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Proactive approaches to identifying dementia and dementia risk; a qualitative study of public attitudes and preferences.

ABSTRACT: OBJECTIVES:The aim of this study was to critically explore the views of the public about the acceptability and feasibility of proactive approaches to earlier dementia diagnosis and also identification of people at high risk of dementia. DESIGN:Qualitative study using task group methodology and thematic data analysis. SETTING:Task groups were held either at the university (n=5) or at a carers' centre (n=1). PARTICIPANTS:A convenience sample of 31 of 54 participants identified by local non-statutory agencies took part in a task group. All were aged between 40 years and 80 years, 21 were women and 10men participated. RESULTS:Despite the use of task group methodology, participants expressed limited understandings of dementia and confusion between proactive approaches. Nevertheless, they highlighted a range of potential benefits and limitations of proactive approaches and the ethical issues raised. There was a preference to embed risk assessment within routine health checks, which focused on achieving a healthier lifestyle, rather than specifically on dementia. Participants emphasised the need to ensure informed consent prior to use of proactive approaches and to provide appropriate support. They also suggested alternative approaches that could potentially facilitate the early detection of dementia or reduce risk at a population level. CONCLUSIONS:As international policy on dementia shifts towards a prevention agenda there is growing interest in identifying those at risk of developing dementia. This study provides useful insights into the acceptability of the use of such proactive approaches among the public. The introduction of proactive approaches to dementia identification raises complex practical and ethical issues, particularly in the context of low public understanding of dementia. The importance of better quality information about dementia (and the likelihood of developing dementia) and provision of psychological support for those undergoing risk assessment were highlighted.

SUBMITTER: Robinson L

PROVIDER: S-EPMC5829774 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Proactive approaches to identifying dementia and dementia risk; a qualitative study of public attitudes and preferences.

Robinson Louise L Dickinson Claire C Magklara Eleni E Newton Lisa L Prato Laura L Bamford Claire C

BMJ open 20180203 2

<h4>Objectives</h4>The aim of this study was to critically explore the views of the public about the acceptability and feasibility of proactive approaches to earlier dementia diagnosis and also identification of people at high risk of dementia.<h4>Design</h4>Qualitative study using task group methodology and thematic data analysis.<h4>Setting</h4>Task groups were held either at the university (n=5) or at a carers' centre (n=1).<h4>Participants</h4>A convenience sample of 31 of 54 participants id ...[more]

PMID: 29431130

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Project description:BackgroundIndividuals with a parental family history of dementia have an increased risk of developing dementia because they share their genes as well as their psychosocial behaviour. Due to this increased risk and their experience with dementia, they may be particularly eager to receive information regarding dementia risk reduction (DRR). This study evaluated the knowledge, beliefs and attitudes towards dementia and DRR among descendants of people with dementia.MethodUsing a semi-structured topic guide, three focus group discussions were conducted consisting of 12 female (80%) and 3 male (20%) descendants of people with dementia with a mean (± SD) age of 48.8 (± 12) years. Focus group discussions were audio recorded and transcribed. Each transcript was analysed thoroughly, and where appropriate, a code was generated and assigned by two researchers independently. Then, similar codes were grouped together and categorized into themes.ResultsThe items in the topic guide could only be addressed after participants had been given the opportunity to share their experiences of having a parent with dementia. Participants were unaware or uncertain about the possibility of reducing the risk of developing dementia and therefore hesitant to assess their dementia risk without treatment options in sight. Moreover, participants indicated that their general practitioner only gave some information on heritability, not on DRR. Although participants identified a large number of modifiable risk factors as a group during the group discussions, they were eager to receive more information on dementia and DRR. In the end, participants adopted a more positive attitude towards a DRR programme and provided suggestions for the development of future DRR programmes.ConclusionsAlthough the research aim was to evaluate the knowledge, beliefs and attitudes towards dementia and DRR, sharing experiences of having a parent with dementia seemed a prerequisite for considering participants' own risk of developing dementia and participating in a DRR programme. Knowledge of dementia and DRR was limited. Due to unawareness of the possibility of reducing dementia risk, participants were hesitant about assessing their dementia risk. Group discussions positively changed the perception of dementia risk assessment and participants' willingness to participate in a DRR programme.

Project description:IntroductionConsidering the dangers of adolescent tobacco use, the successful design of behavioral programs is crucial for tobacco prevention. According to preliminary research, social game interventions can improve adolescent tobacco outcomes. The current qualitative study aims to (1) uncover the gaming elements that adolescents deem important for a positive learning experience, and (2) confirm these gaming elements with adolescents who are presented with a tobacco prevention game concept that applies these elements.MethodsFindings from this study are drawn from two phases. Phase 1 involved in-person focus group discussions (n = 15) and Phase 2 included three online focus groups and a paired interview with another set of adolescents (n = 15). The study was conducted under a project that aimed to design and test a social game-based tobacco prevention program for adolescents (Storm-Heroes). With open coding and thematic analysis, two research team members identified repeated topics and relevant quotes to organize them into themes. The themes evolved as new content was identified during the process. This process was repeated until thematic saturation was reached.ResultsThematic analysis across Phase 1 and Phase 2 revealed four major themes: 1) Balance during gaming challenges, 2) Healthy social interaction, 3) Performance and creative freedom, and 4) Fictional world and game mechanics for tobacco prevention.ConclusionThis study identified specific intervention features that best fit the needs of adolescents in the context of a social game for tobacco prevention. For future research, we will use a participatory approach to allow adolescents to take part in the design process, improve Storm-Heroes, and develop health promotional messages that can be incorporated into the program. Ultimately, a board game for tobacco prevention is expected to bring adolescents together to create lasting memories that nudge them away from tobacco use and the harm it can cause.

Project description:ObjectiveStroke-survivors are at increased risk of future dementia. Assessment to identify those at high risk of developing a disease using predictive scores has been utilised in different areas of medicine. A number of risk assessment scores for dementia have been developed but none has been recommended for use clinically. The aim of this qualitative study was to assess the acceptability and feasibility of using a risk assessment tool to predict post-stroke dementia.DesignQualitative semi-structured interviews were conducted and analysed thematically. The patients and carers were offered interviews at around 6 (baseline) and 12 (follow-up) months post-stroke; clinicians were interviewed once.SettingThe study was conducted in the North-East of England with stroke patients, family carers and healthcare professionals in primary and secondary care.ParticipantsThirty-nine interviews were conducted (17 clinicians and 15 stroke patients and their carers at baseline. Twelve stroke patients and their carers were interviewed at follow-up, some interviews were conducted in pairs).ResultsBarriers and facilitators to risk assessment were discussed. For the patients and carers the focus for facilitators were based on the outcomes of risk assessment for example assistance with preparation, diagnosis and for reassurance. For clinicians, facilitators were focused on the process that is, familiarity in primary care, resource availability in secondary care and collaborative care. For barriers, both groups focused on the outcome including for example, the anxiety generated from a potential diagnosis of dementia. For the patients/carers a further barrier included concerns about how it may affect their recovery. For clinicians there were concerns about limited interventions and how it would be different from standard care.ConclusionsRisk assessment for dementia post-stroke presents challenges given the ramifications of a potential diagnosis of dementia. Attention needs to be given to how information is communicated and strategies developed to support the patients and carers if risk assessment is used.

Project description:BackgroundAlong with the ageing of the general population, Europe's migrant populations are also ageing, thus posing new challenges for dementia care services, particularly if the services are to be adjusted to persons with different linguistic and cultural backgrounds. From the perspective of health professionals, this study aims to explore challenges involved in identifying, assessing and diagnosing people with cognitive impairment/dementia who have different linguistic and cultural backgrounds.MethodsResearch on health professionals experiences regarding the management of dementia among immigrants is scarce and qualitative methods was used to address the objective of the study. Using qualitative in-depth interviews and focus-group discussions, we sought to gather participants' experiences regarding the diagnostic process for immigrants with dementia. The material was analysed and interpreted based on Kvale and Brinkmann's descriptions of three different contexts of interpretation: self-understanding, critical common-sense understanding, and theoretical understanding.ResultsHealth professionals described how families could attribute symptoms of dementia to processes of normal ageing, while others saw the symptoms as something shameful; both instances delayed or hindered help-seeking. Many clinicians had limited experience with older immigrants suffering from dementia, and general practitioners (GPs) in particular experienced difficulties assessing dementia due to language barriers and difficulties related to the involvement of the family or an interpreter. The findings illustrate challenges in assessment, such as unfamiliarity with test situations among those being assessed and lack of knowledge regarding appropriate diagnostic tools among health professionals. Lack of continuity and poor information exchange in the chain of care seem to reinforce many of these challenges.ConclusionsDetection, treatment and care may be improved if primary care professionals strengthen their cross-cultural competences. Training in communication skills and in the use of cross-cultural assessment tools may help build competence and confidence when assessing and caring for people with different cultural and linguistic backgrounds. Closer collaboration among families, nurses in home-based services, dementia teams, and GPs may facilitate close monitoring of a patient over time. Such collaboration requires sufficient information exchange during transitions in the chain of care, continuity among health professionals, and a shared understanding of the goals for treatment and care.

Project description:AimsOur aim is to identify important attributes of major diseases that shape how they are perceived by the public.Methods and resultsFour focus groups among members of the public were recruited, in March and October 2016, and used semistructured discussion to explore important attributes of cancer, heart disease, stroke, dementia, mental illness, and infectious disease. Common themes were identified by using inductive thematic analysis.Five themes were identified: fear, impact on family and friends, hope, detection, and prevention. Fear of cancer includes not only fear of death but also of aggressive treatments. Loss of dignity is feared in dementia, while infectious disease raises fear of uncontrollable "plague"; in contrast, people with mental illness may themselves be seen as a potential threat. The impact of cancer and its treatment on family and friends was described as intense and all-consuming, even for those not involved directly in caring; with dementia and stroke, the family impact is taking on care, including funding, over the long term with little expectation of improvement. Hope is a major theme in cancer and stroke recovery, linked with the need to take action, often expressed in aggressive language of "fighting," but seen as futile in dementia. Detection difficulties for "silent" cancers mean that real treatment opportunities are missed; cardiovascular and infection risk, however, are seen as easy to identify and act on, whereas mental illness and dementia are seen as poorly diagnosed and with limited treatment options. Prevention awareness is high for cardiovascular disease and infection, lower for cancer, and limited for dementia and mental health.ConclusionAlthough themes overlap across diseases, the specific concerns are different and each condition has a unique profile. Quantifying the relative importance of these themes could allow their incorporation in decision-making, not only when they occur as a named disease but also in any relevant condition.

Project description:BackgroundA growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined.MethodsParticipants (N = 40) were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards.ResultsParticipant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants' decision to donate, although did affect their understanding of how loyalty card data could be used.ConclusionsBased on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made.

Dataset Information

Proactive approaches to identifying dementia and dementia risk; a qualitative study of public attitudes and preferences.

Publications

Proactive approaches to identifying dementia and dementia risk; a qualitative study of public attitudes and preferences.

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