Improving the end-of-life for people with dementia living in a care home: an intervention study.

BACKGROUND: One in three adults, most of whom are living in a care home at the time, dies with dementia. Their end-of-life is often in hospital, where they may experience uncomfortable interventions without known benefit and die rapidly with uncontrolled pain and comfort needs. This study aimed to improve end-of-life care for people with dementia in a care home by increasing the number and implementation of advanced care wishes. METHODS: We recruited staff, residents with dementia, and their relatives from a 120-bed nursing home in London, UK. The intervention was a ten-session manualized, interactive staff training program. We compared advance care wishes documentation and implementation, place of death for residents who died, and themes from staff and family carers' after-death interviews pre- and post-intervention. RESULTS: Post-intervention there were significant increases in documented advance care wishes arising from residents' and relatives' discussions with staff about end-of-life. These included do not resuscitate orders (16/22, 73% vs. 4/28, 14%; p < 0.001); and dying in the care homes as opposed to hospital (22/29, 76% vs. 14/30, 47%; p < 0.02). Bereaved relatives overall satisfaction increased from 7.5 (SD = 1.3) pre-intervention to 9.1 (SD = 2.4) post-intervention; t = 17.6, p = 0.06. Relatives reported increased consultation and satisfaction about decisions. Staff members were more confident about end-of-life planning and implementing advanced wishes. CONCLUSION: This small non-randomized study is the first end-of-life care in dementia intervention to report an increase in family satisfaction with a reduction in hospital deaths. This is promising but requires further evaluation in diverse care homes.

Condom use following a pilot test of the Popular Opinion Leader intervention in the Barbados Defence Force.

Worldwide, military personnel have been recognized as a population at elevated risk for sexually transmitted infections and HIV. However, few evidence based behavioral interventions for the prevention of HIV and STIs have been rigorously evaluated in military personnel. We adapted the Popular Opinion Leaders (POL) intervention and piloted the adapted program with the Barbados Defence Force at one military base in Barbados. Popular Opinion Leaders were selected and trained to focus conversations on condom use. Behavioral questionnaires were administered using audio computer-assisted self interview at baseline (n = 256) and 6-month follow-up (n = 303). Mid-point focus groups were conducted with a sample of 15 POLs at a 3 month mid-point assessment. Quantitative data showed moderate increases in condom use at 6-months, and significant uptake of condom use during oral-genital contact in female personnel. A subgroup analysis suggests that this change was partially mediated by post-intervention changes in injunctive norms surrounding condom use in women. Focus groups revealed that POLs were heavily focusing on condom demonstrations, condom provision within social networks, speaking with coworkers about pleasure associated with condom use, and that the most common venues for conversations included those where alcohol was consumed. During the intervention, POLs dispersed from the intervention site as a result of normal personnel movement across bases, resulting in our having to use a pre and post intervention design across the population. It is likely that larger effect sizes would be observed in efforts that account for the natural dispersion of personnel across bases.

Can district nurses and care home staff improve bowel care for older people using a clinical benchmarking tool?

A quasi-experimental study tested a clinical benchmarking tool (Essence of Care) to improve bowel-related care for older people living in six care homes. In the intervention care homes, district nurses and care home staff used the clinical benchmarking tool to discuss and plan how to improve bowel care for residents. In the control care homes, staff were provided with detailed information about the residents and continence services contact details. The intervention was acceptable to care home and district nursing staff, and possible to incorporate into existing working patterns. The study did not demonstrate a significant reduction in bowel-related problems, although there was evidence in one care home of reduction in episodes of avoidable faecal incontinence. At an individual level of care, there were observable benefits, and examples of person-centred care were prompted through participating in the intervention and improved staff awareness. Clinical benchmarking tools can be used to structure discussion between district nurses and care home staff to review and plan care for residents. However, it takes time to achieve change and embedding this kind of approach requires either robust pre-existing working relationships or the involvement of a facilitator.

Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes.

OBJECTIVE: The aim of this study is to examine barriers and facilitators to care home staff delivering improved end-of-life care for people with dementia. METHOD: Individual qualitative interviews of 58 staff in a 120-bed nursing home where the staff and the residents' religion differed were carried out. Interviews continued until a maximum variation sample was achieved and theoretical saturation was reached. RESULTS: The staff felt warmly towards the residents and felt they could recognise when they were near death. Care staff, nurses and doctors did not see themselves as a team and communicated poorly with relatives about approaching death. The staff used opaque euphemisms and worried about being blamed. They were often unaware of or had concerns about the validity of advance care plans. They knew of the religious rituals around death but frequently misunderstood religious tradition. CONCLUSION: The staff require education and support about discussing and implementing plans around care at the end of life in dementia and about cultural issues around death to improve practice. This would enable the staff to implement advance care plans, knowing that they will be supported. Education would encompass communicating the complicated, unpredictable path of dementia near the time of death explicitly but sensitively, including recognising that people often do not hear difficult messages and are unable to take on large quantities of information at once. The staff need to know about the resident's religious and cultural ideas as well as ritual practice.

Laxative use in care homes.

AIM: This paper is a report of an investigation into the factors associated with laxative-taking by older people in care homes. BACKGROUND: Constipation is a common source of discomfort, pain and morbidity for care home residents, and laxative-taking is prevalent. Differences in the extent to which older people suffer from constipation may result from care routines rather than demographic or clinical factors. DATA SOURCES: Primary data were gathered from care records as part of a larger study in seven care homes (without on-site nursing) in London, England in 2003-2004. METHODS: Backward stepwise logistic regression modelling was used to investigate factors (age, sex, level of dependency [Barthel]), number of comorbidities, number of medications, constipating medications, length of stay in care home, diagnosis of dementia/Alzheimer disease) associated with regular laxative-taking. RESULTS: Of 168 residents, 99 (58.9%) were routinely given laxatives. Taking more medicines (moving up one category: 0, 1-2, 3-4, 5-6, > or = 7) increased the likelihood of taking laxatives more than threefold, after controlling for all other factors. Women were 2.9 times more likely to take laxatives than men. Having dementia/Alzheimer disease increased the likelihood of taking laxatives by 2.6 times. Laxative-taking was statistically significantly lower in two of the care homes. CONCLUSION: Laxative use amongst older people in care homes varies and may not be based on rational criteria. Nurses working in care homes and with care staff can help to implement appropriate bowel care for older people.

Clinical genetics and the Hutterite population: a review of Mendelian disorders.

The Hutterian Bretheren is an isolated population living on the North American prairies, the current community exceeding 40,000 in number. Their unique genetic history has contributed to a founder effect, which is reflected in the Mendelian disorders present in this population today. Genetic studies in the Hutterite population have led to the identification of a number of genes over the last several years and highlights the power of this population for gene identification. However, for the more than 30 autosomal recessive conditions currently recognized in this population, the gene or Hutterite specific mutation remains to be identified for over half and novel autosomal recessive syndromes continue to be recognized. This review summarizes what is currently understood about the molecular etiology of the Mendelian disorders and highlights the cardinal features of those disorders that are unique to or over-represented in this population.

Preoperative chemoradiotherapy using concurrent capecitabine and irinotecan in magnetic resonance imaging-defined locally advanced rectal cancer: impact on long-term clinical outcomes.

PURPOSE: To assess long-term clinical outcomes of preoperative chemoradiotherapy of magnetic resonance imaging (MRI)-defined locally advanced rectal adenocarcinoma using concurrent irinotecan and capecitabine. PATIENTS AND METHODS: One hundred ten patients without distant metastases entered this phase II trial North West/North Wales Clinical Oncology Group (NWCOG) -2 after MRI demonstration of tumor threatening (≤ 2 mm) or involving mesorectal fascia. Pelvic radiotherapy was given to 45 Gy in 25 fractions over 5 weeks with concurrent oral capecitabine at 650 mg/m(2) twice per day continuously days 1 through 35 and intravenous irinotecan at 60 mg/m(2) once weekly weeks 1 to 4. One hundred seven patients subsequently underwent surgical resection. RESULTS: Comparing prechemoradiotherapy MRI scans with histology of the resected specimen, 72 patients (67%) had their initial MRI T stage downstaged and 64 patients (80%) had their N stage downstaged. Twenty-four patients (22%) demonstrated a pathologic complete response (ypCR) and 98 patients (92%) demonstrated a negative circumferential resection margin (> 1 mm). Three-year local recurrence-free survival was 96.9%, metastasis-free survival (MFS) was 71.1%, disease-free survival was (DFS) 63.5%, and overall survival (OS) was 88.2%. By univariate analysis, lower histologic stage was significantly associated with superior MFS, DFS, and OS, whether expressed as ypT0-2 versus ypT3-4, ypN0 versus ypN1-2, or ypCR/microfoci (near-ypCR) versus other patients. By multivariate analysis both ypN stage (P = .048) and ypCR/microfoci/others (P = .013) remained significant predictors of DFS but only ypCR/microfoci/others for OS (P = .005) with no difference in outcome between ypCR compared to microfoci. CONCLUSION: This regimen demonstrates high response rates and promising long-term survival. Downstaging to ypCR/microfoci may be a useful short-term surrogate for long-term survival but needs validation in large phase III trials powered for survival outcomes.

It was not just a heatwave! Neuroleptic malignant-like syndrome in a patient with Parkinson's disease.

Neuroleptic malignant-like syndrome (NMLS) is a rare but life threatening and important complication because of the withdrawal of long-term l-Dopa therapy in Parkinson's disease patients. In this case report, we review the pathophysiology, clinical features and treatment of this curable condition.