Brief summary 

Background

There are ~ 800,000 people in the United Kingdom (UK) with dementia; by 2015 there will be 2 million.  Dementia has a huge impact on families and considerable societal and economic consequences. In England, policy has encouraged earlier, more timely, diagnosis, with the introduction of dementia case finding in acute hospitals (admissions for >75 years) and in primary care (screening high risk groups) via the optional Dementia Directly Enhanced Service (DES).  We have little evidence on patients’ and professionals’ experiences of participating in dementia case finding programmes, the harms or benefits and the impact on patient outcomes. 

Aims and objectives

To critically explore the views of patients and the public about the acceptability and feasibility of case finding initiatives, and tools to assess dementia risk, in primary care.

Our specific objectives are to:

1. i) Explore patient and public attitudes* to case finding for dementia, including new policy initiatives (e.g. Dementia DES), and views on the harms and benefits of such schemes
2. ii) Examine their views on the use of risk tools, and incorporating genetic markers, to identify patients at higher risk of dementia.

*Our colleagues in UCL are leading parallel collaborative work with us on seeking primary care health professionals’ perspectives under their FP9 funding.

Research Questions 

Between both projects*; the following research questions will be addressed:

• What are the experiences of those who have participated in primary care led dementia case-finding programmes including potential benefits and harms?
• What are the advantages and disadvantages of new policy led models such as the Dementia DES to identify those at greater risk of dementia?
• How can a case finding programme for dementia be optimised to maximise benefit for patients, whilst reducing potential harms?
• What is the acceptability to patients of a risk prediction tool to detect dementia at an earlier stage in the illness?
• Would key health professionals most likely use such a tool find it useful and acceptable tool and if so, who and how should it be used?
• What are the ethical implications of the use of such a tool in routine care for an illness for which there is currently no cure?

Changes to the original proposal

The original intention was to seek both public and patient views; the latter were to be sampled from those participating in the GP Directly Enhanced Dementia Services (DES) i.e. identified as being at high risk of dementia and to be offered “screening”.  Unfortunately the (DES) was removed from usual care in 2015-16 and so an evaluation of it was no longer considered appropriate; additional resource and time was devoted to seeking the views of the public.

Methods

As we anticipated that levels of knowledge about approaches to earlier identification of dementia and risk assessment processes among the general public would be low, we decided to use task group methodology. Data collection in task groups is similar to focus group methodology but includes a presentation of evidence and information about the topic under discussion to participants prior to exploring their personal views and experiences. A task group approach can be used to achieve consensus in the development of recommendations.  The presentations, developed from recent literature reviews, aimed to provide a summary of evidence-based information in a lay format to facilitate informed discussion.  The task group was initially piloted with a group of non-dementia specialist staff from Newcastle University and refined prior to the main study. Ethical approval for the project was obtained from Newcastle University.

Participants were recruited from two local non-statutory organisations:

•  Voice North, a patient/public involvement in research forum based in the North East of England (http://www.voicenorth.org/) and
•  Age UK, a national voluntary organisation, with local branches, which provides services and support to older people (http://www.ageuk.org.uk).

The two organisations used different recruitment approaches: Voice North mailed study information to their members whilst Age UK employed poster advertising at family carer group meetings. Both organisations sought consent from potentially interested participants to pass their contact details to the research team.  All potential participants were then sent further study information prior to contact by a researcher who provided a verbal explanation of the study and answered any questions. Follow-up contact focused on negotiating practical arrangements for task group attendance. Participants were assured that participation was voluntary and that they could withdraw at any time. Prior to a task group, written informed consent was secured from participants.

Data collection and analysis

The task groups, facilitated by 3 researchers, occurred between December 2015 and July 2016 and lasted approximately 2 hours. Five were held at Newcastle University and a sixth at an Age UK carers group. All task groups were digitally recorded, transcribed verbatim and the transcripts subsequently checked and anonymised. 

A thematic approach to analysis was adopted. Initially individual researchers read and re-read one or two transcripts in detail to become familiar with the data. This stage was particularly important since changes of personnel meant that the analysis was conducted by different researchers (CB) to those facilitating the task groups (CD, LN).  Following discussion of emergent themes, we developed draft coding frames for a) group discussions and b) presentations. The coding frames were then applied to further transcripts and discussed collectively in a further data workshop. Once the coding frames had been agreed, they were applied to all transcripts using Nvivo 11. Output relating to each theme and subtheme was then reviewed and a narrative summary produced independently by each researcher. This was thought to be a more effective way of scrutinising codes than simply checking coding or having two researchers code the data. The narratives were then compared and discussed in further data workshops. A combined narrative was then produced for each theme which incorporated the different perspectives of different researchers.

Results

Of the 51 people invited to take part, 31 agreed to participate in a task group; six groups were completed, each with between 3 to 7 participants. Of the 31 participants 21 (68%) were female. Around half the sample (15) were aged between 60-70 years; 13 (42%) were between 40-59 years and 3 (10%) were over 70 years. Eighteen (58 %) knew family members or friends with the illness; a small number had personal experience of proactive approaches to identifying dementia.

Firstly it is important to note that participants expressed difficulties in distinguishing between the different methods of earlier detection approaches such as case finding in high risk groups, the process of risk assessment and genetic screening. Thus the data presented includes some factual inaccuracies which reflect participants’ limited understandings of the different processes. In the narrative below we therefore use the term ‘proactive approaches’ as a generic term to include all of these activities and only differentiate between the separate approaches where participants were clearly discussing one specific approach.

Four overarching themes were identified, each of which had several subthemes (see Table 1). In addition to discussing the proactive approaches presented by the facilitators, participants considered how these might be enacted in practice and suggested alternative approaches to reduce risk at a population level.

Table 1- Overview of themes and sub-themes

Views on proactive approaches to dementia    ▪ Perceived benefits and  limitations    ▪ Psychological consequences of proactive approaches

Confusion around different proactive approaches to dementia      ▪ Understandings of dementia     ▪ Making sense of proactive approaches     ▪ Interpreting the results of proactive approaches

Practical issues in enacting proactive approaches to dementia     ▪ Value of different approaches       ▪ Existing and new opportunities for implementation     ▪ Barriers to implementation     ▪ Ethical considerations

Alternatives to proactive approaches  to dementia     ▪ Raising awareness of dementia     ▪ Health promotion: policy and practice initiatives

A more detailed narrative is about to be submitted for publication.

Key Findings 

There was considerable confusion amongst our participants around the different proactive approaches to identifying those with a greater risk of dementia for example, population screening versus case finding in high risk groups and tools to identify high risk groups.  However there was general consensus that such approaches should be a part of, and embedded within, routine health checks, which focused on achieving a healthier lifestyle, rather than be offered as standalone dementia tests. Participants felt that such health checks should be more widely available and provided by a range of health professionals, including pharmacists and nurses, as well as by doctors. Where possible, such approaches such include objective measures instead of self-reported behaviour.  Although participants also spoke positively about the need for population approaches to promoting healthy lifestyles, an individual’s wishes regarding their personal views should be a priority whilst acknowledging that this may change in the future.

As international policy shifts from earlier diagnosis and intervention to focus on more efficient ways of providing future dementia care, including reducing numbers with dementia, research opportunities are beginning to address the prevention as well as ‘cure and care’ agenda. The accurate identification of an individual’s risk of developing dementia, in order to identify those who can benefit the most from appropriate intervention, will be one part of this new agenda; any future research must however also explore the ethical and personal concerns associated with such approaches. Whilst the usefulness and efficiency of general lifestyle checks have been questioned, these may be a more acceptable way of translating dementia risk reduction approaches into usual care.

 

Plain English summary

Background:

Dementia has a huge impact on families and society. Age is the strongest risk factor for dementia but evidence increasingly shows that vascular risk factors and other behavioural/social factors also play a role. Some people are “at risk of dementia” because they have other health problems like Parkinson’s disease or have a strong family history. Based on this, tools to calculate an individual’s risk of dementia are being developed; however there has been little research to date seeking patient and public views about how they feel about dementia risk assessment.

 Methods:

We used task group methodology; this is similar to focus groups but includes a presentation of evidence and information about the topic under discussion to participants prior to seeking their personal views and experiences. Participants were recruited from two local non-statutory organisations:

1. i) Voice North, a patient/public involvement in research forum based in the North East of England and
2. ii) Age UK, a national voluntary organisation, with local branches, which provides services and support to older people.

Findings:

Six task groups were completed with 31 participants. Of the 31 participants 21 (68%) were female. Around half the sample (15) were aged between 60-70 years; 13 (42%) were between 40-59 years and 3 (10%) were over 70 years. Eighteen (58 %) knew family members or friends with the illness.

Four overarching themes were identified, each of which had several subthemes. In addition to discussing the proactive approaches presented by the facilitators, participants considered how these might be enacted in practice and suggested alternative approaches to reduce risk at a population level.

The main themes were:

Views on proactive approaches to dementia 

Confusion around different proactive approaches to dementia 

Practical issues in enacting proactive approaches to dementia 

Alternative approaches 

Conclusion

There was considerable confusion around the different approaches to identifying those with a greater risk of dementia for example, population screening versus case finding in high risk groups.  However there was general consensus that such approaches should be embedded within routine health checks which focused on achieving a healthier lifestyle, rather than be offered as standalone dementia tests. Such health checks should be more widely available and provided by a range of health professionals, including pharmacists and nurses, as well as by doctors. Although participants also spoke positively about the need for population approaches to promoting healthy lifestyles, an individual’s wishes regarding their personal views should be a priority.

Dissemination

Public involvement

Research involving NHS patients is difficult to undertake and complete in the time frame of a SPCR internally funded programme due to the increasing governance procedures to be completed before data collection begins.

Impact

Members of the project team have subsequently been successful in winning two follow up large programme grants as a consequence of this work.

 £1.98M. NIHR Global Health Research Group on Dementia Prevention and Enhanced Care (DePEC).  PI Professor Louise Robinson. 2017-2019.

 £ 1.45M Alzheimer Society. Centre of Excellence in dementia care and prevention. PI Professor Louise Robinson (Newcastle) with Dr Greta Rait, Dr Kate Walters (UCL). 2018-20

 Future impact:

This study expands a portfolio of work from UCL and Newcastle on dementia prevention and risk reduction. In terms of research, the Alzheimer’s Society future research priorities will include prevention in addition to cure, cause and care. 

This research will provide important information to inform the development of new approaches to dementia risk assessment, screening and case finding in general practice that maximize potential benefit to patients, whilst minimizing potential harms. The findings from this study will have immediate relevance to policy-makers and commissioners in informing future policy and practice.  We will feedback results to Public Health England via the Dementia Lead (Dr C Alessi) and to NHS England via the National Clinical Director for Dementia (Prof A Burns), aiming to influence the direction of policy development and implementation.

This project was funded by the National Institute for Health Research School for Primary Care Research (project number 261)

Project website: https://www.spcr.nihr.ac.uk/projects/assessing-dementia-risk-in-general-practice-a-qualitative-study-of-the-attitudes-and-views-of-patients-and-the-public

Department of Health Disclaimer

The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR School for Primary Care Research, NIHR, NHS or the Department of Health.