Ingela Thuné-Boyle

Palliative assessment and advance care planning in severe dementia: An exploratory randomized controlled trial of a complex intervention

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.

Challenges to improving end of life care of people with advanced dementia in the UK

The end of life care received by patients with advanced dementia and their carers is of increasing importance as the incidence of dementia is set to rise in the next 30 years. Currently, inappropriate admissions to hospital are common in the UK and patients are less likely to be referred to palliative care services, receive less pain control but undergo more invasive interventions compared to their cognitively intact counterparts. Patients and families are seldom informed of the terminal nature of dementia and advance care planning discussions are rare. The aim of this study was to improve the understanding of end of life care needs for this patient group and their carers, and to use this information to devise an intervention to improve care. Qualitative data were obtained from relatives of 20 patients with advanced dementia admitted to an inner London teaching hospital acute National Health Service (NHS) Trust and 21 health care professionals involved in their care. Framework analysis was used to analyse the transcripts. The results showed that participants’ understanding of dementia and its likely progress was poor. Provision of information regarding the future was rare despite high information needs. Attitudes regarding end of life care were often driven by the participant’s illness awareness. These attitudes served to guide the decision making process and appear to be a major barrier to the provision of more appropriate care. Implications for patient care are discussed and suggestions for future interventions are made.

Religious/spiritual coping resources and their relationship with adjustment in patients newly diagnosed with breast cancer in the UK

Religious/spiritual resources may serve multiple functions in adjustment to cancer. However, there is very little evidence of the importance of religious/spiritual variables outside the USA. This paper reports the cross‐sectional data of a longitudinal study examining the beneficial and harmful effects of religious/spiritual coping resources on adjustment in the first year after a breast cancer diagnosis.

The effect of exercise on behavioral and psychological symptoms of dementia: towards a research agenda.

BACKGROUND Behavioral and psychological symptoms of dementia (BPSD) are common and are core symptoms of the condition. They cause considerable distress to the person with dementia and their carers and predict early institutionalization and death. Historically, these symptoms have been managed with anxiolytic and antipsychotic medication. Although potentially effective, such medication has been used too widely and is associated with serious adverse side-effects and increased mortality. Consequently, there is a need to evaluate non-pharmacological therapies for behavioral and psychological symptoms in this population. One such therapy is physical activity, which has widespread health benefits. The aim of this review is to summarize the current findings of the efficacy of physical activity on BPSD. METHOD Published articles were identified using electronic and manual searches. Rather than systematically aggregating data, this review adopted a rapid critical interpretive approach to synthesize the literature. RESULTS Exercise appears to be beneficial in reducing some BPSD, especially depressed mood, agitation, and wandering, and may also improve night-time sleep. Evidence of the efficacy of exercise on improving other symptoms such as anxiety, apathy, and repetitive behaviors is currently weak or lacking. CONCLUSION The beneficial effect of exercise type, its duration, and frequency is unclear although some studies suggest that walking for at least 30 minutes, several times a week, may enhance outcome. The methodological shortcomings of current work in this area are substantial. The research and clinical implications of current findings are discussed.

The effect of exercise on behavioural and psychological symptoms of dementia: the EVIDEM-E randomised controlled clinical trial

The objective of this study is to evaluate the effectiveness of a simple dyadic (person with dementia and their main carer) exercise regimen as a therapy for the behavioural and psychological symptoms of dementia.

Tailored educational intervention for primary care to improve the management of dementia: the EVIDEM-ED cluster randomized controlled trial

BackgroundEarly diagnosis of dementia is important because this allows those with dementia and their families to engage support and plan ahead. However, dementia remains underdetected and suboptimally managed in general practice. Our objective was to test the effect of a workplace-based tailored educational intervention developed for general practice on the clinical management of people with dementia.MethodsThe tailored educational intervention was tested in an unblinded cluster randomized controlled trial with a pre/post-intervention design, with two arms: usual/normal care control versus educational intervention. The primary outcome measure was an increase in the proportion of patients with dementia who received at least two documented dementia-specific management reviews per year. Case identification was a secondary outcome measure.Results23 practices in South-East England participated. A total of 1,072 patients with dementia (intervention: 512, control: 560) had information in their medical records showing the number of reviews within 12 months (or a proportion of) before intervention or randomization and within 12 months (or a proportion of) after. The mean total number of dementia management reviews after the educational intervention for people with dementia was 0.89 (SD 1.09; minimum 0; median 1; maximum 8) compared with 0.89 (SD 0.92; minimum 0; median 1; maximum 4) before intervention. In the control group prior to randomization the mean total number of dementia management reviews was 1.66 (SD 1.87; minimum 0; median 1; maximum 12) and in the period after randomization it was 1.56 (SD 1.79; minimum 0; median 1; maximum 11). Case detection rates were unaffected. The estimated incidence rate ratio for intervention versus control group was 1.03 (P = 0.927, 95% CI 0.57 to 1.86).ConclusionsThe trial was timely, coinciding with financial incentives for dementia management in general practice (through the Quality Outcomes Framework); legal imperatives (in the form of the Mental Capacity Act 2005); policy pressure (The National Dementia Strategy 2009); and new resources (such as dementia advisors) that increased the salience of dementia for general practitioners. Despite this the intervention did not alter the documentation of clinical management of patients with dementia in volunteer practices, nor did it increase case identification.Trial registrationNCT00866099/Clinical Trials

Clinicians as recruiters to dementia trials: lessons from the EVIDEM‐E project

‘Evidenced based interventions in dementia’ (EVIDEM: www.EVIDEM.org.uk) is a 5-year research & development programme aiming to explore, evaluate and improve the quality of community based dementia care (Iliffe et al., 2008). The EVIDEM programme, like most clinical trials, relies on clinicians to recruit participants. Key NHS Stakeholders support was strong for EVIDEM and so we anticipated straightforward recruitment. However, this has not been the case; from a population exceeding 2000 people with dementia, one EVIDEM trial (EVIDEM-E: http://www.evidem.org.uk/projects/evidem-e.htm) recruited 6 participants over 6 months through clinical teams, despite minimal exclusion criteria. Our enquiries suggested that this was due to clinicians not distributing invitations, rather than a lack of interest from people with dementia and their carers. With recruitment alarmingly low and struggling to understand the incongruity between verbal support and limited promotion of the study, we invited team managers, nurses, occupational therapists, physiotherapists and psychologists to a facilitated roundtable discussion on their perceptions of research, impediments to their role as recruiters and ways to enhance recruitment.

Diagnosis and management of dementia in family practice

Background: Improving quality of care for people with dementia is a high priority. Considerable resources have been invested in financial incentives, guideline development, public awareness and educational programmes to promote earlier diagnosis and better management. Objectives: Evaluating family physicians’ concordance with guidelines on diagnosis and management of people with dementia, from first documentation of symptoms to formal diagnosis. Method: Analysis of medical records of 136 people with dementia recruited by 19 family practices in NW London and surrounding counties. Results: Practices invited 763 people with dementia to participate, 167 (22%) agreed. Complete records were available for 136 (18%). The majority of records included reference to recommended blood tests, informant history and caregiver concerns. Presence or absence of symptoms of depression, psychosis, other behavioural and psychological symptoms of dementia, and cognitive function tests were documented in 30%–40% of records. Documentation of discussions about signs and symptoms of dementia, treatment options, care, support, financial, legal and advocacy advice were uncommon. Comparison of these findings from a similar study in 2000–2002 suggests improvements in concordance with blood tests, recording informant history, presence or absence of depression or psychosis symptoms. There was no difference in documenting cognitive function tests. Immediate referral to specialists was more common in the recent study. Conclusion: Five years after UK dementia guidelines and immediately after the launch of the dementia strategy, family physicians appeared concordant with clinical guidelines for dementia diagnosis (other than cognitive function tests), and referred most patients immediately. However, records did not suggest systematic dementia management.

Explaining the effects of symptom attribution by carers on help-seeking for individuals living with dementia

This study investigated the effects of carer attributions on help-seeking behaviour for people with dementia using interviews with 84 carers recruited through general practice. Memory loss was the most commonly reported first symptom but psychological and behavioural symptoms were also common at onset. In over a third of individuals help-seeking was delayed for a mean of 25 months (range 6–69, SD 19.3). Help-seeking between those who attributed symptoms to dementia, or to unknown causes, and those who attributed symptoms to personality, ageing, life events or other illnesses was statistically significant (p < 0.001). No statistically significant associations between help-seeking and patient or carer characteristics were found. There is a need to raise public awareness about the range of symptoms suggestive of dementia. Assumptions that age and other conditions may be the likely cause of an individual’s cognitive decline needs to be challenged by practitioners. Attribution of symptoms to characteristics other than dementia delays help-seeking.

Religiousness and Spirituality in Coping with Cancer

The use of religious and spiritual beliefs and practices in coping with cancer may be prevalent throughout its course considering the stressful nature of the illness and its treatments. Religious/Spiritual resources may also serve multiple functions in long-term adjustment to cancer. This chapter begins by examining what we mean by religiousness and spirituality and discusses the difficulties surrounding these concepts. It then moves on to explore the nature of religious coping and critically examines the various ways in which it has been measured. The prevalence of religious coping in patients with cancer and the evidence of its importance in terms of cancer adjustment are also discussed. This evidence will be used to justify why aspects of patients’ religiousness/spirituality should be assessed and addressed in cancer care. In addition, the chapter provides a few examples of how to take a spiritual history and assess patients’ spiritual needs. Indeed, patients may benefit from having their spiritual needs addressed as experiencing some form of religious/spiritual struggle may act as a barrier to illness adjustment. With increasing evidence in the literature of the importance of religious/spiritual coping strategies and struggles during cancer, assessing patients’ spiritual needs and providing patients with spiritual support, not just during the palliative phase of cancer but also early on in the cancer experience, may be important. How to incorporate and manage spiritual distress as part of patients’ general distress management and care and who should undertake such assessments are discussed. However, there are various barriers associated with why such assessments are not taking place within clinical practice. These are explored before summarising the evidence and providing suggestions for future directions.