NIHR Alert: Careful phrasing of requests by hospital staff could help people with dementia accept care

NIHR | December 2020 | Careful phrasing of requests by hospital staff could help people with dementia accept care

“Healthcare professionals in acute hospitals are not generally trained in how to communicate with people with dementia. This has an impact on their job satisfaction and stress levels. People with dementia and their relatives also report dissatisfaction with communication in hospital.”

Rebecca O’Brien, Study Author, Clinical Researcher School of Health Sciences/ Division of Rehab, Ageing and Well-being University of Nottingham
This study intended to provide healthcare professionals with ways to communicate more effectively with people living with dementia (PLWD). The authors analysed video recordings of HCPs and PWDs interactions from three inpatient wards. Their analysis led to a recognition of requests which led to patients agreement or refusal
The experts also recognise that no manner of verbal requesting would guarantee compliance or ultimately override a patient’s right to refuse to comply with a request. They identify several features of requests can be seen to precede acceptance, principally the use of higher entitlement requests, and the lowering of contingencies. This indicates that by varying tone, phrasing and question construction led to a more positive response from patients who were confused or resisting care.

The authors want to equip health professionals with the skills to make requests in different ways. O’Brien also wants “policymakers to understand the importance of the need to train staff in communication skills.” (Source: NIHR and O’Brien et al, 2020)

O’Brien, R., Beeke, s., Pilnick, A. & Harwood, R.H. | 2020| When people living with dementia say ‘no’: Negotiating refusal in the acute hospital setting | Social Science and Medicine | Vol. 263 113188

Abstract

A quarter of UK acute hospital beds are occupied by people living with dementia (PLWD). Concerns have been raised by both policy makers and carers about the quality of communication between hospital staff and PLWD. PLWD may experience communication impairments such as word finding difficulties, limited ability to construct coherent narratives and difficulties understanding others. Since much healthcare delivery occurs through talk, healthcare professionals (HCPs) and PLWD are likely to experience increased communication barriers. Consistent with this, HCPs report stress and reduced job satisfaction associated with difficulty communicating with PLWD. HCPs face these challenges whilst striving to deliver person-centred care, respecting the autonomy and wishes of the patient before them. However, best practice recommendations in the field tend not to be based on actual interactional evidence. This paper investigates recurring interactional difficulties around HCP requests to carry out health and social care tasks and subsequent reluctance or refusal on the part of PLWD. Using conversation analysis, we examined 41 video recordings of HCP/PLWD interactions collected across three acute inpatient wards. We identify both the nature of the refusals, and any mitigation offered, and explore the requests preceding them in terms of entitlement and contingency. We also explore the nature of HCP requests which precede PLWD agreement with a course of action. We conclude that several features of requests can be seen to precede acceptance, principally the use of higher entitlement requests, and the lowering of contingencies. Our findings underline the importance of examining the contextual interactional detail involved in the negotiation of healthcare, which here leads to an understanding of how design of HCP requests can impact on an important healthcare activity being carried out. They also emphasise the power of conversation analytic methods to identify areas of frequent interactional trouble in dementia care which have not previously been articulated.

Primary paper is available from Social Science & Medicine

NIHR Alert Careful phrasing of requests by hospital staff could help people with dementia accept care

Cambridge Research: Apathy could predict onset of dementia years before other symptoms

University of Cambridge | October 2020 |Apathy could predict onset of dementia years before other symptoms

A team of researchers led by Professor James Rowe at the University of Cambridge have shown how apathy predicts cognitive decline even before the dementia symptoms emerge. 

This longitudinal study followed 304 healthy participants who carry a faulty gene that causes frontotemporal dementia (FTD), and 296 of their relatives who have normal genes. All particpants were assessed at the outset of the study and every two years over several years. None had dementia, and most people in the study did not know whether they carry a faulty gene or not. The researchers looked for changes in apathy, memory tests and MRI scans of the brain, and they found that apathy severity increased over time in presymptomatic carriers, but not in non‐carriers. Among those who carried the gene , baseline gray matter volume of frontal lobe and cingulate cortex predicted the faster progression of apathy over 2 years. (Source: Malpetti, et al, 2020 & University of Cambridge).

“By studying people over time, rather than just taking a snapshot, we revealed how even subtle changes in apathy predicted a change in cognition, but not the other way around,” explained Malpetti, the study’s first author. “We also saw local brain shrinkage in areas that support motivation and initiative, many years before the expected onset of symptoms. The more we discover about the earliest effects of frontotemporal dementia, when people still feel well in themselves, hte better we can treat symptoms and delay or even prevent the dementia.

First author of the study Dr Maura Malpetti

The paper discusses how apathy is an early marker of FTD‐related changes and predicts a subsequent subclinical deterioration of cognition before dementia onset.

Malpetti, M. et al (2020)| Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes| Alzheimer’s & Dementia |https://doi.org/10.1002/alz.12252

Abstract
Introduction

Apathy adversely affects prognosis and survival of patients with frontotemporal dementia (FTD). We test whether apathy develops in presymptomatic genetic FTD, and is associated with cognitive decline and brain atrophy.

Methods

Presymptomatic carriers of MAPTGRN or C9orf72 mutations (N = 304), and relatives without mutations (N = 296) underwent clinical assessments and MRI at baseline, and annually for 2 years. Longitudinal changes in apathy, cognition, gray matter volumes, and their relationships were analyzed with latent growth curve modeling.

Results

Apathy severity increased over time in presymptomatic carriers, but not in non‐carriers. In presymptomatic carriers, baseline apathy predicted cognitive decline over two years, but not vice versa. Apathy progression was associated with baseline low gray matter volume in frontal and cingulate regions.

Discussion

Apathy is an early marker of FTD‐related changes and predicts a subsequent subclinical deterioration of cognition before dementia onset. Apathy may be a modifiable factor in those at risk of FTD.

Primary paper is published in the journal Alzheimer’s & Dementia

University of Cambridge Apathy could predict onset of dementia years before other symptoms

Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes

In the news:

Science Daily Apathy could predict onset of dementia years before other symptoms

The Daily Mail Apathy and lack of motivation in your mid-forties could be an early warning sign of dementia, study suggests

Dementia and outcomes from coronavirus disease 2019 pneumonia

Dementia and outcomes from coronavirus disease 2019 (COVID-19) pneumonia: A systematic review and meta-analysis | Archives of Gerontology and Geriatrics November 2020

The number of positive and death cases from coronavirus disease 2019 (COVID-19) is still increasing until now. One of the most prone individuals, even in normal situations is patients with dementia. Currently, no study provides clear evidence regarding the link between dementia and COVID-19. This study aims to analyze the relationship between dementia and poor outcomes of COVID-19 infection.

A total of 24 studies with 46,391 dementia patients were included in this meta-analysis. This study showed that dementia was associated with composite poor outcome and its subgroup which comprised of risk of COVID-19 infection, and mortality from COVID-19 infection.

The authors conclude that extra care and close monitoring should then be provided to patients with dementia to minimize the risk of infections, preventing the development of severe and mortality outcomes.

Full article: Dementia and outcomes from coronavirus disease 2019 pneumonia

Cochrane: Activities for people with dementia: what can evidence and experience teach us?

In this blog Sarah Chapman looks at evidence on personally tailored activities for people with dementia and shares insights from her own experience and those of others, acknowledging a wealth of experience to help people with dementia, while we await further research into providing tailored activities for people with dementia.

Blog post available from Evidently Cochrane

NIHR: The WHELD programme for people with dementia helps care home staff deliver person-centred care

NIHR |  December 2020 | The WHELD programme for people with dementia helps care home staff deliver person-centred care

An evidence-based programme for care home residents living with dementia improved their quality of life and reduced agitation and other symptoms of dementia. A major study across the UK found that the Well-being and Health for People Living with Dementia (WHELD) programme was effective and cost less to deliver than usual care.

The research design of this study employed a large randomised clinical trial, the involvement of 69 care homes and participation of 847 residents, over a 9 month period. The experts aimed to to determine if training in person-centred care could be enhanced through review of antipsychotic prescriptions, promotion of social interaction/personalised activities or exercise. Combining personalised activities with a review of antipsychotic medication led to reduction in antipsychotic use by a half as well as a significant improvement in some aspects of quality of life for residents with dementia. There was also a significant reduction in mortality. There were improvements in symptoms of agitation among people receiving the exercise intervention.

.The results demonstrated benefits in quality of life, a reduction in agitation and improvement in quality of care for re

The researchers report that for care home residents with dementia, involvement in the programme led to:

  • significant benefits in quality of life
  • a reduction in agitation
  • a reduction in neuropsychiatric symptoms such as depression
  • improvement in quality of care, with residents experiencing fewer emergency hospital admissions and fewer GP visits.

The researchers behind this study have also secured further funding from NIHR to develop a COVID-specific version of the WHELD programme. This will use virtual coaching and use digital platforms to share best practice between staff and managers of different care homes (Source: NIHR)

The primary paper is available from NIHR

More information about the WHELD programme is available from its website Help us Shape the Future of Care

Video about the WHELD programme, including interviews with care home staff.

The music project helping dementia patients find their voice during lockdown

Wertheimer, F. 18 November 2020| The Guardian |The music project helping dementia patients find their voice during lockdown
The music project helping dementia patients find their voice during lockdown via The Guardian

This news story tells how a Manchester orchestra that usually provides session to care residents including people with dementia, had to stop its award-winning work due to the pandemic. Happily, the nine musicians and two music therapists who comprise Manchester’s Camerata Orchestra Music in Mind project are now delivering their sessions virtually.

Read the news story from The Guardian

NIHR: VOICE training for healthcare professionals aids communication with dementia patients

NIHR | November 2020 | VOICE training for healthcare professionals aids communication with dementia patients

The NIHR highlights how a training course has improved the confidence and communication skills of healthcare staff in treating and caring for patients with dementia.

Around 25 per cent of hospital beds are occupied by patients with dementia and their difficulties with communication can make treating other co/multi-morbidities more challenging. In many cases these problems are made worse by admission to hospital because they are unsettled by the change of environment, illness and seeing unfamiliar faces. 

Earlier studies underlined that clinicians currently receive very little or no dementia specific training to help them care for patients with dementia, despite the high number of patients with dementia in emergency care and acute settings. This enabled the NIHR to recognsie the potential benefit of appropriate dementia-specific training for healthcare professionals and, through its Health Services and Delivery Research (HS&DR) Programme, funded the VOICE (VideOing to Improve Communication Education) study to evaluate and deliver a new training programme. 

Led by Professor Rowan Harwood at the University of Nottingham, the VOICE study has shown promising results that evidence-based communication skills training for health professionals can improve their communication with patients with dementia.

The researchers developed a practical skills training course and online e-learning resource with the help of experts in communication skills training and carers of people with dementia. Actors were specially trained in simulating people with dementia, by the researchers to recreate the types of situations that healthcare professionals face in their everyday roles. The training course was tested on forty healthcare professional to determine whether they experienced improvements in their confidence and skills in communicating with people with dementia. At the outset the clinicians were asked to self-assess their confidence and a month after completing the training course they repeated this self-assessment. The study demonstrates that the intervention improves the communication skills of the healthcare professionals which will benefit patients by improving determination of needs, provision of comfort, reduce distress, and enhance inclusion in decision making.

Now the VOICE training course has been delivered to more than 180 healthcare professionals across the UK. Included in this number are 31 healthcare professionals who “trained as trainers”, and the 54 they went on to train at five English hospital trusts. More training has been planned for the future. The full impact news story is available from NIHR

Project information for the VOICE study is available from NIHR

UCL: Leisure activity might not reduce dementia risk

University College London | November 2020 |Leisure activity might not reduce dementia risk

Researchers at UCL report that activities such as gardening and reading in mid-life may not reduce an individual’s risk of dementia.

More than 8000 adults were studied, with the average age of the participant around 56 years of age. Each of the volunteers participation in leisure activities was recorded at the study’s outset, based on their participation in their activities, the researchers assigned them into different groups: low risk, medium risk and high risk. The subjects were followed up again, five and ten years later.

Using health records the team were able to identify who developed dementia. They also observed that some of the participants who gave up their hobbies later developed dementia. They found no association between participating in hobbies and the risk of developing dementia.

UCL press release Leisure activity might not reduce dementia risk

Primary paper is available from the journal Neurology

Leisure activity participation and risk of dementia 18 year follow-up of the Whitehall II Study

Dementia risk factors

Alzheimer’s Disease International| nd| Dementia risk factors

Alzheimer’s Disease International is highlighting a new infographic which shows the 12 risk factors for dementia, it is available to download from Alzheimer’s Disease International.

Image source: alz.co.uk

The infographic is taken from a paper published in The Lanet, where it is available to download

Related:

Guidance for health professionals supporting groups with specific complex needs who are or have been shielding

This document is aimed at psychologists and other health professionals supporting adults who are or have been subject to shielding, who have additional complex needs or considerations, including adults with learning/intellectual disabilities, autism spectrum conditions, and/or those living with dementia | The British Psychological Society

The considerations may also be relevant for those living with long term health conditions and their families. People living with these conditions often live with hidden disabilities and the difficulties they face can consequently be less obvious to services and society due to Covid-19.

The guidance specifically focusses on those in the ‘high’ risk category defined by the UK government but recognises that many people not officially in the ‘high risk’ category may have been shielding and therefore may face similar challenges, especially those shielding others, or those in ‘moderate risk’ categories.

Full guidance: Guidance for health professionals supporting groups with specific complex needs who are or have been shielding