Nurturing Attentiveness: A Naturalistic Observation Study of Personal Care Interactions Between People With Advanced Dementia and Their Caregivers

Author:

Backhouse Tamara1ORCID,Jeon Yun-Hee2ORCID,Killett Anne1,Green Jessica1,Khondoker Mizanur3,Mioshi Eneida1

Affiliation:

1. School of Health Sciences, University of East Anglia , Norwich, Norfolk , UK

2. Sydney Nursing School, The University of Sydney , Sydney, New South Wales , Australia

3. Norwich Medical School, University of East Anglia , Norwich, Norfolk , UK

Abstract

Abstract Background and Objectives Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved. Research Design and Methods This was a naturalistic observation study using one-off video-recorded observations of personal care interactions between 14 people with advanced dementia and 12 caregivers (n = 7 care-home staff, n = 5 family carers) in the United Kingdom (total observation time 03:01:52). Observations were analyzed with observational video coding to determine the frequency of actions of people with dementia and qualitative content analysis for in-depth examination. Results Refusals of care were present in 32% of video sections. Active engagement of people with dementia was observed in 66% of sections. Rare contentious interactional components were characterized by the person with dementia appearing to show uneasiness and caregivers being flustered and uncertain. However, caregivers typically emanated a nurturing attentiveness, were attuned to the person, and skilled in seamlessly supporting them through care activities. Discussion and Implications Findings draw on real-world empirical evidence to reinvigorate the notion of person-centeredness in dementia care. The findings provide much needed insight into practical ways to improve care interactions for people with advanced dementia and enhance their personhood. Appropriate training/guidance for caregivers could support positive personal care experiences for both the person with dementia and caregiver.

Funder

The Alzheimer’s Society, United Kingdom

National Institute for Health and Care Research Applied Research Collaboration East of England

Alzheimer’s Society

NIHR ARC EoE

Publisher

Oxford University Press (OUP)

Reference42 articles.

1. What is good communication for people living with dementia? A mixed-methods systematic review;Alsawy,2017

2. Understanding and reducing refusals of personal care in dementia;Backhouse,2021

3. Strategies and interventions to reduce or manage refusals in personal care in dementia: A systematic review;Backhouse,2020

4. How do family carers and care-home staff manage refusals when assisting a person with advanced dementia with their personal care;Backhouse,2022

5. What are the factors associated with people with advanced dementia refusing assistance with personal care;Backhouse,2022

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