Dataset Information

A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study.

ABSTRACT: Plain English summary:Involving older people with dementia in research is increasingly recognised as important to ensure that research is relevant and beneficial for older people with dementia. But researchers need to know how best to involve older people with dementia and to be able to show the benefits of involving older people with dementia in dementia research.This paper describes a research plan to explore the involvement of older people with dementia and age-related hearing and/or vision impairment in a European research project investigating the combined impact of dementia with hearing and/or vision impairment. We set up four Research User Groups (RUGs) of older people with dementia with age-related hearing and/or vision impairment and their carers based in the UK, France, Cyprus and Greece to advise our researchers. We provided training to group members to support their input to the research.We will use a questionnaire and interview people in our RUGs to understand what they thought of the training and their experiences of being part of the RUG. We will also interview researchers to understand if they thought the advice from the groups was useful.This study will help us to understand how to effectively involve older people with dementia and age-related hearing and/or vision impairment in research and what the benefits of involving older people with dementia in research are. Abstract:Background Research to prevent and treat dementia is an international priority. Involvement of older people with dementia in the research is important to ensure the relevance and utility of the research outcomes in clinical practice to them. Efforts to involve such people in research are growing due to increased recognition of the usefulness of incorporating the views of older people with dementia into the research process. Research User Groups (RUGs) of older people with dementia and carers for people with dementia were set up in UK (Manchester), France (Nice), Cyprus (Nicosia) and Greece (Athens) to advise on the research. We report a protocol for a study which aims to evaluate i) the perceptions of RUG members of the usefulness of Research Awareness Training that was provided to support their involvement in the research and ii) perceived impacts of the involvement of older people with dementia and age-related hearing and/or vision impairment on research from the point of view of RUG members and researchers. Methods Both qualitative and quantitative methods will be used to evaluate the acceptability, appropriateness and satisfaction with Research Awareness Training and the perceived impact of involvement of RUGs on research. Focus groups interviews with RUG members and one to one interviews with both RUG members (n =?24) and researchers (n =?6) will be conducted to understand the perceived impacts of patient and public involvement on research from the point of view of older people with dementia, carers and researchers. Any comparative differences in cultural, attitudinal and environmental differences between RUGs in outcomes of training and impact across the four European sites will be reported. Discussion This study is unique in its exploration of the impact of the involvement of older people with dementia and age-related hearing and/or vision impairment in a large multi-site European dementia research study. This work will be crucial in informing understanding of how to effectively involve older people with dementia and age-related hearing and/or vision impairment and carers in dementia research to ensure research addresses the needs and priorities of older people with dementia and age-related hearing and/or vision impairment.

SUBMITTER: Miah J

PROVIDER: S-EPMC6251148 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study.

Miah Jahanara J Dawes Piers P Leroi Iracema I Parsons Suzanne S Starling Bella B

Research involvement and engagement 20181122

<h4>Plain english summary</h4>Involving older people with dementia in research is increasingly recognised as important to ensure that research is relevant and beneficial for older people with dementia. But researchers need to know how best to involve older people with dementia and to be able to show the benefits of involving older people with dementia in dementia research.This paper describes a research plan to explore the involvement of older people with dementia and age-related hearing and/or ...[more]

PMID: 30498579

Similar Datasets

Project description:Hearing and vision impairments are among the most common and disabling comorbidities in people living with dementia. Intervening to improve sensory function could be a means by which the lives of people living with dementia may be improved. However, very few studies have tried to ameliorate outcomes in dementia by improving sensory function. This paper describes the multi-step development of a new intervention designed to support hearing and vision function in people living with dementia in their own homes. At the end of the development programme, it is anticipated that a 'sensory support' package will be ready for testing in a full scale randomised controlled trial.This programme is based on the process of 'intervention mapping' and comprises four integrated steps, designed to address the following: (1) scoping the gaps in understanding, awareness and service provision for the hearing and/or vision impairment care needs of people with dementia using a systematic literature review and Expert Reference Group; (2) investigating the support care needs through a literature search, stakeholder surveys, focus groups, semi-structured interviews and an Expert Reference Group, leading to a prototype sensory support package; (3) refining the prototype by additional input from stakeholders using focus groups and semi-structured interviews; and (4) field testing the draft intervention using an open-labelled, non-randomised feasibility study, integrating feedback from people with dementia and their significant others to develop the final intervention ready for full scale definitive trialling. Input from the 'patient and public voice' is a cornerstone of the work and will interlink with each step of the development process. The programme will take place in study centres in Manchester, Nicosia and Bordeaux.Quantitative and qualitative data analyses will be employed, dependent upon the sub-studies in question. Data from the steps will be integrated with consideration given to weighting of evidence for each step of the programme. This programme represents the logical development of a complex intervention to fulfil an unmet need. It is based on a theoretical framework and will lead to a subsequent full scale efficacy trial. The challenges in integrating the data and addressing the contextual issues across study sites will be scrutinised.

Project description:ImportanceImpairments in vision or hearing are common and have been independently linked to higher risk of dementia in older adults. There is a limited understanding of the prevalence of concurrent functional vision and hearing impairment (dual sensory impairment) and its contribution to dementia risk.ObjectiveTo examine the age-specific prevalence of functional dual sensory impairment among older adults, and to investigate the cross-sectional and 7-year longitudinal associations between functional dual sensory impairment and dementia.Design, setting, and participantsThis cohort study of 7562 older adults used data from the US National Health and Aging Trends Study (NHATS), a nationally representative cohort study of community-dwelling, Medicare beneficiaries aged 65 years and older in the US. Participants in the study with complete data on hearing, vision, and dementia were included in analysis. Data were collected between 2011 and 2018, and between March 2018 and May 2020.ExposuresSelf-reported functional sensory impairments (ie, no sensory impairment, functional vision impairment only, functional hearing impairment only, and functional dual sensory impairment).Main outcomes and measuresAge-specific prevalence of functional sensory impairments was calculated. Generalized linear regression with a complementary log-log link and a discrete time proportional hazards model with a complementary log-log link were used to assess the cross-sectional and 7-year longitudinal hazard of dementia.ResultsOf 7562 participants, 3073 (40.7%) were ages 80 years or older and 4411 (58.3%) were women. Overall, 5.4% (95% CI, 4.7%-6.1%) of participants reported functional vision impairment only, 18.9% (95% CI, 18.9%-17.8%) reported functional hearing impairment only, and 3.1% (95% CI, 2.7%-3.5%) reported functional dual sensory impairment (prevalence estimates are weighted). Participants reporting sensory impairments were older (no impairment: age ≥90 years, 2.12% [95% CI, 1.79%-2.46%] vs functional dual sensory impairment: age ≥90 years, 20.06% [95% CI, 16.02%-24.10%]), had lower education (no impairment: <high school, 19.05% [95% CI, 17.27%-20.83%] vs functional dual sensory impairment: <high school, 46.15% [95% CI, 38.38%-53.92%]), and greater disease burden (eg, heart disease: no impairment, 15.30% [95% CI, 14.04%-16.55%] vs functional dual sensory impairment, 25.49% [95% CI, 19.96%-31.02%]). Compared with no impairment, functional vision impairment (adjusted hazard ratio [aHR], 1.89; 95% CI, 1.57-2.28), functional hearing impairment (aHR, 1.14; 95% CI, 1.00-1.31), and functional dual sensory impairment (aHR, 2.00; 95% CI, 1.57-2.53) were associated with a higher cross-sectional hazard of dementia. Over 7 years, functional vision impairment (aHR, 1.40; 95% CI, 1.12-1.74), functional hearing impairment (aHR, 1.09; 95% CI, 0.95-1.24), and functional dual sensory impairment (aHR, 1.50; 95% CI, 1.12-2.02) were associated with a higher hazard of incident dementia compared with no impairment.Conclusions and relevanceIn this cohort study of US Medicare beneficiaries, dual sensory impairment was prevalent in older adults and associated with increased risk of dementia. These findings suggest that sensory rehabilitative interventions for multiple impairments may be an additional resource in efforts to reduce dementia risk.

Project description:BackgroundInternationally, there is a drive to involve patients and the public in health research, due to recognition that patient and public involvement (PPI) may increase the impact and relevance of health research. This scoping review describes the extent and nature of PPI in dementia research in the European Union (EU) and summarises: (i) how PPI is carried out; and (ii) the impact of PPI on people living with dementia and the public, researchers, and the research process.MethodsRelevant studies were identified by searches in electronic reference databases and then filtered by two reviewers independently. Eligibility criteria for included studies were: (i) people living with dementia and/or care partners; (ii) PPI activity in dementia research conducted in the European Union (EU); and (iii) published between 2000 and 2018. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2 SF) was used to collate the data. There was no language restriction other than the abstract needed to be available in English.ResultsWe found 19 studies from the UK and one from the Netherlands meeting inclusion criteria. No studies from other EU countries met inclusion criteria. Studies reported various methods of PPI including workshops, drop-in sessions, meetings, consensus conference, reader consultation and participatory approach. The reported aims of PPI included identifying and prioritising research questions (n = 4), research design (n = 5), undertaking and managing research (n = 8), and data analysis and interpretation (n = 3). All PPI related to design and implementation of non-pharmacological studies. One study described two pharmacological studies as case studies incorporating PPI. Seventeen studies reported anecdotal impacts of PPI.ConclusionsFurther development of PPI in dementia research in the EU and in pharmacological dementia research is required. Given the wide range of objectives of PPI in dementia research, PPI methods should be flexible and appropriate for the research context. Researchers should also formally evaluate and report the impacts of PPI for researchers, patients and the general public using good quality research designs to foster development of the field and enable the benefits and challenges of PPI to be better understood.Trial registrationPROSPERO 2017: CRD42017053260 .

Project description:BackgroundHearing and vision (sensory) impairments are highly prevalent in people with dementia (PwD) and exacerbate the impact of living with dementia. Assessment of sensory or cognitive function may be difficult if people have concurrent dual or triple impairments. Most standard cognitive assessment tests are heavily dependent on having intact hearing and vision, and impairments in these domains may render the assessments unreliable or even invalid. Likewise, dementia may impede on the accurate reporting of symptoms that is required for most hearing and vision assessments. Thus, there is an urgent need for hearing, vision and cognitive assessment strategies to be adapted to ensure that appropriate management and support can be provided.ObjectiveTo explore the perspectives of PwD and the care partners regarding the need for accurate hearing, vision and cognitive assessments.MethodsWe conducted focus groups and semi-structured interviews regarding the clinical assessment for cognitive, hearing and visual impairment. Participants (n?=?18) were older adults with mild to moderate dementia and a sensory impairment as well as their care partners (e.g. a family member) (n?=?15) at three European sites. The qualitative material was analysed according to Mayring's summative content analysis approach.ResultsParticipants reported that hearing, vision and cognitive assessments were not appropriate to the complex needs of PwD and sensory comorbidity and that challenges in communication with professionals and conveying unmet needs and concerns by PwD were common in all three types of clinical assessments. They felt that information about and guidance regarding support for the condition was not adequate in the assessments and that information sharing among the professionals regarding the concurrent problems was limited. Professionals were reported as being concerned only with problems related to their own discipline and had limited regard for problems in other domains which might impact on their own assessments.ConclusionsThe optimal assessment and support for PwD with multiple impairments, more comprehensive, yet easy to understand, information regarding these linked to conditions and corrective device use is needed. Communication among health care professionals relevant to hearing, vision and cognition needs to be improved.

Project description:Introduction: As the prevalence of age-related sensory impairment increases, more evidence emerges on the association between uni-sensory and cognitive impairment (CI) in older adults. However, the link between CI and concurrent hearing and vision impairment (referred to as dual sensory impairment/DSI) is not well-understood, and this combined effect may be additive or multiplicative. Moreover, the existing evidence on CI in older adults with DSI is scattered and limited. Through this systematic scoping review, we aim to map existing evidence on CI in older adults with DSI, and to summarize what is known about the prevalence, incidence and risk factors of CI, and tools used to screen or assess CI in older adults with DSI. Methods and Analysis: We will use the Joanna Briggs Institute framework to perform the review. Eleven databases [MEDLINE, CINAHL/EBSCO, EMBASE, Mednar, WorldWideScience, PsycEXTRA, OAIster, OpenGrey (SIGLE), Global Health, PsycINFO, and Web of Science] and clinical trial registries (ISRCTN Registry, WHO ICTRP, and ClinicalTrials.gov) will be searched. Study selection will be completed using Covidence, and data will be extracted using an a priori data extraction tool. To be included, studies had to be peer-reviewed, had older adults with DSI as the focal population, and are related to CI. Data will be presented using a narrative summary with emphasis on implications for future research and practice. Discussion: Reliable cognitive screening is of the utmost importance for prevention and treatment of CI within DSI population. The study findings will have significant implications for health services delivery and policy research. The summarized findings on the prevalence, incidence, associated risk factors, and CI screening and assessment tools will inform geriatric care. The review will also document knowledge gaps on CI in the DSI population and identify areas of interest for future studies. Ethics and Dissemination: The scoping study, being a review of existing documents, does not require ethics approval. The findings will be disseminated with relevant stakeholders using knowledge translation activities such as scientific presentations and publications. We intend to use the findings to conduct a Delphi study to evaluate which CI tools are suitable for older population with DSI.

Dataset Information

A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study.

Publications

A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets