Assessment of pain in people living with dementia at the end of life: a systematic review.

BACKGROUND: People with dementia may not receive the same quality of palliative care as those with other life-limiting conditions, particularly at end of life (EoL). AIMS: To understand the best way to examine pain in people with dementia. METHODS: A systematic review of tools to assess pain in patients with dementia near the end of life; PubMed, Medline, Embase, EBSCO Host, CINAHL Plus, Web of Science, Psycinfo, PsycArticles and Scopus were searched. FINDINGS: A total of 15 articles were identified, which were qualitatively synthesised. CONCLUSION: There are a range of pain assessment tools that are appropriate for use in people with dementia, but all 15 studies used a formal tool. A more robust approach is needed to improve the quality of research for measurement and management of pain in this population.

Developing mental health awareness and help seeking in prison: a feasibility study of the State of Mind Sport programme.

PURPOSE: The high prevalence of mental illness within the prison population necessitates innovative mental health awareness provision. This purpose of this feasibility study with 75 males (47 intervention; 28 control) was to evaluate State of Mind Sport (SOMS), originally developed as a community based mental health and well-being initiative, in a notoriously challenging prison setting. DESIGN/METHODOLOGY/APPROACH: A mixed 2 (group) × 2 (time) factorial design was adopted. Questionnaires tested for effects on knowledge of mental health, intentions to seek help, well-being and resilience. For each outcome measure, main and interaction effects (F) were determined by separate mixed factors analysis of variance. Two focus groups (N = 15) further explored feasibility and were subjected to general inductive analysis. FINDINGS: A significant group and time interaction effect were shown for mental health knowledge, F(1, 72) = 4.92, p = 0.03, ηp2 = 0.06, showing a greater post-programme improvement in mental health knowledge score for the intervention group. Focus group analysis revealed an increase in hope, coping efficacy and intentions to engage more openly with other prisoners regarding personal well-being as a result of the SOMS programme. However, fear of stigmatisation by other inmates and a general lack of trust in others remained as barriers to help-seeking. ORIGINALITY/VALUE: The implications of this study, the first to evaluate a sport-based mental health intervention in prison, are that a short intervention with low costs can increase prisoner knowledge of mental health, intentions to engage in available well-being opportunities and increase a sense of hope, at least in the short term.

Adapting Digital Social Prescribing for Suicide Bereavement Support: The Findings of a Consultation Exercise to Explore the Acceptability of Implementing Digital Social Prescribing within an Existing Postvention Service.

This paper describes a consultation exercise to explore the acceptability of adapting digital social prescribing (DSP) for suicide bereavement support. Bereavement by suicide increases the risk of suicide and mental health issues. Social prescribing improves connectedness and empowerment and can provide digital outcomes-based reporting to improve the capacity for measuring the effectiveness of interventions. Our aim was to consult on the acceptability and potential value of DSP for addressing the complexities of suicide bereavement support. Our approach was underpinned by implementation science and a co-design ethos. We reviewed the literature and delivered DSP demonstrations as part of our engagement process with commissioners and service providers (marrying evidence and context) and identified key roles for stakeholders (facilitation). Stakeholders contributed to a co-designed workshop to establish consensus on the challenges of providing postvention support. We present findings on eight priority challenges, as well as roles and outcomes for testing the feasibility of DSP for support after suicide. There was a consensus that DSP could potentially improve access, reach, and monitoring of care and support. Stakeholders also recognised the potential for DSP to contribute substantially to the evidence base for postvention support. In conclusion, the consultation exercise identified challenges to facilitating DSP for support after suicide and parameters for feasibility testing to progress to the evaluation of this innovative approach to postvention.

When health services are powerless to prevent suicide: results from a linkage study of suicide among men with no service contact in the year prior to death.

AIMS: To investigate cases of suicide in which there was no healthcare contact, by looking at history of help-seeking and evidence of previous mental health vulnerability. To identify any life events associated with suicide for which individuals did not seek help. BACKGROUND: Previous research has suggested that non-consultation is the main barrier to suicide prevention among men. Estimates suggest approximately 22% of men who die by suicide have not consulted their GP in the year before their death. Little is known about the lifetime pattern of engagement with services among these individuals and whether or not this may influence their help-seeking behaviour before death. METHODS: Coroner records of suicide deaths in Northern Ireland over 2 years were linked to general practice (GP) records. This identified 63 individuals who had not attended health services in the 12 months before death. Coroner's data were used to categorise life events associated with the male deaths. Lifetime mental health help-seeking at the GP was assessed. FINDINGS: The vast majority of individuals who did not seek help were males (n=60, 15% of all suicide deaths). Lack of consultation in the year before suicide was consistent with behaviour over the lifespan; over two-thirds had no previous consultations for mental health. In Coroner's records, suicides with no prior consultation were primarily linked to relationship breakdown and job loss. These findings highlight the limitations of primary care in suicide prevention as most had never attended GP for mental health issues and there was a high rate of supported consultation among those who had previously sought help. Public health campaigns that promote service use among vulnerable groups at times of crisis might usefully be targeted at those likely to be experiencing financial and relationship issues.

Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life.

BACKGROUND: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care. AIMS: To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia. DESIGN: 9-month prospective cohort study. SETTING AND PARTICIPANTS: Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes. MAIN OUTCOME MEASURES: At study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale). RESULTS: Of 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had 'do not resuscitate' statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common. CONCLUSION: People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.

Health care professionals' perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature.

This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.

Nursing home manager's knowledge, attitudes and beliefs about advance care planning for people with dementia in long-term care settings: a cross-sectional survey.

AIMS AND OBJECTIVES: To examine nursing home managers' knowledge, attitudes, beliefs and current practice regarding advance care planning for people with dementia in long-term care settings informed by the theory of planned behaviour. BACKGROUND: Internationally, advance care planning is advocated for people with dementia. However, evidence suggests that discussions with people with dementia are rare, particularly in long-term care settings. Whilst nursing home managers can be considered central to implementation in this setting, there is a dearth of research that has examined their perspective. This study reports on their role with regard to advance care planning and the perceived factors which influence this. DESIGN: A cross-sectional postal survey was carried out as part of a larger scale sequential explanatory mixed-methods study between January-March 2015. SETTING AND PARTICIPANTS: Nursing home managers in a region in the UK (n = 178). RESULTS: A response rate of 66% (n = 116) was achieved. Nursing home managers demonstrated a lack of knowledge of advance care planning, with negative attitudes underpinned by concerns regarding the capacity and lack of perceived benefits to the person with dementia. Currently, they do not view advance care planning as part of their role, with lack of ownership impacting upon current practice behaviours. CONCLUSIONS: Whilst nursing home managers recognise the potential benefits of advance care planning, barriers and challenges create a reluctance to facilitate. Targeted training to address the knowledge deficit is required, with the wider components of advance care planning promoted. There is a need for greater role clarification to ensure nurses in long-term care settings identify with the process in the future. A gap between rhetoric and reality of implementation is evident; therefore, long-term care settings must critically examine system, organisational and individual factors for failure to implement advance care planning for people with dementia. RELEVANCE TO CLINICAL PRACTICE: Increased cognisance of the context in which advance care planning takes place is vital for improved implementation in this context. In addition strong nursing leadership is imperative to facilitate initiation, engagement and re-evaluation of the process of advance care planning.