This paper offers a unique set of evidence-based clinical recommendations for Advance Care Planning in people living with dementia | BMC Palliative Care
Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual’s preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care.
Following the Belgian Centre for Evidence-Based Medicine’s procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners).
Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence.
No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.
Diseases could be detected even before people experience symptoms, thanks to a pioneering new health-data programme as part of the government’s modern Industrial Strategy
Businesses and charities are expected to jointly invest up to £160 million, alongside a £79 million government investment, as part of the Accelerating Detection of Disease programme. The project will support research, early diagnosis, prevention and treatment for diseases including cancer, dementia and heart disease.
The pioneering initiative will recruit up to 5 million healthy people. Volunteered data from the individuals will help UK scientists and researchers invent new ways to detect and prevent the development of diseases.
Carers action plan 2018 to 2020: 1-year progress review | Department of Health & Social Care
This document highlights the progress that has been made in delivering the carers action plan 2018 to 2020 to increase support for carers. The cross-government action plan was published in June 2018.
Over the year since publication, positive progress has been made towards fulfilling the commitments set out in the Action Plan. This report highlights this progress, categorised under the following themes:
services and systems that work for carers;
employment and financial wellbeing;
supporting young carers;
recognising and supporting carers in the wider community and society;
building research and evidence to improve outcomes for carers.
This study investigated whether midlife forgetfulness was an indicator of an increased risk of dementia in old age | Dementia & Geriatric Cognitive Disorders
Background: Despite the current evidence of a high prevalence of forgetfulness in middle-aged individuals, and the evidence of a link between midlife memory complaints and biological changes in the brain, no previous study has yet investigated midlife forgetfulness in relation to risk of dementia in old age.
Methods: We used data from 3,136 employed men and women who participated in the Danish Work Environment Cohort Study in 1990. These data were linked to Danish national registers. Participants were asked whether their closest relative had ever told them that they were forgetful. Incidence rate ratios (IRR) were estimated using Poisson regression analysis.
Results: At baseline, 749 (24%) study participants were categorized as forgetful, and 86 (2.7%) participants were diagnosed with dementia during a total of 31,724 person-years at risk. After adjusting for sociodemographic factors, comorbidities, and work-related factors, midlife forgetfulness was associated with a higher risk of dementia (IRR = 1.82; 95% CI: 1.12–2.97).
Conclusions: This study is the first to investigate midlife forgetfulness and dementia, and the results suggest that midlife forgetfulness is an early indicator of an increased risk of dementia in old age.
This report presents the Round 4 results of the National Audit of Dementia. Scores from each hospital are derived from key themes and are shown in comparison to the scores from Round 3.
There are several areas where improvement has been made: 96% of hospitals in England and Wales now have a system in place for more flexible family visiting; a large number (88%) of carers (and/or patients) receive a copy of the discharge plan; and more staff report being able to access finger food or snacks for patients with dementia.
Key areas for improvement include striving to ensure that more hospitals assess for delirium and that any member of staff involved in the care of people with dementia must have training relevant to their grade and include identification and management of delirium. This training should be recorded to provide assurance to the public and regulators.
For further detail and to download the report, click here
Social Care Funding: Time To End A National Scandal | Economic Affairs Committee
This report finds that publicly funded social care support is shrinking, as diminishing budgets have forced local authorities to limit the numbers of people who receive public funding. Funding is £700 million lower than 2010/11 in real terms, despite continuing increases in the numbers of people who need care.
The report recommends that the Government immediately spends £8 billion to restore social care to acceptable standards and then introduces free personal care over a period of five years.
Key conclusions and recommendations
The Government must increase funding by £8 billion to restore levels of quality and access to those observed in 2009/10. This should be its top priority.
The Government should introduce a basic entitlement to publicly funded personal care for individuals with substantial and critical levels of need. Accommodation costs and the costs of other help and support should still be incurred by the individual. The Health Foundation and the King’s Fund estimate this would cost £7 billion if introduced in 2020/21.
To avoid catastrophic accommodation costs, the Government should also explore a cap on accommodation costs.
The Government should adopt a staged approach to providing the additional funding recommended by this report. It should immediately invest £8 billion in adult social care, then introduce free personal care over the next five years. Free personal care should be available universally by 2025/26.
Additional funding should be provided as a government grant, distributed directly to local authorities according to an appropriate national funding formula which takes into account differences between local authorities in demand for care and ability to raise funds from local taxation.
Funding social care should be approached in the same way as any other funding pressure. We recommend that social care is funded largely from general taxation.
Why it’s important to review the care of people with dementia | Healthwatch
This report summarises data and people’s experiences about social care reviews, reassessments and their outcomes for people with dementia. It also includes recommendations.
Over 850,000 people live with dementia in the UK. One widely reported challenge is the impact dementia has on families and friends, and how it can be a constant struggle to get the right support from social care services.
As dementia is a degenerative condition, The Care Act states that people are entitled to regular reviews to ensure care meets their changing needs. However, when we analysed data from 97 local councils, Healthwatch found people were not getting what they were entitled to.
NICE | July 2019| Dementia Quality standard [QS184]
NICE have published a new quality standard, it covers preventing dementia, and assessment, management and health and social care support for people with dementia. It describes high-quality care in priority areas for improvement.
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.