Understanding What Supports Dementia-Friendly Environments in General Hospital Settings: a Realist Evaluation

Background: Improving care for people living with dementia when they are admitted to hospital is a national priority. Interventions have been designed and implemented to support staff to improve how they provide care to patients with dementia. However, there is limited understanding of how these interventions work in practice and what the outcomes are for patients and their family carers. Objective: To develop, test, and refine a theory-driven explanation of what supports hospital staff to provide dementia-friendly care and with what outcomes for people living with dementia and their carers. Method: A two-phase study design employing realist methodology. Phase one was a realist review which combined evidence from stakeholder interviews and literature searches. Phase two used realist evaluation to analyse data collected from two NHS Hospital Trusts in the East of England to test the theory developed in phase one. Findings: Initial scoping in the realist review identified three candidate theories which structured the literature searches and analysis. Six related context-mechanism-outcome configurations were identified and collectively made the initial programme theory. The review found that single strategies, such as dementia awareness training, would not on their own change how staff provide care for patients with dementia. An important context was for staff to understand behaviour as a form of communication. Organisational endorsement for dementia care and clarity in staff roles was important for staff to recognise dementia care as a legitimate part of their work. The realist evaluation refined the programme theory. While the study sites had applied resources for patients with dementia differently, there were crosscutting themes which demonstrated how key mechanisms and contexts influenced staff actions and patient outcomes. When staff were allocated time to spend with patients and drew on their knowledge of the patient with dementia and dementia care skills, staff could provide care in ways that reassured patients and recognised their personhood. However, accepted organisational and social norms for care practices influenced whether staff considered providing skilled dementia care was an important contribution to the work on the ward. This impacted on how staff prioritised their work, which influenced whether they recognised and addressed patient needs such as pain or hunger, made attempts to reduce distress, and if patients and carers considered they were listened to. Organisational focuses, such as risk management, influenced how patient need was defined and how staffing resources were allocated. Staff commitment to continuing in dementia care was influenced by whether or not they valued dementia care as skilled work. Discussion: Single strategies, such as the use of dementia awareness training, will not on their own improve the outcomes for patients with dementia when they are admitted to hospitals. In addition, attention needs to be paid to the role of senior managers and their knowledge of dementia to support staff to provide care in ways that recognise the needs of the person. The way dementia care is valued within an organisation has implications for how resources are organised and how staff consider their role in providing dementia care. Evidence from observations demonstrated that when staff are supported to provide good dementia care, patients experienced positive outcomes in terms of their needs being addressed and reducing distress. Dementia care needs to be recognised as skilled work by the staff and the organisation.

Components of palliative care interventions addressing the needs of people with dementia living in long term care: a systematic review

© The Author(s) 2020. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).Background: People with dementia requiring palliative care havemultiple needs that require complex, multicomponent interventions. Thisneed is amplified in the long term care setting. The European Associationfor Palliative Care (EAPC) White Paper offers recommendations forpalliative care in dementia and highlights domains of care integral forthis population, thus providing useful guidance to developing suchinterventions. This review maps components of palliative careinterventions for people with dementia in LTCFs, with a particular focuson shared decision-making.Peer reviewe

Music therapy in psychiatry/mental health

Nygaard Pedersen offer some perspectives from primarily my personal experiences in clinical practice in mental health with different patient populations spanning 20 years, primarily people suffering from personality disturbances, schizophrenia and depression. These perspectives are illustrated through a case study. Music therapy is a flourishing and vitalising offer in the mental health system

Creating Excellence in Dementia Care: A Research Review for Ireland's National Dementia Strategy

Examines the prevalence and economic and social costs of dementia; policies, practices, and data on health and social care services in community-based, acute care, and long-term residential settings; and proposed elements for a new strategy

Withdrawal versus continuation of long-term antipsychotic drug use for behavioural and psychological symptoms in older people with dementia

Background : Antipsychotic agents are often used to treat neuropsychiatric symptoms (NPS) in people with dementia although there is uncertainty about the effectiveness of their long-term use for this indication and concern that they may cause harm, including higher mortality. When behavioural strategies have failed and treatment with antipsychotic drugs is instituted, regular attempts to withdraw them have been recommended in guidelines. Physicians, nurses and families of older people with dementia may be reluctant to stop antipsychotics, fearing deterioration of NPS. This is an update of a Cochrane Review published in 2013. Objectives : To evaluate whether withdrawal of antipsychotic agents is successful in older people with dementia and NPS in primary care or nursing home settings, to list the different strategies for withdrawal of antipsychotic agents in older participants with dementia and NPS, and to measure the effects of withdrawal of antipsychotic agents on participants' behaviour and assess safety. Search methods : We searched the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group (ALOIS), the Cochrane Library, MEDLINE, Embase, PsycINFO, CINAHL, LILACS, clinical trials registries and grey literature sources up to 11 January 2018. Selection criteria : We included all randomised, controlled trials comparing an antipsychotic withdrawal strategy to continuation of antipsychotics in people with dementia who had been treated with an antipsychotic drug for at least three months. Data collection and analysis : We used standard methodological procedures according to the Cochrane Handbook for Systematic Reviews of Interventions. We rated the quality of evidence for each outcome using the GRADE approach. Main results : We included 10 studies involving 632 participants. One new trial (19 participants) was added for this update. One trial was conducted in a community setting, eight in nursing homes and one in both settings. Different types of antipsychotics at varying doses were discontinued in the studies. Both abrupt and gradual withdrawal schedules were used. Reported data were predominantly from studies at low or unclear risk of bias. We included nine trials with 575 randomised participants that used a proxy outcome for overall success of antipsychotic withdrawal. Pooling data was not possible due to heterogeneity of outcome measures used. Based on assessment of seven studies, discontinuation may make little or no difference to whether or not participants complete the study (low-quality evidence). Two trials included only participants with psychosis, agitation or aggression who had responded to antipsychotic treatment. In these two trials, stopping antipsychotics was associated with a higher risk of leaving the study early due to symptomatic relapse or a shorter time to symptomatic relapse. We found low-quality evidence that discontinuation may make little or no difference to overall NPS, measured using various scales (7 trials, 519 participants). There was some evidence from subgroup analyses in two trials that discontinuation may reduce agitation for participants with less severe NPS at baseline, but may be associated with a worsening of NPS in participants with more severe NPS at baseline. None of the studies assessed withdrawal symptoms. Adverse effects of antipsychotics (such as falls) were not systematically assessed. Low-quality evidence showed that discontinuation may have little or no effect on adverse events (5 trials, 381 participants), quality of life (2 trials, 119 participants), or cognitive function (5 trials, 365 participants). There were insufficient data to determine whether discontinuation of antipsychotics has any effect on mortality (very low-quality evidence). Authors' conclusions : There is low-quality evidence that antipsychotics may be successfully discontinued in older people with dementia and NPS who have been taking antipsychotics for at least three months, and that discontinuation may have little or no important effect on behavioural and psychological symptoms. This is consistent with the observation that most behavioural complications of dementia are intermittent and often do not persist for longer than three months. Discontinuation may have little or no effect on overall cognitive function. Discontinuation may make no difference to adverse events and quality of life. Based on the trials in this review, we are uncertain whether discontinuation of antipsychotics leads to a decrease in mortality. People with psychosis, aggression or agitation who responded well to long-term antipsychotic drug use, or those with more severe NPS at baseline, may benefit behaviourally from continuation of antipsychotics. Discontinuation may reduce agitation for people with mild NPS at baseline. However, these conclusions are based on few studies or small subgroups and further evidence of benefits and harms associated with withdrawal of antipsychotic is required in people with dementia and mild and severe NPS. The overall conclusions of the review have not changed since 2013 and the number of available trials remains low

Effectiveness of Recovery-Focused Mental Health Care of Older People With Memory Problems

Introduction Dementia is a syndrome due to disease of the brain, usually of a chronic nature, in which there is disturbance of multiple higher cortical functions including Memory, Comprehension, Thinking, Judgment, Orientation, language and communication skills and abstract thinking. It is one of the most challenging disorders both in terms of prevalence and economic burden. There are currently approximately 800,000 people with dementia in UK and national cost is 17 billion per year. It is estimated that in next thirty years, number of people with dementia will increase to 1.4 million and the national cost will be over 50 billion. The exceptional advances in modern medicine in terms of prolonging life expectancy do not necessarily improve the care delivered to people with dementia. Dementia is a progressive condition where clinical recovery is not possible despite the discovery of cognition enhancing drugs. This belief leads to low expectations that tend to erode hope and foster indignity. Advances in treatment of Alzheimer’s disease have, however, stimulated new thinking and methods of service delivery. At certain stage of their illness, if not from the very beginning, personal, and social recovery becomes more meaningful for service users than their clinical recovery. Objective To investigate whether recovery-orientated psychiatric assessment and therapeutic intervention enhances the wellbeing of people with memory problems and their family carers. Method This study was a preliminary randomised control study. Patients were randomly allocated to recovery focus group or treatment as usual group acting as the control. Participants in the recovery focus group received a recovery-focused pre-diagnostic wellbeing assessment and counselling, diagnostic consultation with written feedback and post-diagnostic support over a period of six months. Participants in both groups were assessed using the WHO Wellbeing Index (WHO-5) as the primary outcome measure. The Mini Mental State Examination, Cornell Scale for Depression in Dementia, EuroQol-5D and Zarit Burden Interview were used as secondary outcome measures. Written records of the narrative accounts of participants in the recovery focus group were also obtained. Results 48 patients with early dementia were recruited and agreed to take part in the study. Out of these, 34 patients completed the study, of which 17 patients were in the recovery focus group and 17 patients were in the treatment as usual group (control).There was a significant difference between the groups in terms of greater improvement in wellbeing as rated by the WHO – 5 Wellbeing Index in the recovery focus group compared to the control group. The secondary outcome measures in the areas of cognition, quality of life and caregiver burden showed no differences between the groups. However, case histories from the recovery focus group identified the main areas of improvement in improved mood, increased social interaction, reduction in carer strain and / or burden and improved self-worth and / or confidence. Conclusions This study shows that recovery focused care can enhance the wellbeing of people with mild to moderate dementia. The additional benefits perceived by the patients and their relatives /carers include improvement in mood symptoms, social interaction and confidence as well as reduction in carer burden and strain

The Effects of Music Therapy on Older Adults with Dementia: A Systematic Review

Older adults with dementia experience difficulties throughout the progression of the disease, including decreased quality of life and mental health (Weise et al., 2018). Nonpharmacological interventions, such as music therapy and music listening, may be one solution to affect mental health outcomes in this population. The two authors seek to answer the following PICOT formatted question: In older adults, ages 65 and older, with dementia, how does music therapy, compared with treatment as usual, affect depression and anxiety? Twenty primary sources, published from 2014 to 2019, were reviewed and critically appraised. The sources were diverse with regards to country of origin, design, methods, and results. Across studies, findings were inconsistent with some supporting that music therapy or music listening increased quality of life and decreased depression, anxiety, and agitation

The development of a technique to assess the quality of life (QOL) of patients with dementia and of their carers

Although there are quality of life measures, both generic and disease-specific, for most medical conditions, to date none has been developed for the elicitation of subjective reports from patients with dementia. There are a number of methodological issues which make such assessments potentially difficult. Since progressive, global cognitive problems are the cardinal feature of the disorder, the first consideration is whether interviewing patients about their own QOL is feasible. The aim of this research was to develop a quality of life assessment schedule for patients with dementia and to ascertain at what point in the disease-process patient self-report of QOL is no longer possible. A subjective, respondent-driven QOL assessment technique was developed and psychometrically validated. This was based on an existing psychological theory and methods, namely, Personal Construct Theory and Repertory Grid Technique. The resulting Quality of Life Assessment Schedule (QOLAS) is a generic technique. Five domains of functioning are assessed by the method: physical, psychological, social/family, work/economic and cognitive. In order to test the psychometric properties of the new technique, the method was tested in two groups of patients with epilepsy in addition to psychometric testing in patients with dementia and their carers. After piloting the technique in patients with dementia and their carers, the method was slightly modified for use in this context. A group of patients with mild-to-moderate dementia, plus their primary carer, were recruited and interviewed 3 times: at baseline, 6 months later and 12 months from baseline. The interviews conducted were: patient rating self; carer rating patient and carer rating their own QOL. The streamlined, simplified Quality of Life Assessment Schedule (QOLAS) formed the core of the interview in each case. A number of existing generic and disease-specific questionnaires were administered and qualitative data were also collected. The question of the reliability or stability of the patients' perception of their own QOL was addressed in two ways: (i) by looking at correlations between scores obtained on a number of instrument subscales assessing the same, or similar, items; (ii) by a head-to-head comparison of the patients rating themselves and the carer rating the patient on the same instrument. Methodological issues in dementia research such as patient heterogeneity, variations in the pattern of cognitive decline, anosognosia, denial, ambiguity of questions, coping and adjustment are addressed and recommendations are made. Patients with dementia are able to assess and report their own QOL at the onset of their illness but reliability diminishes with disease progression. The findings suggest that the simplified QOLAS technique is a valid procedure in assessing the QOL of patients with mild-to-moderate dementia and the QOL of their principal carer