Guidance for carers of people with dementia

University College London | September 2020 |Guidance developed for dementia carers when dealing with COVID-19 infection

A team of researchers from University College London (UCL) have developed a decision-making guide for dementia carers, to ensure they can provide the right support and with dignity, should those they care for become infected with coronavirus.

The researchers based at Marie Curie Palliative Care Research Department at UCL, have observed the challenges to carers who can’t be with their loved one or person they support, due to visiting restrictions and having to social distance or shield themselves.

This often means that dementia carers have to make quick healthcare or legal decisions over the phone with a health professional: someone who may have no knowledge of the care and interventions the person with dementia requires.

The new guide, which was developed with families of those with dementia, is funded by an Economic and Social Research Council COVID-19 grant and supported by end of life care charity Marie Curie, Alzheimer’s Society and Dementia UK.

The tool has been designed to support carers work through situations, medical and legal jargon so they can make informed decisions quickly under stressful circumstances.

This includes do not resuscitate orders, legal issues like power of attorney, and ensuring that health and social care professionals understand what is important to the person they are caring for when that patient’s loved ones can’t be by their side.

The research team hopes that the new guide will also ease the emotional burden that families can experience and help resolve any feelings of uncertainty about the decisions they have made for their loved ones (Source: UCL).

Full press release is available from UCL

The decision aid can be downloaded here

COVID-19 and Dementia: Factors affecting patient outcomes and experience along the dementia pathway

Wessex Clinical Senate and Networks | July 2020| COVID-19 and Dementia: Factors affecting patient outcomes and experience along the dementia pathway

The COVID-19 pandemic has impacted significantly on the delivery of NHS services. We have an opportunity to learn from the rapid and necessary service transformation and consider how we recover our services.

Dementia remains a diagnosis with significant impact with a need to balance the timeliness of diagnosis with patient experience and outcomes. Covid may become endemic and our adapted ways of working may become the new normal.

Recent webinars have brought clinicians, service managers and commissioners together to consider factors affecting the dementia pathway in a Covid environment. This document aims to give an overview of factors identified that affect the pathway.

The documents are available to download from the Wessex Senate

Loneliness, but not social isolation, predicts development of dementia in older people

Older people who feel lonely and have few close relationships may have an increased chance of developing dementia. Perhaps surprisingly, being socially isolated with few or infrequent social contacts does not seem to predict dementia risk, researchers found.

This study was carried out before the coronavirus pandemic but the findings are relevant now, when the over-70s are socially isolated. It suggests that those who have supportive social relationships with relatives and carers may be protected from cognitive decline. The quality of their relationships seems to be more important than how often they meet up in person.

People who have social contact may still feel lonely. The study stresses the importance of supportive relationships for people with early stage dementia.

Full detail at National Institute for Health Research

Safeguarding adults with dementia during the COVID-19 crisis

This quick guide aims to support care providers and staff to safeguard people with dementia during the crisis | Social Care Institute for Excellence

There are increased concerns that, during the COVID-19 crisis, people may be more vulnerable to abuse or neglect. This may be a result of:

Full detail at Social Care Institute for Excellence

Dementia in care homes and COVID-19

Dementia in care homes and COVID-19 | Social Care Institute for Excellence 

This is a quick guide for carers in care homes supporting residents living with dementia during the coronavirus (COVID-19) pandemic. It discusses four clinical situations that may help to illustrate some challenges: understanding signs of COVID-19; helping residents with confusion; managing behavioural challenges; supporting residents with end-of-life care.

Full resource: Dementia in care homes and COVID-19

Caring for People with Dementia: a clinical practice guideline for the radiography workforce

Caring for People with Dementia: a clinical practice guideline for the radiography
workforce (imaging and radiotherapy) | The Society and College of Radiographers

Caring for people with Dementia: a clinical practice guideline for the radiography workforce (imaging and radiotherapy) is a comprehensive and evidence-based document. It has a set of recommendations for the whole radiographic workforce caring for people with dementia and carers when undergoing imaging and/or radiotherapy. It has been developed systematically using the best available evidence from research and expert opinion, including service users, and subjected to peer professional, lay and external review.

scor
Image source: http://www.sor.org

The guideline has recommendations for good practice for individual members of the radiographic workforce, service managers, academic institutions and the Society and College of Radiographers (SCoR).

As a whole, this guideline acts to highlight to practitioners that to offer the best service and healthcare outcomes for people with dementia and carers, care must be tailored to the needs of the invidual.

There have been minor changes to the language used in this second edition, which emphasises the ability of and need for people with dementia to continue to live well with a good quality of meaningful life.

Full document: Caring for People with Dementia: a clinical practice guideline for the radiography workforce

What hinders and facilitates the implementation of nurse-led interventions in dementia care?

Karrer, M., Hirt, J., Zeller, A. et al. | What hinders and facilitates the implementation of nurse-led interventions in dementia care? A scoping review. | BMC Geriatrics | 20, 127 (2020)

Abstract

Background

The implementation of evidence-based interventions for people with dementia is complex and challenging. However, successful implementation might be a key element to ensure evidence-based practice and high quality of care. There is a need to improve implementation processes in dementia care by better understanding the arising challenges. Thus, the aim of this study was to identify recent knowledge concerning barriers and facilitators to implementing nurse-led interventions in dementia care.

Methods

We performed a scoping review using the methodological framework of Arksey and O’Malley. Studies explicitly reporting on the implementation process and factors influencing the implementation of a nurse-led intervention in dementia care in all settings were included. We searched eight databases from January 2015 until January 2019. Two authors independently selected the studies. For data analysis, we used an inductive approach to build domains and categories.

Results

We included 26 studies in the review and identified barriers as well as facilitators in five domains: policy (e.g. financing issues, health insurance), organisation (e.g. organisational culture and vision, resources, management support), intervention/implementation (e.g. complexity of the intervention, perceived value of the intervention), staff (e.g. knowledge, experience and skills, attitude towards the intervention), and person with dementia/family (e.g. nature and stage of dementia, response of persons with dementia and their families).

Conclusions

Besides general influencing factors for implementing nursing interventions, we identified dementia-specific factors reaching beyond already known barriers and facilitators. A pre-existing person-centred culture of care as well as consistent team cultures and attitudes have a facilitating effect on implementation processes. Furthermore, there is a need for interventions that are highly flexible and sensitive to patients’ condition, needs and behaviour.

Full article: What hinders and facilitates the implementation of nurse-led interventions in dementia care? A scoping review.

Activity interventions to improve the experience of care in hospital for people living with dementia

This review finds a small number of studies that suggest activity-based interventions implemented in hospitals may be effective in improving aspects of the care experience for people living with dementia | BMC Geriatrics
Background

An increasingly high number of patients admitted to hospital have dementia. Hospital environments can be particularly confusing and challenging for people living with dementia (Plwd) impacting their wellbeing and the ability to optimize their care. Improving the experience of care in hospital has been recognized as a priority, and non-pharmacological interventions including activity interventions have been associated with improved wellbeing and behavioral outcomes for Plwd in other settings. This systematic review aimed at evaluating the effectiveness of activity interventions to improve experience of care for Plwd in hospital.

Methods

Systematic searches were conducted in 16 electronic databases up to October 2019. Reference lists of included studies and forward citation searching were also conducted. Quantitative studies reporting comparative data for activity interventions delivered to Plwd aiming to improve their experience of care in hospital were included. Screening for inclusion, data extraction and quality appraisal were performed independently by two reviewers with discrepancies resolved by discussion with a third where necessary. Standardized mean differences (SMDs) were calculated where possible to support narrative statements and aid interpretation.

Results

Six studies met the inclusion criteria (one randomized and five non-randomized uncontrolled studies) including 216 Plwd. Activity interventions evaluated music, art, social, psychotherapeutic, and combinations of tailored activities in relation to wellbeing outcomes. Although studies were generally underpowered, findings indicated beneficial effects of activity interventions with improved mood and engagement of Plwd while in hospital, and reduced levels of responsive behaviors. Calculated SMDs ranged from very small to large but were mostly statistically non-significant.

Conclusions

The small number of identified studies indicate that activity-based interventions implemented in hospitals may be effective in improving aspects of the care experience for Plwd. Larger well-conducted studies are needed to fully evaluate the potential of this type of non-pharmacological intervention to improve experience of care in hospital settings, and whether any benefits extend to staff wellbeing and the wider ward environment.

Full reference: Lourida, I., Gwernan-Jones, R., Abbott, R. et al. | Activity interventions to improve the experience of care in hospital for people living with dementia: a systematic review | BMC Geriatrics |  20, 131 (2020).

Supporting older people and people living with Dementia during self-isolation

Supporting older people and people living with Dementia during self-isolation | British Psychological Society | Division of Clinical Psychology

Older people and those with dementia are likely to be some of the hardest hit by the current crisis, being most at risk of severe disease if they contract the virus and in many cases advised to stringently self-isolate for the foreseeable future.

This guidance for older people includes advice on remaining connected and staying active during the pandemic, and a section on the needs of people living with dementia and memory problems — particularly on how to help them understand and follow Covid-19 advice.

Full document available at British Psychological Society

 

 

COVID-19: End of life care and dementia

This brief guidance was developed by Alistair Burns, National Clinical Director for Dementia at NHS England/Improvement, and has been incorporated into NHS England publications | via British Geriatrics Society

The majority of people with dementia (which is the leading cause of death in England and Wales) are aged over 70, have other long-term conditions and are frail, putting them into particularly vulnerable groups for developing complications if they are infected with COVID-19.

There are an estimated 675,000 people with dementia in England who are supported by a similar number of carers, most of whom are older people themselves. A quarter of people in acute hospitals and three quarters of residents of care homes have dementia.

This brief guidance may be useful to clinicians and planners when considering end of life care matters in people with dementia.

COVID-19: End of life care and dementia: Good practice guide.