Quality of Life in dementia

Background: Quality of Life (QoL) is now an important outcome for people with dementia but the nature of the illness means that there may be difficulty in measuring it.;Aims: This thesis, using an established dementia specific outcome measure, the QOL-AD, aims to assess the validity of measuring QoL in severe dementia and to investigate determinants both of QoL and of change in QoL in dementia.;Method: In the first study, 224 people with Alzheimer's disease living in community and institutional settings and their caregivers were interviewed. In the second study, 238 people with dementia living in residential homes and staff were interviewed with a follow up assessment at 20 weeks.;Results: People with a MMSE scores of 2) can comment on their QoL. People with dementia's perception of QoL differs from their caregiver's perception of it. Many people with dementia experience a decline in QoL and this may be linked to deterioration in mood or cognitive function. This suggests that psychological and pharmacological interventions aimed at improving mood or cognition may also benefit QoL

Proxy rated quality of life of care home residents with dementia: a systematic review

Quality of life (QoL) is an important outcome for people with dementia living in care homes but usually needs to be rated by a proxy. We do not know if relative or paid carer proxy reports differ. We conducted the first systematic review and meta-analysis of data investigating whether and how these proxy reports of QoL differ. We searched four databases: Medline, Embase, PsychInfo, and CINAHL in October 2015 with the terms: dementia, QoL, proxy, and care home. Included studies either compared proxy QoL ratings or investigated the factors associated with them. We meta-analyzed data comparing staff and family proxy rated QoL. We included 17/105 papers identified. We found no difference between global proxy ratings of QoL (n = 1,290; pooled effect size 0.06 (95% CI = −0.08 to 0.19)). Studies investigating factors associated with ratings (n = 3,537) found family and staff ratings correlated with the resident's physical and mental health. Staff who were more distressed rated resident QoL lower. Relatives rated it lower when the resident had lived in the care home for longer, when they observed more restraint, or contributed more to fees. Relatives and staff proxy QoL ratings share a clear relationship to resident health and overall ratings were similar. Rater-specific factors were, however, also associated with scores. Understanding why different raters consider the QoL of the same person differently is an important consideration when evaluating the meaning of proxy rated QoL. Proxy raters’ backgrounds may affect their rating of QoL

Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial

Background: The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective. Aims:To assess the clinical effectiveness over 6 years and the impact on costs and care home admission. Method: We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission. Results: In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference −2.00 points, 95% CI −3.38 to −0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58–1.35). Conclusions: START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers

An exploration of how specialist dementia nurses perceive and maintain the skills and competencies that frame their specialism: A qualitative survey

Background UK policy for complex and long-term health conditions including dementia has recommended that specialist nursing intervention is offered across the trajectory of the condition, but there is a lack of agreement regarding the skills and competencies that specialist nurses are expected to possess. Admiral Nurses are the largest UK group of specialist dementia nurses. Objective To explore how Admiral Nurses met and were supported to meet competencies as defined in the Admiral Nurse Competency Framework, and to develop and maintain skills as dementia specialists. Design Cross-sectional, semi-structured survey. Setting Online national survey. Participants Admiral (specialist dementia) Nurses. Methods We co-designed our survey with Admiral Nurses; then invited Admiral Nurses to complete it in 2022-23 Data were analysed thematically. Results 68 (20% of all Admiral Nurses) completed the survey; most were female (85.2%), from a white ethnic group (88.2%); they reported on average 24 years of nursing experience. We identified three themes in responses: 1. Having time and skills for meaningful support, explored how participants were resourced with time and skills to understand and address family carer client needs by active listening, tailoring person-centred support, and “walking alongside” families. 2. Partnering family carers, concerned how they co-designed interventions with family carers, learning from these collaborative partnerships where expertise was shared. 3. Practice and peer-based learning, explored how participants took responsibility for using available training, peer learning and self-reflection to develop their practice. Conclusions Admiral Nurse roles enabled respondents to develop as autonomous practitioners and to access resources that supported them to build and sustain their dementia specialist practice. Learning was practice based, through partnerships with family carer clients, peer support and self-directed learning. Specialist nursing models may help address the global health workforce emergency, through enabling creative practice development and valued roles that support retention of experienced nurses

Case management approaches to home support for people with dementia

Background Over 35 million people are estimated to be living with dementia in the world and the societal costs are very high. Case management is a widely used and strongly promoted complex intervention for organising and co-ordinating care at the level of the individual, with the aim of providing long-term care for people with dementia in the community as an alternative to early admission to a care home or hospital. Objectives To evaluate the effectiveness of case management approaches to home support for people with dementia, from the perspective of the different people involved (patients, carers, and staff) compared with other forms of treatment, including ‘treatment as usual’, standard community treatment and other non-case management interventions. Search methods We searched the following databases up to 31 December 2013: ALOIS, the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group,The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL, LILACS, Web of Science (including Science Citation Index Expanded (SCI-EXPANDED) and Social Science Citation Index), Campbell Collaboration/SORO database and the Specialised Register of the Cochrane Effective Practice and Organisation of Care Group. We updated this search in March 2014 but results have not yet been incorporated. Selection criteria We include randomised controlled trials (RCTs) of case management interventions for people with dementia living in the community and their carers. We screened interventions to ensure that they focused on planning and co-ordination of care. Data collection and analysis We used standard methodological procedures as required by The Cochrane Collaboration. Two review authors independently extracted data and made 'Risk of bias' assessments using Cochrane criteria. For continuous outcomes, we used the mean difference (MD) or standardised mean difference (SMD) between groups along with its confidence interval (95% CI). We applied a fixed- or random-effects model as appropriate. For binary or dichotomous data, we generated the corresponding odds ratio (OR) with 95% CI. We assessed heterogeneity by the I² statistic. Main results We include 13 RCTs involving 9615 participants with dementia in the review. Case management interventions in studies varied. We found low to moderate overall risk of bias; 69% of studies were at high risk for performance bias. The case management group were significantly less likely to be institutionalised (admissions to residential or nursing homes) at six months (OR 0.82, 95% CI 0.69 to 0.98, n = 5741, 6 RCTs, I² = 0%, P = 0.02) and at 18 months (OR 0.25, 95% CI 0.10 to 0.61, n = 363, 4 RCTs, I² = 0%, P = 0.003). However, the effects at 10 - 12 months (OR 0.95, 95% CI 0.83 to 1.08, n = 5990, 9 RCTs, I² = 48%, P = 0.39) and 24 months (OR 1.03, 95% CI 0.52 to 2.03, n = 201, 2 RCTs, I² = 0%, P = 0.94) were uncertain. There was evidence from one trial of a reduction in the number of days per month in a residential home or hospital unit in the case management group at six months (MD -5.80, 95% CI -7.93 to -3.67, n = 88, 1 RCT, P < 0.0001) and at 12 months (MD -7.70, 95% CI -9.38 to -6.02, n = 88, 1 RCT, P < 0.0001). One trial reported the length of time until participants were institutionalised at 12 months and the effects were uncertain (hazard ratio (HR): 0.66, 95% CI 0.38 to 1.14, P = 0.14). There was no difference in the number of people admitted to hospital at six (4 RCTs, 439 participants), 12 (5 RCTs, 585 participants) and 18 months (5 RCTs, 613 participants). For mortality at 4 - 6, 12, 18 - 24 and 36 months, and for participants' or carers' quality of life at 4, 6, 12 and 18 months, there were no significant effects. There was some evidence of benefits in carer burden at six months (SMD -0.07, 95% CI -0.12 to -0.01, n = 4601, 4 RCTs, I² = 26%, P = 0.03) but the effects at 12 or 18 months were uncertain. Additionally, some evidence indicated case management was more effective at reducing behaviour disturbance at 18 months (SMD -0.35, 95% CI -0.63 to -0.07, n = 206, 2 RCTs I² = 0%, P = 0.01) but effects were uncertain at four (2 RCTs), six (4 RCTs) or 12 months (5 RCTs). The case management group showed a small significant improvement in carer depression at 18 months (SMD -0.08, 95% CI -0.16 to -0.01, n = 2888, 3 RCTs, I² = 0%, P = 0.03). Conversely, the case management group showed greater improvement in carer well-being in a single study at six months (MD -2.20 CI CI -4.14 to -0.26, n = 65, 1 RCT, P = 0.03) but the effects were uncertain at 12 or 18 months. There was some evidence that case management reduced the total cost of services at 12 months (SMD -0.07, 95% CI -0.12 to -0.02, n = 5276, 2 RCTs, P = 0.01) and incurred lower dollar expenditure for the total three years (MD= -705.00, 95% CI -1170.31 to -239.69, n = 5170, 1 RCT, P = 0.003). Data on a number of outcomes consistently indicated that the intervention group received significantly more community services. Authors' conclusions There is some evidence that case management is beneficial at improving some outcomes at certain time points, both in the person with dementia and in their carer. However, there was considerable heterogeneity between the interventions, outcomes measured and time points across the 13 included RCTs. There was some evidence from good-quality studies to suggest that admissions to care homes and overall healthcare costs are reduced in the medium term; however, the results at longer points of follow-up were uncertain. There was not enough evidence to clearly assess whether case management could delay institutionalisation in care homes. There were uncertain results in patient depression, functional abilities and cognition. Further work should be undertaken to investigate what components of case management are associated with improvement in outcomes. Increased consistency in measures of outcome would support future meta-analysis

Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT): a study protocol for a randomised controlled trial of a Resource Kit.

BACKGROUND: Improving care at home for people with dementia is a core policy goal in the dementia strategies of many European countries. A challenge to effective home support is the occurrence of crises in the care of people with dementia which arise from changes in their health and social circumstances. Improving the management of these crises may prevent hospital admissions and facilitate better and longer care at home. This trial is part of a National Institute for Health Research funded programme, AQUEDUCT, which aims to improve the quality and effectiveness of teams working to manage crises in dementia. METHODS/DESIGN: It is a pragmatic randomised controlled trial of an online Resource Kit to enhance practice in teams managing crises in dementia care. Thirty teams managing mental health crises in dementia in community settings will be randomised between the Resource Kit intervention and treatment as usual. The primary outcome measure is psychiatric admissions to hospital for people with dementia in the teams' catchment area recorded 6 months after randomisation. Other outcomes include quality of life measures for people with dementia and their carers, practitioner impact measures, acute hospital admissions and costs. To enhance understanding of the Resource Kit intervention, qualitative work will explore staff, patient and carers' experience. DISCUSSION: The Resource Kit intervention reflects current policy to enable home-based care for people with dementia by addressing the management of crises which threaten the viability of care at home. It is based upon a model of best practice for managing crises in dementia designed to enhance the quality of care, developed in partnership with people with dementia, carers and practitioners. If the Resource Kit is shown to be clinically and cost-effective in this study, this will enhance the probability of its incorporation into mainstream practice. TRIAL REGISTRATION: ISRCTN 42855694 ; Registered on 04/03/2021; Protocol number: 127686/2020v9; Research Ethics Committee, 09/03/2021, Ref 21/WM/0004; IRAS ID: 289982

Risk assessment for people living with dementia: a systematic review.

Abstract Objective: This systematic review identified key components of risk assessment for people with dementia, examined attitudes towards risk identification and risk assessment, and appraised existing risk assessment tools. Methods: Systematic searches of five databases on two platforms (EBSCO, OVID) and grey literature databases (Open Grey, Base) were conducted. Studies were screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool. Findings were tabulated and synthesised using thematic synthesis. Results: Our review found people with dementia, their family carers, and healthcare professionals differed in how risk is conceptualised, with views being shaped by media perceptions, personal experiences, sociocultural influences, dementia knowledge and dementia severity. We found that mobilisation (causing falls inside and getting lost outside) is the most frequently identified risk factor. Our findings show people with dementia are generally risk-tolerant, while healthcare professionals may adopt risk-averse approaches because of organisational requirements. We found factors that disrupt daily routines, living and caring arrangements, medication management, and unclear care pathways contribute towards adverse risk events. We discovered that most studies about risk and risk assessment scales did not consider insight of the person with dementia into risks although this is important for the impact of a risk. No risk instrument identified had sufficient evidence that it was useful. Conclusion: Accurate risk assessment and effective communication strategies that include the perspectives of people with dementia are needed to enable risk-tolerant practice. No risk instrument to date was shown to be widely acceptable and useful in practice

Causes of crises and appropriate interventions: the views of people with dementia, carers and healthcare professionals

The aims of this study were to identify which factors may lead to crisis for people with dementia and their carers and identify interventions these individuals believe could help in crisis. Qualitative study using focus groups to compare the perspectives of people with dementia, family carers and healthcare professionals on causes of crises and crisis interventions. To help in a crisis, people with dementia were favourable towards support from family and friends, access to mobile phones and home adaptations to reduce risks. Carers were keen on assistive technology and home adaptation. Both carers and staff valued carer training and education, care plans and well-coordinated care. Staff were the only group emphasizing more intensive interventions such as emergency home respite and extended hours services. In terms of causes of crises, people with dementia focused on risks and hazards in their home, whereas family carers emphasized carer stress and their own mental health problems. Staff, in contrast were concerned about problems with service organization and coordination leading to crises. Physical problems were less commonly identified as causes of crises but when they did occur they had a major impact. Practical interventions such as home adaptations, assistive technology, education and training for family carers, and flexible home care services were highly valued by service users and their families during times of crisis and may help prevent hospital admissions. Specialist home care was highly valued by all groups

Maintenance cognitive stimulation therapy for dementia: single-blind, multicentre, pragmatic randomised controlled trial

Background There is good evidence for the benefits of short-term cognitive stimulation therapy for dementia but little is known about possible long-term effects. Aims To evaluate the effectiveness of maintenance cognitive stimulation therapy (CST) for people with dementia in a single-blind, pragmatic randomised controlled trial including a substudy with participants taking acetylcholinesterase inhibitors (AChEIs). Method The participants were 236 people with dementia from 9 care homes and 9 community services. Prior to randomisation all participants received the 7-week, 14-session CST programme. The intervention group received the weekly maintenance CST group programme for 24 weeks. The control group received usual care. Primary outcomes were cognition and quality of life (clinical trial registration: ISRCTN26286067). Results For the intervention group at the 6-month primary end-point there were significant benefits for self-rated quality of life (Quality of Life in Alzheimer’s Disease (QoL-AD) P = 0.03). At 3 months there were improvements for proxy-rated quality of life (QoL-AD P = 0.01, Dementia Quality of Life scale (DEMQOL) P = 0.03) and activities of daily living (P = 0.04). The intervention subgroup taking AChEIs showed cognitive benefits (on the Mini-Mental State Examination) at 3 (P = 0.03) and 6 months (P = 0.03). Conclusions Continuing CST improves quality of life; and improves cognition for those taking AChEIs

Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT): A Study Protocol for a Randomised Controlled Trial of a Resource Kit.

BACKGROUNDImproving care at home for people with dementia is a core policy goal in the dementia strategies of many European countries. A challenge to effective home support is the occurrence of crises in the care of people with dementia which arise from changes in their health and social circumstances. Improving the management of these crises may prevent hospital admissions and facilitate better and longer care at home. This trial is part of a National Institute for Health Research funded programme, AQUEDUCT, which aims to improve the quality and effectiveness of teams working to manage crises in dementia.METHODS/DESIGNIt is a pragmatic randomised controlled trial of an online Resource Kit to enhance practice in teams managing crises in dementia care. Thirty teams managing mental health crises in dementia in community settings will be randomised between the Resource Kit intervention and treatment as usual. The primary outcome measure is psychiatric admissions to hospital for people with dementia in the teams’ catchment area recorded six months after randomisation. Other outcomes include: quality of life measures for people with dementia and their carers; practitioner impact measures; acute hospital admissions; and costs. To enhance understanding of the resource kit intervention, qualitative work will explore staff, patient and carers’ experience.DISCUSSIONThe Resource Kit intervention reflects current policy to enable home-based care for people with dementia by addressing the management of crises which threaten the viability of care at home. It is based upon a model of best practice for managing crises in dementia designed to enhance the quality of care, developed in partnership with people with dementia, carers and practitioners. If the Resource Kit is shown to be clinically and cost effective in this study, this will enhance the probability of its incorporation into mainstream practice.TRIAL REGISTRATION: ISRCTN 42855694; Registered on 04/03/2021; Protocol number: 127686/2020v9; Research Ethics Committee, 09/03/2021, Ref 21/WM/0004; IRAS ID: 28998