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PO3. Dementia-friendly society

Detailed programme, abstracts and presentations

PO3.1. The Fox Valley Memory Project: Creating a dementia-friendly community in the US

McFadden John and Susan

This talk (or poster) will describe the vision, mission, and goals of the Fox Valley Memory Project (FVMP), a multi-faceted approach to creating a dementia-friendly community in northeast Wisconsin (USA).  Our vision for the FMVP is to make quality of life measurably better in our community by easing the fear and isolation associated with dementia, and by increasing access to the resources people need to live well with dementia.  Our mission is to collaborate with other organisations to offer programs and services for persons with dementia, as well as their family care partners and friends, and to encourage practices of hospitality and inclusion that make our community dementia-friendly.  To that end, we have established memory cafes in 5 locations in our region; three of the cafes meet twice monthly and two meet once a month.  Our Care Partners Welcome Center functions as a drop-in site for care partners to get information, become connected to community resources, and receive support for responding to care challenges.  The Welcome Center also sponsors a volunteer group for men with dementia who want to work on projects that will benefit the community.  We are working with Goodwill Industries on outreach to local employers to educate them about dementia and to provide vocational support and guidance to diagnosed persons wishing to remain employed.  Another FVMP component is community education; we have sponsored large community talks as well as Clinical Medical Education programs for physicians.  We are conducting research on many aspects of the Memory Project, including assessing community knowledge about dementia and the physical and social components of our memory cafes.  We actively reach out to long-term care residences in our community, primarily through encouraging staff training in creative engagement activities.  We plan to launch a memory assessment center in August 2013.  Our presentation will describe our philosophy of collaboration with government agencies, foundations, and not-for-profit as well as for-profit organisations. 

PO3.2. Dementia friendly community pharmacies – building participatory networks for community-based care

Plunger Petra, Tatzer Verena, Heimerl Katharina

Background: People with dementia and their caregivers are regular users of community pharmacy services. However, so far only a few pharmacy-based initiatives have focused on their needs apart from medicines management. Based on Palliative Care and Health Promotion principles, the project “Dementia friendly community pharmacies. Community-based health promotion for people with dementia and their caregivers” aims at transforming community pharmacies into dementia-friendly settings supporting dignity and quality of life of people with dementia and their caregivers. Applying principles of community based participatory health research (CBPHR), people with dementia and their caregivers, community pharmacists and health care and community partners will be involved in re-orienting community pharmacies (von Unger 2012, Plunger & Heimerl 2012).

Research Questions and Methods: CBPHR is linking research and interventions, and calling for a cooperation of community partners, professionals and researches, ultimately aiming at creating relevant knowledge for transforming health care practices and settings. The following questions are guiding the partnership-building process: Who are relevant partners/communities to be involved? How can all relevant partners be involved equally? What are experiences and expectations of people with dementia and their caregivers regarding community pharmacies? How do community pharmacists conceptualise re-orientation of pharmacies? To facilitate participation and grasp various perspectives, interviews, focus groups and a needs assessment using appreciative inquiry are being carried out. Transdisciplinary working groups will be organised to develop interventions and community-based projects. Furthermore, all partners participate in relevant discussions and decisions via involvement in project bodies – the steering committee and advisory group.

Results and Discussion: Involvement of relevant partners was conceptualised as gaining interest from professionals - pharmacists, other health and social care practitioners, and community partners – people with dementia and their caregivers. So far, the project succeeded in building partnerships with Alzheimer Austria, a self-help group, community pharmacies and their professional body and health promotion and palliative care organisations, who all provided rich input for the design of the project. Already at this point, differing perspectives on caring for people with dementia and their relatives in pharmacies became visible, which may be framed as problem-based vs. person-centered. First results from the ongoing needs-assessment will be presented and implications for further cooperation and development of interventions will be discussed, as well as potentials and challenges of CBPHR.

PO3.3. Master course for dementia studies at the Danube University Krems, Austria

Auer Stefanie, Span Edith, Adler Christine, Brainin Michael

Success in improving the quality of life of persons with dementia and their caregivers are facilitated if knowledge from different disciplines is integrated. All relevant disciplines have to work together on this important task. There is a serious gap between scientific knowledge and knowledge in practice environments such as hospitals, nursing homes, care environments and the decision making governmental agencies. We developed a curriculum with the intention of covering most of the specialty areas in order to improve the interdisciplinary knowledge of the different participating professionals. This curriculum is organised within the postgraduate teaching concept of the Danube University and it consists of elements of basic biological knowledge about dementia, diagnostic criteria, pharmacological and nonpharmacological treatment concepts, and stage specific care and treatment concepts. Methodological knowledge such as statistics and basic scientific knowledge is part of the course curriculum in order to assist in making international scientific literature accessible. The students are stimulated to practice scientific writing and they are required to formulate a master thesis. The duration of the course is 3 years. The teaching language is currently German. The course was initiated in 2009 and there are 50 students enrolled from different European countries such as Italy, Switzerland, Germany and Austria. The course includes an international faculty. Successful participants have come from various professional backgrounds such as medicine, psychology, social work, nursing, teaching and law.

PO3.4. Journey of Care: World Alzheimer Report 2013

Wortmann Marc, Splaine Michael

Background: The World Alzheimer Report 2013 will be the fifth report of Alzheimer’s Disease International published during World Alzheimer’s Month with the purpose of raising awareness about Alzheimer’s disease and dementia and bringing policy issue into discussion.

Methodology: In this report, that will be published in the week of 21 September, we will do a systematic review on the continuum of care for someone with dementia. It touches on the questions: what do we mean by dependence (long term needs for care)? What is the relationship between disability and dependence? What are the impacts of culture and systems (health, social and welfare) on dependence? We will also look at the independent contribution of dementia to needs for care among older people? How does that compare with that of other chronic health conditions? Why is the contribution of dementia so considerable (how and why do needs for care in dementia arise, across the disease course)? Another section will contain the Systems of Care, including the role of the family (informal) carer, community assistance (homecare, nursing assistant, community meals), day-care and other forms of respite, different models of residential care, end of life care and care and support after death Finally, the report will also touch on Quality of care, and how it might be improved,  costs of care and examples from solutions in a number of countries from around the world.

Results: Conclusion and recommendations will be available after 21 September, but likely touch on the need for national dementia policies and plans, with provision for comprehensive continuum of care meeting needs of people with dementia and carers, throughout the disease course

PO3.5. Changing definitions of end of life care: including dementia under its remit

Gysels Marjolein, Evans Natalie, Pool Robert

Objective: The terms used to describe careat theend of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of end of life care as defined by experts in EoL care, from across Europe and beyond, to understand its current usage and meanings, and we consider the implications of including dementia care.

Method: A qualitative survey attached to a call for expertise on cultural issues in EoL care was sent to experts in the field identified through the literature, European EoL care associations, and conferences targeted at EoL care professionals. Respondents were asked to identify further contacts for snowball recruitment.The responses were analysed using content and discourse analysis.

Results: Responses were received from 168 individuals (33% response rate), mainly from academics (39%) and clinical practitioners working in an academic context (23%) from 19 countries in Europe and beyond. 29% of respondents said explicitly that there was no agreed definition of EoL care in practice and only 14% offered a standard definition (WHO, or local institution). 3% said that the concept of EoL care was not used in their country, and 5% said that there was opposition to the concept for religious or cultural reasons. Two approaches were identified to arrive at an understanding of EoL care: exclusively by drawing boundaries through setting time frames, and inclusively by approaching its scope in an integrative way. This led to reflections about terminology and whether defining EoL care is desirable.

Conclusion: EoL care’s remit is expanding, globally and in terms of timing and conditions. Including dementia under its remit, raises questions both about the effects of EoL care on dementia as about the consequences of dementia for the understanding of EoL care.

PO3.6. The impact of war and living with dementia

Cutler Clare

The impact of war experiences on the lived experience of dementia is currently unknown. Living with personal memories of war is a reality for many (veterans, civilians, children, nurses). Prior research has examined the relationship between experiences of war and post traumatic stress disorder, yet has neglected the impact of war experiences on living with dementia. With the population ageing, the number of people with dementia are expected to rise, and hence the issue of past war experiences on the lived experience of dementia requires more attention.

This poster will report a review of the evidence that has linked experiences of war with experiences of dementia, through three societal constructions:

  • Societal understandings of dementia
  • Societal understandings of war and conflict
  • Societal understandings of post-traumatic stress disorder.

This doctoral work will work with people with dementia who have firsthand experiences of war, enabling exploration into this gap in knowledge in dementia research. In grasping an enriched understanding of past war experience and living with dementia, this project has potential to facilitate carers, family members and medical professionals in tailoring the care they provide which will lead to greater quality of life among people with dementia.

PO3.7. Lived experiences of caring for a family member with dementia in Malta

Spiteri Deborah, Zahra De Domenico Roberta

Dementia is an umbrella term referring to a number of medical conditions characterised by progressive impairment of cognitive functions and includes loss of memory, difficulty in communication and deterioration of executive functions. In Malta, care for individuals with dementia is mostly provided at home leading to a significant physical and psychological burnout. The aim of this study was to elucidate the experience of caring for a family member with dementia. Semi-structured interviews were conducted with six caregivers in whom four were the children (three daughters, one son) with the rest being the spouses (one husband, one wife) of a relative with dementia. The interviews were audio-recorded, transcribed and analysed. The findings indicate that the caregivers’ life changed dramatically from the moment their relative was diagnosed. Different factors determined why caregivers decided to pursue this role and included family loyalty (obligation, commitment and duty) and reciprocity of care. With disease progression, caregivers became fully immersed with their relative’s care, sometimes even at their own expense, that they experienced a downfall in their overall quality of life. With time, they lived through several kinds of losses with caregivers grieving mostly the psychological loss of their loved one. Despite this hardship, caregivers managed to cope effectively and identified several positive aspects of caregiving. In conclusion, this study continues to add on previous data on how family members cope with dementia in the Maltese islands and highlights the need of providing community care support in various aspects of dementia management.

PO3.8. The Alzheimer Society of Finland urges Finns to TAKE CARE!

Erola Leena

In 2013, the Alzheimer Society of Finland raises awareness with the campaign titled TAKE CARE! The campaign begun from a true recent story: a woman with Alzheimer's disease wandered outside her home and got lost during a freezing winter day. She walked around for hours wearing only her nightdress, but nobody stopped her and no one asked her if she needed help; unfortunately she died later the same day in a hospital. Someone should have done something! The Alzheimer Society of Finlandwants to build a safer life for people with memory-related diseases by raising awareness about safety issues as well as the basic human rights. The TAKE CARE! campaign is challenging all Finns to take care of themselves and the people around them. We all need each other occasionally and no one should have to survive alone.

The campaign will:

  • Make everyday life safer for the people with memory-related diseases.
  • Raise awareness among Finnish people to take care of the people with memory-related diseases.
  • Recruit you!

Anyone can be part of the campaign and for example join as a volunteer Memory-Friend. Campaign is engaging a broad range of people and organisations, maybe also including unusual allies, who can help make the case, generate public support, and build public will. 2013 will be filled with activities: The campaign has already begun and will run World Alzheimer’s Day on 21 September. On 1st of February, The Alzheimer Society of Finlandheld a forum for policy makers, member associations and the media in the Parliament of Finland, so called Little Parliament. Take Care is a communication campaign which consist of several activities for example media events, seminars, Facebook campaigns and other happenings. In addition, campaign will gather urgently needed information about technological innovations, for example the use of technology or informative mobile applications etc. that help to ensure a safer environment and maybe also more freedom for the patient and for the caregiver. Campaign is executed in co-operation with the Finnish National Rescue Association.

PO3.9. Quality of life in community

Bundaleska Olivera, Neloska Lence

There is period in human’s life when the spouse stays alone, after the death of his partner and after his or her children leave the home to raise their own families. In most of cases, those persons are deeply disappointed by the new circumstances which take away the simplicity from every-day life. Usually, they can't manage the new life situation being unable to take care of themselves and they become deeply depressed thinking that nobody needs them.Patients reaching for help in our institution, mostly come in such a condition of deep depression, being obsessed by suicidal ideas, ideas of not being useful and ideas of material collapse, overwhelmed by dissatisfaction with their destiny.In order to make their stay more interesting and attractive, a working therapy and an occupational therapy is organised, of course according their choice. This therapy is organised and conducted by working therapist. The patients are working on various hand-made things such as knitting's of socks, sweaters, etc embroidering, making various things out wood and straw. All these things produced, are than sold among the personnel of the institution. Special attention is paid to their cultural and amusement life. Many dancing groups, famous singers and children from the different school come to entertain the elderly. Religious and state holidays are celebrated regular, as well.At meetings, besides the members, the Manager and an expertise team of psychiatrist, psychologist, social worker, nurse, the work therapist are always present. With their presence and active participation in the discussion, they give a huge contribution to the Club meetings. Club meeting are of open type. All their activities above mentioned are extremely helpful in keeping the patients fit and in avoiding the dark thoughts. The patients after they therapy are not longer emotionally and intellectually destroyed and the will for life is brought back.

PO3.10. Enrichment cognitive strategies for brain stimulation

Karamberi Manto, Dalana Niki, Solias Andreas, Degleris Nikos

Background: Recent research suggests that psychological interventions have equal value with AchEI in an holistic approach of dementia’s deficits. Especially in BPSD their implementation at first is usually effective avoiding in parallel the drug side effects.

Objective: To examine and compare the effectiveness of psychosocial interventions in three cohorts at the community: amnestic MCI individuals, early ALZ patients and moderate stage ALZ patients.

Methods and techniques: At first we use different tools according to each cohort based theoretically on Cognitive – Behavioural Case Management approach. Reminiscence emotional therapy, Behavioural activation, Reality orientation therapy  (ROT), Social skills training, Solving problems strategies, Snoezelen formula, Aroma and music therapy etc are the most popular and efficient non pharmacological treatments for individuals (45-50 minutes) and for group sessions (100 – 110 minutes). The appropriate use of electronic devices (e.g. computers, GPS etc) is strongly recommended because it enhances cognitive reinforcement and alternative functional adjustment depending on the case.

Results: The combination of ROT, music therapy, reminiscence approach and social – behavioural activation improves the patient’s capabilities and delay the memory and functional decline. Assertiveness training aims to reduce care – givers depressive mood and anxiety and high hopes for the future.

Conclusions: The non – pharmacological interventions provide an effective tool in parallel with AchEI to improve median temporal lobe deficits increasing at one hand the brain neuroplasticity and at the other hand fight the diseases stigma.

PO3.11. Psychoeducation for caregivers of Alzheimer’s and related disorders patients (cognitive – behavioural approach)

Solias Andreas, Karamberi Manto, Degleris Nikos

Scientific studies have shown that psychoeducational programmes improve the patient’s ability and willingness to stay in long-term treatment, reduce readmission rates and ease the burden of care. Self awareness, interpersonal learning and catharsis are basic therapeutic factors involved in group process. Altruism, emotional re-experience of the primary family vibration and acceptance from the group have been acknowleged as therapeutic factors but regarded as less significant.

Caregivers who participate in cognitive behaviour groups favor of a better sense control for their lives and also their environment (Hatzidimitriadou’s 2002). The ‘helpers therapy principle’ as described by Roberts et al (1990), helps both, ‘transmitter’ and ‘receiver’, of the advice and makes compliance more effective. In parallel practical - educational information and developing support system guide-lines supplemented by written and other materials were demonstrably effective. Understanding of the interaction between the person and his/her environment through reality testing constitutes a key factor for cognitive and behavioural therapeutic techniques. The holistic intervention aims to improve the quality of life of the patients and their families.

PO3.12. Photovoice projects: building blocks for a dementia-friendly society

Ataie Jutta E., McGovern Justine

Medical progress in diagnosing dementia has created a new experience of living with the illness. This experience is no longer dominated by the final stages of the illness; rather, it is characterised by a prolonged uncertain state of living with ongoing cognitive decline. This state can last for many years. Research reporting the experience of this period of decline from the perspective of individuals with the illness has attempted to shift away from a predominantly medical view of dementia. These studies have informed our understanding of the psycho-social-spiritual experience of the illness.

However, both the scientific and the popular community have difficulties integrating this paradigm shift and dementia continues to attract “the stigma of a psychiatric illness” (Benbow, 2000). Though progress has been made in supporting older adults with dementia, much remains to be done to further integrate this population into community life. This paper argues that research projects using photovoice methodology can be a particularly powerful way of raising awareness about dementia in the community by amplifying the voices of individuals living with the illness.

Findings from a photovoice project investigating the experience of early-stage dementia suggest that through a process that involved taking photographs, small group discussions, photo exhibits, and presentations, participants were empowered to develop positive perceptions of self and identify barriers and facilitators to community integration. Although communities may have wanted to further integrate older adults with dementia into community life, the photovoice project showed that the participants were ill-served by existing support services. What emerged from the data was a need for support systems that encourage active participation in illness self-management while acknowledging that well-being is the reflection of a complex interplay between the person living with the illness, the illness symptoms, and the external environment.

In summary, photovoice projects with their inbuilt research-as-empowerment orientation not only increase our knowledge but are beneficial to the study participants and the community at large. The presented project revealed that early-stage dementia was not an impediment to living life as fully as possible; rather it was a lack of support services that hindered the participants. Possible avenues for using photovoice projects to increase dementia awareness and community integration will be discussed.

PO3.13. Developing dementia friendly communities in Ireland

Easton Avril

The Alzheimer Society of Ireland has recently embarked on the development of a new initiative within the organisation - Dementia Friendly Communities.  The initiative is focusing on improving the inclusion and quality of life of people with dementia and their families.  We are working on building evidence to inform the project through expressions of interest from communities across the country that wish to get involved. We envisage that each of these communities of interest will demonstrate a high level of public awareness and understanding so that people with dementia and their families are supported to live well and remain active in that community.  Through our dedicated Project Leader The Alzheimer Society of Ireland is offering guidance and signposting each of these dementia friendly initiatives across Ireland.  We are constantly developing the information and resources available to assist them to develop and promote their community to be dementia friendly. 

We are also providing each community of interest with small scale financial support for local initiatives that promote the inclusion of the person with dementia and their families in their communities.  We hope that these grants will assist the communities to identify and develop new and inspiring initiatives which promote genuine inclusion for people with dementia. Partnership is also a key element of the whole project and we are working closely with the Ageing Well Network and Genio to promote the understanding and growth of Dementia Friendly Communities across Ireland.

Some of the work that has been undertaken by the communities of interest thus far includes:

  • An awareness raising through primary schools in Co Donegal using the Dear Grandma booklet
  • A conference held in Co Clare to promote the involvement of young people (17-25) in our local services and the community
  • The delivery of dementia awareness training to interested university students, community groups and businesses
  • Grown the involvement of people with dementia and their families in the arts and cultural sector through partnerships with art galleries and theatres.

PO3.14. The world’s biggest fundraising day for dementia

Garden May-Hilde, Sellaeg Wenche Frogn

Background: Since 1974 an annual telethon has been hosted by the Norwegian National Broadcaster (NRK) in benefit of a cause promoted by an organisation. This autumn, on 20 October, 100,000 volunteers will visit every household in Norway to collect money for the Norwegian Health Association and their work to improve the lives of people with dementia. Norway’s telethon is the world’s largest fundraising event, as measured by participants and money collected per capita.  It is also a great opportunity to raise public awareness about dementia through the national media. Norwegians can follow the event on TV as the state broadcaster will have eight hours of coverage, including reports about people’s experiences of dementia and results of the fundraising. This year the Norwegian Health Association – an interest organisation for people with dementia and their carers - will benefit from the money raised. It is a voluntary organisation with more than 500 local branches which promote public health and dementia all over the country. Its goal is to combat dementia and cardiovascular diseases through research, information campaigns, preventative measures and lobbying.

Method: On the day of the telethon 100 000 volunteers will reach 1.7 million houses. To mobilize every community in this long country, schools, companies, labour unions, sport organisations, and many more have their own arrangements and promote the cause through their websites and social forums. It is a huge collective effort that Norwegians call ‘dugnad’, when everybody does a little bit of voluntary work for a good cause. The money collected helps fund measures described in the application for the telethon. The Norwegian Health Association will use the money raised to do three key things: first, mobilise more volunteers so that they can help improve the quality of life experienced by people with dementia and increase their participation in society; second, increase information about dementia targeted at businesses, workers, public services and people with dementia and their carers, and third, to build up an interdisciplinary and co-ordinated research programme into the causes and treatment of dementia. 

Conclusion: The world’s biggest annual fundraising event goes this year to the Norwegian Health Association for their work on dementia. This will give Norway’s interest organisation for people with dementia increased resources to help build a more dementia friendly society and fund research into dementia.

PO3.15. Dementia friendly cities

Henry Sabine

Context: People with dementia often have difficulties finding quality information in their own city. Yet, this type of disease requires familiar references; these people need to be able to rely on someone who comes from a similar background and who can provide them with specific, reliable information on the disease.

Rationale: La Ligue Alzheimer is aware of these specific problems. The association’s ‘motto’ is ‘A.I.D.E. près de chez vous’ (Help at your side) because la Ligue believes that most solutions can be found within the surrounding background of people touched by dementia. Several cities have expressed their need to be supported and accompanied in their willingness to develop local activities without considerable expenses. With the ‘Dementia Friendly cities’ concept, la Ligue Alzheimer has been able to meet these cities’ interests and financial limits.

Description: The Dementia Friendly Cities are a network of cities which hold and develop activities related to Alzheimer’s Disease (training sessions ‘Circle of Care’; Alzheimer Cafés; home assistance to carers …) in consultation with ‘La Ligue Alzheimer. These activities must be free of charge. The initiative’s objective is to encourage the integration of people with dementia within their community.  Each activity must contribute to an improvement of the quality of life of people with dementia and their carers, a goal that has been set up on the basis of the World Health Organisation’s (WHO’s) Age-friendly Cities.

Achievements: This objective is stated on a Charter drafted by la Ligue and its partners since March 2011. The Charter specifies the sharing out of the tasks between each signatory. A ‘Proxidem’ will be trained by la Ligue Alzheimer. This person will be a communal agent already working in the field of health & quality of life, disability, and/or the elderly. The training session will be free of charge.

Conclusion: With this initiative, la Ligue Alzheimer– representative of patients and their carers – proves that the association is part of the solution and is able to find equal partnerships for people with dementia in their familiar surrounding background.

PO3.16. Growing rural dementia friendly communities across the Scottish Highlands

Pascoe Ann

To show how one passionate campaigner inspired a group of like-minded people to turn their community from one with little support to one that is fast becoming a dementia friendly community and also a beacon of dementia excellence across the rest of the Highlands of Scotland. How the concept was taken to a new level and a Social Enterprise was established with profits to be reinvested into the community for the benefit of dementia families. How the Social Enterprise’s work was informed by the people they set out to help and how they worked in partnership with businesses, service providers, voluntary groups and individuals who shared their ambition to create a dementia friendly community by:

  • Developing awareness programmes for stakeholders to help local communities become friendly and fulfilling places for people with dementia and their families
  • Developing projects to increase local opportunities for people with dementia so that they can take part in their chosen activities of life for as long as they wish
  • Increasing empathy and support for caregivers by speaking out about the practical and emotional challenges they face
  • Challenging the myths and stigma associated with dementia by developing a series of websites/social media to combat this
  • Overcoming funding challenges to achieve this

And finally how the concept was taken to a new level with lessons learned taken across the Highlands of rural Scotland.

PO3.17. The dementia friendly society in the Netherlands

Bruijs A., Meerveld Julie, Kimenai J.

How can we build a dementia friendly country?

Making live easier: As Alzheimer Nederland we asked our selves: how can we make the live of people living home with dementia easier. To answer that question we start a small research. We found out that we have a strong network in the Netherlands of professional healthcare. Care for people with dementia is given in many professionals ways, by people with knowledge and skills about dementia. But we also found a gap.

The gap: For a person with dementia it is important to participate in the society. Especially in the beginning of the process. To be able to go to the gym, to go shopping, to visit musea, to get a taxi and to visit a restaurant. But to do this it is helpful that others know what dementia is about and know how to handle. In this we so a lack of information by many people and organisations in the civil society.

What others do: In Germany and Belgium we so very interesting projects about teaching society about dementia. In Belgium (Geel) a bakery provided breadbags with handful information and in Bruges they started a dementia friendly street. Much of this work is done by the civil society for the civil society.

What does the Netherlands: In Brabant a provincial organisation ‘de PG- Raad’ played an imported role in this. They made the 10 aims of a dementia friendly society. Together with local governments, social- and cultural organisations, information about dementia and it’s impact is given broadly. For example on schools. In the Netherlands the Rabobank is starting to give information programs on there employees. There is also a training program for taxi drivers. Alzheimer Nederland is collecting the best practices projects and tries to stimulate others to follow, to make the live of people with dementia easier. 

PO3.18. Creating dementia friendly communities: Findings from the UK

Chandaria Karishma, McNamara George

Dementia is now firmly on the public and political agenda. In March 2012, the UK’s Prime Minister’s launched a challenge on dementia and increasingly the focus is on creating dementia friendly communities. All across the UK, people are working together to make their communities more dementia friendly. These areas have tapped into a swell of community commitment for improving the lives of people living with dementia. Importantly they are building an understanding and awareness of dementia; where people with dementia and their carers are encouraged to seek help and support; feel part of their community; and have more choice and control over their lives.

In its report, to be released in September 2013, Alzheimer’s Society has listened to people with dementia and their carers to uncover what it means to them to live in a dementia friendly community. Research for this report involved a survey of over 500 people with dementia, individual and group interviews with people with dementia and their carers, and a public poll of over 2200 UK adults.  While many communities are brokering new partnerships, people with dementia still face significant challenges to engaging more actively in their community. Hosting an Alzheimer’s Society stand and poster presents an opportunity for international shared learning about the experiences of people with dementia and the factors that are critical for creating a dementia friendly community. While the findings of the report are currently under embargo, the report captures evidence and examples of good practice that demonstrate the practical ways we all can make our communities more dementia friendly. All of Alzheimer’s Society work is grounded in the experience of people living with dementia and their carers and within this report a particular focus has been given to hearing from people with dementia from seldom heard groups.

PO3.19. Activities in public space and being a pedestrian goes hand in hand

Brorsson Anna, Öhman Annika, Lundberg Stefan, Nygard Louise

Introduction: Activities in public space are important for people with dementia. To walk is a common mode of transportation and includes traffic situations. There is a lack of knowledge about problematic traffic situations and how people with dementia meet these.

Objective: To identify problematic situations in crossing zebra crossings from photo documentation and from the perspective of people with dementia. The aim was also to identify how they understand, interpret and act in these problematic situations from their experiences and linked to photo documentation.

Methods: It started with photo documentation comprising five film sequences of different zebra crossings. The same film sequences were used in two focus group interviews with people with dementia being pedestrians. The two data sets were analysed by a grounded theory approach and findings were continuously compared to each other.

Results: Adding layers of problematic traffic situations to each other created problematic traffic situations as a whole. The layers were layout and design of streets and zebra crossings, weather conditions, vehicles and crowding of pedestrians. To meet different layers of problematic situations, informants used actions characterised by avoiding problematic situations, traffic light as a reminder and security precaution, following the flow at the zebra crossing and being a cautious pedestrian.

Conclusion: The core, the hazard of meeting unfolding problematic traffic situations when only one layer at a time can be kept in focus was characterised by difficulties to stay in focus and meet the problematic situations as a whole when informants met one layer at a time.

PO3.20. Pilot project for a dementia friendly commune

Closon MC, Praet JP, Zamora C ,Caty M, Mormal M., Baeyens JP

Introduction: In order to allow dementia patients to stay at home as long as possible, if they wish, it is necessary to mobilise all potential resources available in the commune allowing a psycho-medico-social  support of dementia patients and their caregivers. It is also important to foster the ‘destigmatisation’ of the disease and the patients within the professionals and the population environment. A pilot project is lead since 4 years in St Gilles commune (Brussels) in collaboration with the local population and  the medical, social and cultural services of the commune.

Methods:

  • Organisation of pro-active trainings for all the personnel of the commune who is in contact with older people (social services, police, neighborhood police officer, pension service) in order to understand the Alzheimer disease and train them to accompany the demented patients;
  • Establishment of a “Alzheimer cafe” as a friendly place where people having dementia and their caregivers can meet every month;
  • Forge personal and professional links between the medical (general practitioners, nurses, pharmacists …), assistance (housekeeping …) and social actors (social services, elderly care services, cultural activities) in order to better respond to the needs (medical needs, dependence, solitude, insecurity) encountered by older people  having dementia and their caregivers.  Collaboration has been implemented between the different medical actors (medical doctors, nursing personnel, hospital, pharmacists) and social services of the commune in order to foster, if necessary, the older person to make  a cognitive check-up within the geriatric service of the commune hospital (day care hospital). The occupational therapist of this service identifies with the older person the main problems met at home and prioritised them according to the emergency in finding a solution in order for the older person to be able to stay at home. An occupational therapist belonging to the association “Alzheimer Belgique” and a social worker of the commune can, on the request of the older person or the caregivers, visit them at home and discuss pragmatic solutions based on the commune’s resources. A monthly meeting can be organised between the medical and social professionals in order to discuss concrete problems;
  • Establishment within the commune of a volunteer service to help people with dementia  and their caregivers in their everyday life;
  • Creation of didactic folders available in commune services, medical doctors/general practitioners, pharmacist, associations, publics places, including information on condition on “well ageing” ,  the Alzheimer disease, pragmatic recommendations when people have dementia, memory and orientation problems, the resources available within the commune for older person  having cognitive problems (social, medical, financial resources, activities, transport, volunteering, ….);
  • Establishment of an accompanying card for the older person having dementia, in the same format as the ID card, including his/her private address and the persons to contact (close contact, general practitioner, nurse, neighbour …) in case of a problem (orientation problem, accident, hospitalisation, etc. ...). Actions lead by the pharmacists of the commune aiming to take the old persons with dementia  out of their isolation. The Alzheimer patient and their caregivers often tend to isolate themselves and be isolated. The pharmacist which whom they keep a contact for the renewal of their drug prescription can play a useful role by advising them and transmitting information.

Results: 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 and able  to facilitate keeping at home the dementia patients and to support the caregivers.

PO3.21. Building a dementia friendly community in Motherwell town centre: Our story so far

Crockett Arlene

The National Dementia Strategy for Scotland (2010) outlined key priorities for improving the delivery of care, support and treatment to people with dementia and their carers. A key challenge has been how to deliver these improvements within the current financial context. The Scottish Government is working in partnership with three Community Health Partnerships to demonstrate how systems can be redesigned to deliver better outcomes for more people for the same resources.  Each demonstrator site is working on a range of initiatives towards this whole system redesign.   As part of this change programme the partners of North Lanarkshire Dementia Demonstrator site have been working towards building a dementia friendly community within Motherwell town.

Partners from Health and Social Care, Alzheimer Scotland and other voluntary organisations have adopted a community asset building approach, bringing together key stakeholders to enhance and improve awareness of dementia and build greater resilience within Motherwell’s community. Working with local businesses and services, a key aim is building a better environment which enables people living with dementia and their families to be full and active citizens within their community.

This presentation sets out the key stages of building a Dementia Friendly Community in Motherwell.  Firstly, the presentation explains how local stakeholders, including people with dementia and carers were involved in planning. Secondly, the presentation outlines how the partners developed a toolkit for local businesses and services and how we used a launch of the initiative to create awareness. Thirdly the presentation evaluates the effectiveness of the initiative towards building a dementia friendly community and the lessons that have learned.  Finally the presentation considers the future plans to ensure effective evaluation of the work to build a dementia friendly community and extend the work to include all community resources such as transport, faith communities, and more.

PO3.22. Engagement in life style activities and difficulties to use everyday technology: a study of people with Alzheimer’s disease, MCI and controls

Nygard Louise, Kottorp Anders

Background: While the requirement of essentially intact ability in everyday activities in Mild Cognitive Impairment, MCI, has been discussed and challenged, there is still a lack of knowledge as to how subtle activity limitations may be manifested and clinically detected. Recently, the use of everyday technology, ET, has been proposed as a sensitive domain for detection of activity limitations in MCI.

Aim and methods: The aim of this study was therefore to investigate the levels and profiles in engagement in lifestyle activities and the associations with perceived difficulty in ET-use in people with MCI (n=37), compared to people with Alzheimer’s disease (n=37) and controls (n=44). Based on raw data from the Frenchay Activity Index, FAI, a Rasch model was used to generate linear measures of engagement in lifestyle activities. Analysis of variance, ANOVA, and differential item functioning, DIF, were used in the analyses.

Results and conclusions: Significant differences in specific FAI items were found between groups, showing a profile of decreased engagement in certain activities already in MCI. The stronger association between activity engagement and perceived difficulty in ET-use in people with MCI and AD suggests that ET may play a crucial role in facilitating or hindering these people to retain an active lifestyle over time.

P03.23. Dementia friendly initiatives: A report on national initiatives in hospital care for persons with dementia

Splaine Michael

Background: Persons with dementia and their families report that acute care hospitals are not Alzheimer-friendly or capable, and several cost studies also bear this out. At least 4 countries have made improving hospital care for persons with dementia a part of their national dementia plans.

Methods: Author has reviewed all national dementia plans, their background papers and all government reports on implementation. In addition, author has interviewed key informants from patient advocacy organisations in those countries to cross check government claims.

Results: Several practices have been implemented to improve screening for cognitive impairment within hospitals settings or improving the actual hospital stay and quality data is just coming on line.

Learning Objectives: Participants in this session will be able to identify policy changes made to improve hospital care, compare and contrast between the countries, and take away practical steps they might take in their countries dementia plans. 

 

 
 

Last Updated: Friday 30 August 2013

 

 
  • Acknowledgements

    The 23rd Alzheimer Europe Conference in St. Julian's, Malta received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the additional support provided by foundations and companies.
  • European Union
 
 

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