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

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

Accreditation of The Hydrographic Surveying Course at UCL and The PLA

In September 1999, the Department of Geomatic Engineering at University College London (UCL) introduced a new MSc in Hydrographic Surveying, in partnership with the Port of London Authority (PLA). In May 2001 this degree programme was approved by the courses board of the International Hydrographic Organisation and the International Federation of Surveyors as a Category A course. The aim of this article is to explain the background to the partnership between UCL and the PLA, and to describe how the course has been designed to meet the IHO/FIG criteria

‘It’s a real fine balancing act’: Directly employed care workers’ experiences of engaging with health services

Little is known of the experiences of directly employed care workers communicating with healthcare providers about the situations of their employers. We report findings from 30 in-depth semi-structured interviews with directly employed care workers in England undertaken in 2018–19. Findings relate to role content, communication with healthcare professionals and their own well-being. Directly employed care workers need to be flexible about the tasks they perform and the changing needs of those whom they support. Having to take on health liaison roles can be problematic, and the impact of care work on directly employed workers’ own health and well-being needs further investigation

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

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

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

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

Effective health care for older people resident in care homes: the optimal study protocol for realist review

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Background: Care homes in the UK rely on general practice for access to specialist medical and nursing care as well as referral to therapists and secondary care. Service delivery to care homes is highly variable in both quantity and quality. This variability is also evident in the commissioning and organisation of care home-specific services that range from the payment of incentives to general practitioners (GPs) to visit care homes, to the creation of care home specialist teams and outreach services run by geriatricians. No primary studies or systematic reviews have robustly evaluated the impact of these different approaches on organisation and resident-level outcomes. Our aim is to identify factors which may explain the perceived or demonstrated effectiveness of programmes to improve health-related outcomes in older people living in care homes. Methods/Design: A realist review approach will be used to develop a theoretical understanding of what works when, why and in what circumstances. Elements of service models of interest include those that focus on assessment and management of residents’ health, those that use strategies to encourage closer working between visiting health care providers and care home staff, and those that address system-wide issues about access to assessment and treatment. These will include studies on continence, dignity, and speech and language assessment as well as interventions to promote person centred dementia care, improve strength and mobility, and nutrition. The impact of these interventions and their different mechanisms will be considered in relation to five key outcomes: residents’ medication use, use of out of hours’ services, hospital admissions (including use of Accident and Emergency) and length of hospital stay, costs and user satisfaction. An iterative three-stage approach will be undertaken that is stakeholder-driven and optimises the knowledge and networks of the research team. Discussion: This realist review will explore why and for whom different approaches to providing health care to residents in care homes improves access to health care in the five areas of interest. It will inform commissioning decisions and be the basis for further research. This systematic review protocol is registered on the PROSPERO database reference number: CRD42014009112NIHR Health Services & Delivery Research Programme. Project number 11/1021/0

Rapid appraisal of barriers to the diagnosis and management of patients with dementia in primary care: a systematic review

<p>Abstract</p> <p>Background</p> <p>The diagnosis of dementia in primary care is perceived as a problem across countries and systems, resulting in delayed recognition and adverse outcomes for patients and their carers. Improving its early detection is an area identified for development in the English National Dementia Strategy 2009; there are thought to be multiple benefits to the patient, family, and resources by doing this. The aim of this review was to carry out a rapid appraisal in order to inform the implementation of this policy.</p> <p>Method</p> <p>Publications in English up to August 2009 relating to barriers to the recognition of dementia, were identified by a broad search strategy, using electronic databases MEDLINE, EMBASE, and psycINFO. Exclusion criteria included non-English language, studies about pharmacological interventions or screening instruments, and settings without primary care.</p> <p>Results</p> <p>Eleven empirical studies were found: 3 quantitative, 6 qualitative, and 2 with mixed methodologies. The main themes from the qualitative studies were found to be lack of support, time constraints, financial constraints, stigma, diagnostic uncertainty, and disclosing the diagnosis. Quantitative studies yielded diverse results about knowledge, service support, time constraints, and confidence. The factors identified in qualitative and quantitative studies were grouped into 3 categories: patient factors, GP factors and system characteristics.</p> <p>Conclusion</p> <p>Much can still be done in the way of service development and provision, GP training and education, and the eradication of stigma attached to dementia, to improve the early detection and management of dementia. Implementation of dementia strategies should include attention to all three categories of barriers. Further research should focus on their interaction, using different methods from studies to date.</p

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

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