Julie Kinley

Current prevalence of dementia, depression and behavioural problems in the older adult care home sector: the South East London Care Home Survey

BACKGROUND a large and increasing number of older people in the UK are living in care homes. Dementia is a frequent reason underlying admission and determining care needs, but prevalence data are becoming increasingly outdated and reliant on brief screening instruments. OBJECTIVE to describe the prevalence and severity of dementia, depression, behavioural problems and relevant medication use in a representative sample of residential and nursing care home residents. DESIGN/SETTING a survey conducted in 15 randomly selected South East London care homes. Consensus clinical dementia diagnoses were made from multi-source information, and the Clinical Dementia Rating (CDR) Scale applied. Depression was ascertained using the Cornell Depression in Dementia Scale and psychological/behavioural problems using the Neuropsychiatric Inventory (NPI). PARTICIPANTS three hundred and one residents with a mean (SD) age of 83.5 (9.8) and 65.8% female were included. RESULTS dementia (CDR 1-3) prevalence was 75.1% overall, 55.8% in residential homes, 91.0% in residential elderly mentally infirm care and 77.0% in nursing homes. Depression prevalences were 26.5, 22.0 and 29.6%, respectively, and mean (95% CI) NPI severity scores 3.99 (3.47-4.50), 6.34 (5.29-7.39) and 6.10 (5.50-6.70) with 87.3% of the sample exhibiting at least one NPI symptom. Antidepressants were prescribed in 25.6, 25.0 and 41.3%, respectively, and antipsychotics in 7.0, 34.1 and 19.1%. CONCLUSION dementia is substantially more common in care homes than recorded diagnoses would suggest, but studies using brief screening instruments may overestimate prevalence. High prevalences of depressive and/or behavioural symptoms and psychotropic use suggest significant unmet need.

The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: A cluster randomised controlled trial

Background: The provision of quality end-of-life care is increasingly on the national agenda in many countries. In the United Kingdom, the Gold Standards Framework for Care Homes programme has been promoted as a national framework for improving end-of-life care. While its implementation is recommended, there are no national guidelines for facilitators to follow to undertake this role. Aim: It was hypothesised that action learning alongside high facilitation when implementing the Gold Standards Framework for Care Homes programme will result in a reduced proportion of hospital deaths for residents and improvement in the care home staff ability to facilitate good end-of-life care. Design: A cluster randomised controlled trial where 24 nursing homes received high facilitation to enable them to implement the Gold Standards Framework for Care Homes programme. The managers of 12 nursing homes additionally took part in action learning sets. A third group (14 nursing homes) received the ‘standard’ Gold Standards Framework for Care Homes facilitation available in their locality. Setting/participants: In total, 38 nursing homes providing care for frail older people, their deceased residents and their nurse managers. Results: A greater proportion of residents died in those nursing homes receiving high facilitation and action learning but not significantly so. There was a significant association between the level of facilitation and nursing homes completing the Gold Standards Framework for Care Homes programme through to accreditation. Year-on-year change occurred across all outcome measures. Conclusion: There is a danger that without national guidelines, facilitation of the Gold Standards Framework for Care Homes programme will vary and consequently so will its implementation. The nurse manager of a care home must be actively engaged when implementing the Gold Standards Framework for Care Homes programme.

The effect of policy on end-of-life care practice within nursing care homes: A systematic review

Background: The number of older people in the UK is increasing. A significant proportion of end of life care for this population is currently provided and will increasingly be provided within nursing care homes. Aim: To identify the impact of implementing end of life care policy with regard to the use of the Gold Standards Framework in Care Homes programme, the Liverpool Care Pathway (or an Integrated Care Pathway) and educational/training interventions to support the provision of end of life care within nursing care homes within the UK. Design: Systematic literature review of published literature and reports. Data sources: An electronic search was undertaken of five databases-Medline, CINAHL, EMBASE, Web of Science and the Cochrane library and websites of government and palliative care organisations for papers and reports published between 2000 to June 2010. The reference lists of studies that were retrieved for the detailed evaluation were hand-searched for any additional relevant citations.. Only studies that included comparative outcome data were eligible for inclusion. Results: Eight papers/reports, incorporating information from three studies were identified. Two studies reported on the implementation of the Gold Standards Framework in Care Homes programme and one the implementation of an Integrated Care Pathway for the last days of life. Improvements occurred in resident outcomes and in relation to staff recognising, managing and meeting residents needs for end of life care. Conclusions: The studies provided limited evidence on improved outcomes following the implementation of these interventions. Further research is needed, both within the UK and internationally, that measures the process and impact of implementing these initiatives.

The cost of providing end of life care for nursing care home residents: A retrospective cohort study

Background The proportion of people dying in long-term care institutions is predicted to increase in future years. Establishing the costs associated with the provision of such care is important as it represents a potentially increasing burden. Aim This study describes the end of life healthcare costs for nursing home residents. The study also explores the effects of resident characteristics on costs, through regression modelling. Setting This study took place in south-east England. Participants Thirty-eight nursing care homes took part in the study, comprising 2444 individual residents. Methods Using a retrospective cohort design, end of life service use was recorded from residents’ nursing care home notes. In this study, end of life was defined as the last six months of life, or from time of residency if this was less than six months. Costs were calculated assuming a healthcare payer perspective. Results The total mean healthcare cost per resident was £3906. Hospital stays accounted for two-thirds (67%) of these costs. Fifty-six percent of these hospital stays occurred in the final month of life. Death in hospital vs. in the nursing care home was associated with an average increase in costs of £4223. Conclusions Death in hospital is costly, and is seldom identified as a preferred place of death. Therefore, interventions are needed which help nursing care home staff to identify when an individual is dying, and have the skill and confidence to make difficult decisions regarding care provision at the end of life.

Family perceptions of care at the end of life in UK nursing care homes

Background Over a fifth of the population of developed countries die in care homes. While studies are emerging on the outcomes of care in the last few weeks of life, few report on the experience as perceived by the family members. Methods As part of a wider study to improve the delivery of end-of-life care, bereaved relatives of residents who had died in a care home/hospital were sent the Family Perception of Care Scale questionnaire to evaluate their experience of care provision for their relative in the last month of life. The Family Perception of Care Scale questionnaire was posted to bereaved relatives, from 37 nursing care homes in south-east England, 3–6 months following the resident’s death. The questionnaires were posted over a 14-month period from 1 October 2009 to 31 November 2010. Results A total of 869 questionnaires were posted, with a 42% response rate. A global question within the Family Perception of Care Scale looking at the overall satisfaction with the quality of end-of-life care (Q24) indicated that bereaved relatives were satisfied with the care provided. Qualitative responses from family members highlighted some excellent care, although issues in relation to medical input, professional teamwork, last days of life and spiritual care remain problematic. Results provide an important insight into care provision at the end of life within these care homes. Conclusion While some issues can be addressed through education, relationships and value-based issues are likely to be more difficult to address in light of increasing pressure of healthcare support for UK care homes.

Development and implementation of the Steps to Successful Palliative Care programme in residential care homes for people with a learning disability

BACKGROUND: For health and social care services to meet the needs of a growing and ageing population they need to respond appropriately. This response is only going to be possible if attention is paid to the individuals within it. This includes those people living with a learning disability (LD). AIMS: To develop and implement a palliative care programme that would meet the needs of people with a LD, their families and care home staff. METHODS: A palliative care programme and resource folder was created following a literature review and meetings with LD and specialist palliative care experts, organisations and care home managers. This folder was further developed collaboratively throughout the programmes implementation. FINDINGS: 39 homes were recruited and 86% completed the programme. CONCLUSIONS: This programme enabled the identification, assessment and management of the health and social care needs of people living and dying in a care home with a LD.

P-23 The delicate art of communication: using bereaved relatives’ views to assess and improve end of life care in care homes through a multi-centre audit

Introduction More people receive care in care homes than in hospitals in the UK. Recent statistics show that 21% of this population die in care homes (NEoLCIN 2013). A hospice-based Care Home Support Team helps their local care homes to implement an end of life care programme, in order to enable care home staff to become more confident and skilled in providing such care. Since 2013, 49 homes have been participating in an audit using the Family Perception of Care (FPC) scale, to assess and develop the quality of their end of life care provision using bereaved family members’ views. Aims To measure satisfaction with the quality of care given to residents dying in the care home during their last month of life using bereaved carer’s views, and to develop and improve end of life care in participating homes. Methods This multi-centre audit uses anonymous postal questionnaires based on the FPC Scale (a validated tool) sent to bereaved relatives three months after resident deaths. Responses are analysed using SPSS. Reports are prepared six monthly and action plans then agreed with individual care homes. Results From 510 eligible deaths during the first year of this audit there were 224 returned questionnaires, a response rate of 44%. Over 80% showed high overall satisfaction with end of life care given, especially around treating the resident with dignity and staff friendliness. Items with less agreement included being given information about care options and what to expect as death approaches, alongside access to GPs and Chaplaincy services. Conclusion Participating care homes are providing very good end of life care: but addressing some common issues would improve care further. Access to GPs and chaplaincy may be slightly outside the care home control, but better communication and availability of appropriate written information would probably ameliorate the situation.