This paper provides a summary of the quality indicators available to assess optimal palliative care in older people with dementia, and identifies the major gaps related to recommendations for which indicators remain to be developed | Palliative Medicine
A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation.
To identify and critically evaluate quality indicators for end-of-life care in dementia.
We found 8657 references, after de-duplication. In all, 19 publications describing 10 new and 3 updated sets of indicators were included in this review. Ultimately, 246 individual indicators were identified as being relevant to dementia end-of-life care and mapped against EAPC guidelines.
We systematically derived and assessed a set of quality indicators using a robust framework that provides clear definitions of aspects of palliative care, which are dementia specific, and strengthens the theoretical underpinning of new complex interventions in end-of-life care in dementia.
Dementia – the true cost: fixing the care crisis | Alzheimer’s Society
This report from Alzheimers Society is based on qualitative research from five listening events with people affected by dementia, social care professionals and dementia lead nurses in Winchester, Newcastle, Birmingham, Cardiff and Belfast. In total, evidence and testimony was gathered from over 70 people to get an in-depth understanding of the challenges they face day-in and day-out to get the care they need.
The report highlights the inadequacies in the care system regarding dementia patients. The number of potentially unnecessary hospital admissions among dementia patients has risen by 73% across 65 hospital trusts, from 31,000 in 2012 to around 55,000 in 2017. Some of this apparent increase may be attributable to better recording over that period but the report said that this could not account for the full increase.
The state of hospice services in England 2014 to 2017 presents findings from the Care Quality Commission’s programme of inspections.
The CQC inspected hospice services in England between October 2014 and January 2017.
The results found that Hospice care across England has the highest percentage of health and social care services that are rated outstanding (25%), and a further 70% are rated good.
The inspections found that hospice leaders and frontline staff displayed a strong commitment to providing truly person-centred, compassionate care and support to people using their services, and their loved ones. They also developed strong relationships with other services in the area.
However, the report makes the case that there is more to be done to make sure that everyone, regardless of their background or circumstances, can access high-quality end of life care. Hospice services rated as outstanding were striving to overcome such inequalities and share their expertise to drive better care in other services.
Despite having complex needs, most of the healthcare received by people in the later stages of dementia is provided by GPs or emergency services, with little support from specialist healthcare professionals. | via Marie Curie
Researchers, from the Marie Curie Palliative Care Research Department at University College London, found that GPs were the main providers of medical care, with 96% of people with advanced dementia seeing a GP in their last month of life. Paramedics also played a major role in assessment and healthcare towards the end of life, suggesting a reactive rather than planned response to patients’ needs – nearly one in five (19%) were seen by a paramedic in the month prior to their death.
Only 1% of people with advanced dementia were seen during the follow up period of the study by a geriatrician or an older persons’ psychiatrist.
Based on the findings, the researchers say that healthcare services are not currently tailored to the complex needs and symptoms of people with advanced dementia. Given that dementia is now the leading cause of death, they say there is urgent need to ensure an adequate standard of comfort and quality of life for patients.
Tropea, J. et al. (2017) International Psychogeriatrics. 29(3)pp. 467-474
Best practice dementia care is not always provided in the hospital setting. Knowledge, attitudes and motivation, practitioner behavior, and external factors can influence uptake of best practice and quality care. The aim of this study was to determine hospital staff perceived barriers and enablers to implementing best practice dementia care.
A total of 112 survey responses were received. The environment, inadequate staffing levels and workload, time, and staff knowledge and skills were identified as barriers to implementing best practice dementia care. Most respondents rated their knowledge of dementia care and common symptoms of dementia, and confidence in recognizing whether a person has dementia, as moderate or high dementia. Approximately, half the respondents rated access to training and equipment as low or very low.
The survey findings highlighted hospital staff perceived barriers to implementing best practice dementia care that can be used to inform locally tailored improvement interventions.
Davies, N. et al. Palliative Medicine. Published online: October 25, 2016
Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.
Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.
Design: Qualitative study using in-depth interviews and analysed using thematic analysis.
Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.
Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.
Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.