Unexpected cognitive lucidity and communication in patients with severe dementias, especially around the time of death, have been observed and reported anecdotally. This paper explores this phenomenon, which experts refer to as terminal or paradoxical lucidity | Alzheimer’s & Dementia | via ScienceDaily
The paper describes earlier work documenting case studies of individuals with advanced dementia, including Alzheimer’s disease, appearing to be able to communicate and recall in a seemingly normal fashion at the end of life, to the astonishment of their caregivers.
The authors acknowledge that studying paradoxical lucidity is challenging, given the fleeting nature of the event. Case studies report episodes lasting from mere seconds to at most several days for a small minority of cases. Thepaper also outlines important ethical implications of this work, including the ability of vulnerable patients to participate in research and how the observation of paradoxical lucidity might change the way caregivers interact with people with dementia.
The researchers hope their paper will help raise awareness within the scientific community to advance paradoxical lucidity research, and help validate the experiences of a multitude of caregivers.
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.
Background: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia can benefit from palliative care (PC) provided during the end-of-life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs.
Aim: To investigate the factors influencing provision of PC services for people with advanced dementia.
Methods: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINAHL and Scopus from 2008 to 2018 were searched. Narrative synthesis and content analysis were used to analyse and synthesise the data.
Key findings: In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients-related barriers and facilitators in provision of PC for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to PC in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of coordination across care settings, difficulty communicating with the patient and the lack of advance care planning.
Conclusions: Even though the provision of PC was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of patients with dementia to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective PC in this population.
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.
This study developed a toolkit of heuristics to aid practitioners making difficult decisions when caring for someone with dementia at the end of life|BMJ Supportive & Palliative Care.
Introduction: The end of life for someone with dementia can present several challenges for practitioners. Challenges may be eased with the use of heuristics (rules-of-thumb). For example, FAST is used in stroke: Facial-weakness, Arm-weakness, Slurred-speech, Time to call 999.
Methods: A co-design approach with three phases:
Focus groups and semi-structured interviews with family carers and practitioners, to identify key decisions and how these should be made. Results were presented to a co-design group consisting of health and care practitioners, and family carers tasked with developing a toolkit of heuristics, through workshops.
Testing the heuristics in practice for six-months in five clinical and care settings.
Evaluation of heuristics through interviews and questionnaires at three and six-months.
Results: Four sets of heuristics were developed, covering; eating/swallowing difficulties, agitation/restlessness, reviewing treatment, and routine care. The heuristics are arranged as flowcharts. Eating/swallowing difficulties have two rules; ensuring eating/swallowing difficulties do not come as a surprise and reflection about ‘comfort-feeding’ only. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and caregivers’ health/wellbeing. Reviewing treatment/interventions prompts practitioners to consider the benefits to quality-of-life and comfort. Finally, routine care, such as bathing, prompts practitioners to ensure care interventions improve or do not harm quality-of-life.
Conclusions: Practitioners liked the simplicity of the heuristics, making their implicit knowledge explicit, enhancing their confidence in making decisions at the end of life.
Alzheimer’s disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings | Western Journal of Nursing Research
The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer’s disease and related dementias caregivers. This review identified five critical gaps in the existing evidence:
(a) a lack of ethnic and gender diversity among caregivers studied,
(b) limited use of valid instruments to study dementia caregiver grief and bereavement,
(c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care,
(d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement
(e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.
Pain management in end-stage dementia is a fundamental aspect of end-of-life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care | Journal of Clinical Nursing
Aims and objectives: To explore hospice, acute care and nursing home nurses’ experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.
Conclusions: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.
Relevance to clinical practice: Nurses considered pain management fundamental to end-of-life care provision; however, nurses working in acute care and nursing home settings may be undersupported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology.