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
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.
Veronika van der Wardt et al. | Physical activity engagement strategies in people with mild cognitive impairment or dementia – a focus group study | Aging & Mental Health | Published online: 07 Apr 2019
Objective: This focus group study aimed to explore how to motivate people with mild cognitive impairment (MCI) or dementia and their carers to engage in exercise and physical activity.
Methods: Four focus groups were conducted with six people with MCI or dementia, three carers and four clinicians (nurse, occupational therapist, physiotherapists). A thematic analysis of the data was undertaken.
Results: Five main themes were identified: ‘memory problems’, ‘self-motivation’, ‘external motivation’, ‘design of activities’ and ‘barriers’. Participants viewed exercise positively but emphasised that it needed to fit into their daily routine. Goal-setting was seen as helpful by some participants but others saw this as a source of potential failure. Enjoyment was seen as key to engagement.
Conclusion: Exercise and physical activity interventions need an individualised approach to engage people with MCI or dementia, with a positive emphasis on enjoyment. Goal-setting should be used with caution in this group of people.
People affected by dementia can make a unique and valuable contribution in every stage of research. Alzheimer’s Society has championed the active involvement of people affected by dementia in research for nearly two decades through it’s Research Network , helping to ensure it funds the highest quality, relevant research on dementia.
Alzheimer’s Society has pioneered the involvement of people affected by dementia in its research programme since 1999. During this time its Network of people with dementia, carers and former carers have been actively involved in all research funded by the Society and has developed over 100 individual research partnerships to ensure that the dementia research community across the UK has access to lived expertise of dementia in the design, delivery and dissemination of their research.
In 2017 Alzheimer’s Society undertook an evaluation of the impact of the Research Network by interviewing and surveying researchers and people affected by dementia about their involvement. The findings clearly establish that involving people affected by dementia has benefits across all types of research and across four themes:
Impact on volunteers
Impact on researchers
Impact on research
Impact on Alzheimer’s Society
A report has been published which includes a number of quotes from researchers across each of these four themes and a short video which describes impact.
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:
The Opinion Research Service (ORS) has opened the Dementia 2020 Engagement Panel on behalf of the Department of Health.
The aim is to gain a better understanding of the experiences and needs of people living with dementia, in order to shape policies to better deliver the commitments of the Dementia 2020 Implementation Plan.
The two-year consultation focuses in particular on people who have received the diagnosis in the past two years (since January 2015), but those with a diagnosis of more than two years can also take part, as can carers.
Hung, L. et al. International Journal of Older People Nursing. Published online: 18 April 2017
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.
Olsen, C. et al. Dementia. Published online: September 2 2016
The need for meaningful activities that enhance engagement is very important among persons with dementia (PWDs), both for PWDs still living at home, as well as for PWDs admitted to a nursing home (NH). In this study, we systematically registered behaviours related to engagement in a group animal-assisted activity (AAA) intervention for 21 PWDs in NHs and among 28 home-dwelling PWDs attending a day care centre.
The participants interacted with a dog and its handler for 30 minutes, twice a week for 12 weeks. Video-recordings were carried out early (week 2) and late (week 10) during the intervention period and behaviours were categorized by the use of an ethogram.
AAA seems to create engagement in PWDs, and might be a suitable and health promoting intervention for both NH residents and participants of a day care centre. Degree of dementia should be considered when planning individual or group based AAA.