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

Needs and experiences of people with dementia living in nursing homes

Kate Shiells, Lara Pivodic, Iva Holmerová & Lieve Van den Block | Self-reported needs and experiences of people with dementia living in nursing homes: a scoping review | Aging & Mental Health | Published online 4th June 2019 

Objectives: With rates of dementia continuing to rise, the impetus on improving care for people with dementia is growing. Unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms, higher levels of depression, and reduced quality of life. Furthermore, proxy accounts exploring the needs of people with dementia have frequently been shown to be unreliable. Therefore, this literature review aims to explore the self-reported needs and experiences of people with dementia in nursing homes.

Method: A scoping review of the literature was carried out using the databases PubMed and PsycINFO to search for relevant articles according to PRISMA guidelines. Search terms were designed to include both quantitative and qualitative study designs. Thematic synthesis was used to categorise findings into themes related to self-reported needs and experiences.

Results: A total of 41 articles met the eligibility criteria. An analysis of study characteristics revealed more than half of studies used a qualitative design. Thematic synthesis resulted in eight themes: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, end-of-life care.

Conclusion: Whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. The findings in this review have provided a contribution towards guiding evidence-based practice that is tailored to the needs of nursing home residents with dementia.

Full article available at Aging & Mental Health 

Dementia friendly patient identification wrist bands

A Senior Healthcare Assistant (HCA) and Dementia Champion within the Royal Preston Hospital Emergency Department developed an adapted patient identification wristband that supported staff to recognise that a patient may have additional needs related to their diagnosis of dementia | NHS England

A discreet adaptation was made to existing wrist bands to notify any member of staff that the patient has dementia and that they needed to utilise their dementia care training when supporting the patient.

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This was achieved by cutting a forget-me-not flower symbol into the patient’s wristband between a patient’s information and the barcode ensuring visibility of the symbol. Further work was undertaken with staff across the emergency and other departments within the hospital to notify them of the changes to the wristband and what the innovation was aiming to achieve.

There has been positive feedback from patients’, their families, friends and carers, as well as health professionals and the general public. The impact of the improvements has been well received by patients, their families and carers as well as staff at the hospital. Qualitative feedback, has shown that they feel patients are treated with dignity and respect by the Emergency Department team.

Full story at NHS England

New report from Sheffield Dementia Involvement Group

Sheffield Dementia Involvement Group (SHINDIG)  provides a forum for people with dementia (and their family carers / supporters) in Sheffield to share their views and experiences of living with dementia and of health and social care services. The group has been running for five years, and meets four times a year.

The SHINDIG group have recently produced the following report giving advice for staff about gathering feedback on their experience of services from people living with dementia:

Advice to NHS and Social Care Staff on Gathering Feedback from People with Dementia and their Family Carers / Supporters

 

Age UK report: ‘Why call it care when nobody cares?’

Age UK |  2018 | Older people and their families tell politicians about the problems they face with care

A new report by Age UK – ‘Why call it care when nobody cares?’ – summarises the results of a series of listening events the charity  held with older people who are receiving care and their family carers earlier this year. 127 people participated in 13 sessions in total, which took place in the North, Midlands and South of England, in urban and rural places, and in more affluent and poorer areas.

Each of the listening events, were hosted by local Age UKs and had two parts:

  • in the first older people and their family carers talked about their personal experiences of care, highlighted the problems they faced and what would make life better;
  • and in the second they discussed various funding proposals and what they would mean for them and their families.

Age UK designed these events to help policymakers understand the real-life issues facing older people in need of care and their family carers in their constituencies, and to provide an opportunity to discuss potential solutions.  There was much commonality in the issues raised, and the same issues featured throughout the country,  showing that the problems facing adult social care are national.

The top five reasons mentioned the most in the sessions:

1. ‘Too many professional carers are in a rush and there’s no continuity

2. ‘Care often it isn’t very good’

3. ‘Social care is very expensive and often not good value for money’

4. ‘We family carers feel abandoned and unsupported by the NHS and social care’

5. ‘The social care system is dysfunctional and navigating it is a nightmare’

Older people suggested possible solutions to these issues:

1. ‘Everyone should contribute in some way’

2. ‘We’re only willing to pay more if we get a better service in return’

3. ‘We want any extra funds that are raised to be ring-fenced for care’

4. ‘We believe we need a new and better contract with family carers in our society’

5. ‘We older people and our families desperately want security’ (Age UK)

The full news piece can be read at Age UK 

You can read the full Age UK report here 

 

Are physiotherapists employing person-centred care for people with dementia?

Hall, A et al. | Are physiotherapists employing person-centred care for people with dementia? An exploratory qualitative study examining the experiences of people with dementia and their carers | BMC Geriatrics | 2018 18:63

Abstract
Background
People with dementia may receive physiotherapy for a variety of reasons. This may be for musculoskeletal conditions or as a result of falls, fractures or mobility difficulties. While previous studies have sought to determine the effectiveness of physiotherapy interventions for people with dementia, little research has focused on the experiences of people receiving such treatment. The aim of this study was to gain an in-depth understanding of people’s experiences of receiving physiotherapy and to explore these experiences in the context of principles of person-centred care.

Methods
Semi-structured interviews were undertaken with people with dementia or their carers between September 2016 and January 2017. A purposive sampling strategy recruited participants with dementia from the South West of England who had recently received physiotherapy. We also recruited carers to explore their involvement in the intervention. Thematic analysis was used to analyse the data.

Results
A total of eleven participants were recruited to the study. Six people with dementia were interviewed and five interviews undertaken separately with carers of people with dementia. Three themes were identified. The first explores the factors that enable exercises to be undertaken successfully, the second deals with perceived resource pressures, and the final theme “the physiotherapy just vanished” explores the feeling of abandonment felt when goals and expectations of physiotherapy were not discussed. When mapped against the principles of person-centred care, our participants did not describe physiotherapy adopting such an approach.

Conclusion
Lack of a person-centred care approach was evident by ineffective communication, thus failing to develop a shared understanding of the role and aims of physiotherapy. The incorporation of person-centred care may help reduce the frustration and feelings of dissatisfaction that some of our participants reported.

Full reference available at BMC Geriatrics

“I’m Still Here”: Personhood and the Early-Onset Dementia Experience

The current study examined the lived experience from the point of view of four adults younger than 65 with dementia, particularly how they perceive their personhood | Journal of Gerontological Nursing

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Using interpretative phenomenological analysis as the research approach, findings revealed that the EOD experience can be incorporated into six themes: (a) A Personal Journey, (b) Navigating the System, (c) The Stigma of Dementia, (d) Connecting to the World, (e) A Story Worth Telling, and (f) I’m Still Here. Participants’ stories, as presented via these six thematic threads, reveal that individuals with EOD can have a strong sense of personhood. Findings are discussed and situated within the current EOD body of knowledge, and new knowledge is presented. Implications for practice and recommendations for future research are discussed.

Full reference: Sakamoto, M.L. et al. (2017) “I’m Still Here”: Personhood and the Early-Onset Dementia Experience. Journal of Gerontological Nursing. 43(5) pp. 12-17

The experience of people with dementia and nurses in hospital

Digby, R. et al. (2017) Journal of Clinical Nursing. 26(9-10) pp. 1152–1171

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Aims and objectives: To identify and examine existing research exploring how people with dementia and nurses view acute hospital care.

Background: Admission to hospital can be traumatic for a person with dementia due to an inability to cope with unfamiliar environments, faces and routines. Adverse behavioural and health outcomes can result. Dementia adds complexity to patient care. Inability to deliver appropriate care is a source of stress and frustration for nurses.

Conclusions: Nurses require improved education and support to care for patients with dementia. Hospitals must focus on genuine caring concurrently with rapid discharge requirements, risk mitigation and fiscal restraint. More research is needed to inform the development of appropriate care for people with dementia in hospitals.

Relevance to clinical practice: Nurses must understand the complex needs of people with dementia in hospital. Nurse education about dementia, practical support, strong clinical leadership and role-modelling is needed. Empathy for patients regardless of diagnosis must remain a core attribute of nurses. Current hospital culture requires wider system review to mitigate against stigmatisation of patients with dementia.

Read the full abstract here

The experience of people with dementia and nurses in hospital

Digby, R. et al. (2017) Journal of Clinical Nursing. 26(9-10) pp. 1152–1171

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Aims and objectives: To identify and examine existing research exploring how people with dementia and nurses view acute hospital care.

Background: Admission to hospital can be traumatic for a person with dementia due to an inability to cope with unfamiliar environments, faces and routines. Adverse behavioural and health outcomes can result. Dementia adds complexity to patient care. Inability to deliver appropriate care is a source of stress and frustration for nurses.

Conclusions: Nurses require improved education and support to care for patients with dementia. Hospitals must focus on genuine caring concurrently with rapid discharge requirements, risk mitigation and fiscal restraint. More research is needed to inform the development of appropriate care for people with dementia in hospitals.

Relevance to clinical practice: Nurses must understand the complex needs of people with dementia in hospital. Nurse education about dementia, practical support, strong clinical leadership and role-modelling is needed. Empathy for patients regardless of diagnosis must remain a core attribute of nurses. Current hospital culture requires wider system review to mitigate against stigmatisation of patients with dementia.

Read the abstract here

Exploring the perspectives of patients with dementia about the hospital environment

Hung, L. et al. International Journal of Older People Nursing. Published online: 18 April 2017

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Background: Recognising demographic changes and importance of the environment in influencing the care experience of patients with dementia, there is a need for developing the knowledge base to improve hospital environments. Involving patients in the development of the hospital environment can be a way to create more responsive services. To date, few studies have involved the direct voice of patients with dementia about their experiences of the hospital environment.

Conclusions: Patient participants persuasively articulated the supportive and unsupportive elements in the environment that affected their well-being and care experiences. They provided useful insights and pointed out practical solutions for improvement. Action research offers patients not only opportunities to voice their opinion, but also possibilities to contribute to hospital service development.

Read the full article here