ORCID Profile
0000-0001-8929-7362
Current Organisations
Barnet Enfield and Haringey Mental Health NHS Trust
,
University College London
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Publisher: SAGE Publications
Date: 29-06-2009
Abstract: Although two thirds of people with dementia live in the community, a recent report from the Alzheimer's Society concluded that current health and social care systems are failing to support people with dementia and their families to continue to live at home, despite the fact that family carers of people with dementia save the UK over £10 million a year (Alzheimer's Society, 2007). If there are few ex les of innovative care packages within dementia care, research evaluating such new approaches is even more limited (Robinson et al., 2005 S son et al., 2006). This section of the Dementia journal contains some ex les of projects which have the potential to improve end of life care for people with dementia and their families.
Publisher: John Wiley & Sons, Ltd
Date: 06-02-2015
Publisher: SAGE Publications
Date: 20-01-2017
Abstract: The British Association for Psychopharmacology coordinated a meeting of experts to review and revise its previous 2011 guidelines for clinical practice with anti-dementia drugs. As before, levels of evidence were rated using accepted standards which were then translated into grades of recommendation A-D, with A having the strongest evidence base (from randomised controlled trials) and D the weakest (case studies or expert opinion). Current clinical diagnostic criteria for dementia have sufficient accuracy to be applied in clinical practice (B) and both structural (computed tomography and magnetic resonance imaging) and functional (positron emission tomography and single photon emission computerised tomography) brain imaging can improve diagnostic accuracy in particular situations (B). Cholinesterase inhibitors (donepezil, rivastigmine, and galantamine) are effective for cognition in mild to moderate Alzheimer's disease (A), memantine for moderate to severe Alzheimer's disease (A) and combination therapy (cholinesterase inhibitors and memantine) may be beneficial (B). Drugs should not be stopped just because dementia severity increases (A). Until further evidence is available other drugs, including statins, anti-inflammatory drugs, vitamin E, nutritional supplements and Ginkgo biloba, cannot be recommended either for the treatment or prevention of Alzheimer's disease (A). Neither cholinesterase inhibitors nor memantine are effective in those with mild cognitive impairment (A). Cholinesterase inhibitors are not effective in frontotemporal dementia and may cause agitation (A), though selective serotonin reuptake inhibitors may help behavioural (but not cognitive) features (B). Cholinesterase inhibitors should be used for the treatment of people with Lewy body dementias (both Parkinson's disease dementia and dementia with Lewy bodies), and memantine may be helpful (A). No drugs are clearly effective in vascular dementia, though cholinesterase inhibitors are beneficial in mixed dementia (B). Early evidence suggests multifactorial interventions may have potential to prevent or delay the onset of dementia (B). Though the consensus statement focuses on medication, psychological interventions can be effective in addition to pharmacotherapy, both for cognitive and non-cognitive symptoms. Many novel pharmacological approaches involving strategies to reduce amyloid and/or tau deposition in those with or at high risk of Alzheimer's disease are in progress. Though results of pivotal studies in early (prodromal/mild) Alzheimer's disease are awaited, results to date in more established (mild to moderate) Alzheimer's disease have been equivocal and no disease modifying agents are either licensed or can be currently recommended for clinical use.
Publisher: National Institute for Health and Care Research
Date: 02-2021
DOI: 10.3310/PGFAR09020
Abstract: An unplanned hospital admission of a nursing home resident distresses the person, their family and nursing home staff, and is costly to the NHS. Improving health care in care homes, including early detection of residents’ health changes, may reduce hospital admissions. Previously, we identified four conditions associated with avoidable hospital admissions. We noted promising ‘within-home’ complex interventions including care pathways, knowledge and skills enhancement, and implementation support. Develop a complex intervention with implementation support [the Better Health in Residents in Care Homes with Nursing (BHiRCH-NH)] to improve early detection, assessment and treatment for the four conditions. Determine its impact on hospital admissions, test study procedures and acceptability of the intervention and implementation support, and indicate if a definitive trial was warranted. A Carer Reference Panel advised on the intervention, implementation support and study documentation, and engaged in data analysis and interpretation. In workstream 1, we developed a complex intervention to reduce rates of hospitalisation from nursing homes using mixed methods, including a rapid research review, semistructured interviews and consensus workshops. The complex intervention comprised care pathways, approaches to enhance staff knowledge and skills, implementation support and clarity regarding the role of family carers. In workstream 2, we tested the complex intervention and implementation support via two work packages. In work package 1, we conducted a feasibility study of the intervention, implementation support and study procedures in two nursing homes and refined the complex intervention to comprise the Stop and Watch Early Warning Tool (S& W), condition-specific care pathways and a structured framework for nurses to communicate with primary care. The final implementation support included identifying two Practice Development Ch ions (PDCs) in each intervention home, and supporting them with a training workshop, practice development support group, monthly coaching calls, handbooks and web-based resources. In work package 2, we undertook a cluster randomised controlled trial to pilot test the complex intervention for acceptability and a preliminary estimate of effect. Fourteen nursing homes allocated to intervention and implementation support ( n = 7) or treatment as usual ( n = 7). We recruited sufficient numbers of nursing homes ( n = 14), staff ( n = 148), family carers ( n = 95) and residents ( n = 245). Two nursing homes withdrew prior to the intervention starting. This ran from February to July 2018. In idual-level data on nursing home residents, their family carers and staff system-level data using nursing home records and process-level data comprising how the intervention was implemented. Data were collected on recruitment rates, consent and the numbers of family carers who wished to be involved in the residents’ care. Completeness of outcome measures and data collection and the return rate of questionnaires were assessed. The pilot trial showed no effects on hospitalisations or secondary outcomes. No home implemented the intervention tools as expected. Most staff endorsed the importance of early detection, assessment and treatment. Many reported that they ‘were already doing it’, using an early-warning tool a detailed nursing assessment or the situation, background, assessment, recommendation communication protocol. Three homes never used the S& W and four never used care pathways. Only 16 S& W forms and eight care pathways were completed. Care records revealed little use of the intervention principles. PDCs from five of six intervention homes attended the training workshop, following which they had variable engagement with implementation support. Progression criteria regarding recruitment and data collection were met: 70% of homes were retained, the proportion of missing data was 20% and 80% of in idual-level data were collected. Necessary rates of data collection, documentation completion and return over the 6-month study period were achieved. However, intervention tools were not fully adopted, suggesting they would not be sustainable outside the trial. Few hospitalisations for the four conditions suggest it an unsuitable primary outcome measure. Key cost components were estimated. The study homes may already have had effective approaches to early detection, assessment and treatment for acute health changes consistent with government policy emphasising the need for enhanced health care in homes. Alternatively, the implementation support may not have been sufficiently potent. A definitive trial is feasible, but the intervention is unlikely to be effective. Participant recruitment, retention, data collection and engagement with family carers can guide subsequent studies, including service evaluation and quality improvement methodologies. Intervention research should be conducted in homes which need to enhance early detection, assessment and treatment. Interventions to reduce avoidable hospital admissions may be beneficial in residential care homes, as they are not required to employ nurses. Current Controlled Trials ISRCTN74109734 and ISRCTN86811077. This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research Vol. 9, No. 2. See the NIHR Journals Library website for further project information.
Publisher: BMJ
Date: 09-2016
Publisher: BMJ
Date: 14-10-2016
DOI: 10.1136/BMJSPCARE-2016-001138
Abstract: People living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and ex les of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care. An online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics. 15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision. Recent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, ‘Hospice-enabled Dementia Care’.
Publisher: BMJ
Date: 2012
Publisher: Oxford University Press (OUP)
Date: 09-2023
Publisher: SAGE Publications
Date: 09-09-2015
Abstract: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. A total of 29 statements were agreed and mapped to in idual, group, organisational and economic olitical levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.
Publisher: Cold Spring Harbor Laboratory
Date: 22-01-2018
DOI: 10.1101/251272
Abstract: Delirium increases the risk of mortality during an acute hospital admission. Full syndromal delirium (FSD) is associated with greatest risk and subsyndromal delirium (SSD) is associated with intermediate risk, compared to patients with no delirium - suggesting a dose-response relationship. It is not clear how in idual diagnostic symptoms of delirium influence the association with mortality. Our objectives were to measure the prevalence of FSD and SSD, and assess the effect that FSD, SSD and in idual symptoms of delirium (from the Confusion Assessment Method-short version (s-CAM)) have on mortality rates. Exploratory analysis of a prospective cohort (aged ≥ 70 years) with acute (unplanned) medical admission (4/6/2007-4/11/2007). The outcome was mortality (data censored 6/10/2011). The principal exposures were FSD and SSD compared to no delirium (as measured by the CAM), along with in idual delirium symptoms on the CAM. Cox regression was used to estimate the impact FSD and SSD and in idual CAM items had on mortality. The cohort (n=610) mean age was 83 (SD 7) 59% were female. On admission, 11% had FSD and 33% had SSD. Of the key diagnostic symptoms for delirium, 17% acute onset, 19% inattention, 17% disorganised thinking and 17% altered level of consciousness. Unadjusted analysis found FSD had an increased hazard ratio (HR) of 2.31 (95%CI 1.71, 3.12), for SSD the HR was 1.26 (1.00, 1.59). Adjusted analysis remained significant for FSD (1.55 95%CI 1.10, 2.18) but nonsignificant for SSD (HR=0.92 95% CI 0.70, 1.19). Two CAM items were significantly associated with mortality following adjustment: acute onset and disorganised thinking. We observed a dose-response relationship between mortality and delirium, FSD had the greatest risk and SSD having intermediate risk. The CAM items “acute onset” and “disorganised thinking” drove the associations observed. Clinically, this highlights the necessity of identifying in idual symptoms of delirium.
Publisher: Public Library of Science (PLoS)
Date: 23-10-2019
Publisher: John Wiley & Sons, Ltd
Date: 16-07-2008
Publisher: Springer Science and Business Media LLC
Date: 09-01-2020
DOI: 10.1007/S41999-019-00281-2
Abstract: Pain and delirium are common problems for older people. Both conditions are prevalent in acute hospital settings. In people living in the community, delirium often precipitates presentation to the emergency department. Pain and delirium are known to interact in a complex and multidirectional way. This can make it challenging for staff to recognize and treat pain in people with delirium. This paper aims to explore the complex relationship between pain and delirium and on pain assessment in delirium, drawing together evidence from a range of settings including acute medical, cardiac and orthopaedic post-operative cohorts, as well as from aged care. A limited number of studies suggest there is an association between pain and delirium however, this is a complex, particularly where analgesics which may-themselves cause delirium are prescribed. Factors acting on the pathway between pain and delirium may include depression, sleep deprivation and disturbance of the cholinergic system. Delirium affects the ability to self-report pain. The fluctuating nature of delirium as well as reduced awareness and attention may challenge practitioners in recognizing, assessing and treating pain. Evidence concerning the reliability and validity of current observational and self-assessment tools in people with delirium is unclear but some show promise in this population. The current evidence base regarding assessing pain in people with delirium is lacking. Tentative recommendations, drawing on current guidelines require robust testing. Guidelines for people with pain and dementia require adaptations regarding the unique characteristics of delirium. The complex interplay between dementia, pain and delirium warrants further investigation across a range of settings.
Publisher: Cambridge University Press
Date: 24-01-2008
Publisher: Springer Science and Business Media LLC
Date: 10-03-2016
Publisher: Oxford University Press (OUP)
Date: 29-12-2016
DOI: 10.1093/PM/PNW281
Abstract: Pain assessment in people with advanced dementia relies strongly on observable pain behaviors, such as facial expressions, body movement, and vocalizations. However, the process of inferring pain in others based on such observations is not well understood. We aimed to investigate which features of facial expressions caregivers rely on when inferring the presence and intensity of pain in people with dementia. A questionnaire, including items on 13 facial descriptors, which were extracted from established observational scales for pain in dementia, was sent to 366 nursing homes in Germany. We asked the nurses to observe patients with dementia and then rate their observations using the facial descriptors, as well as to provide an overall pain estimate of the residents' pain. We used regression analyses to identify which facial descriptors nurses use most commonly to infer whether a person with dementia is in pain and to grade the pain's intensity. Seventy-nine nursing homes participated (22% response rate), and a total of 284 completed observer ratings were returned. The observed in iduals suffered from moderate to severe dementia and were observed in everyday care situations. The average pain estimated by the caregivers was slight to moderate. Mainly anatomically based descriptors ("frowning," "narrowed eyes") and indicators of emotional arousal ("looking tense," looking frightened") significantly predicted the overall pain ratings by nurses, explaining approximately 45% of the variance. Although all presented facial descriptors were used by the nurses, some descriptors were used clearly more frequently than others to infer whether a resident with dementia was in pain. Development of observational pain tools and training in their use should consider the preexisting assumptions that nurses use to infer pain as well as their potential bias.
Publisher: Wiley
Date: 07-2011
Publisher: Springer Science and Business Media LLC
Date: 12-2020
DOI: 10.1186/S12877-020-01931-Y
Abstract: This systematic review aimed to explore the process of decision-making for nutrition and hydration for people living with dementia from the perspectives and experiences of all involved. We searched CINAHL, the Cochrane Library, EMBASE, MEDLINE and PsycINFO databases. Search terms were related to dementia, decision-making, nutrition and hydration. Qualitative, quantitative and case studies that focused on decision-making about nutrition and hydration for people living with dementia were included. The CASP and Murad tools were used to appraise the quality of included studies. Data extraction was guided by the Interprofessional Shared Decision Making (IP-SDM) model. We conducted a narrative synthesis using thematic analysis. PROSPERO registration number CRD42019131497. Forty-five studies were included (20 qualitative, 15 quantitative and 10 case studies), comprising data from 17 countries and 6020 patients, family caregivers and practitioners. The studies covered a range of decisions from managing oral feeding to the use of tube feeding. We found that decisions about nutrition and hydration for people living with dementia were generally too complex to be mapped onto the precise linear steps of the existing decision-making model. Decision-making processes around feeding for people living with dementia were largely influenced by medical evidence, personal values, cultures and organizational routine. Although the process involved multiple people, family caregivers and non-physician practitioners were often excluded in making a final decision. Upon disagreement, nutrition interventions were sometimes delivered with conflicting feelings concealed by family caregivers or practitioners. Most conflicts and negative feelings were resolved by good relationship, honest communication, multidisciplinary team meetings and renegotiation. The decision-making process regarding nutrition and hydration for people living with dementia does not follow a linear process. It needs an informed, value-sensitive, and collaborative process. However, it often characterized by unclear procedures and with a lack of support. Decisional support is needed and should be approached in a shared and stepwise manner.
Publisher: Oxford University Press (OUP)
Date: 18-01-2013
Publisher: Mary Ann Liebert Inc
Date: 05-2014
Publisher: National Institute for Health and Care Research
Date: 09-2020
DOI: 10.3310/PGFAR08080
Abstract: In the UK, most people with dementia die in the community and they often receive poorer end-of-life care than people with cancer. The overall aim of this programme was to support professionals to deliver good-quality, community-based care towards, and at, the end of life for people living with dementia and their families. The Supporting Excellence in End-of-life care in Dementia (SEED) programme comprised six interlinked workstreams. Workstream 1 examined existing guidance and outcome measures using systematic reviews, identified good practice through a national e-survey and explored outcomes of end-of-life care valued by people with dementia and family carers ( n = 57) using a Q-sort study. Workstream 2 explored good-quality end-of-life care in dementia from the perspectives of a range of stakeholders using qualitative methods (119 interviews, 12 focus groups and 256 observation hours). Using data from workstreams 1 and 2, workstream 3 used co-design methods with key stakeholders to develop the SEED intervention. Worksteam 4 was a pilot study of the SEED intervention with an embedded process evaluation. Using a cluster design, we assessed the feasibility and acceptability of recruitment and retention, outcome measures and our intervention. Four general practices were recruited in North East England: two were allocated to the intervention and two provided usual care. Patient recruitment was via general practitioner dementia registers. Outcome data were collected at baseline, 4, 8 and 12 months. Workstream 5 involved economic modelling studies that assessed the potential value of the SEED intervention using a contingent valuation survey of the general public ( n = 1002). These data informed an economic decision model to explore how the SEED intervention might influence care. Results of the model were presented in terms of the costs and consequences (e.g. hospitalisations) and, using the contingent valuation data, a cost–benefit analysis. Workstream 6 examined commissioning of end-of-life care in dementia through a narrative review of policy and practice literature, combined with indepth interviews with a national s le of service commissioners ( n = 20). The workstream 1 survey and workstream 2 included services throughout England. The workstream 1 Q-sort study and workstream 4 pilot trial took place in North East England. For workstream 4, four general practices were recruited two received the intervention and two provided usual care. Currently, dementia care and end-of-life care are commissioned separately, with commissioners receiving little formal guidance and training. Ex les of good practice rely on non-recurrent funding and leadership from an interested clinician. Seven key components are required for good end-of-life care in dementia: timely planning discussions, recognising end of life and providing supportive care, co-ordinating care, effective working with primary care, managing hospitalisation, continuing care after death, and valuing staff and ongoing learning. Using co-design methods and the theory of change, the seven components were operationalised as a primary care-based, dementia nurse specialist intervention, with a care resource kit to help the dementia nurse specialist improve the knowledge of family and professional carers. The SEED intervention proved feasible and acceptable to all stakeholders, and being located in the general practice was considered beneficial. None of the outcome measures was suitable as the primary outcome for a future trial. The contingent valuation showed that the SEED intervention was valued, with a wider package of care valued more than selected features in isolation. The SEED intervention is unlikely to reduce costs, but this may be offset by the value placed on the SEED intervention by the general public. The biggest challenge to the successful delivery and completion of this research programme was translating the ‘theoretical’ complex intervention into practice in an ever-changing policy and service landscape at national and local levels. A major limitation for a future trial is the lack of a valid and relevant primary outcome measure to evaluate the effectiveness of a complex intervention that influences outcomes for both in iduals and systems. Although the dementia nurse specialist intervention was acceptable, feasible and integrated well with existing care, it is unlikely to reduce costs of care however, it was highly valued by all stakeholders (professionals, people with dementia and their families) and has the potential to influence outcomes at both an in idual and a systems level. There is no plan to progress to a full randomised controlled trial of the SEED intervention in its current form. In view of new National Institute for Health and Care Excellence dementia guidance, which now recommends a care co-ordinator for all people with dementia, the feasibility of providing the SEED intervention throughout the illness trajectory should be explored. Appropriate outcome measures to evaluate the effectiveness of such a complex intervention are needed urgently. Current Controlled Trials ISRCTN21390601. This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research , Vol. 8, No. 8. See the NIHR Journals Library website for further project information.
Publisher: Springer Science and Business Media LLC
Date: 29-10-2015
Publisher: Oxford University Press (OUP)
Date: 12-09-2020
Abstract: The number of people aged 65 years or older is growing substantially. As a result of increased health burden and tooth retention, more oral health problems are expected in this age group. A poor oral health-related quality of life (OHQoL) can compromise a person’s psychological state, social relationships, personal beliefs, and physical health. The aim of this systematic review was to identify oral health factors associated with OHQoL in people aged 65 years or older and to give a comprehensive overview of the body of literature for each oral health factor separately. A comprehensive search was performed in five databases. The following terms were used as index terms or free-text words: “Oral Health,” “Quality of Life,” “Older People.” Two researchers independently assessed studies for eligibility based on predefined criteria. Of 3,702 references retrieved from the databases, 68 studies were eligible and included (9 randomized clinical trials, 6 cohort studies, and 53 cross-sectional studies). All results were reported descriptively. OHQoL in people aged 65 years or older is positively associated with higher number of teeth, higher number of occluding pairs, implant-retained overdentures, and the shortened dental arch concept and negatively associated with xerostomia, orofacial pain, and poor chewing ability. In the current literature, there is no consensus on the association between edentulism, caries, and periodontal conditions and OHQoL. Having a functional dentition (either natural or prosthetic) is important for a good OHQoL, whereas painful or functional complaints are associated with impaired OHQoL.
Publisher: Wiley
Date: 03-2023
DOI: 10.1002/GPS.5867
Abstract: Many family carers of a person with dementia experience pre‐death grief. We aimed to identify strategies that help carers manage pre‐death grief. We hypothesised that emotion and problem focussed styles would be associated with lower, and dysfunctional coping with higher grief intensity. Mixed methods observational study using structured and semi‐structured interviews with 150 family carers of people with dementia living at home or in a care home. Most participants were female (77%), caring for a parent (48%) or partner/spouse (47%) with mild (25%), moderate (43%) or severe (32%) dementia. They completed the Marwit‐Meuser Caregiver Grief Inventory Short Form and the Brief Coping Orientation to Problems Experienced (Brief‐COPE) questionnaire. We asked carers to identify strategies used for managing grief. We recorded field notes for 150 interviews and audio‐recorded additional interviews with a sub‐s le of 16 participants. Correlations indicated that emotion‐oriented coping was associated with lower grief ( R = −0.341), and dysfunctional coping with higher grief ( R = 0.435), with a small association with problem‐focused strategies ( R = −0.109), partly supporting our hypothesis. Our qualitative themes broadly match the three Brief‐COPE styles. Unhelpful strategies of denial and avoidance align with dysfunctional coping strategies. Psychological strategies (including acceptance and humour) and seeking support were consistent with emotion‐focused strategies, but we did not identify a theme relating to problem‐focused strategies. Most carers identified multiple strategies for processing grief. Carers could readily identify supports and services that they found helpful for managing pre‐death grief, yet current services appear under‐resourced to meet growing demand. ( ClinicalTrials.gov ID: NCT03332979).
Publisher: Oxford University Press (OUP)
Date: 05-2014
DOI: 10.1111/PME.12336
Abstract: It has been documented that pain in people with dementia is often under-reported and poorly detected. The reasons for this are not clearly defined. This project aimed to explore semantic concepts of pain in people with dementia and whether this is associated with clinical pain report. Cohort study with nested cross-sectional analysis. Acute general hospital medical wards for older people. People with dementia (N = 26) and control participants (N = 13). Two subtests of semantic memory for pain: (1) Identifying painful situations from a standardized range of pictures (2) Describing the concept of pain. Participants also indicated whether they were in pain or not, were observed for pain (PAINAD scale) and completed the Wong-Baker FACES scale to indicate pain severity. Compared with the control group, people with dementia were less able to identify painful situations and used fewer categories to define their concept of pain. In turn, the performance on these two measures was related to the reported presence and, albeit less strongly, to the reported severity of pain, indicating that a reduction in semantic memory for pain is associated with a decline in reported pain. This study is the first to show that semantic memory for pain is diminished in dementia patients. When using clinical pain tools, clinicians should consider these effects which may bias clinical pain ratings when they evaluate and manage pain in these patients. This might improve the recognition and management of pain in people with dementia.
Publisher: Elsevier BV
Date: 12-2017
Publisher: SAGE Publications
Date: 12-01-2011
Abstract: Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer–patient dyads were randomized to ‘usual care’ or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced stages of dementia: 62% had pressure damage to the skin, all needed feeding assistance and 95% were in pain. Nearly 50% died during the six-month follow-up period. Carers were difficult to recruit during acute admission 33 patients and carers entered the study (22 intervention arm 11 control arm). Only seven carers made ACPs. The care planning discussion was well received, but few carers wrote an ACP, despite intensive support from an experienced nurse specialist. Advance care planning is, in theory, a necessary intervention for people with severe dementia the reluctance of carers to write plans needs to be explored further.
Publisher: Oxford University Press (OUP)
Date: 11-2022
Abstract: When a person with severe dementia is in hospital and has eating and drinking difficulties, communication between the multidisciplinary team and families can be challenging and lead to suboptimal care. To gain in-depth understanding about the experiences, views and needs of family carers and hospital staff, regarding communication and conversations about nutrition and hydration, for hospital patients with severe dementia. Qualitative semi-structured interview study. Acute hospital in England. From January to May 2021, semi-structured interviews were conducted with 29 family carers and hospital staff. Interviews were transcribed verbatim and analysed using reflexive thematic methods. Four overarching themes were developed: (i) prerequisites to initiating communication about eating and drinking (ii) communication aiming to develop agreed care plans (iii) difficulty discussing palliative and end-of-life care and (iv) needs of information and plans about future eating and drinking difficulties. Families tended to wait for hospital staff to initiate discussions but usually experienced frustration with delays and repeated conversations with different staff. Some staff felt unprepared to manage these conversations and found it challenging to work across the multidisciplinary team. During discharge processes, key information and care plans about eating and drinking were not regularly passed on to people involved to avoid unnecessary readmissions. In acute hospitals, family carers and hospital staff can have disjointed communications and conversations about nutrition and hydration for persons with severe dementia. Timely reassurance, ongoing discussions and clear information sharing will support communication between those involved.
Publisher: Royal College of Psychiatrists
Date: 09-2014
DOI: 10.1192/BJP.BP.113.130948
Abstract: Dementia is common in older people admitted to acute hospitals. There are concerns about the quality of care they receive. Behavioural and psychiatric symptoms of dementia (BPSD) seem to be particularly challenging for hospital staff. To define the prevalence of BPSD and explore their clinical associations. Longitudinal cohort study of 230 people with dementia, aged over 70, admitted to hospital for acute medical illness, and assessed for BPSD at admission and every 4 (±1) days until discharge. Other measures included length of stay, care quality indicators, adverse events and mortality. Participants were very impaired 46% at Functional Assessment Staging Scale (FAST) stage 6d or above (doubly incontinent), 75% had BPSD, and 43% had some BPSD that were moderately/severely troubling to staff. Most common were aggression (57%), activity disturbance (44%), sleep disturbance (42%) and anxiety (35%). We found that BPSD are very common in older people admitted to an acute hospital. Patients and staff would benefit from more specialist psychiatric support.
Publisher: Oxford University Press (OUP)
Date: 16-11-2009
Publisher: Elsevier BV
Date: 05-2016
DOI: 10.1016/J.JPAINSYMMAN.2015.12.319
Abstract: Increasing numbers of people will die from chronic disease. Families contribute significantly to end-of-life care, but their role may not be recognized. To 1) establish the proportion of older cohabitees identified in primary care as "carers" 2) describe demographic and lifestyle characteristics of cohabitees of people terminally ill with cancer, dementia, and chronic obstructive pulmonary disease (COPD) 3) describe their health a year before and after bereavement and 4) compare health outcomes between cohabitees of people dying with cancer, COPD, or dementia. Retrospective cohort study using a U.K. primary care database (The Health Improvement Network) of 13,693 bereaved cohabitees (a proxy marker for being a carer), aged 60 years or older of people dying from cancer, COPD, or dementia. Characteristics were described one year before and after bereavement. We compared cancer, COPD, and dementia cohabitee outcomes using incidence rate ratios one year before and after bereavement and calculated mortality risk after bereavement. A total of 6.9% of cohabitees were recorded as carers. Health outcomes differed little between the three groups of cohabitees in the year before or after bereavement. The proportion of cohabitees with six or more consultations increased the year after bereavement (cancer cohabitees 16.0% to 18.8%, COPD cohabitees 17.8% to 20.4%, and dementia cohabitees 15.5% to 17.5%). At postbereavement (follow-up median 3 years, interquartile range 1.3-5.4), we found no mortality differences between the three groups. Recording of carers of terminally ill people was suboptimal. Cause of bereavement produced few differential effects on health outcomes or mortality.
Publisher: Wiley
Date: 14-05-2015
Publisher: SAGE Publications
Date: 29-04-2013
Publisher: Springer Science and Business Media LLC
Date: 11-07-2008
Publisher: Wiley
Date: 15-04-2009
Publisher: MDPI AG
Date: 10-12-2020
Abstract: Background: For people with dementia, burdensome transitions may indicate poorer-quality end-of-life care. Little is known regarding the association between home healthcare (HHC) and these burdensome transitions. We aimed to investigate the impact of HHC on transitions and hospital/intensive care unit (ICU) utilisation nearing the end-of-life for people with dementia at a national level. Methods: A nested case-control analysis was applied in a retrospective cohort study using a nationwide electronic records database. We included people with new dementia diagnoses who died during 2002–2013 in whole population data from the universal healthcare system in Taiwan. Burdensome transitions were defined as multiple hospitalisations in the last 90 days (early transitions, ET) or any hospitalisation or emergency room visit in the last three days of life (late transitions, LT). People with (cases) and without (controls) burdensome transitions were matched on a ratio of 1:2. We performed conditional logistic regression with stratified analyses to estimate the adjusted odds ratio (OR) and 95% confidence interval (CI) of the risks of transitions. Results: Among 150,125 people with new dementia diagnoses, 61,399 died during follow-up, and 31.1% had burdensome transitions (50% were early and 50% late). People with ET had the highest frequency of admissions and longer stays in hospital/ICU during their last year of life, while people with LT had fewer hospital/ICU utilisation than people without end-of-life transitions. Receiving HHC was associated with an increased risk of ET (OR = 1.14, 95 % CI: 1.08–1.21) but a decreased risk of LT (OR = 0.89, 95 % CI 0.83–0.94). In the people receiving HHC, however, those who received longer duration (e.g., OR = 0.50, 95 % CI: 0.42–0.60, versus ≤30 days) or more frequent HHC or HHC delivered closer to the time of death were associated with a remarkably lower risk of ET. Conclusions: HHC has differential effects on early and late transitions. Characteristics of HHC such as better continuity or interdisciplinary coordination may reduce the risk of transitions at the end-of-life. We need further studies to understand the longitudinal effects of HHC and its synergy with palliative care, as well as the key components of HHC that achieve better end-of-life outcomes.
Publisher: Oxford University Press (OUP)
Date: 30-07-2010
DOI: 10.1093/BMB/LDQ024
Abstract: The number of people with dementia will rise dramatically over the next 20 years. Currently, one in three people over the age of 65 will die with dementia. A PubMed search using MeSH headings for 'dementia' AND 'palliative care' and for specific areas, i.e. enteral feeding. National reports, UK guidelines and policies were also consulted. Advanced dementia is now being perceived as a 'terminal illness' with a similar symptom burden and prognosis to advanced cancer. People with dementia have poor access to good quality end-of-life care. Interventions such as antibiotics, fever management policies and enteral tube feeding remain in use despite little evidence that they improve quality of life or other outcomes. Research is required on the effectiveness of 'holistic' palliative care, outcome measures and the impact on carers and families.
Publisher: Royal College of Psychiatrists
Date: 07-2009
DOI: 10.1192/BJP.BP.108.055335
Abstract: Increasing numbers of people will die with dementia, many in the acute hospital. It is often not perceived to be a life-limiting illness. To investigate the prevalence of dementia in older people undergoing emergency medical admission and its effect on outcomes. Longitudinal cohort study of 617 people (aged over 70). The main outcome was mortality risk during admission. Of the cohort, 42.4% had dementia (only half diagnosed prior to admission). In men aged 70–79, dementia prevalence was 16.4%, rising to 48.8% of those over 90. In women, 29.6% aged 70–79 had dementia, rising to 75.0% aged over 90. Urinary tract infection or pneumonia was the principal cause of admission in 41.3% of the people with dementia. These in iduals had markedly higher mortality 24.0% of those with severe cognitive impairment died during admission (adjusted mortality risk 4.02, 95% CI 2.24–7.36). The rising prevalence of dementia will have an impact on acute hospitals. Extra resources will be required for intermediate and palliative care and mental health liaison services.
Publisher: Springer International Publishing
Date: 2017
Publisher: Springer Science and Business Media LLC
Date: 07-07-2016
Publisher: Wiley
Date: 31-07-2021
DOI: 10.1111/JGS.17387
Abstract: Robust quality indicators (QIs) are essential for monitoring and improving the quality of care and learning from good practice. We aimed to identify and assess QIs for the care of older people and people with dementia who are nearing the end of life and recommend QIs for use with routinely collected electronic data across care settings. A systematic review was conducted, including five databases and reference chaining. Studies describing the development of QIs for care of older people and those with dementia nearing the end of life were included. QIs were categorized as relating to processes or outcomes, and mapped against six care domains. The psychometric properties (acceptability, evidence base, definition, feasibility, reliability, and validity) of each QI were assessed QIs were categorized as robust, moderate, or poor. From 12,980 titles and abstracts screened, 37 papers and 976 QIs were included. Process and outcome QIs accounted for 780 (79.7%) and 196 (20.3%) of all QIs, respectively. Many of the QIs concerned physical aspects of care (n = 492, 50.4%), and very few concerned spiritual and cultural aspects of care (n = 19, 1.9%). Three hundred and fifteen (32.3%) QIs were robust and of those 220 were measurable using routinely collected electronic data. The final shortlist of 71 QIs came from seven studies. Of the numerous QIs developed for care of older adults and those with dementia nearing the end of life, most had poor or moderate psychometric properties or were not designed for use with routinely collected electronic datasets. Infrastructure for data availability, combined with use of robust QIs, is important for enhancing understanding of care provided to this population, identifying unmet needs, and improving service provision.
Publisher: Springer Science and Business Media LLC
Date: 22-08-2013
DOI: 10.1007/S11136-013-0500-Z
Abstract: The wide range of tools and methods developed for measuring and valuing health-related quality of life for use in economic evaluations are appropriate for use in most populations. However, for certain populations, specific tools may need to be developed to reflect the particular needs of that population. Patients without capacity—particularly patients with severe dementia—are such a population. At present, the tools available to economists for measuring and valuing quality of life in these patients lack validity. Here, we seek to understand the framework within which common instruments have been developed, critique these instruments with respect to patients with severely restricted capacity and to develop a new way of thinking about how to value health-related quality of life in such patients. In this essay, we describe and critique the conceptual framework by which common instruments used for measuring and valuing quality of life have been developed. We show that current common instruments used for measuring and valuing quality of life in general populations are not appropriate for populations with severely restricted capacity. We propose a new framework for thinking about quality of life in this population, based on notions of observable person-centred outcomes and utility derived from processes of care.
Publisher: Elsevier BV
Date: 2022
Publisher: Oxford University Press (OUP)
Date: 28-02-2023
Abstract: Although delirium is a significant clinical and public health problem, little is understood about how specific vulnerabilities underlie the severity of its presentation. Our objective was to quantify the relationship between baseline cognition and subsequent delirium severity. We prospectively investigated a population-representative s le of 1510 in iduals aged ≥70 years, of whom 209 (13.6%) were hospitalized across 371 episodes (1999 person-days assessment). Baseline cognitive function was assessed using the modified Telephone Interview for Cognitive Status, supplemented by verbal fluency measures. We estimated the relationship between baseline cognition and delirium severity [Memorial Delirium Assessment Scale (MDAS)] and abnormal arousal (Observational Scale of Level of Arousal), adjusted by age, sex, frailty and illness severity. We conducted further analyses examining presentations to specific hospital settings and common precipitating aetiologies. The median time from baseline cognitive assessment to admission was 289 days (interquartile range 130 to 47 days). In admitted patients, delirium was present on at least 1 day in 45% of admission episodes. The average number of days with delirium (consecutively positive assessments) was 3.9 days. Elective admissions accounted for 88 bed days (4.4%). In emergency (but not elective) admissions, we found a non-linear U-shaped relationship between baseline global cognition and delirium severity using restricted cubic splines. Participants with baseline cognition 2 standard deviations below average (z-score = −2) had a mean MDAS score of 14 points (95% CI 10 to 19). Similarly, those with baseline cognition z-score = + 2 had a mean MDAS score of 7.9 points (95% CI 4.9 to 11). In iduals with average baseline cognition had the lowest MDAS scores. The association between baseline cognition and abnormal arousal followed a comparable pattern. C-reactive protein ≥20 mg/l and serum sodium & mM/l were associated with more severe delirium. Baseline cognition is a critical determinant of the severity of delirium and associated changes in arousal. Emergency admissions with lowest and highest baseline cognition who develop delirium should receive enhanced clinical attention.
Publisher: Cambridge University Press (CUP)
Date: 28-01-2022
DOI: 10.1017/S1041610221002787
Abstract: Grief research in family carers of people with dementia has increased. We aimed to report the prevalence of pre-death and post-death grief and to synthesize associated factors and the relationship between pre-death factors and post-death grief and services used to manage grief. (Prospero protocol: CRD42020165071) We systematically reviewed literature from PsycINFO, MEDLINE, CINAHL, and ASSIA until April 2020. Effectiveness of intervention data and studies not written in English were excluded qualitative studies were additionally excluded during study selection. Study quality was assessed using the Mixed Methods Appraisal Tool. Evidence was narratively summarized. Family non-paid carers of somebody with any dementia type. Validated measures of pre-death and/or post-death grief. We included quantitative data from 55 studies (44 rated as high quality). Most included solely spouse or adult child carers. Forty-one studies reported pre-death grief, 12 post-death grief, and 6 service use eight were longitudinal. 17% met the Prolonged Grief Disorder criteria pre-death (n = 1) and 6–26% (n = 4) of participants met the Complicated Grief criteria post-death. Being a spouse, less educated, caring for somebody with advanced dementia, and greater burden and depression were associated with higher pre-death grief. Lower education level and depression were predictive of higher post-death grief. Pre-death factors found to influence post-death grief were grief and depression. Limited service use evidence was reported. Awareness of characteristics which increase the likelihood of higher grief can help identify those in need of support. Future research should focus on what supports or services are beneficial to grief experiences.
Publisher: Wiley
Date: 31-05-2017
DOI: 10.1002/GPS.4741
Abstract: The Cohen-Mansfield Agitation Inventory (CMAI (Cohen-Mansfield and Kerin, 1986)) is a well-known tool for assessing agitated behaviours in people with dementia who reside in long-term care. No studies have evaluated the psychometric qualities and factor structure of the CMAI in acute general hospitals, a setting where people with demand may become agitated. Longitudinal study investigating pain, agitation and behavioural problems in 230 people with dementia admitted to acute general hospitals in 2011-2012. Cohen-Mansfield Agitation Inventory was completed as part of a battery of assessments including PAINAD to measure pain. A nine-item two-factor model of aggressive and nonaggressive behaviours proved to be the best-fitting measurement model in this s le, (χ The factor structure of the CMAI was broadly consistent with the original solution although a large number of items were removed. Scales reflecting physical and verbal aggression were combined to form an Aggressive factor, and physical and verbal nonaggressive behaviours were combined to form the Nonaggressive factor. A shorter, more concise version of the CMAI was developed for use in acute general hospital settings. Copyright © 2017 John Wiley & Sons, Ltd.
Publisher: Cambridge University Press (CUP)
Date: 21-12-2017
DOI: 10.1017/S1041610216002222
Abstract: There are concerns about the quality of care that people with dementia receive in the general hospital. Staff report a lack of confidence and inadequate training in dementia care. A train-the-trainer model was implemented across eight acute hospital trusts in London via a large academic health and science network. Impact was evaluated using mixed methods. Data were collected at (a) in idual level: “Sense of Competence in Dementia Care” (SCID), (b) ward level: Person Interaction and Environment (PIE) observations, (c) organization level: use of specific tools, i.e. “This Is Me,” (d) systems level: numbers and types of staff trained per trust. Results were analyzed with descriptive statistics and paired t-test with thematic framework analysis for PIE observations. The number of staff trained per trust ranged from 67 to 650 (total 2,020). A total of 1,688 (85%) baseline questionnaires and 456 (27%) three month follow-up questionnaires were completed. Mean SCID score was 43.2 at baseline and 50.7 at follow-up (paired t-test, p 0.001). All sub-scales showed a small increase in competence, the largest being for “building relationships.” Organizational level data suggested increased use of carer's passport, “This Is Me” documentation, dementia information leaflets, delirium screening scales, and pathways. PIE observations demonstrated improved staff–patient interactions but little change in hospital environments. There was a significant improvement in staffs’ sense of competence in dementia care and the quality of interactions with patients. More hospitals adopted person-centered tools and pathways. Work is required to investigate if these changes improve hospital outcomes for people with dementia.
Publisher: SAGE Publications
Date: 05-11-2012
Abstract: The wishes and preferences of people with dementia should inform decisions on future care. However, such decisions are often left to family carers and may not reflect those the person with dementia would have made for themselves. We know little about what influences agreement between people with dementia and their carers. To explore whether people with dementia and their carers were able to generate and prioritise preferences for end-of-life care. We examined whether carers influenced the choices made by the persons with dementia. Nominal group technique. People with dementia ( n = 6), carers ( n = 5) and dyads of people with dementia and carers ( n = 6) attending memory assessment services. Three modified nominal group technique groups were conducted in five stages: (1) silent generation of ideas, (2) discussion, (3) further generation of ideas, (4) discussion and themeing and (5) ranking. The discussions were recorded, transcribed and analysed for thematic content using NVIVO8. Quality of care, family contact, dignity and respect were ranked as significant themes by all groups. The analysis of transcripts revealed three main themes: quality of care, independence and control and carer burden. People with dementia had difficulty considering their future selves. Carers wanted much control at the end of life, raising issues of assisted dying and euthanasia. Wishes and preferences of people with dementia and their family carers may differ. To ensure the wishes of people with dementia are respected, their views should be ascertained early in the disease before their ability to consider the future is compromised.
Publisher: Wiley
Date: 18-12-2019
DOI: 10.1002/GPS.5034
Publisher: Wiley
Date: 27-03-2016
DOI: 10.1002/GPS.4463
Publisher: Hindawi Limited
Date: 06-05-2021
DOI: 10.1111/HSC.13404
Abstract: The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio-recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations.
Publisher: Mark Allen Group
Date: 02-01-2017
DOI: 10.12968/IJPN.2017.23.1.4
Abstract: End-of-life care policy in the UK states that all people should identify their needs, priorities and preferences for end-of-life care in the form of advance care planning. Advance care planning in dementia is less well developed than in some other disease groups such as cancer and, arguably, may be more complex. A person with dementia may lose the capacity to make decisions associated with advance care planning early in the course of the disease, requiring more involvement of family carers. This study explores the ‘lived’ context to health care decision-making of dyads (the person with dementia and their carer) in respect of past, present and future healthcare decision-making.
Publisher: Wiley
Date: 29-11-2020
DOI: 10.1111/JAN.14654
Publisher: BMJ
Date: 12-2020
DOI: 10.1136/BMJOPEN-2020-040732
Abstract: To pilot a complex intervention to support healthcare and improve early detection and treatment for common health conditions experienced by nursing home (NH) residents. Pilot cluster randomised controlled trial. 14 NHs (7 intervention, 7 control) in London and West Yorkshire. NH residents, their family carers and staff. Complex intervention to support healthcare and improve early detection and treatment of urinary tract and respiratory infections, chronic heart failure and dehydration, comprising: (1) ‘Stop and Watch (S& W)’ early warning tool for changes in physical health, (2) condition-specific care pathway and (3) Situation, Background, Assessment and Recommendation tool to enhance communication with primary care. Implementation was supported by Practice Development Ch ions, a Practice Development Support Group and regular telephone coaching with external facilitators. Data on NH (quality ratings, size, ownership), residents, family carers and staff demographics during the month prior to intervention and subsequently, numbers of admissions, accident and emergency visits, and unscheduled general practitioner visits monthly for 6 months during intervention. We collected data on how the intervention was used, healthcare resource use and quality of life data for economic evaluation. We assessed recruitment and retention, and whether a full trial was warranted. We recruited 14 NHs, 148 staff, 95 family carers and 245 residents. We retained the majority of participants recruited (95%). 15% of residents had an unplanned hospital admission for one of the four study conditions. We were able to collect sufficient questionnaire data (all over 96% complete). No NH implemented intervention tools as planned. Only 16 S& W forms and 8 care pathways were completed. There was no evidence of harm. Recruitment, retention and data collection processes were effective but the intervention not implemented. A full trial is not warranted. ISRCTN74109734 ( 0.1186/ISRCTN74109734 ). BMJ Open . 2019 (5):e026510. doi:10.1136/bmjopen-2018-026510.
Publisher: Wiley
Date: 22-06-2017
DOI: 10.1111/HEX.12593
Publisher: Elsevier BV
Date: 2016
DOI: 10.1016/J.IJNURSTU.2015.08.009
Abstract: The recognition, assessment and management of pain in hospital settings is suboptimal, and is a particular challenge in patients with dementia. The existing process guiding pain assessment and management in clinical settings is based on the assumption that nurses follow a sequential linear approach to decision making. In this paper we re-evaluate this theoretical assumption drawing on findings from a study of pain recognition, assessment and management in patients with dementia. To provide a revised conceptual model of pain recognition, assessment and management based on sense-making theories of decision making. The research we refer to is an exploratory ethnographic study using nested case sites. Patients with dementia (n=31) were the unit of data collection, nested in 11 wards (vascular, continuing care, stroke rehabilitation, orthopaedic, acute medicine, care of the elderly, elective and emergency surgery), located in four NHS hospital organizations in the UK. Data consisted of observations of patients at bedside (170h in total) observations of the context of care audits of patient hospital records documentary analysis of artefacts semi-structured interviews (n=56) and informal open conversations with staff and carers (family members). Existing conceptualizations of pain recognition, assessment and management do not fully explain how the decision process occurs in clinical practice. Our research indicates that pain recognition, assessment and management is not an in idual cognitive activity rather it is carried out by groups of in iduals over time and within a specific organizational culture or climate, which influences both health care professional and patient behaviour. We propose a revised theoretical model of decision making related to pain assessment and management for patients with dementia based on theories of sense-making, which is reflective of the reality of clinical decision making in acute hospital wards. The revised model recognizes the salience of in idual cognition as well as acknowledging that decisions are constructed through social interaction and organizational context. The model will be used in further research to develop decision support interventions to assist with the assessment and management of patients with dementia in acute hospital settings.
Publisher: SAGE Publications
Date: 22-11-2012
Abstract: For end-of-life dementia patients, palliative care offers a better quality of life than continued aggressive or burdensome medical interventions. To provide the best care options to dementia sufferers, validated, reliable, sensitive, and accurate prognostic tools to identify end-of-life dementia stages are necessary. To identify accurate prognosticators of mortality in elderly advanced dementia patients consistently reported in the literature. Systematic literature review. PubMed, Embase, and PsycINFO databases were searched up to September 2012. Reference lists of included studies were also searched. Inclusion criteria were studies measuring factors specifically related to 6-month outcome in patients diagnosed with dementia in any residential or health-care setting. Seven studies met the inclusion criteria, five of which were set in the United States and two in Israel. Methodology and prognostic outcomes varied greatly between the studies. All but one study found that Functional Assessment Staging phase 7c, currently widely used to assess hospice admission eligibility in the United States, was not a reliable predictor of 6-month mortality. The most common prognostic variables identified related to nutrition/nourishment, or eating habits, followed by increased risk on dementia severity scales and comorbidities. Although the majority of studies agreed that the Functional Assessment Staging 7c criterion was not a reliable predictor of 6-month mortality, we found a lack of prognosticator concordance across the literature. Further studies are essential to identify reliable, sensitive, and specific prognosticators, which can be applied to the clinical setting and allow increased availability of palliative care to dementia patients.
Publisher: Emerald
Date: 11-09-2017
DOI: 10.1108/QAOA-09-2016-0038
Abstract: The purpose of this paper is to explore some of the ethical and practical dilemmas faced by an experienced researcher in undertaking research with a person with dementia (whom we have called Amy). Amy died shortly after a period of observation had ended and the family subsequently consented to the data being shared. This in idual case study presentation was nested within a larger study conducted in England and Scotland between 2013 and 2014. The overall aim of the main study was to investigate how healthcare professionals and informal carers recognised, assessed and managed pain in patients living with dementia in a range of acute settings. The presented case study of Amy raises three critical reflection points: (i) Researcher providing care, i.e. the place and positioning of compassion in research observation (ii) What do the stories mean? i.e. the reframing of Amy's words, gestures and behaviours as (end of) life review, potentially highlights unresolved personal conflicts and reflections on loss and (iii) Communication is embodied, i.e. the need to move beyond the recording of words to represent lived experience and into more multi-sensory methods of data capture. Researcher guidance and training about end of life observations in dementia is presently absent in the literature and this case study stimulates debate in a much overlooked area, including the role of ethics committees.
Publisher: Research Square Platform LLC
Date: 21-03-2020
DOI: 10.21203/RS.3.RS-18187/V1
Abstract: Background: Nursing home residents are often frail and most have complex healthcare needs. Hospitalisation is distressing to the person, their family and nursing home staff and costly for health services. Early detection of changes in residents’ health may reduce admissions. Our aim was to pilot a complex intervention with implementation support to improve early detection and treatment for four common Ambulatory Care Sensitive Conditions (ACSCs) urinary tract and respiratory infections, chronic heart failure and dehydration. Methods: Pilot cluster randomised controlled trial in 14 nursing homes (7 intervention, 7 control). The intervention involved 1) “stop and watch (S& W)” early warning tool for changes in physical health, 2) condition- specific care pathways and 3) Situation, Background, Assessment and Recommendation (SBAR) to structure communication with primary care. of Intervention implementation was supported by Practice Development Ch ions (PDCs) in the care home, a Practice Development Support Group (PDSG) and regular telephone coaching with external facilitators. We collected data on nursing homes (quality ratings, size, ownership), residents, their family carers and staff demographics during the month prior to intervention and subsequently, numbers of admissions, accident and emergency visits and unscheduled GP visits monthly for 6 months during the intervention period. We collected data on how the intervention was used, healthcare resource use and quality of life data for economic evaluation. We assessed participant recruitment and retention and whether a full trial was warranted. Results: We recruited 14 nursing homes, 148 staff, 95 family carers and 245 residents. One nursing home closed prior to the intervention starting and another withdrew during the data collection phase. We retained the majority of participants recruited (95%). 15% of residents had an unplanned hospital admission for one of the four study conditions during follow-up. We were able to collect sufficient data on study questionnaires (all were over 96% complete). No home implemented intervention tools as planned. Only 16 S& W forms and 8 Care Pathways were completed. There was no evidence that the intervention was harmful. Conclusions: Study recruitment, retention, data collection and processes were effective but the intervention was not implemented in practice, therefore a full trial is not warranted. Trial registration: ISRCTN74109734 (registered 6/11/2017) 0.1186/ISRCTN74109734
Publisher: BMJ
Date: 06-2017
Publisher: Cambridge University Press (CUP)
Date: 26-08-2011
DOI: 10.1017/S1041610211001608
Abstract: Background: Few people with dementia have made advance plans for their health care. Advance care planning (ACP) is a process of discussion between an in idual and their care providers that takes account of wishes and preferences for future care. We aimed to examine the facilitators and inhibitors to ACP in people with dementia. We also aimed to identify key themes in the literature and critically review the methodologies used. Methods: We systematically searched the English language literature including PubMed, CINAHL, AMED, PsychINFO, EMBASE and BNI. We included empirical studies which reported the characteristics of the patient population, the type of advance care planning used and the study setting, and which involved people with dementia, family members or professional carers. Results: We identified 17 studies (11 quantitative methods, one qualitative and five mixed methods). We found one ACP intervention which changed outcomes for people with dementia. Key themes were identified: there is a point at which cognition decreases critically so that an advanced care plan can no longer be made factors present in family carers and professionals can influence decision-making and the ACP process ACPs are affected by preferences for life sustaining treatments ACP in dementia may differ from other illness groups and there is a need for education relating to ACP. Conclusion: The current evidence base for ACP in dementia is limited. Since UK government policy recommends that all people should engage in ACP, more evidence is needed to understand the feasibility and acceptability of advanced care plans for people with dementia.
Publisher: Elsevier BV
Date: 11-2015
DOI: 10.1016/J.JPAINSYMMAN.2015.05.015
Abstract: There is need for tools to help detect pain or lack of comfort in persons unable to communicate. However, pain and (dis)comfort tools have not been compared, and it is unclear to what extent they discriminate between pain and other possible sources of discomfort, or even if items differ. To map and compare items in tools that assess pain and the broader notion of discomfort or comfort in people with severe dementia or at the end of life. Using qualitative content analysis with six classifications, we categorized each item of four thoroughly tested observational pain tools (Pain Assessment in Advanced Dementia [PAINAD], Pain Assessment Checklist for Seniors with Limited Ability to Communicate [PACSLAC], Doloplus-2, and draft Pain Assessment in Impaired Cognition [PAIC]), and four discomfort tools (including distress, comfort, and quality of life in severe dementia or at the end of life Discomfort Scale-Dementia Alzheimer Type [DS-DAT], Disability Distress Assessment Tool [DisDAT], End-of-Life in Dementia-Comfort Assessment in Dying with Dementia [EOLD-CAD], and Quality of Life in Late-Stage Dementia [QUALID] scale). We calculated median proportions to compare distributions of categories of pain and discomfort tools. We found that, despite variable content across tools, items from pain and discomfort tools overlapped considerably. For ex le, positive elements such as smiling and spiritual items were more often included in discomfort tools but were not unique to these. Pain tools comprised more "mostly descriptive" (median 0.63 vs. 0.44) and fewer "highly subjective" items (0.06 vs. 0.18) some used time inconsistently, mixing present and past observations. This analysis may inform a more rigorous theoretical underpinning and (re)development of pain and discomfort tools and calls for empirical testing of a broad item pool for sensitivity and specificity in detecting and discriminating pain from other sources of discomfort.
Publisher: Springer Science and Business Media LLC
Date: 02-08-2016
Publisher: Cambridge University Press (CUP)
Date: 18-08-2010
DOI: 10.1017/S1041610210001717
Abstract: Background: Older people are commonly admitted to the acute hospital and increasing numbers will have dementia. In this study we systematically reviewed the prevalence, associations and outcomes of dementia in older people in the general hospital, to examine the range of diagnostic tools used and highlight gaps in the literature. Methods: We searched the English language literature using Embase, PsychInfo and Medline. Studies were included if they used validated criteria for diagnosing dementia, involved subjects over the age of 55 years and were set in the general hospital. Results: Fourteen papers were identified. Prevalence estimates for dementia in studies with robust methodology were 12.9–63.0%. Less than a third of studies screened for delirium or depression and therefore some subjects may have been misclassified as having dementia. The data were highly heterogeneous and prevalence estimates varied widely, influenced by study setting and demographic features of the cohorts. Patients with dementia in the acute hospital are older, require more hours of nursing care, have longer hospital stays, and are more at risk of delayed discharge and functional decline during admission. Conclusions: When planning liaison services, the setting and demographic features of the population need to be taken into account. Most study cohorts were recruited from medical wards. More work is required on the prevalence of dementia in surgical and other specialties. A wider range of associations (particularly medical and psychiatric comorbidity) and outcomes should be studied so that care can be improved.
Publisher: BMJ
Date: 05-2021
DOI: 10.1136/BMJOPEN-2021-050066
Abstract: Despite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored. The aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives. 15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values. There were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others. This paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.
Publisher: Springer Science and Business Media LLC
Date: 24-08-2016
Publisher: Wiley
Date: 02-2023
DOI: 10.1002/GPS.5884
Abstract: To understand the decision‐making processes regarding eating and drinking for hospital patients with severe dementia and use this data to modify a decision‐making model about care for people with severe dementia. From January to May 2021, qualitative semi‐structured interviews were conducted with 29 family carers and hospital staff in England who cared for people with severe dementia during hospital admissions. Interviews were transcribed verbatim and analysed using codebook thematic analysis. We demonstrated a modified decision‐making model consisting of six stages of the decision‐making process: (i) identify a decision to be made (ii) exchange information and recognise emotions (iii) clarify values and preferences of all involved (iv) consider feasibility of each choice (v) share preferred choice and make a final decision and (vi) deliver the decision, monitor outcomes and renegotiation. From this study, decision‐making needed to be shared among all people involved and address holistic needs and personal values of people with dementia and family carers. However, hospital staff often made assumptions about the persons' ability to eat and drink without adequate consultation with family carers. The process was impacted by ward culture, professional practice, and legal framework, which might overlook cultural and personal beliefs of the persons and families. Treatment escalation plans could help inform stepwise treatments, create realistic expectations, and guide future decisions. Our decision‐making model provides clear stages of decision‐making processes and can be used to guide clinical practice and policy around care decisions for eating and drinking, which is often poorly supported.
Publisher: Springer Science and Business Media LLC
Date: 25-01-2018
Publisher: BMJ
Date: 12-2019
DOI: 10.1136/BMJOPEN-2019-030703
Abstract: (1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia. A realist review. MEDLINE, EMBASE, CINAHL and grey literature. We conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care. We identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis (2) transitions in the physical environment of care (3) how the caregiving experience is viewed by those directly involved with it (4) transition of a person with dementia into the fourth age (5) the decision making processes underpinning such processes. This review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia. CRD42018084524.
Publisher: Wiley
Date: 09-02-2022
DOI: 10.1002/GPS.5689
Abstract: People from ethnic minority backgrounds living with dementia are more likely to be diagnosed later and have less access to health and social care support than their White counterparts in the United Kingdom (UK). Covid‐19 has exacerbated health inequalities and diminished trust from underserved communities in the government and health services. The wider aim of the study was to explore the impact of covid‐19 on Black and South‐Asian people living with dementia and their carers as well as exploring the experiences of dementia care. The present paper specifically explores their views on trust and mistrust using an ecological model. Semi‐structured interviews were conducted with 11 family carers and four people living with dementia from South Asian or Black communities living in the community. Thematic analysis was used to analyse data. An exploratory qualiative design was used. Four main themes were developed exploring trust at the structural, organisational, community and in idual level. At the structural level, participants discussed the inequity of Covid‐19, some lack of trust in the UK Government and confusion in its messaging, and the anxiety sometimes leading to curtailment of media usage. At the organisational level, there was some evidence of a perceived lack of person‐centred and culturally sensitive care from healthcare professionals, as well as concerns around care homes as places of safety. At the neighbourhood community level, participants discussed both a distrust as well as a strengthening of relationships and, at the in idual level, factors such as knowledge of services, identity, and faith influenced their experience of the pandemic. People living with dementia need support at all levels and this study highlights how the pandemic impacted each level. Ways to improve trust in the Government and health professionals alongside culturally adapted health messaging should be explored. Alongside this, an examination of how cultural values and norms may influence help‐seeking responses to dementia and increase trust in services may be helpful post‐pandemic.
Publisher: Public Library of Science (PLoS)
Date: 14-03-2017
Publisher: Wiley
Date: 14-03-2021
DOI: 10.1002/GPS.5526
Abstract: To (1) describe the prescription and administration of regular and ‘as required’ (pro re nata [PRN]) analgesics in English care homes, (2) investigate in idual and care home factors associated with analgesic use. We collected data (2014–2016) at 0‐, 4‐, and 12‐months nested in a longitudinal cohort study of 86 English care homes about residents with diagnosed or probable dementia. We describe analgesics prescribed as regular or PRN medication, by class, and PRN administration. We explored in idual differences (sociodemographic dementia severity [Clinical Dementia Rating]), and care home differences (type ownership number of beds dementia‐registered/specialist Care Quality Commission rating) in prescription and administration using multilevel regression models. Data were available for 1483 residents. At baseline, 967 residents (67.9%) were prescribed analgesics: 426 residents (28.7%) prescribed regular analgesics and 670 (45.2%) prescribed PRN. Paracetamol was the most prescribed analgesic (56.7%), with PRN prescriptions more common than regular (39.7% vs. 16.6%). Across all study visits, 344 residents (mean = 41.9%) with a PRN prescription did not receive any analgesic in the 2 weeks prior to data collection. Male residents and those with severe dementia received fewer analgesics. Care homes differences in PRN administration were not explained by the modelled variables. Pain management in English care homes largely relies on PRN paracetamol that is frequently prescribed but infrequently administered. Care homes differ in how often they administer PRN analgesics. Some care home residents particularly those with more severe dementia are likely to have untreated pain.
Publisher: Wiley
Date: 21-12-2012
DOI: 10.1002/GPS.3919
Abstract: To examine the effect of dementia on longer term survival after hospital admission, and to assess whether dementia is an independent predictor of mortality. This information is vital for the provision of appropriate care. A prospective cohort study, in a large urban acute general hospital, of 616 people (70 years and older) with unplanned medical admission. The principal exposure was DSM-IV dementia and main outcome mortality risk. Dementia severity was analysed by using the Functional Assessment Staging scale. We examined a range of modifying variables: acute physiological disturbance (Acute Physiology and Chronic Health Evaluation), chronic comorbidity (Charlson Comorbidity Index, CCI) and pressure sore risk (Waterlow score). A total 42.4% of the cohort had dementia. Nearly half (48.3%) had died 12 months after admission (median survival time 1.1 years compared with 2.7 years in people without dementia). Unadjusted hazard ratios for mortality in people with dementia was 1.66 (95% CI 1.35-2.04) and for people with moderately severe/severe dementia 2.01 (95% CI 1.57-2.57). After sequential adjustment (age, gender, Acute Physiology and Chronic Health Evaluation score, Charlson Comorbidity Index and Waterlow score), patients with dementia had a mortality risk of 1.24 (95% CI 0.95-1.60) and those with moderately severe/severe dementia 1.33 (0.97-1.84). People with dementia had half the survival time of those without dementia. The effect of dementia on mortality was reduced after adjustment, particularly by the Waterlow score, a marker of frailty. The median survival of 1 year suggests clinicians should consider adopting a supportive approach to the care of older people with moderate/severe dementia who have an emergency hospital admission.
Publisher: Wiley
Date: 17-01-2023
DOI: 10.1111/HEX.13672
Abstract: Using co‐design processes, we aimed to develop an evidence‐based decision guide for family carers and hospital professionals to support decision‐making about eating and drinking for hospital patients with severe dementia. Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co‐design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co‐design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision‐making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co‐design groups developed the aims of the decision guide to support conversations and shared decision‐making processes in acute hospitals, and help people reach evidence‐based decisions. It was designed to clarify decision‐making stages, provide information and elicit the values references of everyone involved. It encouraged person‐centred care, best‐interests decision‐making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. We used rigorous and transparent processes to co‐design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real‐world impacts. People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co‐design workshops. PPI members helped design study procedures and materials and prepare this manuscript.
Publisher: BMJ
Date: 17-06-2014
Publisher: Wiley
Date: 18-06-2022
DOI: 10.1111/HEX.13552
Abstract: COVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing in idual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed. To coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond. Semi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers a group of clinical and academic experts and a group of policy and charity leads. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking. Combining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations. We worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.
Publisher: Cambridge University Press (CUP)
Date: 15-09-2020
DOI: 10.1017/S1041610220001647
Abstract: To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted. Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups. Three NHs in South East England with dementia units, erse in terms of size, ownership status, and location. Residents with a dementia diagnosis or scoring ≥2 on the Noticeable Problems Checklist, rated as “severe” on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses). Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework. Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident’s agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers’ views on the intervention. The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended ≥3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful. The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.
Publisher: Springer Science and Business Media LLC
Date: 08-01-2021
DOI: 10.1007/S40266-020-00827-1
Abstract: Anticholinergic burden (ACB) is associated with an increased risk of delirium in the older population outside of the acute hospital setting. In acute settings, delirium is associated with increased mortality, and this association is greater with full syndromal delirium (FSD) than with subsyndromal delirium (SSD). Little is known about the impact of ACB on delirium prevalence or subtype in hospitalized older adults or the impact on mortality in this population. Our objectives were to determine whether ACB moderates associations between the subtype of delirium experienced by hospitalized older adults and to explore factors (including ACB) that might moderate consequent associations between delirium and mortality in hospital inpatients. We conducted a retrospective analysis of a cohort of 784 older adults with unplanned admission to a North London acute medical unit between June and December 2007. Univariate regression analyses were performed to explore associations between ACB, as represented by the Anticholinergic Burden Scale (ACBS), delirium subtype (FSD vs. SSD), and mortality. The mean age of the s le was 83 ± standard deviation (SD) 7.4 years, and the majority of patients were female (59%), lived in their own homes (71%), were without dementia (75%), and died between hospital admission and the end of the 2-year follow-up period (59%). Mean length of admission was 13.2 ± 14.4 days. Prescription data revealed an ACBS score of 1 in 26% of the cohort, of 2 in 12%, and of ≥ 3 in 16%. The mean total ACBS score for the cohort was 1.1 ± 1.4 (range 0–9). Patients with high ACB on admission were more likely to have severe dementia, to have multiple comorbidities, and to live in residential care. Higher ACB was not associated with delirium of either subtype in hospitalized older adults. Delirium itself was associated with increased mortality, and greater associations were seen in FSD (hazard ratio [HR] 2.27 95% confidence interval [CI] 1.70–3.01) than in SSD (HR 1.58 95% CI 1.2–2.09) however, ACB had no impact on this relationship. ACB was not found to be associated with increased delirium of either subtype or to have a demonstrable impact on mortality in delirium. Prior suggestions of links between ACB and mortality in similar populations may be mediated by higher levels of functional dependence, greater levels of residential home residence, or an increased prevalence of dementia in this population.
Publisher: BMJ
Date: 29-02-2012
DOI: 10.1136/BMJSPCARE-2011-000178
Abstract: People with dementia may experience poor quality end-of-life care. The complex health and social care system may not meet their needs. The authors' objectives were to identify perceived and real barriers that prevent people with dementia and their carers receiving end-of-life care of acceptable quality. A whole-system qualitative study as part of a rapid participatory appraisal. The authors used semistructured interviews and focus groups with recently bereaved family carers of a person with dementia and a wide range of health and social care staff (50 participants). Thematic content analysis was used to analyse data and to identify barriers. Five areas were identified as barriers to providing good end-of-life care: impact of hospitalisation, care pathways, advance care planning, impact on carers, staff skills and training. A wide range of health and social professionals provided end-of-life care to people with dementia but with little coordination or knowledge of each other's activity or remit. Care was fragmented and ad hoc leading to crises and inappropriate hospital admissions. Staff lacked confidence and requested more training. Many of the identified barriers were underpinned by feelings of uncertainty regarding disease trajectory and the perceived futility of interventions. Areas of good practice were specialist nurse support to family carers and 'in reach' to nursing homes. Qualitative methods of service evaluation facilitated a broader and deeper understanding of a range of perspectives, which, with other components of rapid participatory appraisal, generated potential solutions to improve care.
Publisher: Wiley
Date: 05-08-2023
DOI: 10.1111/ACPS.13480
Abstract: Delirium is an acute neuro‐psychiatric disturbance precipitated by a range of physical stressors, with high morbidity and mortality. Little is known about its relationship with severe mental illness (SMI). We conducted a retrospective cohort study using linked data analyses of the UK Clinical Practice Research Datalink (CPRD) and Hospital Episodes Statistics (HES) databases. We ascertained yearly hospital delirium incidence from 2000 to 2017 and used logistic regression to identify associations with delirium diagnosis in a population with SMI. The cohort included 249,047 people with SMI with median follow‐up time in CPRD of 6.4 years. A total of 85,979 patients were eligible for linkage to HES. Delirium incidence increased from 0.04 (95% CI 0.02–0.07) delirium associated admissions per 100 person‐years in 2000 to 1.05 (95% CI 0.93–1.17) per 100 person‐years in 2017, increasing most notably from 2010 onwards. Delirium was associated with older age at study entry (OR 1.05 per year, 95% CI 1.05–1.06), SMI diagnosis of bipolar affective disorder (OR 1.66, 95% CI 1.44–1.93) or other psychosis (OR 1.56, 95% CI 1.35–1.80) relative to schizophrenia, and more physical comorbidities (OR 1.08 per additional comorbidity of the Charlson Comorbidity Index, 95% CI 1.02–1.14). Patients with delirium received more antipsychotic medication during follow‐up (1–2 antipsychotics OR 1.65, 95% CI 1.44–1.90 antipsychotics OR 2.49, 95% CI 2.12–2.92). The incidence of recorded delirium diagnoses in people with SMI has increased in recent years. Older people prescribed more antipsychotics and with more comorbidities have a higher incidence. Linked electronic health records are feasible for exploring hospital diagnoses such as delirium in SMI.
Publisher: BMJ
Date: 31-05-2013
Publisher: Wiley
Date: 08-03-2012
DOI: 10.1002/GPS.3795
Abstract: Supporting dementia carers is an identified target of the UK government, yet we know little about such family carers' grief before and after the death of the person with dementia for whom they care. We systematically review the existing literature on characteristics, prevalence, predictors and associations of grief in dementia carers before and after death. We searched electronic databases and found 31 publications meeting predetermined criteria. Grief in dementia carers, which may be normal or complicated, is a complex reaction to losses occurring before and after death. Carers experience anticipatory grief as multiple losses for themselves (companionship, personal freedom and control) and the person with dementia. Anticipation and ambiguity about the future, anger, frustration and guilt are core features. Anticipatory grief is greatest in moderate to severe stage dementia and spouse carers, especially when the person with dementia is institutionalised. There was poor quality evidence about the prevalence of grief studies reported anticipatory grief between 47% and 71%, and complicated grief after death is estimated around 20%. Carer depression increases with anticipatory grief. Being a spouse carer and being depressed are the strongest predictors of complicated and normal grief after death. Grief in dementia carers can be expected however, those at risk of distressing anticipatory and complicated grief may be identified and targeted for intervention when necessary. Higher quality research from a wider range of s les and countries is needed to explore this complex and emergent topic.
Publisher: Public Library of Science (PLoS)
Date: 13-07-2016
Publisher: Springer Science and Business Media LLC
Date: 03-07-2017
Publisher: Wiley
Date: 15-01-2020
DOI: 10.1002/GPS.5251
Abstract: Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams. We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-to-Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter-professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care. EMBED-Care will help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia.
Publisher: BMJ
Date: 31-03-2012
DOI: 10.1136/BMJSPCARE-2011-000177
Abstract: People with dementia and their carers may experience poor end of life care, often having to navigate complex health and social care systems. The objectives of this study were to identify: (1) barriers for people with dementia and their carers in accessing good quality end of life care and (2) cost-effective ways of enabling improvements. Rapid participatory appraisal gains information from different sources across a single locality. Participants were carers of people who had died of dementia, health and social care staff. Care pathways were modelled. Barriers identified from qualitative work were triangulated with detailed case audit and economic analysis. Results were presented to the stakeholder group who generated feasible solutions. Nine cases were audited (predominantly white British male subjects, 64-84 years with advanced dementia). Six resided at home, one in a care home and two in continuing care wards. Five died in their place of residence and four in the acute hospital. Care costs over the 6 months before death were higher in care homes or continuing care (£37 029) than for those living at home (£19 854). Synthesis of qualitative and quantitative data generated areas for improvement: patient pathway, impact of acute hospitalisation, economic costs, advance care planning, impact on carers, skills and training of health and social care staff. This method provided evidence for stimulating change in the health and social care system. Following the patient journey and identifying barriers to care allowed local context to be considered. Service providers generated solutions enabling 'ownership' of changes to service delivery.
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Start Date: 2013
End Date: 2013
Funder: Marie Curie Cancer Care
View Funded ActivityStart Date: 2011
End Date: 2013
Funder: Alzheimer's Society
View Funded Activity