scholarly journals The lived neighborhood: understanding how people with dementia engage with their local environment

2017 ◽  
Vol 30 (6) ◽  
pp. 867-880 ◽  
Author(s):  
Richard Ward ◽  
Andrew Clark ◽  
Sarah Campbell ◽  
Barbara Graham ◽  
Agneta Kullberg ◽  
...  
Keyword(s):  
Lived Experience ◽  
Social Engagement ◽  
International Study ◽  
Local Environment ◽  
Active Role ◽  
Social Health ◽  
Visual Methods ◽  
Policy And Practice ◽  
Environmental Support ◽  
People With Dementia

ABSTRACTBackground:In this paper, we report progress on “Neighborhoods: our people, our places” an international study about how people living with dementia interact with their neighborhoods. The ideas of social health and citizenship are drawn upon to contextualize the data and make a case for recognizing and understanding the strengths and agency of people with dementia. In particular, we address the lived experience of the environment as a route to better understanding the capabilities, capacities, and competencies of people living with dementia. In doing this, our aim is to demonstrate the contribution of social engagement and environmental support to social health.Methods:The study aims to “map” local spaces and networks across three field sites (Manchester, Central Scotland and Linkoping, Sweden). It employs a mix of qualitative and participatory approaches that include mobile and visual methods intended to create knowledge that will inform the design and piloting of a neighborhood-based intervention.Results:Our research shows that the neighborhood plays an active role in the lives of people with dementia, setting limits, and constraints but also offering significant opportunities, encompassing forms of help and support as yet rarely discussed in the field of dementia studies. The paper presents new and distinctive insights into the relationship between neighborhoods and everyday life for people with dementia that have important implications for the debate on social health and policy concerning dementia friendly communities.Conclusion:We end by reflecting on the messages for policy and practice that are beginning to emerge from this on-going study.

scholarly journals ‘It's our pleasure, we count cars here’: an exploration of the ‘neighbourhood-based connections’ for people living alone with dementia

2019 ◽  
pp. 1-26 ◽  
Author(s):  
Elzana Odzakovic ◽  
Agneta Kullberg ◽  
Ingrid Hellström ◽  
Andrew Clark ◽  
Sarah Campbell ◽  
...  
Keyword(s):  
Social Networks ◽  
International Study ◽  
Community Dwelling ◽  
Living Alone ◽  
Structured Interviews ◽  
Policy And Practice ◽  
Multiple Data ◽  
People With Dementia ◽  
Study Sites ◽  
Network Mapping

AbstractThe extent of social isolation experienced by people living with dementia who reside in the community has been well acknowledged, yet little is known about how people living alone with dementia maintain neighbourhood-based connections. The purpose of this study is to examine the experiences of people with dementia who live alone, focusing upon how they establish social networks and relationships in a neighbourhood context, and how they are supported to maintain this social context within everyday life. Multiple data collection methods were used including, semi-structured interviews, walking interviews, guided home tours and social network mapping, which were conducted with 14 community-dwelling people living alone with dementia (11 women and three men) situated across the three international study sites in England, Scotland and Sweden. Data were analysed using thematic analysis. The analysis revealed four main themes: (a) making the effort to stay connected; (b) befriending by organisations and facilitated friendships; (c) the quiet neighbourhood atmosphere; and (d) changing social connections. The analysis suggests that people with dementia who live alone were active agents who took control to find and maintain relationships and social networks in the neighbourhood. Our findings indicate the need to raise awareness about this specific group in both policy and practice, and to find creative ways to help people connect through everyday activities and by spontaneous encounters in the neighbourhood.

Service-related needs of older people with dementia: perspectives of service users and their unpaid carers

2013 ◽  
Vol 25 (7) ◽  
pp. 1107-1114 ◽  
Author(s):  
Sylwia Górska ◽  
Kirsty Forsyth ◽  
Linda Irvine ◽  
Donald Maciver ◽  
Susan Prior ◽  
...  
Keyword(s):  
Older People ◽  
Lived Experience ◽  
Service Provision ◽  
Social Engagement ◽  
Diagnostic Procedures ◽  
Political Agenda ◽  
People With Dementia ◽  
Health And Social Care ◽  
The Impact ◽  
Diagnostic Support

ABSTRACTBackground: Dementia is a major cause of disability among older people and constitutes one of the greatest challenges currently facing families and health and social care services in the developed world. In response to trends in dementia prevalence and the impact the condition has on peoples’ lives, dementia care has been placed high on the public and political agenda in the United Kingdom. However, despite significant public resources being allocated to combat the impact of the disease, recent evidence indicates that numerous challenges in relation to service provision remain. This study aimed to develop a deeper understanding of the lived experience of people with dementia regarding their service-related needs.Method: The study made use of data gathered through individual semi-structured, narrative interviews conducted with persons with experience of dementia and their unpaid carers.Results: Although participants were generally satisfied with the services they received, a number of unmet needs related to service provision were identified. In terms of diagnostic procedures the findings of this study indicate the need for early diagnosis delivered through a comprehensive assessment package. The participants also highlighted the need for well-coordinated post-diagnostic support, greater continuity of care concerning the personnel involved, and enhanced access to non-pharmacological interventions to support identity and social engagement.Conclusion: This study contributes to a better understanding of service-related needs of people with dementia in relation to diagnostic procedures and post-diagnostic support.

scholarly journals Beyond the shrinking world: dementia, localisation and neighbourhood

2021 ◽  
pp. 1-22
Author(s):  
Richard Ward ◽  
Kirstein Rummery ◽  
Elzana Odzakovic ◽  
Kainde Manji ◽  
Agneta Kullberg ◽  
...  
Keyword(s):  
International Study ◽  
Social Experience ◽  
Social Practices ◽  
Dementia Care ◽  
Loss Of Control ◽  
Policy And Practice ◽  
People With Dementia ◽  
Care And Support ◽  
Over Time ◽  
World Concept

Abstract ‘Dementia-friendly communities’ herald a shift toward the neighbourhood as a locus for the care and support of people with dementia, sparking growing interest in the geographies of dementia care and raising questions over the shifting spatial and social experience of the condition. Existing research claims that many people with dementia experience a ‘shrinking world’ whereby the boundaries to their social and physical worlds gradually constrict over time, leading to a loss of control and independence. This paper reports a five-year, international study that investigated the neighbourhood experience of people with dementia and those who care for and support them. We interrogate the notion of a shrinking world and in so doing highlight an absence of attention paid to the agency and actions of people with dementia themselves. The paper draws together a socio-relational and embodied-material approach to question the adequacy of the shrinking world concept as an explanatory framework and to challenge reliance within policy and practice upon notions of place as fixed or stable. We argue instead for the importance of foregrounding ‘lived place’ and attending to social practices and the networks in which such practices evolve. Our findings have implications for policy and practice, emphasising the need to bolster the agency of people living with dementia as a route to fostering accessible and inclusive neighbourhoods.

A study protocol: co-designing a mobile application to enhance communication, safety and wellbeing for people living at home with early stage dementia (Preprint)

2020 ◽  
Author(s):  
Karen Davies ◽  
Bie Nio Ong ◽  
Sudeh Cheraghi-Sohi ◽  
Katherine Perryman ◽  
Caroline Sanders
Keyword(s):  
Mobile Application ◽  
Design Research ◽  
Early Stage ◽  
Design Method ◽  
Mobile Apps ◽  
Care Service ◽  
Normalisation Process Theory ◽  
Policy And Practice ◽  
People With Dementia ◽  
At Home

BACKGROUND Background: There is a growing interest in using mobile applications in supporting health and wellbeing. Evidence directly from people with dementia regarding the acceptability, usability and usefulness of mobile apps is limited. It builds on ‘My Health Guide’ which was co-designed with people with cognitive disabilities. . OBJECTIVE Objective This paper describes the protocol of a study evaluating an app designed for supporting wellbeing with people living with dementia, specifically focusing on enhanced safety through improved communication METHODS Method: The study will employ design research, using participatory qualitative research methods over three cycles of evaluation with service users, their families and practitioners. The study will be developed in partnership with a specialist home care service in England. A purposive case selection will be used to ensure that the cases exemplify differences in experiences. The app will be evaluated in a ‘walkthrough’ workshop by people living with early stage dementia and then trialled at home by up to 12 families in a ‘try-out’ cycle. An amended version will be evaluated in a final ‘walkthrough’ workshop in cycle 3. Data will be collected from at least four data sources during the try-out phase and analysed thematically (people with dementia, carers, practitioners and app usage). An explanatory, multiple-case study design will be used to synthesise and present the evidence from the three cycles drawing on Normalisation Process Theory to support interpretation of the findings. RESULTS Results: The study is ready to be implemented but has been paused to protect vulnerable individuals during the Coronavirus in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic, as well as providing insight into the challenges of social isolation arising from living with dementia CONCLUSIONS Discussion: Evaluating a mobile application for enhancing communication, safety and wellbeing for people living with dementia contributes to key ambitions enshrined in policy and practice, championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study uses a co-design method to enable the voice of users with dementia to highlight the benefits and challenges of technology and shape future development of apps that potentially enhances safety through improved communication.

Against evidence-based oppression: Marginalized youth and the politics of risk-based assessment and intervention

2016 ◽  
Vol 21 (2) ◽  
pp. 151-167 ◽  
Author(s):  
Tim Goddard ◽  
Randolph R Myers
Keyword(s):  
Lived Experience ◽  
Evidence Based ◽  
Marginalized Youth ◽  
Youth Justice ◽  
Policy And Practice ◽  
Individual Level ◽  
Needs Assessments ◽  
Actuarial Risk ◽  
The Individual ◽  
Causes Of Crime

Actuarial risk/needs assessments exert a formidable influence over the policy and practice of youth offender intervention. Risk-prediction instruments and the programming they inspire are thought not only to link scholarship to practice, but are deemed evidence-based. However, risk-based assessments and programs display a number of troubling characteristics: they reduce the lived experience of racialized inequality into an elevated risk score; they prioritize a very limited set of hyper-individualistic interventions, at the expense of others; and they privilege narrow individual-level outcomes as proof of overall success. As currently practiced, actuarial youth justice replicates earlier interventions that ask young people to navigate structural causes of crime at the individual level, while laundering various racialized inequalities at the root of violence and criminalization. This iteration of actuarial youth justice is not inevitable, and we discuss alternatives to actuarial youth justice as currently practiced.

scholarly journals The challenges of implementing and evaluating a pilot music and movement intervention for people with dementia: Innovative practice

Dementia ◽  
2016 ◽  
Vol 16 (8) ◽  
pp. 1064-1068
Author(s):  
Patricia Mc Parland ◽  
Clare Cutler ◽  
Anthea Innes
Keyword(s):  
Social Engagement ◽  
Evaluation Team ◽  
Innovative Practice ◽  
People With Dementia ◽  
Funding Opportunities

This paper reports on the challenges associated with implementing and evaluating an innovative pilot music and movement project. The evaluation documents that participants enjoyed the sessions and that they created the opportunity for social engagement although there is little to suggest this is unique to this particular type of intervention. Difficulties included matching the programme to the needs of participants, communicating effectively, and over burdensome paperwork. The paper also comments on the challenges associated with last minute, limited funding opportunities for both the organisation commissioning a project and the team evaluating it. In this case, the evaluation team found that many of the more difficult issues associated with the pilot could have been resolved with more time for planning and preparation.

scholarly journals Couples affected by dementia and their experiences of advance care planning: a grounded theory study

2018 ◽  
Vol 40 (2) ◽  
pp. 439-460 ◽  
Author(s):  
Tony Ryan ◽  
Jane McKeown
Keyword(s):  
Grounded Theory ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Policy And Practice ◽  
Global Policy ◽  
Formal Service ◽  
People With Dementia ◽  
Advance Care ◽  
End Of Life Issues

AbstractGlobal policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.

Understanding Social Isolation Among Urban Aging Adults: Informing Occupation-Based Approaches

2017 ◽  
Vol 37 (4) ◽  
pp. 188-198 ◽  
Author(s):  
Carri Hand ◽  
Jessica Retrum ◽  
George Ware ◽  
Patricia Iwasaki ◽  
Gabe Moaalii ◽  
...  
Keyword(s):  
Social Isolation ◽  
Low Income ◽  
Social Engagement ◽  
Information Access ◽  
Community Based Participatory Research ◽  
Well Being ◽  
Poor Health ◽  
Policy And Practice ◽  
Related Factors ◽  
Aging Adults

Socially isolated aging adults are at risk of poor health and well-being. Occupational therapy can help address this issue; however, information is needed to guide such work. National surveys characterize social isolation in populations of aging adults but fail to provide meaningful information at a community level. The objective of this study is to describe multiple dimensions of social isolation and related factors among aging adults in diverse urban neighborhoods. Community-based participatory research involving a door-to-door survey of adults 50 years and older was used. Participants ( N = 161) reported social isolation in terms of small social networks (24%) and wanting more social engagement (43%). Participants aged 50 to 64 years reported the highest levels of isolation in most dimensions. Low income, poor health, lack of transportation, and infrequent information access appeared linked to social isolation. Occupational therapists can address social isolation in similar urban communities through policy and practice that facilitate social engagement and network building.

Conclusions: grounds for hope

2018 ◽  
Author(s):  
Suzanne Cahill
Keyword(s):  
Human Rights ◽  
Research Evidence ◽  
Dementia Care ◽  
Care Policy ◽  
Policy And Practice ◽  
Policy Initiatives ◽  
The Core ◽  
People With Dementia ◽  
Policy Objectives ◽  
Rights Issues

This chapter will be used to highlight the key contribution this book makes to the field of dementia care policy and practice, as well as identifying some of its limitations. Returning to the core themes consolidated in the UN Convention and introduced in chapter three namely equality autonomy participation and solidarity and based on the topics reviewed in earlier chapters, the chapter points to the gaps that exist between the rhetoric of policy initiatives and the reality of peoples’ everyday lives and the further gap that can exist between policy objectives and research evidence. The chapter argues for a need for much more budgetary and political attention to be focused on dementia and for future iterations of dementia strategies to take cognizance of human rights issues. Human rights legislation rather than being seen as punitive and burdensome should be viewed as a critical framework for guiding all levels of action with people with dementia and their family members.

State-of-the-Art Assistive Technology for People with Dementia

2013 ◽  
pp. 1606-1625
Author(s):  
Clifton Phua ◽  
Patrice Claude Roy ◽  
Hamdi Aloulou ◽  
Jit Biswas ◽  
Andrei Tolstikov ◽  
...  
Keyword(s):  
Assistive Technology ◽  
State Of The Art ◽  
Smart Homes ◽  
The Elderly ◽  
Plan Recognition ◽  
Social Health ◽  
People With Dementia ◽  
Caregiver Needs ◽  
Remote Care

The work is motivated by the expanding demand and limited supply of long-term personal care for People with Dementia (PwD), and assistive technology as an alternative. Telecare allows PwD to live in the comfort of their homes for a longer time. It is challenging to have remote care in smart homes with ambient intelligence, using devices, networks, and activity and plan recognition. Our scope is limited to mostly related work on existing execution environments in smart homes, and activity and plan recognition algorithms which can be applied to PwD living in smart homes. PwD and caregiver needs are addressed in a more holistic healthcare approach, domain challenges include doctor validation and erroneous behaviour, and technical challenges include high maintenance and low accuracy. State-of-the-art devices, networks, activity and plan recognition for physical health are presented; ideas for developing mental training for mental health and social networking for social health are explored. There are two implications of this work: more needs to be done for assistive technology to improve PwD’s mental and social health, and assistive software is not highly accurate and persuasive yet. Our work applies not only to PwD, but also the elderly without dementia and people with intellectual disabilities.

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