scholarly journals Strategies to Design Technology Promoting Social Participation of People With Dementia and Their Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 589-589
Author(s):  
Karin Wolf-Ostermann ◽  
Jane Flanagan
Keyword(s):  
Interpersonal Relationships ◽  
Social Participation ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Community Dwelling ◽  
Successful Implementation ◽  
Policy And Practice ◽  
People With Dementia ◽  
Disclosure Decisions ◽  
Community Technology

Abstract Community-dwelling people with dementia and their caregivers face increasing challenges to active social participation as the condition progresses. Potential difficulties include disclosing the condition, navigating through available support and sustaining interpersonal relationships. Dementia-friendly support services and interventions targeting caregiving dyads can promote social participation. Interventions serve as a communication channel for the dyads to engage, interact and partake in their community. Technology as a facilitator is gaining momentum; increasing evidence suggests that technological solutions contribute to promoting social health for people with dementia and family caregivers. Patient and public involvement and rigorous evaluations of solutions are needed to ensure successful implementation of dementia-friendly technologies. This symposium, presented as a part of the Marie-Curie Innovative-Training-Network action, H2020-MSCA-ITN, grant agreement number 813196, comprises four pertinent presentations. The first presentation outlines the effectiveness of technological interventions to improve social participation of older adults with and without dementia, and barriers and facilitators these interventions present. The second presentation describes disclosure decisions faced by dyads and Patient and public involvement findings on how an existing empowerment intervention supporting disclosure decision-making can transfer to an online environment. The third presentation reports on findings from a study evaluating a tablet-based activation system designed to engage caregiving dyads in social sessions. The final presentation lifts the focus towards how existing online environments can be adapted through dementia-friendly privacy policy agreements, and thereby support social participation of this user group online. Our discussant, Jane Flanagan, synthesizes the presentations and leads a discussion of future directions for policy and practice.

scholarly journals Evaluation of FindMyApps: protocol for a randomized controlled trial of the effectiveness and cost-effectiveness of a tablet-based intervention to improve self-management and social participation of community-dwelling people with mild dementia, compared to usual tablet use

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
David Peter Neal ◽  
Yvonne J. F. Kerkhof ◽  
Teake P. Ettema ◽  
Majon Muller ◽  
Judith Bosmans ◽  
...  
Keyword(s):  
Randomized Controlled Trial ◽  
Cost Effectiveness ◽  
Usual Care ◽  
Social Participation ◽  
Controlled Trial ◽  
Community Dwelling ◽  
Self Management ◽  
Tablet Computer ◽  
Randomized Controlled ◽  
People With Dementia

Abstract Background For the rising number of people living with dementia, cost-effective community-based interventions to support psychosocial care are needed. The FindMyApps intervention has been developed with and for people with dementia and their caregivers, to help them use tablets to facilitate self-management and engagement in meaningful social activities. A feasibility study and exploratory pilot trial evaluating FindMyApps have been carried out. This definitive trial further evaluates the effectiveness of the intervention and, for the first time, the cost-effectiveness. Methods A randomized controlled non-blinded single-center two-arm superiority trial will be conducted. Community-dwelling people with Mild Cognitive Impairment (MCI), or dementia with a Mini Mental-State Examination (MMSE) of > 17 and < 26, or Global Deterioration Scale 3 or 4, with an informal caregiver and access to a wireless internet connection will be included. In total, 150 patient-caregiver dyads will be randomly allocated to receive either usual care (control arm – tablet computer; n = 75 dyads) or usual care and the FindMyApps intervention (experimental arm – tablet computer and FindMyApps; n = 75 dyads). The primary outcomes are: for people with dementia, self-management and social participation; for caregivers, sense of competence. In addition to a main effect analysis, a cost-effectiveness analysis will be performed. In line with MRC guidance for evaluation of complex interventions a process evaluation will also be undertaken. Discussion Results of the trial are expected to be available in 2023 and will be submitted for publication in international peer-reviewed scientific journals, in addition to conference presentations and reporting via the EU Marie Sklodowska-Curie DISTINCT ITN network. By providing evidence for or against the effectiveness and cost-effectiveness of the FindMyApps intervention, the results of the trial will influence national implementation of FindMyApps. We hope that the results of the trial will further stimulate research and development at the intersection of technology and psycho-social care in dementia. We hope to further demonstrate that the randomized controlled trial is a valuable and feasible means of evaluating new digital technologies, to stimulate further high-quality research in this growing field. Trial registration number Netherlands Trial Register: NL8157; registered 15th November 2019.

scholarly journals Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)

2017 ◽  
Vol 22 (6) ◽  
pp. 723-729 ◽  
Author(s):  
Dianne Gove ◽  
Ana Diaz-Ponce ◽  
Jean Georges ◽  
Esme Moniz-Cook ◽  
Gail Mountain ◽  
...  
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
People With Dementia

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.

Research involving people with dementia: a literature review

2017 ◽  
Vol 21 (2) ◽  
pp. 107-114 ◽  
Author(s):  
Emma Rivett
Keyword(s):  
Literature Review ◽  
Research And Development ◽  
Design Methodology ◽  
Public Involvement ◽  
Small Body ◽  
Patient And Public Involvement ◽  
Ethical Considerations ◽  
Ongoing Research ◽  
Content Type ◽  
People With Dementia

Purpose The purpose of this paper is to review existing literature that addresses involving people with dementia in research, and how this can relate to involving people with dementia in research as co-researchers. Design/methodology/approach The approach takes the form of a literature review. Findings Despite a growing drive for patient and public involvement in research, people with dementia are often still excluded from many areas of research, and are rarely given the opportunity to act as co-researchers. Existing principles focussing on how people with dementia can effectively and safely be involved in research as participants (including ethical considerations, enabling participation, support for people with dementia and the involvement of family members and carers) can also be applied to enabling people with dementia to be actively involved with research as co-researchers. The benefits of involving people with dementia in research are also explored. Originality/value This paper adds to the small body of literature that addresses involving people with dementia in research as co-researchers, and advocates for ongoing research and development in this area.

scholarly journals Patient and public involvement and the implementation of research into practice

2016 ◽  
Vol 11 (4) ◽  
pp. 256-267 ◽  
Author(s):  
Steve Gillard ◽  
Rhiannon Foster ◽  
Constantina Papoulias
Keyword(s):  
Service Delivery ◽  
Conceptual Model ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Successful Implementation ◽  
Science Literature ◽  
Retrospective Case ◽  
Content Type ◽  
The Impact

Purpose Patient and public involvement (PPI) is increasingly central to the delivery of health services research. However, it has proved challenging to evaluate the impact of PPI on the implementation of research into clinical practice and health service delivery. The purpose of this paper is to develop and test a conceptual model explaining how PPI in the research process might impact on implementation. Design/methodology/approach A scoping review of knowledge translation and implementation science literature was performed to develop a conceptual model of the impact of PPI in research on implementation. A retrospective case study of a research project was used to illustrate the model. Findings The authors identified five domains in which PPI can impact on the implementation of research into practice. The review demonstrated that successful implementation depends on developing relational models of knowledge production, valuing experiential knowledge, engaging in collaborative practice, making use of knowledge brokers or tools for knowledge facilitation and embedding these factors into the implementation context. In the case study the authors were able to find examples that illustrated each of the five domains of the model. Originality/value The paper builds on existing endeavour to evaluate the impact of PPI in research, demonstrating that it is possible to model, conceptually, the processes whereby PPI in research might impact on practice and service delivery. By illustrating those processes through the exemplar case the authors also demonstrate the potential for the model to be “operationalised”, allowing the impacts, on practice, of PPI in research to be systematically and directly evidenced.

scholarly journals Broadening diversity through creative involvement to identify research priorities

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Stephanie Tierney ◽  
Shoba Dawson ◽  
Anne-Marie Boylan ◽  
Gillian Richards ◽  
Sophie Park ◽  
...  
Keyword(s):  
South Asian ◽  
Information Needs ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Health Condition ◽  
Physical And Mental Health ◽  
People With Dementia ◽  
Research Prioritisation ◽  
Condition C

Abstract Background Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We tried using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods We contacted existing groups and organisations to reach people not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with a mental and physical health condition, c) of South Asian heritage. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss these pieces of art and the processes involved in their generation. Results From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) information needs and anxiety/guilt around accessing care for people with physical and mental health conditions, c) supporting discussion of women’s health issues in South Asian communities. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork helped them to feel that their voice had been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and producing a study. Conclusions We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future PPI, building on what we have learnt from the project described in this paper.

scholarly journals Optimising an intervention to support home-living older adults at risk of malnutrition: a qualitative study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Liz Payne ◽  
Daniela Ghio ◽  
Elisabeth Grey ◽  
Joanna Slodkowska-Barabasz ◽  
Philine Harris ◽  
...  
Keyword(s):  
Older Adults ◽  
At Risk ◽  
Public Involvement ◽  
Target Population ◽  
High Energy ◽  
Patient And Public Involvement ◽  
Community Dwelling ◽  
Good Nutrition ◽  
Intervention Content ◽  
The Uk

Abstract Background In the UK, about 14% of community-dwelling adults aged 65 and over are estimated to be at risk of malnutrition. Screening older adults in primary care and treating those at risk may help to reduce malnutrition risk, reduce the resulting need for healthcare use and improve quality of life. Interventions are needed to raise older adults’ risk awareness, offer relevant and meaningful strategies to address risk and support general practices to deliver treatment and support. Methods Using the Person-based Approach and input from Patient and Public Involvement representatives, we developed the ‘Eat well, feel well, stay well’ intervention. The intervention was optimised using qualitative data from think aloud and semi-structured process evaluation interviews with 23 and 18 older adults respectively. Positive and negative comments were extracted to inform rapid iterative modifications to support engagement with the intervention. Data were then analysed thematically and final adjustments made, to optimise the meaningfulness of the intervention for the target population. Results Participants’ comments were generally positive. This paper focuses predominantly on participants’ negative reactions, to illustrate the changes needed to ensure that intervention materials were optimally relevant and meaningful to older adults. Key factors that undermined engagement included: resistance to the recommended nutritional intake among those with reduced appetite or eating difficulties, particularly frequent eating and high energy options; reluctance to gain weight; and a perception that advice did not align with participants’ specific personal preferences and eating difficulties. We addressed these issues by adjusting the communication of eating goals to be more closely aligned with older adults’ beliefs about good nutrition, and acceptable and feasible eating patterns. We also adjusted the suggested tips and strategies to fit better with older adults’ everyday activities, values and beliefs. Conclusions Using iterative qualitative methods facilitated the identification of key behavioural and contextual elements that supported engagement, and issues that undermined older adults’ engagement with intervention content. This informed crucial revisions to the intervention content that enabled us to maximise the meaningfulness, relevance and feasibility of the key messages and suggested strategies to address malnutrition risk, and therefore optimise engagement with the intervention and the behavioural advice it provided.

scholarly journals Broadening Diversity Through Creative Engagement in Research Prioritisation

2020 ◽  
Author(s):  
Stephanie Tierney ◽  
Shoba Dawson ◽  
Anne-Marie Boylan ◽  
Gillian Richards ◽  
Sophie Park ◽  
...  
Keyword(s):  
Mental Health ◽  
Information Needs ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Health Conditions ◽  
Physical And Mental Health ◽  
Mental Health Conditions ◽  
People With Dementia ◽  
Research Prioritisation

Abstract Background: Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We wanted to try out using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods: We contacted existing groups and organisations to reach people who are not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with mental health conditions, and c) from Black, Asian and Minority Ethnic backgrounds. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss the final pieces of art that were created, and the processes involved in their generation.Results: From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) supporting discussion of women’s health issues in South Asian communities, c) information needs, anxiety/guilt around accessing care and costs associated with this for people with a mixture of physical and mental health conditions. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork has helped them to feel their voice has been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and then producing a study. Conclusions: We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future public involvement and engagement, building on what we have learnt from the project described in this paper.

scholarly journals Individuals’ Decision to Disclose a Diagnosis of Dementia and the Development of an Online Empowerment Intervention

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 589-590
Author(s):  
Mauricio Molinari Ulate ◽  
Jem Bhatt ◽  
Jennifer Lynch ◽  
Katrina Scior ◽  
Georgina Charlesworth ◽  
...  
Keyword(s):  
Public Involvement ◽  
Adverse Reactions ◽  
Psychosocial Health ◽  
Patient And Public Involvement ◽  
Dementia Diagnosis ◽  
Factors Influencing ◽  
People With Dementia ◽  
Complex Process ◽  
Diagnosis Of Dementia

Abstract Learning to live with a diagnosis of dementia is a complex process. Many people affected by dementia choose not to disclose the diagnosis to others and avoid social activities due to fear of others’ adverse reactions. This in turn can limit their social participation and negatively affect their psychosocial health. A systematic review explored factors influencing the decision to disclose or conceal a dementia diagnosis to one’s social network, including individuals’ attitudes and experiences regarding this decision. The sixteen studies included reveal the complexity of this decision. Findings highlight the role of stigma and individuals’ wishes to remain ‘normal’, but also the need of explaining what has changed. Results were further discussed with people with dementia and informal caregivers as part of patient and public involvement. End users expressed their attitudes, needs, and wishes towards the design of an online empowerment intervention supporting disclosure decision-making in people affected by dementia.

495 CONVERSATIONS ON LIVING & DYING: AN INTERVENTION TO INCREASE COGNITIVELY-ABLE, COMMUNITY-BASED FRAIL ELDERS’ ENGAGEMENT WITH ACP

2021 ◽  
Vol 50 (Supplement_2) ◽  
pp. ii5-ii7
Author(s):  
S Combes ◽  
K Gillett ◽  
C Norton ◽  
C J Nicholson
Keyword(s):  
End Of Life ◽  
Public Involvement ◽  
Behavioural Change ◽  
Patient And Public Involvement ◽  
Community Dwelling ◽  
Integrative Review ◽  
Structured Interviews ◽  
Support Person ◽  
Frail Elders ◽  
Health And Social Care

Abstract Introduction Advance care planning (ACP) can support person-centred end-of-life care by helping individuals articulate their end-of-life preferences. Frail elders’ vulnerability to deterioration makes ACP engagement particularly relevant; however, their engagement with ACP is uncommon. This study aimed to develop an intervention to increase ACP engagement with cognitively-able, community-dwelling frail elders. Methods Multiple methods were used to establish ACP barriers and facilitators: a systematic integrative review, modified e-Delphi survey (multidisciplinary health and social care professionals (H&SCPs) n = 73), and semi-structured interviews (frail elders n = 10, family members n = 8). A conceptual model, developed from the integrative review, underpinned data collection for the e-Delphi and interviews. Triangulation, including patient and public involvement, was then used to identify H&SCPs behaviours that needed to change and decide intervention content and implementation. The intervention was developed using behavioural change theory. Prototype refinement consisted of pre and post questionnaires, use of the intervention in practice, and focus groups (H&SCPs n = 26). Results The prototype intervention consists of a 3.5-hour training and education session for H&SCPs, supported by a toolkit. The intervention focuses on the relevance and experience of ACP for frail elders and ACP strategies H&SCP can use to encourage frail elders’ ACP engagement. Strategies include recognising the importance of decision-making in relationships and living well now, starting early, using an honest but gentle approach, and helping frail elders prepare for ACP conversations. Participants report that the intervention helps them think differently about ACP and encourages them to engage frail elders with ACP. Conclusions To our knowledge this is the first intervention underpinned by behaviour theory that focuses on supporting H&SCPs to engage community-dwelling, cognitively-able frail elders with ACP. Refinements, such as additions to the toolkit, have been suggested. However, H&SCPs appear to find the intervention acceptable, feasible, engaging, and useful in their practice.

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