is important to you as a person with dementia? (2) What is important to your local area? (3) What is important to people with dementia?

The feedback that came from the wider membership was taken to a Work Planning Day in February 2019. At this, committee members were able to add their own input during workshop sessions held on the day. We used word clouds alongside the three questions to generate ideas and discussion. Themes were written up on post-it notes and used to form a Scottish flag design, reflecting the SDWG logo. 

Following the Work Plan Day, the key themes were reviewed by committee and grouped into the following umbrella headings which have now been agreed as the SDWG priorities for 2019-2020:

·         Maintaining Independence

·         Local Connections

·         Raising Awareness

·         Supporting Workforce Development

·         Member Development.

These five priorities will inform the work that the group will undertake over the coming year at a local, national and international level.  The SDWG will continuously monitor and evaluate their priorities work and keep their members and stakeholders up to date with the progress.

PO14.16. People with dementia living alone in Denmark

WILLEMANN JENSEN Bolette

The Danish Alzheimer's Association, Copenhagen, Denmark

Results from previous studies indicate that people with dementia living alone are a particularly vulnerable group, but there is a lack of a thorough knowledge of this as well as how activities for the group are best targeted. The present study of people with dementia living alone in Denmark gives a nuanced picture of who they are, what challenges they face, and what support they receive in their everyday lives. The study is conducted in 2018 on behalf of the Danish Alzheimer's Association and is based on a mixed-method approach consisting of a quantitative part – register and survey – and a qualitative part – cases.

The study concludes among others that people with dementia living alone have a lower socio-economic status – this is especially the case for younger men, a larger proportion lives for rent and a larger proportion are treated with psychotropic drugs and painkillers. In addition, the study nuances the mantra of staying in one’s own home as long time as possible; rather it is about avoiding nursing homes. The recommendation based on the results is to develop activities in or near the homes of people with dementia living alone. This supports the work of the association to develop activities aimed at strengthening the social inclusion of the approximately 25,000 people with dementia living alone in Denmark.

Methodologically, the characteristics of people with dementia living alone are compared with those who live with cohabitants as well as with people without dementia who live alone and with cohabitants, respectively. Furthermore, the characteristics are divided into age and gender. The study is carried out by VIVE – the national research and analysis centre for welfare – and the results are incorporated in project RUM’lighed - dementia-friendly environments for people with dementia living alone in general housing areas.

PO14.17. A friendly community at the gates of Rome

BARTORELLI Luisa1, LEVI Stephanie1, PIANTADOSI Giovanni2

1Alzheimer Uniti Italy, Rome, Italy, 2Alzheimer Uniti Italy, Aprilia, Italy

Introduction: The concept of friendly communities for people with dementia has been spreading throughout Europe and beyond, as a vital element in the civic education of the community. It is a model of a social intervention that aims at reducing stigma and exclusion, a source of suffering for affected families. One of the places in Italy where such a project has begun is the city of Aprilia, 40 km from Rome (with 70,000 inhabitants including 10,000 over 65 years and an estimated 650 people with dementia). This project was started by the association, Alzheimer Uniti Aprilia with the collaboration of Alzheimer Uniti Roma.

Method: The objectives are: to change the community’s perception of dementia; to build a more livable city for people with dementia and their families; to be more welcoming and make services more available in all aspects of life; to improve the quality of life for all. To this end, many actions have already been taken such as meetings with the Mayor and City Council to create a memorandum of understanding between the Municipality and Alzheimer Uniti Aprilia. There have been meetings with major local institutions (Police, Civil Protection, Departments of Health and Social Services) with whom a presentation was made for people working in this field. In addition, a new Alzheimer Center was opened within the same location as the association.  A detailed publication has also been distributed. The following steps will be taken: creation of an information center for citizens and a meeting place for people with dementia, their families and people working in the field; organization of an awareness conference for the whole community; training of the police, craftsmen, merchants, high-school students; training of family caregivers.

Conclusion: By mid-October the impact of this new project will be evaluated using appropriate indicators (networks, resources, Qol, etc)

 

 
 

Last Updated: Monday 07 October 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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