What are the factors associated with people with advanced dementia refusing assistance with personal care?

Backhouse, Tamara; Mioshi, Eneida; Khondoker, Mizanur

doi:10.1002/gps.5857

Cited by 8 publications

(4 citation statements)

References 50 publications

(107 reference statements)

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“…Interestingly, being interrupted by someone else once the session had been initiated, or the person with dementia initially refusing the book, had no significant effect on engagement, with the latter indicating that persons with dementia will usually engage even after refusing to do so. It is clinically important to appreciate that while refusals are common for residents with cognitive impairment (particularly refusals of care for those with more advanced dementia), 26 , 27 persons with dementia may say “no” or refuse offered activities because they are unable to process the expectations and demands of the invitation.…”

Section: Discussionmentioning

confidence: 99%

Can Residents With Late-Stage Dementia Still Engage?

Trudeau,

Slotnick,

Gately

2024

Am J Alzheimers Dis Other Demen

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Institutionalized persons with dementia often lack access to meaningful activity, which can lead to agitation, loneliness, and depression. Engagement in activity may improve negative symptoms but is difficult in most settings. In this study, we investigated the degree to which the Reading Buddies Program, in which occupational therapy graduate students read books with residents with dementia, engaged residents. We further assessed whether the level of engagement was affected by various parameters, including those related to interaction, environment, attention, attitude, and activity. The primary outcome measure was engagement percentage–duration of time the book was read divided by duration of time the person with dementia engaged with the book. As expected, increased attention, attitude, and activity parameters were associated with increased engagement. None of the environmental parameters significantly affected engagement. Overall, we found that reading with persons with dementia led to a very high level of engagement and appeared to reduce negative symptoms.

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Section: Discussionmentioning

confidence: 99%

Can Residents With Late-Stage Dementia Still Engage?

Trudeau,

Slotnick,

Gately

2024

Am J Alzheimers Dis Other Demen

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“…This research was linked to a parent study (Pro-CARE) in England, which was funded by the Alzheimer’s Society and used questionnaires to determine factors associated with refusals of care in dementia ( Backhouse et al, 2022b ). Participants in the parent study (260 participants; 130 people with advanced dementia and 130 caregivers [family or care home]) had the choice to opt-in to take part in video-recorded observations.…”

Section: Methodsmentioning

confidence: 99%

“…How a person with dementia perceives assistance with their care may relate to multiple factors. For example: (1) their own condition such as impaired cognition, personality and behavioral changes, not understanding caregivers’ intentions, agitation, dependence in activities of daily living, pain, delirium, anxiety, depression, and/or delusions ( Backhouse et al, 2022b ; Galindo-Garre et al, 2015 ; Ishii et al, 2012 ), or (2) caregiver approaches such as communication style, pace, and the techniques and strategies caregivers use to engage the person ( Backhouse et al, 2022a ; O’Brien et al, 2020 ; Williams & Herman, 2011 ). Caregiver approaches can be influenced by other factors, for example, care-home staff may have less time to provide care or to get to know the person well and family carers may be fatigued.…”

Section: Introductionmentioning

confidence: 99%

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

Backhouse,

Jeon,

Killett

et al. 2024

The Gerontologist

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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 fourteen people with advanced dementia and twelve caregivers (n=7 care-home staff, n=5 family carers) in the UK (total observation time 03:01:52). Observations were analysed 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 characterised 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-centredness 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.

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“…Several terms are used in the literature to describe the care that persons resist or do not provide consent for, such as coercive care, resistiveness to care, refusal of care, forced treatment and involuntary treatment [ 8 , 13 – 15 ]. This study uses the term ‘involuntary treatment’, which is defined as care provided without the consent of the person receiving it and/or to which this person resists, including the use of physical restraints, psychotropic medication and non-consensual care [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

District nurses’ experiences with involuntary treatment in dementia care at home: a qualitative descriptive study

Moermans,

Hamers,

Verbeek

et al. 2023

BMC Nurs

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Background Research shows that half of person(s) living with dementia (PLWD) receive care which they resist and/or have not given consent to, defined as involuntary treatment. District nurses play a key role in providing this care. Knowledge about how district nurses experience involuntary treatment is lacking. Therefore, the aim of this study was to describe the experiences of district nurses who used involuntary treatment for PLWD at home. Methods A qualitative descriptive design using semi-structured interviews. Sixteen district nurses with experience in involuntary treatment for PLWD were recruited through purposive sampling. Data were analysed using the Qualitative Analysis Guide of Leuven. Results District nurses’ experiences with involuntary treatment were influenced by their involvement in the decision-making process. When they were involved, they considered involuntary treatment use to be appropriate care. However, at the moment that involuntary treatment use was started, district nurses were worried that its use was unjust since they wished to respect the wishes of the PLWD. Eventually, district nurses found, from a professional perspective, that involuntary treatment use was necessary, and that safety outweighed the autonomy of the PLWD. District nurses experienced dealing with this dilemma as stressful, due to conflicting values. If district nurses were not involved in the decision-making process regarding the use of involuntary treatment, family caregivers generally decided on its use. Often, district nurses perceived this request as inappropriate dementia care and they first tried to create a dialogue with the family caregivers to reach a compromise. However, in most cases, family caregivers stood by their request and the district nurse still provided involuntary treatment and found this difficult to tolerate. Conclusions Our results show that district nurses experience involuntary treatment use as stressful due to dealing with obverse values of safety versus autonomy. To prevent involuntary treatment use and obverse values, we need to increase their ethical awareness, communication skills, knowledge and skills with person-centred care so they can deal with situations that can evolve into involuntary treatment use in a person-centred manner.

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What are the factors associated with people with advanced dementia refusing assistance with personal care?

Abstract: This article has been accepted for publication and undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the Version of Record. Please cite this article as

Cited by 8 publications

References 50 publications

Can Residents With Late-Stage Dementia Still Engage?

Can Residents With Late-Stage Dementia Still Engage?

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

District nurses’ experiences with involuntary treatment in dementia care at home: a qualitative descriptive study

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