Randomised controlled trial to evaluate early discharge scheme for patients with stroke.

OBJECTIVE: To assess the clinical effectiveness of an early discharge policy for patients with stroke by using a community based rehabilitation team. DESIGN: Randomised controlled trial to compare conventional care with an early discharge policy. SETTING: Two teaching hospitals in inner London. SUBJECTS: 331 medically stable patients with stroke (mean age 71) who lived alone and were able to transfer independently or who lived with a resident carer and were able to transfer with help. INTERVENTIONS: 167 patients received specialist community rehabilitation for up to 3 months after randomisation. 164 patients continued with conventional hospital and community care. MAIN OUTCOME MEASURES: Barthel score at 12 months. Secondary outcomes measured impairment with motoricity index, minimental state examination, and Frenchay aphasia screening test; disability with the Rivermead activity of daily living scales, hospital anxiety and depression scale, and 5 m walk; handicap with the Nottingham health profile; carer stress with caregiver strain index and patient and carer satisfaction. The main process measure was length of stay after randomisation. RESULTS: One year after randomisation no significant differences in clinical outcomes were found apart from increased satisfaction with hospital care in the community therapy group. Length of stay after randomisation in the community therapy group was significantly reduced (12 v 18 days; P < 0.0001). Patients with impairments were more likely to receive treatment in the community therapy group. CONCLUSIONS: Early discharge with specialist community rehabilitation after stroke is feasible, as clinically effective as conventional care, and acceptable to patients. Considerable reductions in use of hospital beds are achievable.     

The Stroke and Carer Optimal Health Program (SCOHP) to enhance psychosocial health: study protocol for a randomized controlled trial

BackgroundStroke is a leading cause of disability and distress, and often profoundly affects the quality of life of stroke survivors and their carers. With the support of carers, many stroke survivors are returning to live in the community despite the presence of disability and ongoing challenges. The sudden and catastrophic changes caused by stroke affects the mental, emotional and social health of both stroke survivors and carers. The aim of this study is to evaluate a Stroke and Carer Optimal Health Program (SCOHP) that adopts a person-centred approach and engages collaborative therapy to educate, support and improve the psychosocial health of stroke survivors and their carers.MethodsThis study is a prospective randomised controlled trial. It will include a total of 168 stroke survivors and carers randomly allocated into an intervention group (SCOHP) or a control group (usual care). Participants randomised to the intervention group will receive nine (8 + 1 booster) sessions guided by a structured workbook. The primary outcome measures for stroke survivors and carers will be health-related quality of life (AQoL-6D and EQ-5D) and self-efficacy (GSE). Secondary outcome measures will include: anxiety and depression (HADS); coping (Brief COPE); work and social adjustment (WSAS); carer strain (MCSI); carer satisfaction (CASI); and treatment evaluation (TEI-SF and CEQ). Process evaluation and a health economic cost analysis will also be conducted.DiscussionWe believe that this is an innovative intervention that engages the stroke survivor and carer and will be significant in improving the psychosocial health, increasing independence and reducing treatment-related costs in this vulnerable patient-carer dyad. In addition, we expect that the intervention will assist carers and stroke survivors to negotiate the complexity of health services across the trajectory of care and provide practical skills to improve self-management.

Trial registration

ACTRN12615001046594. Registered on 7 October 2015.     

Effects of living with and looking after survivors of a stroke.

Information from a two year, longitudinal study on a community sample of patients with acute stroke was analysed to determine the effects of the stroke on the mood of the chief carer (the person living with the patient). Increased anxiety was the most commonly reported change six months after stroke. Significant depression was seen in 11-13% of carers over the first two years after stroke. The patient''s functional disability was associated with depression in the carer over the first year but not at two years. A perceived poor recovery by the patient, a low level of general activities by the patient, and depression in the patient were also associated with depression in the carer within the first year. At two years after stroke none of the measured factors were related to a carer''s level of depression. Carers of patients who have suffered stroke showed anxiety and emotional distress unrelated to the patient''s physical disability after two years. More help from stroke support groups for carers is perhaps needed.     

Effect of a training programme to reduce stress in carers of patients with dementia.

OBJECTIVE--To reduce the psychological stress and improve the skills in coping of people who care for relatives with dementia. DESIGN--Assessment and suitability of carers by questionnaire; assessment of patients and carers in a hospital outpatient clinic; allocation to groups according to date of application to study. Linkage of groups of four carers and programme coordinator by telephone conference calls over 12 months after programmes. Reassessment at three, six, 12, and, for those in the "wait list" group, 18 months. SETTING--The programmes were conducted in the psychiatry unit of a Sydney teaching hospital. SUBJECTS--Eligible patients were less than 80 years old, had mild to moderate dementia, and lived at home with their carer. Of the 96 patient-carer pairs in the study, 33 were in the dementia carers'' programme group, 31 were in the memory retraining group, and 32 were in the wait list group. INTERVENTIONS--Carers in the dementia carers'' programme received training in coping with the difficulties of looking after patients with dementia while the patients had sessions in subjects such as memory retraining. In the memory retraining programme patients were admitted and received the patient component of the carers'' programme while their carers had 10 days'' respite. In the wait list group carers waited six months before undertaking the carers'' programme. MAIN OUTCOME MEASURES--Effect of the programmes on carers'' general health questionnaire scores and the rate of placement of patients in institutions. RESULTS--At 12 months'' follow up the carers'' programme had resulted in significantly lower psychological stress among carers than the memory retraining programme (mean (SD) general health questionnaire scores at 0 months were 6.31 (6.23) and 3.60 (6.25) respectively, and at 12 months were 4.69 (5.58) and 7.40 (9.39); p less than 0.05.) In the wait list group distress scores remained stable, even after the carers and patients had undertaken the carers'' programme. Patients deteriorated over 12 months regardless of group allocation, but at 30 months, allowing for patients who died and could not be included in the analysis, 65% of patients in the carers'' programme group were still living at home compared with 26% in the memory retraining programme group. CONCLUSION--The intensive intervention programme described for carers of patients with dementia can reduce the psychological morbidity of the carer and delay the placement of the patient in an institution without increasing the use of health services by either patient or carer.     

Home based care and standard hospital care for patients with severe mental illness: a randomised controlled trial.

OBJECTIVE--To compare the efficacy of home based care with standard hospital care in treating serious mental illness. DESIGN--Randomised controlled trial. SETTING--South Southwark, London. PATIENTS--189 patients aged 18-64 living in catchment area. 92 were randomised to home based care (daily living programme) and 97 to standard hospital care. At three months'' follow up 68 home care and 60 hospital patients were evaluated. MAIN OUTCOME MEASURES--Use of hospital beds, psychiatric diagnosis, social functioning, patients'' and relatives'' satisfaction, and activity of daily living programme staff. RESULTS--Home care reduced hospital stay by 80% (median stay six days in home care group, 53 days in hospital group) and did not increase the number of admissions compared with hospital care. On clinical and social outcome there was a non-significant trend in favour of home care, but both groups showed big improvements. On the global adjustment scale home care patients improved by 26.8 points and the hospital group by 21.6 points (difference 5.2; 95% confidence interval -1.5 to 12). Other rating scales showed similar trends. Home care patients required a wide range of support in areas such as housing, finance, and work. Only three patients dropped out from the programme. CONCLUSIONS--Home based care may offer some slight advantages over hospital based care for patients with serious mental illness and their relatives. The care is intensive, but the low drop out rate suggests appreciation. Changes to traditional training for mental health workers are required.     

Specialist nurse support for patients with stroke in the community: a randomised controlled trial.

OBJECTIVE--To evaluate whether specialist nurse visits enhance the social integration and perceived health of patients with stroke or alleviate stress in carers in longer term stroke care. DESIGN--Stratified randomised controlled trial; both groups assessed at time of recruitment and at 3, 6, and 12 months. SETTING--Patients with disability related to new stroke who lived in their own homes in the Bradford Metropolitan District. SUBJECTS--240 patients aged 60 years or over, randomly allocated to control group (n = 120) or intervention group (n = 120). Intervention--Visits by specialist outreach nurses over 12 months to provide information, advice, and support; minimum of six visits during the first six months. The control group received no visits. MAIN OUTCOME MEASURES--The Barthel index (functional ability), the Frenchay activities index (social activity), the Nottingham health profile (perceived health status). Stress among carers was indicated by the general health questionnaire-28 (28 items). The nurses recorded their interventions in trial diaries. RESULTS--There were no significant differences in perceived health, social activities, or stress among carers between the treatment and control groups at any of the assessments points. A subgroup of mildly disabled patients with stroke (Barthel index 15-19) had an improved social outcome at six months (Frenchay activities index, Median difference 3 (95% confidence interval 0 to 6; P = 0.03) and for the full 12 months of follow up (analysis of covariance P = 0.01) compared with the control group. CONCLUSIONS--The specialist nurse intervention resulted in a small improvement in social activities only for the mildly disabled patients. No proved strategy yet exists that can be recommended to address the psychosocial difficulties of patients with stroke and their families.     

A randomized controlled trial investigation of a non-stimulant in attention deficit hyperactivity disorder (ACTION): Rationale and design

Background

Patients with delirium and dementia admitted to general hospitals have poor outcomes, and their carers report poor experiences. We developed an acute geriatric medical ward into a specialist Medical and Mental Health Unit over an eighteen month period. Additional specialist mental health staff were employed, other staff were trained in the 'person-centred' dementia care approach, a programme of meaningful activity was devised, the environment adapted to the needs of people with cognitive impairment, and attention given to communication with family carers. We hypothesise that patients managed on this ward will have better outcomes than those receiving standard care, and that such care will be cost-effective.

Methods/design

We will perform a controlled clinical trial comparing in-patient management on a specialist Medical and Mental Health Unit with standard care. Study participants are patients over the age of 65, admitted as an emergency to a single general hospital, and identified on the Acute Medical Admissions Unit as being 'confused'. Sample size is 300 per group. The evaluation design has been adapted to accommodate pressures on bed management and patient flows. If beds are available on the specialist Unit, the clinical service allocates patients at random between the Unit and standard care on general or geriatric medical wards. Once admitted, randomised patients and their carers are invited to take part in a follow up study, and baseline data are collected. Quality of care and patient experience are assessed in a non-participant observer study. Outcomes are ascertained at a follow up home visit 90 days after randomisation, by a researcher blind to allocation. The primary outcome is days spent at home (for those admitted from home), or days spent in the same care home (if admitted from a care home). Secondary outcomes include mortality, institutionalisation, resource use, and scaled outcome measures, including quality of life, cognitive function, disability, behavioural and psychological symptoms, carer strain and carer satisfaction with hospital care. Analyses will comprise comparisons of process, outcomes and costs between the specialist unit and standard care treatment groups.

Trial Registration number

ClinicalTrials.gov: NCT01136148     

Terminal cancer care and patients' preference for place of death: a prospective study.

OBJECTIVE--To assess the preference of terminally ill patients with cancer for their place of final care. DESIGN--Prospective study of randomly selected patients with cancer from hospital and the community who were expected to die within a year. Patients expected to live less than two months were interviewed at two week intervals; otherwise patients were interviewed monthly. Their main carer was interviewed three months after the patient''s death. SETTING--District general hospital, hospices, and patients'' homes. MAIN OUTCOME MEASURE--Stated preferred place of final care; actual place of death; reason for final hospital admission for those in hospital; community care provision required for home care. RESULTS--Of 98 patients approached, 84 (86%) agreed to be interviewed, of whom 70 (83%) died during the study and 59 (84%) stated a preferred place of final care: 34 (58%) wished to die at home given existing circumstances, 12 (20%) in hospital, 12 (20%) in a hospice, and one (2%) elsewhere. Their own home was the preferred place of care for 17 (94%) of the patients who died there, whereas of the 32 patients who died in hospital 22 (69%) had stated a preference to die elsewhere. Had circumstances been more favourable 67% (41) of patients would have preferred to die at home, 16% (10) in hospital, and 15% (9) in hospice. CONCLUSION--With a limited increase in community care 50% more patients with cancer could be supported to die at home, as they and their carers would prefer.     

Factors affecting early unplanned readmission of elderly patients to hospital.

A random sample of 133 elderly patients who had an unplanned readmission to a district general hospital within 28 days of discharge from hospital was studied and compared with a matched control sample of patients who were not readmitted. The total group was drawn from all specialties in the hospital, and by interviewing the patients, their carers, the ward sisters, and the patients'' general practitioners the factors causing early unplanned readmission for each patient were identified. Seven possible principal reasons were found: relapse of original condition, development of a new problem, carer problems, complications of the initial illness, need for terminal care, problems with medication, and problems with services. There were also contributory reasons, and it was usual for several of these to be present in each case. The unplanned readmission rate was 6%; the planned readmission rate was 3%. It was thought that unplanned readmission was avoidable for 78 (59%) patients. Patients in the study group and in the control group showed significant differences in certain characteristics--such as low income, previous hospital admission, already having nursing care, and admission by general practitioners--and this might help to identify patients who are likely to be readmitted in an emergency.     

Reliability and validity of a new measure of patient satisfaction with out of hours primary medical care in the United Kingdom: development of a patient questionnaire.

OBJECTIVE: To develop a reliable, valid measure of patient satisfaction with out of hours care suitable for large scale service evaluation. DESIGN: Focus group meetings and semistructured interviews with patients to identify issues of importance to patients and possible questionnaire items; interviews and two pilot studies to test and identify new questionnaire items; modification or removal of items to eliminate ambiguity and reduce non-response and skewed responses; questionnaire survey of out of hours care. SETTING: Greater Manchester and Leicester. SUBJECTS: 11 general practice patients participated in the focus groups and 28 in the semistructured interviews; 41 in the preliminary interviews; 41 and 378 in the postal pilots; and 1466 in the survey of out of hours care. RESULTS: A 32 item questionnaire was developed. Component analysis indicated seven scales (satisfaction with communication and management, doctor''s attitude, continuity of care, delay until visit, access to out of hours care, initial contact person, telephone advice) related to overall satisfaction and containing issues identified as important to patients. Levels of reliability were satisfactory, Cronbach''s alpha correlation coefficient exceeding 0.60 for all scales. CONCLUSION: A reliable, valid measure of patient satisfaction has been developed, suitable for large scale evaluation of out of hours care.     

The Bradford community stroke trial: results at six months.

OBJECTIVE--Comparison of day hospital attendance and home physiotherapy for stroke patients leaving hospital to determine which service produces greater functional and social improvement for the patient, reduces emotional stress for the care giver, and lessens the need for community support. DESIGN--Stratified, randomised trial of stroke patients attending day hospital two days a week or receiving home treatment from a community physiotherapist. The six month assessment results are reported in this paper. SUBJECTS--Patients over 60 years old resident within the Bradford metropolitan district discharged home after a new stroke with residual disability. SETTING--Four day hospitals in two health authorities and domiciliary work undertaken by experienced community physiotherapists. MAIN OUTCOME MEASURES--Barthel index, functional ambulatory categories, Motor Club assessment, Frenchay activities index, and Nottingham health profile were used. Carers'' stress was indicated by the general health questionnaire. Treatment given and community care provided were recorded. RESULTS--Of 124 patients recruited, 108 were available for reassessment at six months. Both treatment groups had significantly improved in functional abilities between discharge and six months. The improvements were significantly greater for patients treated at home (Mann-Whitney test; Barthel index, median difference 2 (95% confidence interval 0 to 3) p = 0.01; Motor Club assessment, median difference 2 (1 to 5), p = 0.01). The home treated patients received less treatment (median difference 16 (11 to 21) treatments, p less than 0.001). More than a third of patients in both groups showed depressed mood, and a quarter of care givers were emotionally distressed. CONCLUSIONS--Home physiotherapy seems to be slightly more effective and more resource efficient than day hospital attendance and should be the preferred rehabilitation method for aftercare of stroke patients. New strategies are needed to address psychosocial function for both patients and care givers.     

Postal survey of patients' satisfaction with a general practice out of hours cooperative.

OBJECTIVE: To assess patients'' satisfaction with out of hours care by a general practice cooperative compared with that by a deputising service. DESIGN: Postal questionnaire survey. SETTING: A general practice cooperative in London and a deputising service operating in an overlapping area. SUBJECTS: Weighted samples of patients receiving telephone advice, a home visit, or attending a primary care centre after contacting either service in an eight week period. MAIN OUTCOME MEASURES: Patients'' overall satisfaction and scores for specific aspects of satisfaction. Satisfaction with telephone advice or attendance at centre compared with home visit. Relation between satisfaction and patient''s age, sex, ethnic group, car ownership, preference for consulting own doctor, and expectation of a visit. RESULTS: The overall response rate was 67% (1555/2312). There was little difference in overall satisfaction between patients contacting the cooperative or the deputising service, but patients contacting the latter were less satisfied with the explanation and advice received and the wait for a visit. There were significant differences between patients in different age and ethnic groups, with white patients and those aged over 60 years being more satisfied. Lower scores for overall satisfaction were reported by patients who received telephone advice, those who would have preferred to see their own doctor or who originally wanted a home visit, and those who waited longer for their consultation. Overall levels of patients'' satisfaction seemed to be lower than previously reported. CONCLUSIONS: There were larger differences in satisfaction between different groups of patients than between different models of organisation for out of hours care. A shift to a service based predominantly on telephone advice may lead to increased patient dissatisfaction.     

Standardised measures of needs,stigma and informal care in schizophrenia using a bottom-up,cross-cultural approach

Background There is a lack of instruments to measure the needs, stigma and informal care of people with schizophrenia that take account of sociocultural variation and patients'' and formal and informal carers'' opinions and experiences.Aims To develop questionnaires to measure stigma, needs and informal (non-professional) care for people with schizophrenia.Method We undertook the study in seven countries and in English, Spanish and Portuguese. We first held focus group discussions with patients, formal carers (professionals) and informal carers (family and friends) in Spain, the UK, Argentina, Brazil, Chile and Venezuela to elicit the main dimensions of needs, stigma and informal care. We then held nominal group discussions about these dimensions with patients, family members and professionals in Spain, Portugal and the UK, to develop the instruments.Results Three hundred and three people participated in 46 focus groups and results were discussed in three nominal groups, each involving eight participants. Three instruments were developed in this iterative process: needs for care (46 items), stigma (38 items) and informal care (20 items).Conclusions These instruments are based on service users'' and carers'' views and experiences and have cross-cultural validity. They will have application in assessment of outcomes for people with schizophrenia and their families.     

The health and cost effects of substituting home care for inpatient acute care: a review of the evidence

BACKGROUND: There is much interest in reducing hospital stays by providing some health care services in patients'' homes. The authors review the evidence regarding the effects of this acute care at home (acute home care) on the health of patients and caregivers and on the social costs (public and private costs) of managing the patients'' health conditions. METHODS: MEDLINE and HEALTHSTAR databases were searched for articles using the key term "home care." Bibliographies of articles read were checked for additional references. Fourteen studies met the selection criteria (publication between 1975 and early 1998, evaluation of an acute home care program for adults, and use of a control group to evaluate the program). Of the 14, only 4 also satisfied 6 internal validity criteria (patients were eligible for home care, comparable patients in home care group and hospital care group, adequate patient sample size, appropriate analytical techniques, appropriate health measures and appropriate costing methods). RESULTS: The 4 studies with internal validity evaluated home care for 5 specific health conditions (hip fracture, hip replacement, chronic obstructive pulmonary disease [COPD], hysterectomy and knee replacement); 2 of the studies also evaluated home care for various medical and surgical conditions combined. Compared with hospital care, home care had no notable effects on patients'' or caregivers'' health. Social costs were not reported for hip fracture. They were unaffected for hip and knee replacement, and higher for COPD and hysterectomy; in the 2 studies of various conditions combined, social costs were higher in one and lower in the other. Effects on health system costs were mixed, with overall cost savings for hip fracture and higher costs for hip and knee replacement. INTERPRETATION: The limited existing evidence indicates that, compared with hospital care, acute home care produces no notable difference in health outcomes. The effects on social and health system costs appear to vary with condition. More well-designed evaluations are needed to determine the appropriate use of acute home care.     

The psychological and social effects of myocardial infarction on wives.

Eighty-two wives of men suffering a first myocardial infarction were interviewed while their husbands were in hospital, and again two months and a year after they went home. The wives had substantial and persistent psychological symptoms, and the husbands'' illness had continuing effects on their work, leisure and social activities, and family life and marriage, their psychosocial disability being comparable to that of the patients. Measures of psychosocial adjustment before the illness and the quality of the marriage and of family life were good predictors of outcome for the wives. The women had a major role in the patients'' readjustment during convalescence, and their attitudes and behaviour as well as the general quality of family life were important determinants of the rate and extent of the patients'' recovery. The wives of patients with myocardial infarction should have more practical help and advice during the hospital period, and the whole family should be given advice and help throughout the convalescence.     

Behind the screens: care staff observations on delivery of oral health care in nursing homes

Objective: To identify qualitatively carer staff attitudes, practices and clinical comments related to oral health care of functionally dependent nursing home clients. Design: Open-ended questions included in a longer quantitative questionnaire. Setting: 22 randomly selected nursing homes in the Bristol area. Subjects: 416 carers employed in these homes. Results: The majority of carers thought that clients had a right to good oral health, accepted the carers' role in helping clients with oral and denture hygiene, but recognised that oral health care provision was deficient. However, some carers believed oral health care to be solely the clients' responsibility despite high disability levels. Main barriers to providing oral health care were low prioritisation of oral health by nursing management, lack of co-operation from cognitively impaired clients, and lack of training. Carers were critical of homes' lack of arrangements for routine professional dental cheeks, lack of commitment to staff training, low standards of oral health care by colleagues, and lack of provision of oral hygiene aids and cleansing materials for clients. Many responses indicated ways in which nursing home oral health care could be improved. Carers reported contrasting experiences of dental treatment, and deplored recent decreased availability of subsidised dental care. Conclusions: Carers' generally positive attitudes towards clients' oral health care should encourage health educators. Insights gained from qualitative data can help to identify the less obvious causes for poor oral care delivery, which can then be addressed in education and training initiatives in nursing home settings.     

Should breast reduction surgery be rationed? A comparison of the health status of patients before and after treatment: postal questionnaire survey.

OBJECTIVES: To assess the health status of patients before and after breast reduction surgery and to make comparisons with the health status of women in the general population. DESIGN: Postal questionnaire survey sent to patients before and six months after surgery. SETTING: The three plastic surgery departments in the Oxford Regional Health Authority, during April to August 1993. SUBJECTS: 166 women (over the age of 16 years) referred for breast reduction; scores from the "short form 36" (SF-36) health questionnaire completed by women in the 1991-2 Oxford healthy life survey. MAIN OUTCOME MEASURES: Health status of breast reduction patients before and after surgery as assessed by the SF-36, the 28 item general health questionnaire, and Rosenberg''s self esteem scale; comparisons between the health status of breast reduction patients and that of women in the general population; outcome of surgery as assessed retrospectively by patients. RESULTS: Differences between the health status of breast reduction patients and that of women in the general population were detected by the SF-36 both before and after surgery. Breast reduction surgery produced substantial change in patients'' physical, social, and psychological function. The proportion of cases of possible psychiatric morbidity according to the general health questionnaire fell from 41% (22/54) before surgery to 11% (6/54) six months after treatment. Eighty six per cent (50/58) of patients expressed great satisfaction with the surgical result postoperatively. CONCLUSION: The study provides empirical evidence that supports the inclusion of breast reduction surgery in NHS purchasing contracts.     

Continuity of care in general practice: effect on patient satisfaction.

OBJECTIVE--To evaluate the influence of continuity of care on patient satisfaction with consultations. DESIGN--Direct and episodic specific evaluation of patient satisfaction with recent consultation. SETTING AND SUBJECTS--A representative sample of 3918 Norwegian primary care patients were asked to evaluate their consultations by filling in a questionnaire. The response rate was 78%. MAIN OUTCOME MEASURES--The patient''s overall satisfaction with the consultation was rated on a six point scale. Continuity of care was recorded as the duration and intensity of the present patient-doctor relationship and as patients'' perception of the present doctor being their personal doctor or not. RESULTS--The multivariate analysis indicated that an overall personal patient-doctor relationship increased the odds of the patient being satisfied with the consultation sevenfold (95% confidence interval 4.9 to 9.9) as compared with consultations where no such relationships existed. The duration of the patient-doctor relationship had a weak but significant association with patient satisfaction, while the intensity of contacts showed no such association. CONCLUSION--Personal, continuous care is linked with patient satisfaction. If patient satisfaction is accepted as an integral part of quality health care, reinforcing personal care may be one way of increasing this quality.     

Abuse of elderly people by their carers.

OBJECTIVE--To assess the prevalence of abuse of elderly people by their carers and the characteristics of abusers and the abused. DESIGN--Information on abuse and risk factors was collected over six months from carers and patients. Risk factors were identified in the abused group and compared with those in a non-abused control group. SETTING--Carers were interviewed at home; patients were examined in the wards of Putney and Barnes geriatric hospitals, London. SUBJECTS--All patients referred from any source for respite care to the geriatric services over a six month period and their carers. MAIN OUTCOME MEASURES--Amount of physical and verbal abuse or neglect. Quantification of risk factors and correlation with the presence or absence of abuse. RESULTS--45% Of carers openly admitted to some form of abuse. Few patients admitted abuse. The most significant risk factor for physical abuse was alcohol consumption by the carer (p less than 0.001). Other significant risk factors were a poor pre-morbid relationship and previous abuse over many years. Abuse was often reciprocated and was associated with social dysfunction in many patients. Service delivery, respite care, and level of mental and physical disability were not significantly associated with abuse. CONCLUSION--The high level of abuse found in elderly patients in respite care was particularly associated with alcohol abuse and long term relationships of poor quality, which are difficult to change. Even with increased provision of services, care in the community may not be the best solution for these people.     

Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

MethodsA cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ. We assessed how closely carers’ choices resembled the PWD’s preferences for treatment in three proposed health states: the here and now; severe stroke with coma; terminal cancer. Agreement between the PWD and their family carer responses was assessed using Kappa and Prevalence-Adjusted Bias-Adjusted Kappa (PABAK) statistics. We examined whether carer burden and distress, and relationship quality, influenced agreement.ResultsIn interviews PWD were able to indicate their treatment preferences across all three scenarios. In the here-and-now most wanted antibiotics (98%), fewer cardio-pulmonary resuscitation (CPR) (50%) and tube feeding (47%). In severe stroke and coma antibiotics remained the more preferred treatment (88%), followed by CPR (57%) and tube feeding (30%). In advanced cancer PWD expressed lower preferences for all treatments (antibiotics 68%; CPR 50%; tube feeding 37%). Carers’ choices were similar to the PWDs’ preferences in the here-and-now (71% (k = 0.03; PABAK = 0.4) with less agreement for future hypothetical health states. In severe stroke and coma carers tended wrongly to suggest that the PWD preferred more intervention (antibiotic, 67%; k = -0.022; PABAK = -0.60; CPR, 73%; k = 0.20; PABAK = -0.20, tube feeding, 66%; k = 0.25; PABAK = -0.12). In advanced cancer the agreement between PWD and carers was low (antibiotics; k = -0.03; PABAK = -0.52; CPR, k = -0.07; PABAK = -0.45; tube feeding; k = 0.20; PABAK = -0.22). However, both PWD and carers showed marked uncertainty about their preferences for end of life treatment choices. Relationship quality, carer distress and burden had no influence on agreement.ConclusionsThis study is the first to have used the LSPQ with PWD in the UK to consider treatment options in hypothetical illness scenarios. Key finding are that family carers had a low to moderate agreement with PWD on preferences for end of life treatment. This underscores how planning for care at the end of life is beset with uncertainty, even when the carer and PWD perceive the care-giving/receiving relationship is good. Families affected by dementia may benefit from early and ongoing practical and emotional support to prepare for potential changes and aid decision making in the context of the realities of care towards the end of life.