Project objectives

Background:

Dementia is rising in prevalence and has a huge impact, with substantial health, societal and economic consequences. In England policy has focussed on improving “timely” diagnosis and earlier intervention and led to new initiatives on dementia case finding (e.g. Dementia Directly Enhanced Scheme). We have little evidence on professionals’ experiences of participating in dementia case finding programmes, harms or benefits and impact on outcomes for patients and carers.Aim: To critically explore the views of key stakeholders about the acceptability and feasibility of case finding, and tools to assess dementia risk in primary care.

Objectives:

1) Attitudes to case finding for dementia, including new policy initiatives, and views on harms and benefits of such schemes

2) Views on the use of risk tools, and incorporating genetic markers, to identify patients at higher risk of dementia

Design:

Qualitative study using semi-structured interviews

Brief summary

Design

Face-to-face interviews were conducted using open-ended questions and were informal using a conversational style rather than a more structured approach. Structured questioning was seen as too restrictive for participants to talk in detail about individual experiences which could have diluted the focus of this study. Face-to-face interviewing was adopted because of its appropriateness when depth of meaning is important and when the research is primarily focused in gaining insight and understanding (Ritchie & Lewis 2003). The semi-structured interview schedule was developed in conjunction with information from the literature and advice from the project advisory group. The schedule allowed the interviewer to be prepared, yet gave the participant freedom to express their views with his/her own words. The schedule was modified to incorporate new themes identified as the interviews progressed. The approach to questioning followed Patton’s recommendations for good questions,  that are neutral, clear and sensitive to the interviewee.

Setting

General Practices in two inner city Clinical Commissioning Group (CCG) locations.

Population

We purposively sampled a range of general practitioners monitoring for experience of dementia DES, age, professional type, years of experience, gender and ethnicity to ensure maximum diversity of the sample.

Recruitment

Professionals were recruited through directly writing to all practice managers and with the help of the Comprehensive Local Research Network (CLRN) and Cluster primary care research groups. In addition, we used snowballing methods and an alert for the study was placed in the local CCG GP Bulletins. Interviews were carried out by an experienced primary care qualitative researcher (JW) with a background in dementia studies, until data saturation was met.

Ethics

NHS ethical approval from the HRA WALES REC 7 (REC:16/WA/0083)

Analysis

Data analysis was an iterative process of identifying, organising, refining and re-organising the data into themes and sub-themes. A grounded theory approach was adopted, with simultaneous involvement in data collection and analysis and “bottom up” development of analytic codes and categories from the data, rather than from preconceived hypotheses . This process began by familiarisation with the data by reading the transcripts and listening to the interview recordings several times, and noting down areas of interest and potential codes.  Initial codes were generated for as much as the data as possible and transcripts were coded to elicit and incorporate individual perspectives (this involved assigning a label or name to capture sections of the text), manifest codes as well as latent codes were used to develop a thematic table. Once the entire dataset was coded, data extracts were collated under each of these codes. Coding of the data was then checked by two experienced researchers. The codes were then organised into broader themes and sub-themes. An inductive approach to analysis was taken, where themes were directly linked to the data. An iterative process was followed, where the transcripts were revisited throughout the process of coding, theme allocation and written presentation to check each stage of the process 

Results

16 general practitioners were interviewed. All were aged between 25 and 65+ years, 11 were male. Seven GP partners, six GP registrars, two salariedGPs and one Locum participated. Of those eight worked full-time and eight were White British. Years of experience in practice ranged from less than five to more than 20. We also interviewed three health care assistants and two practice nurses.

There was not a standardised or systematic approach across practices to case finding. Case-finding (and general population screening) programmes such as the Dementia DES were not felt to be useful approaches to improving diagnostic rates of dementia. Targeted approaches based on a clear evidence base in particular for hard to reach populations or those with complex health needs may be beneficial.

Post diagnostic services were generally felt to be good and were not cited as a reason not to diagnose dementia. There were narratives capture around the ethical implications of the routine use of risk tools for an illness for which there is currently no cure and clear therapeutic pathway, and characterised the benefits and harms of ‘timely’ diagnosis.

People were familiar with using risk tools in other conditions, and could see benefits such as reinforcing clinical suspicion, and standardising approaches. . However there were concerns about the quality of the tools and the impact of false positives on patients.  Discussion of risk factors and lifestyle modifications were acceptable to primary care practitioners and relevant to many health conditions. However, this was embedded with the complexities and difficulties of behaviour change. Modifying risk factors for dementia overlapped with cardiovascular risk factors so the need for a new approach was questioned.

Communicating risk was a difficult area requiring discussion of an emotive and complex issue within a normal consultation Genetic testing and counselling were not felt to be the domain of the primary care practitioner requiring specialist scientific knowledge and interpretation

Conclusions

Future research should explore the development of public health campaigns for risk reduction for dementia. Policy makers should be mindful of presenting a clinically relevant evidence base for policy directives, consider the implications of the relationship and experience that the general practitioner has with their patients and their families and acknowledge individual clinical judgement for making decisions for dementia diagnosis. Therapeutic options and lack of social support systems remain a barrier to case finding approaches.

Plain English summary

There are over 800,000 people in the United Kingdom (UK) with dementia. Dementia has a huge impact on people with the illness, their families and carers. Health care costs are about £26 billion. England introduced dementia “case finding” in the NHS, where general practitioners asked people who were at high risk of getting dementia whether they have symptoms of dementia. Some people will be recorded as being “at risk of dementia” because of other health problems like diabetes or strokes. This policy was been introduced with little testing and then withdrawn. We do not know what GPs think about this, what impact there may be and whether there are any harms or benefits. 

We interviewed 16 GPs, 2 practice nurses and 3 health care assistants about their views about case finding and assessing people’s risk of dementia. We asked them about use of computerised tools and including genetic information. We taped the interviews and reviewed them to see what was said and what issues came out.

Case-finding was not felt to be useful and practitioners felt that interventions needed clear evidence of benefit. There were concerns about the ethics of identifying people when there was not a cure and the current care pathways/interventions are not always clear or available. Discussion of risk factors and lifestyle modifications were acceptable to primary care practitioners, but they acknowledged the difficulties of behaviour change. Genetic testing and counselling were not felt to be the domain of the primary care practitioner and required specialist scientific knowledge and interpretation.

Dementia prevention advice could be delivered via primary care. Practitioners require future policy interventions to increase dementia diagnosis to be clearly evidenced based before implementation.

Dissemination

Publications

Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review  (Journal of Medical Internet Research) Hopwood J, Walker N,McDonagh L, Rait G, Walters K, Iliffe S, Ross J, Davies. http://www.jmir.org/2018/6/e216

Papers in preparation

Case finding and assessing dementia risk in general practice: a qualitative study of the attitudes and views of general practitioners. Authors: Wilcock J, Lytras M, Walters K, Rait G

Posters and Conferences

• Poster: Assessment of dementia risk, timely diagnosis and post diagnostic support: a qualitative study of the attitudes and experiences of UK based primary care health professionals. 27th Alzheimer Europe Conference in Berlin 2017
• Poster: Assessing dementia risk in general practice: a qualitative study of the attitudes and views of general practitioners. NIHR School Primary Care Research 10th anniversary conference in London Authors: Wilcock J, Lytras M, Newton, L, Dickinson, C, Walters K, Robinson L, Qureshi, N, Lewins D, Rait G 2016

Project Information

https://www.spcr.nihr.ac.uk/projects/assessing-dementia-risk-in-general-practice-a-qualitative-study-of-the-attitudes-and-views-of-primary-care-health-professionals

Public involvement

We have been fortunate to have excellent PPI within the project. The advisor has now gone on to work on other dementia projects from our department.

Impact

New Collaboration:

Further funding: £1.45M Alzheimer Society. Centre of Excellence in dementia care and prevention. PI Professor Louise Robinson (Newcastle) with Dr Greta Rait, Dr Kate Walters and J Wilcock (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 project was funded by the National Institute for Health Research School for Primary Care Research (project number 277)

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.