Elspeth Mathie

Potentially inappropriate prescribing in older people with dementia in care homes: a retrospective analysis.

AbstractBackground: Older people in general and care home residents in particular are at high risk of suboptimal or inappropriate prescribing. To date, research into potentially inappropriate prescribing (PIP) has not focused on care home residents and/or has not utilized the recently developed and validated Screening Tool of Older Persons’ potentially inappropriate Prescriptions (STOPP) criteria. Objective: The aim of this study was to estimate the prevalence of PIP in older people with dementia living in six residential care homes in England, using the STOPP criteria. Methods: A retrospective analysis was conducted using medication data collected for older people with dementia in six residential care homes in England who participated in the prospective, longitudinal EVIDEM — End of Life (EoL) study. Of the 133 residents recruited to the study, medication administration records were available for and reviewed at two timepoints (approximately 16 weeks apart) for 119 residents and 110 residents, respectively. The prevalence of PIP at these timepoints was determined using 31 of the 65 STOPP criteria applicable when there is no access to residents’ medical records. Results: At the first timepoint, 68 potentially inappropriate medications (PIMs) were identified. Fifty-five residents (46.2%) were prescribed one or more PIM(s), eleven (9.2%) were prescribed two or more PIMs and two (1.7%) were prescribed three PIMs. Thirteen of the 31 STOPP criteria utilized in this study (41.9%) were used to identify PIP. Long-term (i.e. >1 month) neuroleptics (antipsychotics) were the most frequently prescribed PIMs (n = 25; 21.0%), followed by non-steroidal anti-inflammatory drugs (NSAIDs) for >3 months, proton pump inhibitors (PPIs) at maximum therapeutic dosage for >8 weeks, tricyclic antidepressants (TCAs) in patients with dementia and long-term (i.e. >1 month), long-acting benzodiazepines.At the second timepoint, 57 PIMs were identified; 45 residents (40.9%) were prescribed one or more PIM(s) and 10 (9.1%) were prescribed two or more PIMs, but only one resident (0.9%) was prescribed three PIMs. Of the 31 STOPP criteria utilized in this study, ten (32.3%) were used to identify PIP. Long-term (i.e. >1 month) antipsychotics were again the most frequently prescribed PIMs (n = 21; 19.1%), followed by PPIs at maximum therapeutic dosage for >8 weeks, NSAIDS for >3 months and TCAs in patients with dementia.A significant correlation was found at both timepoints between the number of medicines prescribed and occurrence of PIP. Conclusions: This study found that over two-fifths of older people with dementia residing in six residential care homes in England were prescribed at least one PIM at each timepoint. Long-term (i.e. >1 month) antipsychotics, NSAID use for >3 months and PPI use at maximum therapeutic dosage for >8 weeks were the most prevalent PIMs. Regular medication review that targets, but is not limited to, these medications is required to reduce PIP in the residential care home setting. The STOPP criteria represent a useful tool to facilitate such review in this patient population.

An uncertain future: The unchanging views of care home residents about living and dying

Background: Older people living in a care home have a limited life expectancy, and care homes are an important setting for end-of-life care provision. Aim: This research aimed to explore the views, experiences and expectations of end-of-life care among care home residents to understand if key events or living in a residential environment influenced their views. Design: The research used a prospective design. The paper draws on the qualitative interviews of 63 care home residents who were interviewed up to three times over a year. This was a sub-sample of the larger data set of 121 care home residents. Setting/Participants: The residents were recruited from six care homes (providing personal care with no on-site nursing) in the UK. Results: Four main themes were identified; Living in the Past, Living in the Present, Thinking about the Future and Actively Engaged with planning the future. Many residents said they had not spoken to the care staff about end-of-life care; many assumed their family or General Practitioner would take responsibility. Conclusions: Core to the older person’s ability to discuss end-of-life care is their acceptance of being in a care home, the involvement of family members in making decisions and the extent to which they believed they could influence decision making within their everyday lives. Advance care plans should document ongoing dialogue. These findings can inform how primary health and palliative care services introduce, discuss and tailor existing frameworks and programmes of end-of-life care.

‘Seamless care? Just a list would have helped!’ Older people and their carer’s experiences of support with medication on discharge home from hospital

Background  Many older people use one or more prescribed medicines on a daily basis. Effective medicines management at hospital discharge can support appropriate use of medicines following discharge and help avoid unnecessary hospital re‐admission. Many people, however, feel they receive insufficient information about medicines on discharge from hospital.

Living in uncertain times: trajectories to death in residential care homes

Background Older people living in care homes often have limited life expectancy. Practitioners and policymakers are increasingly questioning the appropriateness of many acute hospital admissions and the quality of end-of-life care provided in care homes. Aim To describe care home residents’ trajectories to death and care provision in their final weeks of life. Design and setting Prospective study of residents in six residential care homes in three sociodemographically varied English localities: Hertfordshire, Essex, and Cambridgeshire. Method Case note reviews and interviews with residents, care home staff, and healthcare professionals. Results Twenty-three out of 121 recruited residents died during the study period. Four trajectories to death were identified: ‘anticipated dying’ with an identifiable end-of-life care period and death in the care home (n = 9); ‘unexpected dying’ with death in the care home that was not anticipated and often sudden (n = 3); ‘uncertain dying’ with a period of diagnostic uncertainty or difficult symptom management leading to hospital admission and inpatient death (n = 7); and ‘unpredictable dying’ with an unexpected event leading to hospital admission and inpatient death (n = 4). End-of-life care tools were rarely used. Most residents who had had one or more acute hospital admission were still alive at the end of the study. Conclusion For some care home residents there was an identifiable period when they were approaching the end-of-life and planned care was put in place. For others, death came unexpectedly or during a period of considerable uncertainty, with care largely unplanned and reactive to events.

Sedative load of medications prescribed for older people with dementia in care homes

BackgroundThe objective of this study was to determine the sedative load and use of sedative and psychotropic medications among older people with dementia living in (residential) care homes.MethodsMedication data were collected at baseline and at two further time-points for eligible residents of six care homes participating in the EVIDEM-End Of Life (EOL) study for whom medication administration records were available. Regular medications were classified using the Anatomical Therapeutic Chemical classification system and individual sedative loads were calculated using a previously published model.ResultsAt baseline, medication administration records were reviewed for 115 residents; medication records were reviewed for 112 and 105 residents at time-points 2 and 3 respectively. Approximately one-third of residents were not taking any medications with sedative properties at each time-point, while a significant proportion of residents had a low sedative load score of 1 or 2 (54.8%, 59.0% and 57.1% at baseline and time-points 2 and 3 respectively). More than 10% of residents had a high sedative load score (≥ 3) at baseline (12.2%), and this increased to 14.3% at time-points 2 and 3. Approximately two-thirds of residents (66.9%) regularly used one or more psychotropic medication(s). Antidepressants, predominantly selective serotonin re-uptake inhibitors (SSRIs), were most frequently used, while antipsychotics, hypnotics and anxiolytics were less routinely administered. The prevalence of antipsychotic use among residents was 19.0%, lower than has been previously reported for nursing home residents. Throughout the duration of the study, administration of medications recognised as having prominent sedative adverse effects and/or containing sedative components outweighed the regular use of primary sedatives.ConclusionsSedative load scores were similar throughout the study period for residents with dementia in each of the care homes. Scores were lower than previously reported in studies conducted in long-term care wards which have on-site clinical support. Nevertheless, strategies to optimise drug therapy for care home residents with dementia which rely on clinicians external to the care home for support and medication review are required.

Exploring resource use and associated costs in end-of-life care for older people with dementia in residential care homes

The goals of this study are to describe end‐of‐life care costs of older people with dementia (OPWD) residents in care homes (CHs) with no on‐site nursing and evaluate the economic case for an intervention designed to improve end‐of‐life care for OPWD in CHs.

Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes.

BackgroundPublic involvement in research on sensitive subjects, such as death and dying, can help to ensure that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised, and moderate the often unequal power relationship between researcher and participant. This paper describes the contribution and impact of older members of a Public Involvement in Research group (PIRg) to a study on living and dying in care homes.MethodsA longitudinal study, with a mixed method approach, its aims were to capture key experiences, events and change over one year, of older people resident in participating care homes in the East of England. Residents were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg) contributed to preliminary discussions about the research and three were involved with many of the subsequent stages of the research process including the facilitation of discussion groups with residents.ResultsThere were three areas where the involvement of the Public Involvement in Research group (PIRg) positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were of similar age to the residents and their involvement provided different and often more reflective insights of the significance of the findings for the participants. There were examples where decision making about the range of PIRg participation was not always negotiable, and this raised issues about power relationships within the team. Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a commitment to continue to support research with this older age group.ConclusionsThe contribution of the PIRg supported a successful recruitment process that exceeded response rates of other studies in care homes. It safeguarded residents during the conduct of research on a sensitive topic and helped in validating the interview data gathered by the researchers through the discussion groups facilitated by the PIRg. There were power differentials that persisted and affected PIRg participation. The study has showed the value of developing job descriptions and a more formal means of setting out respective expectations. Future research may wish to elicit the views of focal participants in such studies about the mediation of research by public involvement in research.

Emergency ambulance service involvement with residential care homes in the support of older people with dementia: an observational study.

BackgroundOlder people resident in care homes have a limited life expectancy and approximately two-thirds have limited mental capacity. Despite initiatives to reduce unplanned hospital admissions for this population, little is known about the involvement of emergency services in supporting residents in these settings.MethodsThis paper reports on a longitudinal study that tracked the involvement of emergency ambulance personnel in the support of older people with dementia, resident in care homes with no on-site nursing providing personal care only. 133 residents with dementia across 6 care homes in the East of England were tracked for a year. The paper examines the frequency and reasons for emergency ambulance call-outs, outcomes and factors associated with emergency ambulance service use.Results56% of residents used ambulance services. Less than half (43%) of all call-outs resulted in an unscheduled admission to hospital. In addition to trauma following a following a fall in the home, results suggest that at least a reasonable proportion of ambulance contacts are for ambulatory care sensitive conditions. An emergency ambulance is not likely to be called for older rather than younger residents or for women more than men. Length of residence does not influence use of emergency ambulance services among older people with dementia. Contact with primary care services and admission route into the care home were both significantly associated with emergency ambulance service use. The odds of using emergency ambulance services for residents admitted from a relative’s home were 90% lower than the odds of using emergency ambulance services for residents admitted from their own home.ConclusionsEmergency service involvement with this vulnerable population merits further examination. Future research on emergency ambulance service use by older people with dementia in care homes, should account for important contextual factors, namely, presence or absence of on-site nursing, GP involvement, and access to residents’ family, alongside resident health characteristics.

Learning to work together – lessons from a reflective analysis of a research project on public involvement

Plain English summaryPatient and public involvement (PPI) in research is very important, and funders and the NHS all expect this to happen. What this means in practice, and how to make it really successful, is therefore an important research question. This article analyses the experience of a research team using PPI, and makes recommendations on strengthening PPI in research.There were different PPI roles in our study – some people were part of the research team: some were on the advisory group; and there were patient groups who gave specific feedback on how to make research work better for their needs. We used minutes, other written documents, and structured individual and group reflections to learn from our own experiences over time.The main findings were:- for researchers and those in a PPI role to work in partnership, project structures must allow flexibility and responsiveness to different people’s ideas and needs; a named link person can ensure support; PPI representatives need to feel fully included in the research; make clear what is expected for all roles; and ensure enough time and funding to allow meaningful involvement. Some roles brought more demands but also more rewards than others - highlighting that it is important that people giving up their time to help with research experience gains from doing so. Those contributing to PPI on a regular basis may want to learn new skills, rather than always doing the same things. Researchers and the public need to find ways to develop roles in PPI over time. We also found that, even for a team with expertise in PPI, there was a need both for understanding of different ways to contribute, and an evolving ‘normalisation’ of new ways of working together over time, which both enriched the process and the outputs.AbstractBackground Patient and public involvement (PPI) is now an expectation of research funders, in the UK, but there is relatively little published literature on what this means in practice – nor is there much evaluative research about implementation and outputs. Policy literature endorses the need to include PPI representation at all stages of planning, performing and research dissemination, and recommends resource allocation to these roles; but details of how to make such inputs effective in practice are less common. While literature on power and participation informs the debate, there are relatively few published case studies of how this can play out through the lived experience of PPI in research; early findings highlight key issues around access to knowledge, resources, and interpersonal respect. This article describes the findings of a case study of PPI within a study about PPI in research. Methods The aim of the study was to look at how the PPI representatives’ inputs had developed over time, key challenges and changes, and lessons learned. We used realist evaluation and normalisation process theory to frame and analyse the data, which was drawn from project documentation, minutes of meetings and workshops, field notes and observations made by PPI representatives and researchers; documented feedback after meetings and activities; and the structured feedback from two formal reflective meetings. Results Key findings included the need for named contacts who support, integrate and work with PPI contributors and researchers, to ensure partnership working is encouraged and supported to be as effective as possible. A structure for partnership working enabled this to be enacted systematically across all settings. Some individual tensions were nonetheless identified around different roles, with possible implications for clarifying expectations and deepening understandings of the different types of PPI contribution and of their importance. Even in a team with research expertise in PPI, the data showed that there were different phases and challenges to ‘normalising’ the PPI input to the project. Mutual commitment and flexibility, embedded through relationships across the team, led to inclusion and collaboration. Conclusion Work on developing relationships and teambuilding are as important for enabling partnership between PPI representatives and researchers as more practical components such as funding and information sharing. Early explicit exploration of the different roles and their contributions may assist effective participation and satisfaction.

Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach

In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice. This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciative Inquiry to promote integrated working between visiting health care practitioners (i.e. General Practitioners and District Nurses) and care home staff. The evaluation uses a social identity approach to elucidate the mechanisms of action that underlie the intervention, and understand how organisational change can be achieved. We uncovered evidence of both (i) identity mobilisation and (ii) context change, defined in theory as mechanisms to overcome divisions in healthcare. Specifically, the intervention supported integrated working across health and social care settings by (i) the development of a common group identity built on shared views and goals, but also recognition of knowledge and expertise specific to each service group which served common goals in the delivery of end-of-life care, and (ii) development of context specific practice innovations and the introduction of existing end-of-life care tools and frameworks, which could consequently be implemented as part of a meaningful bottom-up rather than top-down process. Interventions structured around a Social Identity Approach can be used to gauge the congruence of values and goals between service groups without which efforts to achieve greater integration between different health services may prove ineffectual. The strength of the approach is its ability to accommodate the diversity of service groups involved in a given area of care, by valuing their respective contributions and building on existing ways of working within which practice changes can be meaningfully integrated.