Publications by authors named "Jane Wilcock"

41 Publications

Remote primary care consultations for people living with dementia during the COVID-19 pandemic: experiences of people living with dementia and their carers.

Br J Gen Pract 2021 Feb 24. Epub 2021 Feb 24.

University College London Research Department of Primary Care and Population Health, London, United Kingdom.

Background: COVID-19 has accelerated remote healthcare provision in primary care, with changes potentially permanent. The implementation of remote provision of healthcare needs to hear from vulnerable populations, such as people living with dementia.

Aim: To understand the remote healthcare experiences of patients living with dementia and their family carers during the COVID-19 pandemic.

Design And Setting: Qualitative interviews with community-based patients living with dementia and their carers during early months (May-August 2020) of the COVID-19 pandemic in England.

Methods: Semi-structured interviews were conducted remotely by telephone or video call with 30 patients living with dementia and 31 carers. Data were analysed using thematic analysis.

Results: Three main themes were derived relating to: 1) proactive care at the onset of COVID-19 restrictions, 2) avoidance of healthcare settings and services, and 3) difficulties with remote healthcare encounters. People living with dementia and their carers felt check-up calls were reassuring but limited in scope and content. Some avoided healthcare services, wishing to minimise COVID-19 risk, reduce NHS burden, or encountering technological barriers. Difficulties in remote consultations included lack of prompts to remember problems, dealing with new emerging problems, rescheduling/missed calls, and inclusion of the person with dementia's voice.

Conclusion: While remote consultations could be effective, pro-active calls could be more structured around needs, and consideration should be given to replace non-verbal prompts to describe problems, particularly for new health concerns. In continuing remote consultations, it is important to facilitate engagement with patients living with dementia and their carers to ensure best practice.
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http://dx.doi.org/10.3399/BJGP.2020.1094DOI Listing
February 2021

A lump in the throat: laryngopharyngeal reflux.

BMJ 2020 11 2;371:m4091. Epub 2020 Nov 2.

Royal National Ear Nose & Throat Hospital, London, UK.

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http://dx.doi.org/10.1136/bmj.m4091DOI Listing
November 2020

Interdental and GP relationships in oral cancer.

Br J Gen Pract 2020 11 29;70(700):534. Epub 2020 Oct 29.

Leicester Royal Infirmary.

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http://dx.doi.org/10.3399/bjgp20X713201DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7594822PMC
November 2020

Implementing post diagnostic dementia care in primary care: a mixed-methods systematic review.

Aging Ment Health 2020 Sep 10:1-14. Epub 2020 Sep 10.

Research Department of Primary Care and Population Health, University College London, London, UK.

Objectives: Concentrating post-diagnostic dementia care in primary care may lead to better and more cost-effective care closer to home. We aimed to assess which intervention components and contextual factors may contribute to the successful delivery and implementation of primary care-led post-diagnostic dementia care.

Methods: Mixed-methods systematic review. We searched five databases (inception-March 2019) with reference list screening and citation tracking. We included studies evaluating post-diagnostic dementia care interventions where primary care had a significant role in dementia care, which assessed one or more implementation elements (acceptability, feasibility, adoption, sustainability, reach, costs, appropriateness or fidelity). Two authors independently critically appraised studies.

Results: Out of 4528 unique references, we screened 380 full texts and included 49 evaluations of services collecting implementation process data. Most services had high acceptability ratings. The most acceptable components were information provision, social and emotional support and links to community organisations. Feasibility was chiefly influenced by provider engagement and leadership, building dementia care capacity, sufficient resources/funding and collaboration. Care quality was maximised through adding capacity from a dementia-specific health professional. On the basis of limited data, costs for various primary care-led models did not substantially differ from each other.

Conclusion: A range of primary care-led dementia care models appear feasible and acceptable. Future services should: add dementia-focussed health professionals into primary care, develop primary care leadership and provide sufficient funding and collaboration opportunities. Information, community service links and social and ongoing support should be part of services. Further exploration of service reach and formalised fidelity assessment are needed.
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http://dx.doi.org/10.1080/13607863.2020.1818182DOI Listing
September 2020

Insect bites.

BMJ 2020 08 7;370:m2856. Epub 2020 Aug 7.

North Bristol NHS Trust, Bristol, UK.

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http://dx.doi.org/10.1136/bmj.m2856DOI Listing
August 2020

What works in managing complex conditions in older people in primary and community care? A state-of-the-art review.

Health Soc Care Community 2020 11 15;28(6):1915-1927. Epub 2020 Jul 15.

Research Department of Primary Care and Population Health, University College London, London, UK.

The number of older people living with complex health conditions is increasing, with the majority of these managed in primary and community settings. Many models of care have been developed to support them, however, there is mixed evidence on their value and they include multiple overlapping components. We aimed to synthesise the evidence to learn what works for managing complex conditions in older people in primary and community care. We carried out a state-of-the-art review of systematic reviews. We searched three databases (January 2009 to July 2019) for models of primary and community care for long-term conditions, frailty, multimorbidity and complex neurological conditions common to older people such as dementia. We narratively synthesised review findings to summarise the evidence for each model type and identify components which influenced effectiveness. Out of 2,129 unique titles and abstracts, 178 full texts were reviewed and 54 systematic reviews were included. We found that the models of care were more likely to improve depressive symptoms and mental health outcomes than physical health or service use outcomes. Interventions including self-management, patient education, assessment with follow-up care procedures, and structured care processes or pathways had greater evidence of effectiveness. The level of healthcare service integration appeared to be more important than inclusion of specific professional types within a team. However, more experienced and qualified nurses were associated with better outcomes. These conclusions are limited by the overlap between reviews, reliance on vote counting within some included reviews and the quality of study reports. In conclusion, primary and community care interventions for complex conditions in older people should include: (a) clear intervention targets; (b) explicit theoretical underpinnings; and (c) elements of self-management and patient education, structured collaboration between healthcare professionals and professional support. Further work needs to determine the optimal intensity, length, team composition and role of technology in interventions.
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http://dx.doi.org/10.1111/hsc.13085DOI Listing
November 2020

Effectiveness of different post-diagnostic dementia care models delivered by primary care: a systematic review.

Br J Gen Pract 2020 Jun 28;70(695):e434-e441. Epub 2020 May 28.

Department of Primary Care and Population Health, University College London, London, UK.

Background: Global policy recommendations suggest a task-shifted model of post-diagnostic dementia care, moving towards primary and community-based care. It is unclear how this may best be delivered.

Aim: To assess the effectiveness and cost-effectiveness of primary care-based models of post-diagnostic dementia care.

Design And Setting: A systematic review of trials and economic evaluations of post-diagnostic dementia care interventions where primary care was substantially involved in care plan decision making.

Method: Searches were undertaken of MEDLINE, PsychINFO, EMBASE, Web of Science, and CINAHL (from inception to March 2019). Two authors independently critically appraised studies and inductively classified interventions into types of care models. Random effects meta-analysis or narrative synthesis was conducted for each model where appropriate.

Results: From 4506 unique references and 357 full texts, 23 papers were included from 10 trials of nine interventions, delivered in four countries. Four types of care models were identified. Primary care provider (PCP)-led care ( = 1) led to better caregiver mental health and reduced hospital and memory clinic costs compared with memory clinics. PCP-led care with specialist consulting support ( = 2) did not have additional effects on clinical outcomes or costs over usual primary care. PCP-case management partnership models ( = 6) offered the most promise, with impact on neuropsychiatric symptoms, caregiver burden, distress and mastery, and healthcare costs. Integrated primary care memory clinics ( = 1) had limited evidence for improved quality of life and cost-effectiveness compared with memory clinics.

Conclusion: Partnership models may impact on some clinical outcomes and healthcare costs. More rigorous evaluation of promising primary care-led care models is needed.
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http://dx.doi.org/10.3399/bjgp20X710165DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7239042PMC
June 2020

Exploring how triads of people living with dementia, carers and health care professionals function in dementia health care: A systematic qualitative review and thematic synthesis.

Dementia (London) 2021 Apr 25;20(3):1080-1104. Epub 2020 Mar 25.

University College London, UK.

Background: Many qualitative studies report the post-diagnostic care experiences of carers and people living with dementia; however, this is not often accompanied by opportunities to hear the corresponding views of their health care professionals and how this triadic relationship functions. The aim of this review was to identify and thematically synthesize the experiences of health care services reported by people living with dementia, their carers and health care professionals.

Methods: Medline, PsycINFO, Embase and CINAHL were searched from inception to 31 July 2019 for qualitative research including people living with dementia, carers and health care professionals. Data were coded and thematically synthesised using NVivo.

Results: Of 10,045 search results, 29 papers relating to 27 studies were included in the final synthesis, including 261 people living with dementia, 444 carers and 530 health care professionals. Six themes emerged related to the functioning of a dementia care triad: (1) involving the person living with dementia, (2) establishing expectations of care and the roles of the members of the triad, (3) building trust, (4) effective communication, (5) continuity of care and (6) understanding the unique relationship dynamics within each triad.

Discussion: The interactions and complexity of triadic dementia care relationships further our understanding of how to improve dementia care. Awareness of possible diverging attitudes highlights areas of necessary improvement and further research into facilitating engagement, such as when multiple professionals are involved or where there are mismatched expectations of the roles of triad members. In order to operate efficiently as a triad member, professionals should be aware of how pre-existing relations can influence the composition of a triad, encourage the involvement of the person living with dementia, clarify the expectations of all parties, establish trusting relationships and enable communication within the direct triad and beyond.
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http://dx.doi.org/10.1177/1471301220915068DOI Listing
April 2021

How accurate are GPs at integrating evidence into prescribing decisions?

Br J Gen Pract 2020 05 30;70(694):224-225. Epub 2020 Apr 30.

Cranwich Road Surgery; Vice-chair, Overdiagnosis Interest Group, Royal College of General Practitioners, London.

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http://dx.doi.org/10.3399/bjgp20X708857DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7065680PMC
May 2020

MEDREV (pharmacy-health psychology intervention in people living with dementia with behaviour that challenges): the feasibility of measuring clinical outcomes and costs of the intervention.

BMC Health Serv Res 2020 Mar 2;20(1):157. Epub 2020 Mar 2.

Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK.

Background: People living with dementia in care homes frequently exhibit "behaviour that challenges". Anti-psychotics are used to treat such behaviour, but are associated with significant morbidity. This study researched the feasibility of conducting a trial of a full clinical medication review for care home residents with behaviour that challenges, combined with staff training. This paper focusses on the feasibility of measuring clinical outcomes and intervention costs.

Methods: People living with moderate to severe dementia, receiving psychotropics for behaviour that challenges, in care homes were recruited for a medication review by a specialist pharmacist. Care home and primary care staff received training on the management of challenging behaviour. Data were collected at 8 weeks, and 3 and 6 months. Measures were Neuropsychiatric Inventory-Nursing Home version (NPI-NH), cognition (sMMSE), quality of life (EQ-5D-5 L/DEMQoL) and costs (Client Services Receipt Inventory). Response rates, for clinical, quality of life and health economic measures, including the levels of resource-use associated with the medication review and other non-intervention costs were calculated.

Results: Twenty-nine of 34 participants recruited received a medication review. It was feasible to measure the effects of the complex intervention on the management of behaviour that challenges with the NPI-NH. There was valid NPI-NH data at each time point (response rate = 100%). The sMMSE response rate was 18.2%. Levels of resource-use associated with the medication review were estimated for all 29 participants who received a medication review. Good response levels were achieved for other non-intervention costs (100% completion rate), and the EQ-5D-5 L and DEMQoL (≥88% at each of the time points where data was collected).

Conclusions: It is feasible to measure the clinical and cost effectiveness of a complex intervention for behaviour that challenges using the NPI-NH and quality of life measures.

Trial Registration: ISRCTN58330068. Retrospectively registered, 15 October 2017.
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http://dx.doi.org/10.1186/s12913-020-5014-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7053151PMC
March 2020

Quantitative analysis of medical students' and physicians' knowledge of degenerative cervical myelopathy.

BMJ Open 2020 01 12;10(1):e028455. Epub 2020 Jan 12.

Department of Clinical Neurosurgery, University of Cambridge, Cambridge, UK

Objectives: We have previously identified a delay in general practitioner (GP) referrals for patients with degenerative cervical myelopathy (DCM). The aim of this study was to evaluate whether an education gap existed for DCM along the GP training pathway by quantitatively assessing training in, and knowledge of, this condition.

Design: Gap analysis: comparison of DCM to other conditions. Comparators selected on the basis of similar presentation/epidemiology (multiple sclerosis), an important spinal emergency (cauda equina syndrome) and a common disease (diabetes mellitus).

Subjects: Medical students, foundation doctors and GP trainees. PRIMARY AND SECONDARY OUTCOME MEASURES: (1) Assessment of training: quantitative comparison of references to DCM in curricula (undergraduate/postgraduate) and commonly used textbooks (Oxford Handbook Series), to other conditions using modal ranks. (2) Assessment of knowledge: using standardised questions placed in an online question-bank (Passmedicine). Results were presented relative to the question-bank mean (+/-).

Results: DCM had the lowest modal rank of references to the condition in curricula analysis and second lowest modal rank in textbook analysis. In knowledge analysis questions were attempted 127 457 times. Performance for DCM questions in themes of presentation (+6.1%), workup (+0.1%) and management (+1.8%) were all greater than the question-bank mean and within one SD. For students and junior trainees, there was a serial decrease in performance from presentation and workup (-0.7% to +10.4% relative to question-bank mean) and management (-0.6% to -3.9% relative to question-bank mean).

Conclusions: Although infrequently cited in curricula and learning resources, knowledge relating to DCM was above average. However, knowledge relating to its management was relatively poor.
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http://dx.doi.org/10.1136/bmjopen-2018-028455DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7044983PMC
January 2020

Under the radar: General practitioners' experiences of directly employed care workers for older people.

Health Soc Care Community 2020 05 3;28(3):1099-1108. Epub 2020 Jan 3.

NIHR Health & Social Care Workforce Research Unit, King's College London, London, UK.

The Care Act 2014 allows eligible people with care and support needs to access funding directly from local authorities in England. Such funds may be used to employ care workers. Others may employ care workers using their own or family resources. This study explores the working relationships, views and experiences of General Practitioner (GP) about older people's directly employed care workers (DECWs). Qualitative interviews were conducted with 20 GPs in England, identified by convenience sampling of research networks and snowballing methods. Data were analysed thematically. Three overarching themes were identified: (a) anxieties about the identity of the DECW, and their relationship to their employer; (b) experiences of relationship-based care, and; (c) tasks carried out by DECWs. Identity mattered because DECWs can appear as an unknown participant in consultations, raising questions about consent, and prompting thoughts about elder abuse. Uncertainty about identity made documentation of DECWs' details in electronic medical records and care plans problematic. Case examples of relational care illustrated the benefits of reciprocity between older person and their employee who sometimes provided continuity of care and care co-ordination for their employer. Participants were alert to the risks of exploitation and insecurity for DECWs whose tasks were thought to span household and personal care, transport assistance and health-related activities. The involvement of DECWs in maintaining older people's health raises questions about the support they receive from health professionals. In conclusion DECWs are well placed to monitor older people's health, provide continuity of care and undertake certain healthcare tasks. GPs envisaged such workers as potentially valuable assets in community-based care for an ageing population. They called for skills training for this workforce and the development of protocols for delegation of health tasks and safeguarding of vulnerable older people. Older people employing care workers and those advising or supporting them should address communications with health providers in employment contracts and job descriptions.
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http://dx.doi.org/10.1111/hsc.12943DOI Listing
May 2020

Just a cutaneous (keratotic) horn?

BMJ 2019 Mar 7;364:l595. Epub 2019 Mar 7.

Silverdale Medical Practice, Salford, Manchester, UK.

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http://dx.doi.org/10.1136/bmj.l595DOI Listing
March 2019

Diagnosis and referral delays in primary care for oral squamous cell cancer: a systematic review.

Br J Gen Pract 2019 Feb 19;69(679):e112-e126. Epub 2018 Nov 19.

School of Medicine, University of Liverpool, Liverpool, and GP, Silverdale Medical Practice, Swinton, Salford, Greater Manchester, UK.

Background: The incidence of oral cancer is increasing. Guidance for oral cancer from the National Institute for Health and Care Excellence (NICE) is unique in recommending cross-primary care referral from GPs to dentists.

Aim: This review investigates knowledge about delays in the diagnosis of symptomatic oral squamous cell carcinoma (OSCC) in primary care.

Design And Setting: An independent multi-investigator literature search strategy and an analysis of study methodologies using a modified data extraction tool based on Aarhus checklist criteria relevant to primary care.

Method: The authors conducted a focused systematic review involving document retrieval from five databases up to March 2018. Included were studies looking at OSCC diagnosis from when patients first accessed primary care up to referral, including length of delay and stage of disease at time of definitive diagnosis.

Results: From 538 records, 16 articles were eligible for full-text review. In the UK, more than 55% of patients with OSCC were referred by their GP, and 44% by their dentist. Rates of prescribing between dentists and GPs were similar, and both had similar delays in referral, though one study found greater delays attributed to dentists as they had undertaken dental procedures. On average, patients had two to three consultations before referral. Less than 50% of studies described the primary care aspect of referral in detail. There was no information on inter-GP-dentist referrals.

Conclusion: There is a need for primary care studies on OSCC diagnosis. There was no evidence that GPs performed less well than dentists, which calls into question the NICE cancer option to refer to dentists, particularly in the absence of robust auditable pathways.
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http://dx.doi.org/10.3399/bjgp18X700205DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6355296PMC
February 2019

Guiding practitioners through end of life care for people with dementia: The use of heuristics.

PLoS One 2018 14;13(11):e0206422. Epub 2018 Nov 14.

Research Department of Primary Care and Population Health, University College London, London, United Kingdom.

Background: End of life care (EOLC) for people with dementia can present a multitude of challenges and difficult decisions for practitioners. These challenges may include assessment and management of difficulties with eating and swallowing, responding to agitation, treating pain, and managing recurrent infections. Practitioners sometimes lack both confidence in making end of life decisions and guidance. This study developed an alternative to lengthy guidelines, in the form of heuristics which were tested in clinical settings. The aim of this study was to test the usability and acceptability of a set of heuristics which could be used by practitioners providing EOLC for people with dementia in a variety of clinical and care settings.

Methods: A three phase co-design process was adopted: 1) Synthesis of evidence and outputs from interviews and focus groups with family carers and practitioners, by a co-design group, to develop heuristics; 2) Testing of the heuristics in five clinical or care settings for six months; 3) Evaluation of the heuristics at three and six months using qualitative individual and group interviews.

Results: Four heuristics were developed covering: eating and swallowing difficulties, agitation and restlessness, reviewing treatment and interventions at the end of life, and providing routine care. The five sites reported that the heuristics were simple and easy to use, comprehensive, and made implicit, tacit knowledge explicit. Four themes emerged from the qualitative evaluation: authority and permission; synthesis of best practice; providing a structure and breaking down complexity; and reassurance and instilling confidence.

Conclusion: Use of heuristics is a novel approach to end of life decision making in dementia which can be useful to both experienced and junior members of staff making decisions. Heuristics are a practical tool which could overcome a lack of care pathways and direct guidance in end of life care for people with dementia.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0206422PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6235299PMC
April 2019

Medication review plus person-centred care: a feasibility study of a pharmacy-health psychology dual intervention to improve care for people living with dementia.

BMC Psychiatry 2018 10 19;18(1):340. Epub 2018 Oct 19.

School of Life and Health Sciences, Aston University, Birmingham, B4 7ET, UK.

Background: "Behaviour that Challenges" is common in people living with dementia, resident in care homes and historically has been treated with anti-psychotics. However, such usage is associated with 1800 potentially avoidable deaths annually in the UK. This study investigated the feasibility of a full clinical trial of a specialist dementia care pharmacist medication review combined with a health psychology intervention for care staff to limit the use of psychotropics. This paper focuses on feasibility; including recruitment and retention, implementation of medication change recommendations and the experiences and expectations of care staff.

Methods: West Midlands care homes and individuals meeting the inclusion criteria (dementia diagnosis; medication for behaviour that challenges), or their personal consultee, were approached for consent. A specialist pharmacist reviewed medication. Care home staff received an educational behaviour change intervention in a three-hour session promoting person-centred care. Primary healthcare staff received a modified version of the training. The primary outcome measure was the Neuropsychiatric Inventory-Nursing Home version at 3 months. Other outcomes included quality of life, cognition, health economics and prescribed medication. A qualitative evaluation explored expectations and experiences of care staff.

Results: Five care homes and 34 of 108 eligible residents (31.5%) were recruited, against an original target of 45 residents across 6 care homes. Medication reviews were conducted for 29 study participants (85.3%) and the pharmacist recommended stopping or reviewing medication in 21 cases (72.4%). Of the recommendations made, 57.1% (12 of 21) were implemented, and implementation (discontinuation) took a mean of 98.4 days. In total, 164 care staff received training and 21 were interviewed. Care staff reported a positive experience of the intervention and post intervention adopting a more holistic patient-centred approach.

Conclusions: The intervention contained two elements; staff training and medication review. It was feasible to implement the staff training, and the training appeared to increase the ability and confidence of care staff to manage behaviour that challenges without the need for medication. The medication review would require significant modification for full trial partly related to the relatively limited uptake of the recommendations made, and delay in implementation.

Trial Registration: ISRCTN58330068 . Registered 15 October 2017. Retrospectively registered.
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http://dx.doi.org/10.1186/s12888-018-1907-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6194710PMC
October 2018

Case Management for People with Dementia and its Translations: A Discussion Paper.

Dementia (London) 2019 Apr 17;18(3):951-969. Epub 2017 Mar 17.

Centre of Expertise in Longevity and Long-term Care, Faculty of Humanities, Charles University in Prague, Czech Republic.

Case management is generally seen as a way to provide efficient, cost-saving person-centred care for people with dementia by connecting together fragmented services, but the available evidence in favour of its merits is often considered inconclusive, unclear and sketchy. This discussion paper investigates the evidence of the benefit of case management for people with dementia and explores the complexity of the concept and the experiences of its implementation. It offers a comprehensive framework for conceptualising various types of case management and asks the question: who can be a case manager? Building on examples from three European countries it addresses the problem of the expansion and adoption of the case management method. It compares the conventional model of diffusion of innovation with the ideas of interessement and co-constitution and envisions a successful model of case management as a fluid technology that is both friendly and flexible, allowing it to adapt to different settings and systems.
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http://dx.doi.org/10.1177/1471301217697802DOI Listing
April 2019

A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia.

Health Expect 2018 02 22;21(1):118-127. Epub 2017 Jun 22.

Research Department of Primary Care and Population Health, University College London, London, UK.

Background: Dementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities.

Objective: To explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia.

Design: Qualitative methodology using focus groups and semi-structured interviews and thematic analysis methods.

Settings And Participants: Former (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care.

Results: Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life.

Conclusions: This study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on-going approach to conversation may increase preparedness and family carers' expectations of end of life.
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http://dx.doi.org/10.1111/hex.12593DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5750695PMC
February 2018

The UK experience of promoting dementia recognition and management in primary care.

Z Gerontol Geriatr 2017 May 17;50(Suppl 2):63-67. Epub 2017 Jan 17.

University College London, Gower Street, WC1E 6BT, London, UK.

Background: The early and timely recognition of dementia syndrome is a policy imperative in many countries. In the UK the achievement of earlier and timelier recognition has been pursued through educational interventions, incentivisation of general practitioners and the promotion of a network of memory clinics.

Objective: The effectiveness of education, incentivisation and memory clinic activity are unknown. This article analyses data from different sources to evaluate the impact of these interventions on the incidence and prevalence of dementia, and the diagnostic performance of memory clinics.

Material And Methods: Three data sources were used: 1) aggregated, anonymised data from a network of general practices using the same electronic medical record software, The Health Information Network (THIN), 2) UK Health & Social Care Information Centre data reports and 3) Responses to Freedom of Information Act requests.

Results: Educational interventions did not appear to change the recorded incidence of dementia syndrome. There was no apparent effect of education, incentives or memory clinic activity on the reported incidence of dementia syndrome between 1997 and 2011 but there were signs of change in the documentation of consultations with people with dementia. There was no clear impact of incentivisation and memory clinic activity in prevalence data. Memory clinics are seeing more patients but fewer are being diagnosed with dementia.

Conclusion: It is not clear why there has been no upturn in documented incidence or prevalence of dementia syndrome despite substantial efforts and this requires further investigation to guide policy changes. The performance of memory clinics also needs further study.
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http://dx.doi.org/10.1007/s00391-016-1175-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5408038PMC
May 2017

Erratum to: A co-design process developing heuristics for practitioners providing end of life care for people with dementia.

BMC Palliat Care 2016 08 18;15(1):77. Epub 2016 Aug 18.

Research Department of Primary Care & Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.

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http://dx.doi.org/10.1186/s12904-016-0148-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991065PMC
August 2016

A co-design process developing heuristics for practitioners providing end of life care for people with dementia.

BMC Palliat Care 2016 Aug 2;15:68. Epub 2016 Aug 2.

Research Department of Primary Care & Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.

Background: The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia.

Methods: An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice.

Results: Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering 'comfort feeding' only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer's wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting the delivery of care, in order to promote comfort and dignity at the end of life.

Conclusions: The heuristics are easy to use and remember, offering a novel approach to decision making for dementia end-of-life care. They have the potential to be used alongside existing end-of-life care recommendations, adding more readily available practical assistance. This is the first study to synthesise experience and existing evidence into easy-to-use heuristics for dementia end-of-life care.
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http://dx.doi.org/10.1186/s12904-016-0146-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4969644PMC
August 2016

Good practice in shared care for inflammatory arthritis.

Authors:
Jane Wilcock

Br J Gen Pract 2016 Jul;66(648):350

School of Medicine, University of Liverpool, Community Clinical Tutor, Part-Time GP, Silverdale Medical Practice, Swinton. E-mail:

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http://dx.doi.org/10.3399/bjgp16X685825DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4917028PMC
July 2016

Improving the management of behaviour that challenges associated with dementia in care homes: protocol for pharmacy-health psychology intervention feasibility study.

BMJ Open 2016 Mar 23;6(3):e010279. Epub 2016 Mar 23.

Aston Health Research and Innovation Cluster, Aston University, Birmingham, UK.

Introduction: The inappropriate use of antipsychotics in people with dementia for behaviour that challenges is associated with an estimated 1800 deaths annually. However, solely focusing on antipsychotics may transfer prescribing to other equally dangerous psychotropics. Little is known about the role of pharmacists in the management of psychotropics used to treat behaviours that challenge. This research aims to determine whether it is feasible to implement and measure the effectiveness of a combined pharmacy-health psychology intervention incorporating a medication review and staff training package to limit the prescription of psychotropics to manage behaviour that challenges in care home residents with dementia.

Methods/analysis: 6 care homes within the West Midlands will be recruited. People with dementia receiving medication for behaviour that challenges, or their personal consultee, will be approached regarding participation. Medication used to treat behaviour that challenges will be reviewed by the pharmacist, in collaboration with the general practitioner (GP), person with dementia and carer. The behavioural intervention consists of a training package for care home staff and GPs promoting person-centred care and treating behaviours that challenge as an expression of unmet need. The primary outcome measure is the Neuropsychiatric Inventory-Nursing Home version (NPI-NH). Other outcomes include quality of life (EQ-5D and DEMQoL), cognition (sMMSE), health economic (CSRI) and prescribed medication including whether recommendations were implemented. Outcome data will be collected at 6 weeks, and 3 and 6 months. Pretraining and post-training interviews will explore stakeholders' expectations and experiences of the intervention. Data will be used to estimate the sample size for a definitive study.

Ethics/dissemination: The project has received a favourable opinion from the East Midlands REC (15/EM/3014). If potential participants lack capacity, a personal consultee will be consulted regarding participation in line with the Mental Capacity Act. Results will be published in peer-reviewed journals and presented at conferences.
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http://dx.doi.org/10.1136/bmjopen-2015-010279DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809095PMC
March 2016

Explaining the effects of symptom attribution by carers on help-seeking for individuals living with dementia.

Dementia (London) 2017 Apr 27;16(3):375-387. Epub 2016 Jul 27.

Research Department of Primary Care & Population Health, University College London, UK.

This study investigated the effects of carer attributions on help-seeking behaviour for people with dementia using interviews with 84 carers recruited through general practice. Memory loss was the most commonly reported first symptom but psychological and behavioural symptoms were also common at onset. In over a third of individuals help-seeking was delayed for a mean of 25 months (range 6-69, SD 19.3). Help-seeking between those who attributed symptoms to dementia, or to unknown causes, and those who attributed symptoms to personality, ageing, life events or other illnesses was statistically significant ( p < 0.001). No statistically significant associations between help-seeking and patient or carer characteristics were found. There is a need to raise public awareness about the range of symptoms suggestive of dementia. Assumptions that age and other conditions may be the likely cause of an individual's cognitive decline needs to be challenged by practitioners. Attribution of symptoms to characteristics other than dementia delays help-seeking.
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http://dx.doi.org/10.1177/1471301215593185DOI Listing
April 2017

A study to enhance medical students' professional decision-making, using teaching interventions on common medications.

Med Educ Online 2015 5;20:27097. Epub 2015 Jun 5.

Educational Developer, Centre for Lifelong Learning, University of Liverpool, Liverpool, UK.

Aim: To create sustained improvements in medical students' critical thinking skills through short teaching interventions in pharmacology.

Method: The ability to make professional decisions was assessed by providing year-4 medical students at a UK medical school with a novel medical scenario (antenatal pertussis vaccination). Forty-seven students in the 2012 cohort acted as a pretest group, answering a questionnaire on this novel scenario. To improve professional decision-making skills, 48 students from the 2013 cohort were introduced to three commonly used medications, through tutor-led 40-min teaching interventions, among six small groups using a structured presentation of evidence-based medicine and ethical considerations. Student members then volunteered to peer-teach on a further three medications. After a gap of 8 weeks, this cohort (post-test group) was assessed for professional decision-making skills using the pretest questionnaire, and differences in the 2-year groups analysed.

Results: Students enjoyed presenting on medications to their peers but had difficulty interpreting studies and discussing ethical dimensions; this was improved by contextualising information via patient scenarios. After 8 weeks, most students did not show enhanced clinical curiosity, a desire to understand evidence, or ethical questioning when presented with a novel medical scenario compared to the previous year group who had not had the intervention. Students expressed a high degree of trust in guidelines and expert tutors and felt that responsibility for their own actions lay with these bodies.

Conclusion: Short teaching interventions in pharmacology did not lead to sustained improvements in their critical thinking skills in enhancing professional practice. It appears that students require earlier and more frequent exposure to these skills in their medical training.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4458511PMC
http://dx.doi.org/10.3402/meo.v20.27097DOI Listing
February 2016

A comparison of service use by people with dementia in two samples a decade apart.

Dementia (London) 2017 Jan 27;16(1):96-107. Epub 2016 Jul 27.

University College London, UK.

Investment in improving community-based dementia care is underway in the United Kingdom, but we do not know how well it meets the needs of people with dementia and those who care for them. The aim of this study was to explore the service use and reported unmet needs of people with dementia in two samples recruited a decade apart. We interviewed 122 carers from Central Scotland and London in 2000-2001 and 84 carers from South-East England in 2010-2011 using the same interview schedule. The two samples of carers had similar demographics. The later groups were more likely to be spouses, slightly older, not working, ethnically diverse, have better perceived health and better access to a car. The people with dementia in each sample had similar characteristics and levels of disability. Carers in the later sample reported more met need for activities of daily living, although up to a third were still not getting sufficient help with some activities. Nearly half of both samples reported verbal aggression and nearly a fifth physical aggression, yet most have not received advice on how to manage this. There is a more evident role of the practice nurse ( p = 0.01) and less evident use of community nurses ( p = 0.0005), psychiatric nurses ( p = 0.006) and health visitors ( p = 0.0003) in the more recent sample.
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http://dx.doi.org/10.1177/1471301215581504DOI Listing
January 2017

Diagnosis and management of dementia in family practice.

Aging Ment Health 2016 23;20(4):362-9. Epub 2015 Feb 23.

a Research Department of Primary Care and Population Health , University College London , London , United Kingdom.

Background: Improving quality of care for people with dementia is a high priority. Considerable resources have been invested in financial incentives, guideline development, public awareness and educational programmes to promote earlier diagnosis and better management.

Objectives: Evaluating family physicians' concordance with guidelines on diagnosis and management of people with dementia, from first documentation of symptoms to formal diagnosis.

Method: Analysis of medical records of 136 people with dementia recruited by 19 family practices in NW London and surrounding counties.

Results: Practices invited 763 people with dementia to participate, 167 (22%) agreed. Complete records were available for 136 (18%). The majority of records included reference to recommended blood tests, informant history and caregiver concerns. Presence or absence of symptoms of depression, psychosis, other behavioural and psychological symptoms of dementia, and cognitive function tests were documented in 30%-40% of records. Documentation of discussions about signs and symptoms of dementia, treatment options, care, support, financial, legal and advocacy advice were uncommon. Comparison of these findings from a similar study in 2000-2002 suggests improvements in concordance with blood tests, recording informant history, presence or absence of depression or psychosis symptoms. There was no difference in documenting cognitive function tests. Immediate referral to specialists was more common in the recent study.

Conclusion: Five years after UK dementia guidelines and immediately after the launch of the dementia strategy, family physicians appeared concordant with clinical guidelines for dementia diagnosis (other than cognitive function tests), and referred most patients immediately. However, records did not suggest systematic dementia management.
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http://dx.doi.org/10.1080/13607863.2015.1011082DOI Listing
December 2016

Tailored educational intervention for primary care to improve the management of dementia: the EVIDEM-ED cluster randomized controlled trial.

Trials 2013 Nov 20;14:397. Epub 2013 Nov 20.

Research Department of Primary Care & Population Health, University College London, Royal Free Campus, Rowland Hill Street, London NW3 2PF, UK.

Background: Early diagnosis of dementia is important because this allows those with dementia and their families to engage support and plan ahead. However, dementia remains underdetected and suboptimally managed in general practice. Our objective was to test the effect of a workplace-based tailored educational intervention developed for general practice on the clinical management of people with dementia.

Methods: The tailored educational intervention was tested in an unblinded cluster randomized controlled trial with a pre/post-intervention design, with two arms: usual/normal care control versus educational intervention. The primary outcome measure was an increase in the proportion of patients with dementia who received at least two documented dementia-specific management reviews per year. Case identification was a secondary outcome measure.

Results: 23 practices in South-East England participated. A total of 1,072 patients with dementia (intervention: 512, control: 560) had information in their medical records showing the number of reviews within 12 months (or a proportion of) before intervention or randomization and within 12 months (or a proportion of) after. The mean total number of dementia management reviews after the educational intervention for people with dementia was 0.89 (SD 1.09; minimum 0; median 1; maximum 8) compared with 0.89 (SD 0.92; minimum 0; median 1; maximum 4) before intervention. In the control group prior to randomization the mean total number of dementia management reviews was 1.66 (SD 1.87; minimum 0; median 1; maximum 12) and in the period after randomization it was 1.56 (SD 1.79; minimum 0; median 1; maximum 11). Case detection rates were unaffected. The estimated incidence rate ratio for intervention versus control group was 1.03 (P = 0.927, 95% CI 0.57 to 1.86).

Conclusions: The trial was timely, coinciding with financial incentives for dementia management in general practice (through the Quality Outcomes Framework); legal imperatives (in the form of the Mental Capacity Act 2005); policy pressure (The National Dementia Strategy 2009); and new resources (such as dementia advisors) that increased the salience of dementia for general practitioners. Despite this the intervention did not alter the documentation of clinical management of patients with dementia in volunteer practices, nor did it increase case identification.

Trial Registration: NCT00866099/Clinical Trials.
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http://dx.doi.org/10.1186/1745-6215-14-397DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4222692PMC
November 2013