Millard, Fiona Bayard (2014) Dementia: general practitioner diagnosis, management and reduction of risk factors, a regional perspective. PhD thesis, James Cook University.

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Abstract

Introduction

The research in this thesis focuses on dementia, examining the perspectives of both the consumers and providers of health care, especially patients attending their general practitioner (GP) and the GPs themselves.

Standard interventions have been tested that might improve consumer understanding and GP management of this challenging condition, with discussion on the possible impact of these interventions on health outcomes. The research has been conducted mainly in general practices across regional North Queensland, Australia, with smaller data samples from other areas of Australia and five sites in England, United Kingdom (UK).

Background

As people grow older they consult more often with their GP.[1] This creates opportunities for GPs to identify dementia symptoms in their ageing patients who are increasingly at risk of dementia with advancing years. GPs could also discuss dementia risk reduction, especially with patients who have concerns about their memory or health. Both the GP and their patients have roles in modifying dementia risk factors and managing the disease.[2, 3]

GPs can have a strong influence on patient behavior and this can be used to advantage when patients are encouraged to seek help for dementia symptoms and modify their lifestyle to reduce their risk of dementia.[4] However, many GPs feel their dementia knowledge is inadequate,[5] and even specialists may lack dementia training and feel that little can be done to help people living with this condition.[6] Evidence shows that disclosure of a dementia diagnosis facilitates support and treatments that can maximize the quality of life of people affected by the disease.[7]

In regional Queensland, the GP may be the only doctor accessible to older people. Most geriatricians are based in cities which may be over a thousand kilometers away. Thus the responsibility for identifying dementia cases may fall to the GP, who may also be the only doctor involved in providing ongoing management for these patients.

Aims

There were five primary aims for this research, each imbedded in one of the five chapters of results (chapters 3-7) and leading to five papers for publication.

1. To describe community dementia knowledge through a literature review.

2. To compare patient experiences with dementia and GP perceived role in dementia management.

3. To explore dementia knowledge and awareness of risk reduction strategies in general practice, both patients and the practice team.

4. To pilot a randomized controlled trial (RCT) to increase GP dementia case-finding, testing the interventions of education with or without audit.

5. To measure changes in GP dementia documentation in an RCT with the interventions of education and audit applied separately and together.

Methodology

A range of methods were used to investigate dementia knowledge and services and to test interventions that may improve these. A literature review was undertaken to provide a platform for the original research in this thesis. The research applied the designs of qualitative interviews, questionnaires, work-shop evaluations and randomized controlled trials. The settings were communities in Australia and UK with data obtained mainly from general practices but also from three dementia forums for health professionals. Participants were health professionals especially GPs, and general practice patients.

1. Literature review- community dementia knowledge

A systematic search of PubMed data base using the MeSH terms 'community' AND 'dementia' AND 'knowledge' identified 361 titles with 44 selected. Selection criteria required that the research focused on communities and described dementia beliefs and knowledge (Appendix A).

2. Patient interviews

Patient interviews were conducted as part of previous Master of General Practice research. Relevant results were included in this thesis for comparison with the initial PhD findings from health professional questionnaires. Thus new results from the health professional questionnaire describing their perceived role in diagnosing and managing dementia were compared with past research results describing patient experiences of the services they had received.

3. Questionnaires

Two questionnaires were prepared, one for health professionals and another for GP patients.

The health professional questionnaire explored their understanding of dementia and perceived role in managing the condition (Appendix B). The patient questionnaire explored their understanding of dementia and its risk factors and knowledge of risk reduction strategies for the condition (Appendix C).

Question structure varied from those requiring simple yes/no responses to open questions encouraging free string answers. Thus respondents provided answers to specific research questions as well as answers reflecting their own experience and beliefs.

4. Randomized controlled trials (RCTs)

i. A patient RCT

A waiting room pamphlet, the Alzheimer's Australia 'Mind Your Mind' one page dementia risk reduction summary (MYM) (Appendix D), was attached to half of the patient questionnaires which were then distributed randomly to patients in the GP waiting room. Responses of those with and those without the pamphlet were then compared.

ii. A GP RCT

This RCT was first piloted with 18 GPs in Mackay and Townsville, North Queensland then offered in a larger trial to GPs across North Queensland with 56 completing GPs. The trial compared GP documentation of dementia diagnoses in patient records using the interventions of an educational workshop and audit feedback applied separately and together.

The workshop consisted of the Royal Australian College of General Practitioners (RACGP) dementia quiz that included answers in 'GP Guidelines for Caring for Patients with Dementia' (Appendix E). A summary of the guidelines and information on dementia risk reduction strategies was provided for pre-reading (Appendix F).

The audit consisted of the number of dementia diagnoses documented in computerized medical records compared with a predicted prevalence of 5% of the patient population aged over 65 years.

The outcomes were the difference in the proportion of documented dementia cases at 0 and 6 months during the trial, obtained from two audits at the beginning and end of the trial.

Clinical Extractor Software (Appendix G)

This was developed as an audit tool and applied as part of the GP pilot RCT. However, this tool was not used in the larger trial due to compatibility problems with the types and versions of practice software used across regional Queensland.

5. Analysis

SPSS software was used for analysis of questionnaire and RCT data. This included:

i) Confidence Intervals and Odds Ratios in questionnaires.

ii) Pearson's Chi-squared test in questionnaires and patient RCT.

iii) Kruskal-Wallis test to compare the ranked means of documented dementia cases in each intervention group in the GP RCT pilot.

iv) Wilcoxon test to compare non-parametric paired data before and after intervention in the GP RCT pilot.

v) A two factor analysis of variance using a linear regression model for the larger GP RCT.

Results

1. Literature review (Chapter 3, Appendix A)

The review synthesized data from 44 papers representing 42 studies conducted in fourteen countries. The results showed that as dementia knowledge increased, so did help-seeking behaviors. Timely diagnosis of dementia and implementation of appropriate management were influenced by the dementia knowledge of both community members and their health attendants. Stigma against dementia reduced this effect. Acknowledgement of existing community beliefs in ethnic minority groups facilitated their acquisition of more dementia knowledge. Community input into health professional dementia education resulted in improved dementia management by these health professionals. Dissemination of information about dementia risk reduction to younger people was considered a potential means of minimizing the burden of dementia through early lifestyle changes that may reduce future prevalence.

2. A comparison of health professional perceptions of their dementia services and patient experiences (Chapter 4, Appendix H)

Interviews with 37 patients and carers revealed that most carers noticed signs of dementia in the person they were caring for before the GP but needed help in interpreting these as due to dementia. GPs often delayed providing a dementia diagnosis. Older patients tended to consult with older GPs, but the GP questionnaire responses suggested older GPs were less informed about dementia than younger GPs. The results of 114 health professional questionnaires showed that dementia forums attracted doctors and nurses in the older age groups, suggesting that they wanted to increase their dementia knowledge. Health care professionals had varying levels of knowledge and interest in looking after dementia patients. Despite this, patients expected their GP to help them should they develop dementia, and GPs thought patients should consult with them if they had dementia concerns.

3. GP, practice nurse and patient understanding of dementia: questionnaires and RCT on patient dementia risk reduction knowledge (Chapter 5, Appendix I)

This section of the research analyzed data from 621 patients, 127 GPs and 26 nurses at 54 sites across Australia and five sites in England. The results showed that 37% of patients had memory concerns, 60% described dementia as 'memory loss' and 78% wanted to learn about reducing their dementia risk. However, only 1.3% stated that they had learned about dementia from a doctor, although 81% said they would seek help from a doctor if they thought they had dementia. Most (93%) would want to be told if they had a diagnosis of dementia. The RCT showed that patients receiving the pamphlet intervention with their questionnaire were significantly more likely to respond with strategies that might reduce their dementia risk (p=0.0040). The results of 126 GP questionnaires showed that 41% had graduated 20 or more years ago. In regional Queensland 47% of GPs had graduated from a medical school overseas and 23% from a developing country. The majority (63%) had dementia training but only 22% assessed their dementia knowledge as adequate. There was no significant correlation between self-assessment of dementia knowledge as adequate and dementia training. Despite this perceived knowledge deficit, 62% thought a GP was the appropriate person to discuss dementia with patients although 14% would prefer someone else to manage their dementia cases

4. GP pilot RCT (Chapter 6, Appendix J)

In the pilot trial (N=18) there was significant improvement in documentation of dementia cases following the intervention of audit combined with education (p=0.018), but not with education alone or the control of no intervention (p=0.18). Participant evaluation of 18 workshops at 14 sites in North Queensland indicated increased knowledge with learning objectives mostly met. The highest rating was for the 'focus of the presentation' rated by nearly 100% as mostly met. The lowest rating was for 'confidence in making a dementia diagnosis', rated by about 60% as partially met.

5. Larger GP RCT (Chapter 7, Appendix K)

In the larger trial (N=56), an intention to treat analysis found no significant increase in dementia documentation for education (p=0.14) or audit (p=0.52). However, only 37 GPs complied with their randomized intervention. A per protocol analysis using data from these GPs (N=37) found audit (p=0.017) but not education (p=0.79) significantly improved the proportion of documented dementia diagnoses.

Discussion

A literature review on community dementia knowledge confirmed that dementia knowledge facilitates dementia help-seeking behaviors in patients and management by GPs. Knowledge about dementia risk reduction may increase the implementation of risk reduction strategies by GPs and patients.

Patients were willing participants in the research and eager to learn about reducing their dementia risk. GPs were more difficult to engage, with personal contact required to obtain completed questionnaires from them. Nevertheless, data was obtained from a large number of sites in Australia and also UK.

A pilot RCT demonstrated a trend for education combined with audit to improve GP dementia documentation. Education alone had no significant impact. A larger RCT supported the value of audit in improving GP dementia documentation, with education either combined with audit or alone having no significant impact.

A final discussion integrates the results and comments on the research experiences, and lessons learned.

Summary

The results of this research indicate that both GPs and their patients have some understanding of dementia, but knowledge about dementia risk factors and the benefits of diagnosis and active management could be improved. A simple waiting room pamphlet can raise patient awareness of dementia risk reduction strategies, introducing a topic for discussion in consultations. Although educational workshops are standard tools for professional development, the RCT was unable to demonstrate that these significantly changed GP practice. Audit on the other hand appeared to improve dementia documentation, the first step in facilitating appropriate management and support for people living with dementia and their carers. Workshops may require additional resources, whereas audit can be cheap and accessible. GPs in regional Queensland often lacked dementia specialist support but were keen to improve their own dementia knowledge, with interest in dementia risk reduction possibly reflecting personal interest from an ageing GP population.

Item ID:	41022
Item Type:	Thesis (PhD)
Keywords:	Alzheimer’s disease; audit; data extraction; dementia diagnosis; dementia patients; dementia; education; electronic medical records; general practitioner; geriatrics; GP; health education; knowledge; memory loss; patient interviews; patients; risk factors; senile dementia; treatment
Related URLs:	http://researchonline.jcu.edu.au/5348/ http://researchonline.jcu.edu.au/18022/ http://researchonline.jcu.edu.au/5932/ http://researchonline.jcu.edu.au/37971/ http://researchonline.jcu.edu.au/14127/
Copyright Information:	Copyright © 2014 Fiona Bayard Millard
Additional Information:	Publications arising from this thesis are available from the Related URLs field. The publications are: Chapter 4: Millard, Fiona, and Baune, Bernhard (2009) Dementia – who cares?: a comparison of community needs and primary care services. Australian Family Physician, 38 (8). pp. 642-649. Chapter 5: Millard, Fiona B., Kennedy, R. Lee, and Baune, Bernhard T. (2011) Dementia: opportunities for risk reduction and early detection in general practice. Australian Journal of Primary Health, 17 (1). pp. 89-94. Chapter 6: Millard, Fiona B., Thistlethwaite, Jill, Spagnolo, Chris, Kennedy, R. Lee, and Baune, Bernhard T. (2008) Dementia diagnosis: a pilot randomised controlled trial of education and IT audit to assess change in GP dementia documentation. Australian Journal of Primary Health, 14 (3). pp. 141-149. Chapter 7: Millard, Fiona Bayard, Baune, Bernhard Theodor, Kennedy, Lee, and Gunnarsson, Ronny (2014) General practitioner dementia documentation: a randomised controlled trial using interventions of education and audit. In: Alzheimer's & Dementia, P679-P679. From: Alzheimer's Association International Conference 2014, 12-17 July 2014, Copenhagen, Denmark. Millard, Fiona (2008) GP management of dementia: a consumer perspective. Australian Family Physician, 37 (1-2). pp. 89-92.
Date Deposited:	29 Oct 2015 02:51
FoR Codes:	11 MEDICAL AND HEALTH SCIENCES > 1103 Clinical Sciences > 110308 Geriatrics and Gerontology @ 40% 13 EDUCATION > 1303 Specialist Studies in Education > 130313 Teacher Education and Professional Development of Educators @ 20% 11 MEDICAL AND HEALTH SCIENCES > 1117 Public Health and Health Services > 111702 Aged Health Care @ 40%
SEO Codes:	92 HEALTH > 9201 Clinical Health (Organs, Diseases and Abnormal Conditions) > 920112 Neurodegenerative Disorders Related to Ageing @ 50% 92 HEALTH > 9202 Health and Support Services > 920202 Carer Health @ 50%
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