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Dementia friendly communities: supported learning and outreach with the deaf community
- Authors:
- LUNDY Heather, JOHNSTON Alice, NISBET Gwen
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 12
- Place of publication:
- York
Reports on findings from a dementia awareness pilot programme for Deaf people which aimed to break down barriers people in the Deaf community face in accessing dementia support. From January 2014 until July 2015, bespoke resources for the Deaf community were developed and delivered collaboratively by Alzheimer’s Society in Northern Ireland and British Deaf Association (BDA) through awareness workshops in 16 locations. The workshops aimed to develop participants' knowledge of dementia; increase their confidence and skills to help them communicate with and support someone with dementia; and to enable them to become a Dementia friend. A total of 300 participants attended the programme, including Deaf people, Deaf carers of people with dementia, and eight healthcare professionals working with Deaf people. Results found that the workshops were successful in increasing attendees' knowledge of dementia, as well as improving their confidence and skills in communicating with and supporting someone with dementia. Resources developed during the programme included an innovative dementia awareness raising DVD that included British Sign Language (BSL)/Irish Sign Language (ISL), voiced-over and subtitled. Based on the learning from the project, the report makes recommendations for groups and organisations providing dementia awareness, support services and information to the Deaf community and with Deaf people with dementia. (Edited publisher abstract)
Dementia without Walls: reflections on the programme from people with dementia
- Authors:
- AVEYARD Marlene, et al
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 6
- Place of publication:
- York
This document brings together the reflections of ten people with dementia who were involved in different aspects of the Dementia without Walls programme. As well as strengthening the collective voice of people with dementia through the Dementia Engagement and Empowerment Project (DEEP) the programme had two main strands of work in which people with dementia were involved: supporting dementia friendly communities in different locations including York, Bradford, Derry-Londonderry and Sutherland; and projects to encourage people to think differently about dementia, including truth telling with people with advanced dementia, positive risk-taking, rights and disability, and women’s experiences of dementia. (Edited publisher abstract)
Building a dementia friendly community in Northern Ireland: learning from the deed project in Derry
- Authors:
- SEYDAK Eamonn, et al
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 15
- Place of publication:
- York
An evaluation of the DEED project (Derry Engages & Empowers Dementia), an 18-month initiative which provided workshops, programmes and toolkits to support businesses, individuals and community organisations to become more dementia friendly and to challenge misconceptions about dementia. The overall aim of the project was to create the conditions to enhance and improve the experience of people living with dementia and their carers in Derry. The paper suggests that the engagement of almost 3,000 individuals across 47 organisations and more than 100 workshops has made a significant positive contribution to increased awareness, understanding, skills and confidence in supporting people living with dementia in Derry. In addition, the project has explored a new approach through its work in schools, providing awareness raising workshops to increase understanding of dementia among future carers and key individuals. Despite its success, the DEED project has established that involvement of people living with dementia in a traditional steering group setting can be difficult and organisations should be creative about how they secure this participation, considering home visits and video diaries or Dictaphones. The paper includes recommendations and ways forward. (Edited publisher abstract)
Dementia: through the eyes of women
- Authors:
- SAVITCH Nada, ABBOTT Emily, PARKER Gillian
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 43
- Place of publication:
- York
This report is a snapshot of the experiences, thoughts and opinions of women affected by dementia: women with a diagnosis of dementia, women who are caring for family or friends, and women working in one of the caring professions which support people with dementia. Dementia disproportionately affects women but the experiences and voices of women are missing from the research and literature. The report shows that: there is often resistance to talking about dementia as a women’s issue; research needs to focus on the voices, experiences and perceptions of women affected by dementia; service provision needs to reflect the needs, skills and attributes of women with dementia, female carers and the female care workforce; the way women experience dementia is affected by gender, but also by many other factors including education, ethnicity, sexuality, class, age, and disability. (Edited publisher abstract)
How can we make our cities dementia friendly? Sharing the learning from Bradford and York
- Authors:
- HARE Philly, DEAN Janet
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 16
- Place of publication:
- York
This paper contributes to the emerging evidence base by drawing out the key messages from independent evaluations of York and Bradford dementia friendly communities (DFCs). DFCs aim to be accessible, inclusive, welcoming and supportive to those affected by dementia, enabling them to contribute to, and participate in, mainstream society. The report shows that: the active, meaningful engagement of people with dementia and their families is fundamental; DFCs must engage with, and achieve equity for, all people with dementia, whatever their circumstances; practical barriers to inclusion must be addressed if normal lives are to be continued; the human rights of people with dementia and carers must be recognised and promoted; DFCs must be underpinned by ongoing awareness raising, training and positive media coverage; connections and networks, within and beyond the community, are at the heart of DFCs; local grassroots community activity is the bedrock of DFCs and must be supported by strong strategic planning, commissioning and leadership; both primary and secondary health providers have a vital role to play in supporting social inclusion. The report concludes that there is no template and each community must develop its own approach. (Edited publisher abstract)
Developing a national user movement of people with dementia: learning from the dementia engagement and empowerment project (DEEP)
- Author:
- LITHERLAND Rachael
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 19
- Place of publication:
- York
This paper describes the growth of the Dementia Engagement and Empowerment Programme (DEEP) over a three-year period (2012–2015). The programme connects involvement/influencing groups of people with dementia – groups where people with dementia are working together to raise awareness about dementia – to policy-makers and decision-makers, to influence local dementia practice and strategy, and to challenge the existing narrative about what it is like to live with dementia. Using a range of case studies, the paper argues that: involvement is not just about consulting people with dementia, but about providing and responding to opportunities for them to shape their own agendas; local groups are where most people with dementia get support to find their voices; health, social and political bodies should involve people with dementia in setting priorities; appropriate funding of local groups is essential to broker the relationship between people with dementia and decision-makers; local organisations, commissioners and decision-makers are key allies for groups; people with dementia often feel they have a ‘window of opportunity’ to be involved, and therefore need to see results from the energies they put into being involved; and there is a need for mechanisms that support people with dementia to carry on contributing as their needs change, and to ensure that a range of people with dementia, including those with more advanced dementia, can have their voices heard. (Edited publisher abstract)
Evaluation of the York Dementia Friendly Communities Programme
- Authors:
- DEAN Janet, et al
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 43
- Place of publication:
- York
This is a report of an evaluation of the impact of, and learning from, the Dementia Friendly Communities (DFC) Programme in York. The evaluation included structured in-depth interviews with close stakeholders, structured interviews and conversations with people with dementia, carers support group, volunteers and paid workers, an online survey and a workshop to test initial findings. The report identifies: the distinctive features of the York Dementia Friendly Communities Programme; how people with dementia have been involved in shaping the programme; the opportunity to integrate health and social care services and to focus on the wellbeing of people with dementia and their carers; and the learning for others who are trying to build dementia friendly communities. The evaluation found that: the approach in York of encouraging ‘many flowers to bloom’ has led to a range of small initiatives springing up, influenced by people with dementia and carers; sign-up at leadership level is evident, but the middle managers and teams which connect strategic objectives to frontline services need more support and investment; the spiritual, cultural and human assets of York should be utilised more to increase awareness, improve support, and complement already overstretched public sector resources; there needs to be greater focus on integration of health and social care for people with dementia; organisations need to consider how to use relevant legislation to protect people’s rights and to enable people with dementia to engage in community life; it is still difficult to engage with some individuals and smaller groups of people who are marginalised by their economic, social or environmental situations or their fear of stigma, as well as by the degenerative nature of their dementia; and what most people want is the right to live as normal a life as possible for as long as possible. (Edited publisher abstract)
On the journey to becoming a dementia friendly organisation: sharing the learning for employers and organisations
- Author:
- FROST Sarah
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 20
- Place of publication:
- York
This paper shares the lessons that have been learnt in the implementation of JRF’s Dementia without Walls Programme, which aims to support the collective engagement and actions of people with dementia; inspire local communities, organisations and businesses to become more aware and understanding of dementia, and more inclusive; and challenge attitudes, language, misunderstandings and behaviours. The key lessons, which are illustrated though a number of case studies, include: an organisation-wide approach signals that dementia awareness is important for everyone; using a community development approach can help build capacity and lead to more flexibility of approach, greater staff engagement, and a sense of ownership from the bottom up; corporate endorsement and top-down leadership is important in enabling staff participation, giving profile to the work and sustaining the commitment; a wide range of mechanisms can be used to raise awareness and provide information about dementia to staff; effective involvement of people with dementia and carers can help challenge attitudes and assumptions; and providing multiple and varied opportunities for staff involvement can reveal individual interests, skills and passions. (Edited publisher abstract)
Evaluation of the Bradford Dementia Friendly Communities Programme
- Authors:
- DEAN Janet, et al
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 42
- Place of publication:
- York
This is a report of an evaluation of the impact of, and learning from, the Dementia Friendly Communities (DFC) Programme in Bradford, jointly supported by Bradford Council and JRF for two years from April 2013 to March 2015. The report identifies the distinctive features of the programme, which reflect the diverse geography and culture of the district and examines: how people with dementia can influence what a dementia friendly Bradford should be like; the main challenges which will need to be addressed to ensure that progress continues; and the learning for others who are trying to build dementia friendly communities. The evaluation used a range of approaches including individual interviews, group discussions and an online questionnaire. In addition a range of meetings was observed, and the evaluation team hosted a ‘sounding board’ workshop to test initial findings. Overall, the evaluation shows that there is a strategic approach to building dementia friendly communities across a geographically and culturally diverse district. This has engaged key partners at local and strategic levels. The experience of living with dementia is affected by existing inequalities in the population, such as those based on race and economic deprivation, and this means that barriers for some people are worse than others. The report concludes that more involvement of people with dementia and their carers will lead to a better understanding of what makes a DFC for different groups and how to achieve this. (Edited publisher abstract)
How can and should UK society adjust to dementia?
- Authors:
- THOMAS Carol, MILLIGAN Christine
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2015
- Pagination:
- 24
- Place of publication:
- York
This paper explores the application of the social model of disability to dementia, looking in detail at what the social model is, and where it has come from. It addresses: the relevance of the social model of disability to dementia; social attitudes and understanding of disablism and ageism; the nature and development of services, thinking beyond the usual health and social care boxes; the empowerment and involvement of people living with dementia. It aims to stimulate debate about new ways forward in understanding, and ways to meet the needs of the growing number of people living with dementia. (Edited publisher abstract)