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

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.

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Broadening diversity through creative involvement to identify research priorities

Research Involvement and Engagement ◽

10.1186/s40900-020-00244-z ◽

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.

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Broadening Diversity Through Creative Engagement in Research Prioritisation

10.21203/rs.3.rs-92279/v1 ◽

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.

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

Innovation in Aging ◽

10.1093/geroni/igab046.2249 ◽

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.

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Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia

Dementia ◽

10.1177/1471301219876402 ◽

2019 ◽

Vol 19 (1) ◽

pp. 10-17 ◽

Cited By ~ 1

Author(s):

Chris Roberts ◽

Helen Rochford-Brennan ◽

Jayne Goodrick ◽

Dianne Gove ◽

Ana Diaz-Ponce ◽

...

Keyword(s):

Working Group ◽

Public Involvement ◽

Patient And Public Involvement ◽

European Working Group ◽

People With Dementia ◽

European Working

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Adding to the knowledge on Patient and Public Involvement: Reflections from an experience of co‐research with carers of people with dementia

Health Expectations ◽

10.1111/hex.13049 ◽

2020 ◽

Vol 23 (3) ◽

pp. 691-706 ◽

Cited By ~ 1

Author(s):

Claudio Di Lorito ◽

Maureen Godfrey ◽

Marianne Dunlop ◽

Alessandro Bosco ◽

Kristian Pollock ◽

...

Keyword(s):

Public Involvement ◽

Patient And Public Involvement ◽

People With Dementia

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Impact of involving people with dementia and their care partners in research: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2020-039321 ◽

2020 ◽

Vol 10 (10) ◽

pp. e039321

Author(s):

Jahanara Miah ◽

Suzanne Parsons ◽

Karina Lovell ◽

Bella Starling ◽

Iracema Leroi ◽

...

Keyword(s):

Public Involvement ◽

Qualitative Interviews ◽

Research Programme ◽

Patient And Public Involvement ◽

Substantial Impact ◽

People With Dementia ◽

Care Partners ◽

Dementia Research ◽

Research User ◽

The Impact

ObjectivesWe aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme.DesignWe used monitoring forms to record the impact of the research programme’s PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI.SettingWe evaluated Research User Groups (RUGs—older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites.ParticipantsWe purposively sampled RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent; (b) researchers who involved RUGs in their work.ResultsImpact on the research: changes to the study conduct were made as a result of the feedback from RUGs. These included prioritisation of clinical recommendations, the wording of study information and recruitment materials, the content and layout of the user interface for a computerised memory test, interpretation of intervention results and advice on dissemination avenues. Impact on RUG members: they reported that involvement had given them a sense of purpose and satisfaction. Their perception of health research changed from being an exclusive activity to one, which lay people, could have meaningful involvement. Impact on researchers: PPI was a new way of working and interacting with PPI members had given them insight into the impact of their work on people living with dementia.ConclusionsPPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.

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SENSE-Cog Asia: A Feasibility Study of a Hearing Intervention to Improve Outcomes in People With Dementia

Frontiers in Neurology ◽

10.3389/fneur.2021.654143 ◽

2021 ◽

Vol 12 ◽

Author(s):

Saima Sheikh ◽

Sehrish Tofique ◽

Nosheen Zehra ◽

Rabia Amjad ◽

Maham Rasheed ◽

...

Keyword(s):

Capacity Building ◽

Feasibility Study ◽

Hearing Aids ◽

Cultural Adaptation ◽

Public Involvement ◽

Patient And Public Involvement ◽

Structured Interviews ◽

Support Intervention ◽

People With Dementia ◽

Home Based

Background: There are few evidence-based non-pharmacological interventions adapted for people with dementia (PwD) in lower- and middle-income countries (LMIC). Thus, there is value in culturally adapting existing interventions from other settings. One such intervention for PwD involves hearing rehabilitation, which may improve dementia-related outcomes.Objective: To culturally adapt and evaluate the feasibility and acceptability of a multi-faceted hearing support intervention to enhance quality of life in PwD for a LMIC setting, Pakistan.Design: This was a study in three phases: (1) training and capacity building to deliver the study, including Patient and Public Involvement (PPI); (2) cultural adaptation of the intervention; and (3) delivery of a single-group feasibility study with a pre-test post-test design.Setting: Home-based intervention, in two cities of Pakistan.Participants: Adults aged ≥ 60 with mild-moderate dementia and uncorrected or partially corrected hearing impairment, and their study partners (n = 14).Intervention: An adapted hearing support intervention (HSI) comprising a full assessment of hearing function, fitting of hearing aids, and home-based support from a “hearing support practitioner.”Outcomes: Ratings of the feasibility of the study procedures, and acceptability/tolerability of the adapted intervention were ascertained through questionnaires, participant diaries, therapist logbooks and semi-structured interviews. A signal of effectiveness of the intervention was also explored using a battery of dementia-related outcome measures.Results: Following cultural adaptation and capacity building for study conduct and delivery, we successfully implemented all intervention components in most participants, which were well-received and enacted by participant dyads. Acceptability (i.e., understanding, motivation, sense of achievement) and tolerability (i.e., effort, fatigue) ratings and safety of the intervention were within a priori target ranges. Recruitment and retention targets required improvement, due to the COVID-19 pandemic outbreak, as well as the lack of a clear clinical diagnostic pathway for dementia in both sites. Areas for future modification were clearly identified, including: the assessment/delivery logistics circuit; procedures for arranging visits; communication among referring clinicians and the study team.Conclusion: This is the first study in a LMIC of sensory enhancement to improve dementia outcomes. Positive feasibility, acceptability and tolerability findings suggest that a full-scale effectiveness trial, with certain modifications is warranted.

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The Experience of Apathy in Dementia: A Qualitative Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18063325 ◽

2021 ◽

Vol 18 (6) ◽

pp. 3325

Author(s):

Waqaar Baber ◽

Chern Yi Marybeth Chang ◽

Jennifer Yates ◽

Tom Dening

Keyword(s):

Interpretative Phenomenological Analysis ◽

Daily Living ◽

Public Involvement ◽

Subjective Experience ◽

Patient And Public Involvement ◽

Anxiety And Depression ◽

Family Carers ◽

Effective Interventions ◽

People With Dementia ◽

Active Phenomenon

We aimed to explore and gain an understanding into how people with dementia experience apathy, and consequently suggest effective interventions to help them and their carers. Twelve participants (6 dyads of 6 people with dementia and their family carers) were recruited from “memory cafes” (meeting groups for people with dementia and their families), social groups, seminars, and patient and public involvement (PPI) meetings. People with dementia and their carers were interviewed separately and simultaneously. Quantitative data were collected using validated scales for apathy, cognition, anxiety, and depression. The interviews were semi-structured, focusing on the subjective interpretation of apathy and impacts on behaviour, habits, hobbies, relationships, mood, and activities of daily living. Interviews were recorded and transcribed. Transcripts were analysed using interpretative phenomenological analysis (IPA), which generated codes and patterns that were collated into themes. Four major themes were identified, three of which highlighted the challenging aspects of apathy. One described the positive aspects of the individuals’ efforts to overcome apathy and remain connected with the world and people around them. This study is the first to illustrate the subjective experience of apathy in dementia, portraying it as a more complex and active phenomenon than previously assumed. Apathy and its effects warrant more attention from clinicians, researchers, and others involved in dementia care.

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

Innovation in Aging ◽

10.1093/geroni/igab046.2247 ◽

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.

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