• Controlling behaviour using neuroleptic drugs: the role of the Mental capacity act 2005 in protecting the liberty of people with dementia

      Boyle, Geraldine (2008)
      The use of neuroleptic drugs to mediate the behaviour of people with dementia living in care homes can lead to them being deprived of their liberty. Whilst regulation has been successful in reducing neuroleptic prescribing in the USA, policy guidance has been unsuccessful in reducing the use of these drugs in the UK. Yet the Mental capacity act 2005 aimed to protect the liberty of people lacking capacity and provided safeguards to ensure that they are not inappropriately deprived of their liberty in institutions. This article highlights the potential for using this law to identify when neuroleptic prescribing in care homes would deprive people with dementia of their liberty and, in turn, to act as a check on prescribing levels. However, the extent to which the Act can promote and protect the right to liberty of people with dementia is constrained by a lack of access to social rights.
    • Conversational assessment in memory clinic encounters: interactional profiling for differentiating dementia from functional memory disorders

      Jones, Danielle K.; Drew, P.; Elsey, C.; Blackburn, D.; Wakefield, S.; Harkness, K.; Reuber, M. (2016)
      Objectives: In the UK dementia is under-diagnosed, there is limited access to specialist memory clinics, and many of the patients referred to such clinics are ultimately found to have functional (non-progressive) memory disorders (FMD), rather than a neurodegenerative disorder. Government initiatives on ‘timely diagnosis’ aim to improve the rate and quality of diagnosis for those with dementia. This study seeks to improve the screening and diagnostic process by analysing communication between clinicians and patients during initial specialist clinic visits. Establishing differential conversational profiles could help the timely differential diagnosis of memory complaints. Method: This study is based on video- and audio recordings of 25 initial consultations between neurologists and patients referred to a UK memory clinic. Conversation analysis was used to explore recurrent communicative practices associated with each diagnostic group. Results: Two discrete conversational profiles began to emerge, to help differentiate between patients with dementia and functional memory complaints, based on (1) whether the patient is able to answer questions about personal information; (2) whether they can display working memory in interaction; (3) whether they are able to respond to compound questions; (4) the time taken to respond to questions; and (5) the level of detail they offer when providing an account of their memory failure experiences. Conclusion: The distinctive conversational profiles observed in patients with functional memory complaints on the one hand and neurodegenerative memory conditions on the other suggest that conversational profiling can support the differential diagnosis of functional and neurodegenerative memory disorders.
    • Coping with challenges to memory in people with mild to moderate Alzheimer's disease: observation of behaviour in response to analogues of everyday situations

      Oyebode, Jan R.; Motala, J.R.; Hardy, R.M.; Oliver, C. (2009)
      OBJECTIVES: To describe ways of coping in people with mild to moderate AD when faced with situations that are challenging to their memory. METHOD: Twenty-four participants (12 with mild and 12 with moderate AD) were presented with a set of seven tasks that were analogues of everyday situations that tax memory. The participants' responses were videotaped and analysed. RESULTS: Participants' coping responses were grouped into seven categories to best reflect the main strategies. Individuals used a significantly greater frequency of effortful problem solving (self-reliance and reliance on carers) (p < 0.01) than other ways of coping. Positive acknowledgement of memory difficulties was used significantly more than negative acknowledgement and defensive coping (concealment and avoidance) (p < 0.01). CONCLUSION: This study used novel methodology of observation of behavioural responses in analogues of everyday situations. The predominance of effortful problem-solving emphasizes the role of the person with AD as an active agent in the management of memory loss. An emphasis in previous literature on defensive coping and denial is counter-balanced by the finding that participants commonly coped by acknowledging their memory impairment.
    • Coping with medical error: a systematic review of papers to assess the effects of involvement in medical errors on healthcare professionals' psychological well-being

      Sirriyeh, R.(See also Harrison, R.); Lawton, R.; Gardner, Peter H.; Armitage, Gerry R. (2010)
      BACKGROUND: Previous research has established health professionals as secondary victims of medical error, with the identification of a range of emotional and psychological repercussions that may occur as a result of involvement in error.2 3 Due to the vast range of emotional and psychological outcomes, research to date has been inconsistent in the variables measured and tools used. Therefore, differing conclusions have been drawn as to the nature of the impact of error on professionals and the subsequent repercussions for their team, patients and healthcare institution. A systematic review was conducted. METHODS: Data sources were identified using database searches, with additional reference and hand searching. Eligibility criteria were applied to all studies identified, resulting in a total of 24 included studies. Quality assessment was conducted with the included studies using a tool that was developed as part of this research, but due to the limited number and diverse nature of studies, no exclusions were made on this basis. RESULTS: Review findings suggest that there is consistent evidence for the widespread impact of medical error on health professionals. Psychological repercussions may include negative states such as shame, self-doubt, anxiety and guilt. Despite much attention devoted to the assessment of negative outcomes, the potential for positive outcomes resulting from error also became apparent, with increased assertiveness, confidence and improved colleague relationships reported. CONCLUSION: It is evident that involvement in a medical error can elicit a significant psychological response from the health professional involved. However, a lack of literature around coping and support, coupled with inconsistencies and weaknesses in methodology, may need be addressed in future work.
    • Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations

      Chatters, R.; Newbould, L.; Sprange, K.; Hind, D.; Mountain, Gail; Shortland, K.; Powell, L.; Gossage-Worrall, R.; Chater, T.; Keetharuth, A.; et al. (2018-02)
      Background: Recruiting isolated older adults to clinical trials is complex, time-consuming and difficult. Previous studies have suggested querying existing databases to identify appropriate potential participants. We aim to compare recruitment techniques (general practitioner (GP) mail-outs, community engagement and clinician referrals) used in three randomised controlled trial (RCT) studies assessing the feasibility or effectiveness of two preventative interventions in isolated older adults (the Lifestyle Matters and Putting Life In Years interventions). Methods: During the three studies (the Lifestyle Matters feasibility study, the Lifestyle Matters RCT, the Putting Life In Years RCT) data were collected about how participants were recruited. The number of letters sent by GP surgeries for each study was recorded. In the Lifestyle Matters RCT, we qualitatively interviewed participants and intervention facilitators at 6 months post randomisation to seek their thoughts on the recruitment process. Results: Referrals were planned to be the main source of recruitment in the Lifestyle Matters feasibility study, but due to a lack of engagement from district nurses, community engagement was the main source of recruitment. District nurse referrals and community engagement were also utilised in the Lifestyle Matters and Putting Life In Years RCTs; both mechanisms yielded few participants. GP mail-outs were the main source of recruitment in both the RCTs, but of those contacted, recruiting yield was low (< 3%). Facilitators of the Lifestyle Matters intervention questioned whether the most appropriate individuals had been recruited. Participants recommended that direct contact with health professionals would be the most beneficial way to recruit. Conclusions: Recruitment to the Lifestyle Matters RCT did not mirror recruitment to the feasibility study of the same intervention. Direct district nurse referrals were not effective at recruiting participants. The majority of participants were recruited via GP mail-outs, which may have led to isolated individuals not being recruited to the trials. Further research is required into alternative recruitment techniques, including respondent-driven sampling plus mechanisms which will promote health care professionals to recruit vulnerable populations to research.
    • Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations

      Webster, L.; Groskreutz, D.; Grinbergs-Saull, A.; Howard, R.; O'Brien, J.T.; Mountain, Gail; Banerjee, S.; Woods, B.; Perneczky, R.; Lafortune, L.; et al. (2017-06-29)
      There are no disease-modifying treatments for dementia. There is also no consensus on disease modifying outcomes. We aimed to produce the first evidence-based consensus on core outcome measures for trials of disease modification in mild-to-moderate dementia. We defined disease-modification interventions as those aiming to change the underlying pathology. We systematically searched electronic databases and previous systematic reviews for published and ongoing trials of disease-modifying treatments in mild-to-moderate dementia. We included 149/22,918 of the references found; with 81 outcome measures from 125 trials. Trials involved participants with Alzheimer's disease (AD) alone (n = 111), or AD and mild cognitive impairment (n = 8) and three vascular dementia. We divided outcomes by the domain measured (cognition, activities of daily living, biological markers, neuropsychiatric symptoms, quality of life, global). We calculated the number of trials and of participants using each outcome. We detailed psychometric properties of each outcome. We sought the views of people living with dementia and family carers in three cities through Alzheimer's society focus groups. Attendees at a consensus conference (experts in dementia research, disease-modification and harmonisation measures) decided on the core set of outcomes using these results. Recommended core outcomes were cognition as the fundamental deficit in dementia and to indicate disease modification, serial structural MRIs. Cognition should be measured by Mini Mental State Examination or Alzheimer's Disease Assessment Scale-Cognitive Subscale. MRIs would be optional for patients. We also made recommendations for measuring important, but non-core domains which may not change despite disease modification. Most trials were about AD. Specific instruments may be superseded. We searched one database for psychometric properties. This is the first review to identify the 81 outcome measures the research community uses for disease-modifying trials in mild-to-moderate dementia. Our recommendations will facilitate designing, comparing and meta-analysing disease modification trials in mild-to-moderate dementia, increasing their value.
    • A Core Outcome Set For Disease Modification Trials In Mild-To-Moderate Dementia: A Systematic Review And Consensus Recommendations

      Webster, L.; Groskreutz, D.; Grinbergs-Saull, A.; Howard, R.; O'Brien, J.T.; Mountain, Gail; Banerjee, S.; Woods, B.; Perneczky, R.; Lafortune, L.; et al. (2017)
    • A core outcome set for nonpharmacological community-based interventions for people living with dementia at home: A systematic review of outcome measurement instruments

      Harding, A.J.E.; Morbey, H.; Ahmed, F.; Opdebeeck, C.; Elvish, R.; Leroi, I.; Williamson, P.R.; Keady, J.; Reilly, Siobhan T. (2021-12)
      It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders' value. We attained consensus from over 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured. We extracted self-reported OMIs from trials, reviews and reports of instrument development. Searches were undertaken in the ALOIS database, Medline, PsycINFO, CINAHL, socINDEX and COSMIN database. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency and responsiveness. We held a co-research workshop involving people living with dementia and care partners in order to ratify the findings. In total 347 OMIs were located from 354 sources. Of these 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the COS items, and no OMIs proceeded to further assessment. The 'best' available OMI is the Engagement and Independence in Dementia Questionnaire (EID-Q). This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons.
    • COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey

      Giebel, C.; Pulford, D.; Cooper, C.; Lord, Kathryn; Shenton, J.; Cannon, J.; Shaw, L.; Tetlow, H.; Limbert, S.; Callaghan, S.; et al. (2021-01-04)
      Background: The COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well- being. Aims: To explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak. Methods: Unpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being. Results: 377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3. Conclusions: Access to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic.
    • Critical Management

      Lawler, John A. (2013)
    • Critical Success Factors in the Implementation of Positive Action in the NHS UK.

      Baxter, C.; Archibong, Uduak E.; Giga, Sabir I.; Kular, R. (2008)
    • Critical values for Lawshe's content validity ratio: revisiting the original methods of calculation

      Ayre, Colin A.; Scally, Andy J. (2014-01)
      The content validity ratio originally proposed by Lawshe is widely used to quantify content validity and yet methods used to calculate the original critical values were never reported. Methods for original calculation of critical values are suggested along with tables of exact binomial probabilities.
    • Cross-cultural comparison of the perceptions and experiences of dementia care mapping "mappers" in the United States and the United Kingdom

      Douglass, C.; Keddie, A.; Brooker, Dawn J.R.; Surr, Claire A. (2010)
      OBJECTIVE: Survey results from 161 respondents trained in dementia care mapping (DCM) in the United States and United Kingdom (82 and 79 respondents, respectively) addressed the following: (a) To what extent are mappers using DCM? (b) How satisfied are mappers with DCM? (c) What affect does DCM have on mappers' attitudes toward their dementia practice? and (d) What challenges are encountered by mappers in the use of DCM? METHOD: Analyses using odds ratios were used to make international and training-level (basic vs. advanced) comparisons. RESULTS: Differences across countries were found in use of DCM and lack of satisfaction using DCM codes. Similarities were found with positive affects of DCM on attitudes and lack of time for DCM. DISCUSSION: Differences in mappers' experiences and perceptions exist across the two countries, warranting increased attention to the cultural contexts within which mappers are situated and how these affect the implementation of DCM within a country.
    • Cultural and economic differences in television viewing in early childhood.

      Nagy, Liana C.; Horne, Maria; Bingham, D.D.; Kelly, B.; Clemes, S.; Mohammed, Mohammed A.; Barber, Sally E. (2015-06)
      Aim of research: to describe TV viewing trajectories from age 5 to 40 months
    • Cultural influences on simulation training as an educational innovation among health care professionals

      McClelland, Gabrielle T.; Horne, Maria; Dearnley, Christine A.; Irving, Donna; O'Donnell, Peter; Hoswell, A. (2015)
      Aims and specific learning outcomes To examine cultural influences on the adoption of simulation as an educational innovation among health care professionals. Background/ rationale Whilst there has been an increase in research supporting simulation based education and training, there is a notable lack of evidence examining the relationship between culture and simulation, and factors influencing adoption and diffusion of this innovation, Fors (2009), Chung (2013). If cultural factors influence simulation adoption, either as an enabler or a barrier, they are worthy of examination. This literature review aims to examine these important dimensions., Methodology The literature review is being undertaken systematically based on techniques described by Booth et al, (2012).Study selection will be undertaken using the following inclusion criteria: Population: Students and health practitioners engaged in medicine, nursing, midwifery and allied health professional practice, participating in simulations. Intervention: Simulation training and education; relating to: learning, teaching and assessment in clinical practice and in learning environment, technological and non- technological. Outcome: Cultural factors-enable/hinder, voluntary and involuntary uptake or rejection of simulations. Practitioners value/do not value simulations. Study: International research papers, published in English, from 2010 to 2014. Data synthesis Data synthesis will be undertaken using Thematic Synthesis (Thomas, Harden, 2008). Results - To be developed following data synthesis. Conclusions/ recommendations/ take home messages -To be developed following data synthesis
    • Culture and communication in ethically appropriate care

      Meddings, Fiona S.; Haith-Cooper, Melanie (2008)
      This article considers the difficulties with using Gillon's model for health care ethics in the context of clinical practice. Everyday difficulties can arise when caring for people from different ethnic and cultural backgrounds, especially when they speak little or no English. A case is presented that establishes, owing to language and cultural barriers, that midwives may have difficulty in providing ethically appropriate care to women of Pakistani Muslim origin in the UK. The use of interpreters is discussed; however, there are limitations and counter arguments to their use. Training is identified as needed to prepare service providers and midwives for meeting the needs of a culturally diverse maternity population.
    • Current social trends and challenges for the dying person

      Kellehear, Allan (2017)
      Buried deep inside the debates on how we should die - with or without palliative care or euthanasia -and where we should die - in hospitals, nursing homes, hospices or in our own homes—lie two strange and persistent facts. Few people understand the dominant ways we die and the challenges most people face because of those types of dying. Many of the social science monographs and health policy debates focus on cancer dying or dying in total institutions. Yet cancer is only one disease that kills, and many people live out their dying with several fatal illnesses. Though many people become dead in total institutions, the longer part of living-while-dying is outside of custodial care. Between a popular media fed with mere clinical insights about dying and a social science tradition of investigations that have taken almost their every lead from health care institutions, major myths and biases do grow. And basic insights from history, cultural sociology and epidemiology continue to be overlooked. This chapter seeks to redress these oversights by describing the key social trends, and the personal challenges thrown up by them, for today’s dying populations. Any basic sociology of dying needs to grapple with these trends because they are the meeting places between recent history and identity for today’s dying person. I describe seven major social trends that are key determinants of the cur- rent social experience of dying. These are: (1) the complicated nature of dying trajectories; (2) the seduction of medical rescue as a broad cultural value; (3) the myth of institutionalization; (4) the social manufacture of horror for con- temporary images of dying; (5) the rise of single-person households; (6) the paradoxical trend towards promoting dying for resource-poor countries while promoting sudden death in resource-wealthy ones; (7) and the current inability to address the problem of destination for a fundamental life-course rite of passage such as death and dying.