Dataset Information

The Impact of Agitation in Dementia on Caregivers: A Real-World Survey.

ABSTRACT:

Background

Dementia patients frequently depend on caregivers. Agitation is a common behavioral dementia symptom particularly burdensome to patients and caregivers.

Objective

To assess the association of agitation severity with non-professional caregiver hours, burden, health status, and productivity. Secondarily, to assess the association of agitation severity with these outcomes for patients receiving remote (not living with the patient) and proximate (living with the patient) caregiving.

Methods

A retrospective analysis of physician and non-professional caregiver-reported data from a US point-in-time survey. Patients were aged ≥50 years, with early cognitive impairment or dementia. Regression analyses compared outcomes by agitation severity; covariates included age, sex, and clinical characteristics.

Results

Data were included for 1,349 patients (non-agitated n = 656, agitated n = 693; no care n = 305, remote care n = 248, proximate care n = 691; unknown care n = 105). Greater agitation was significantly associated (p < 0.05) in all caregivers with increasing: Zarit Burden Interview (ZBI) Total Caregiver Burden, Personal Strain, Role Strain, and Guilt; Work Productivity and Activity Index (WPAI) presenteeism, overall work impairment, and total activity impairment. Higher ZBI Total Caregiver Burden, Personal Strain, and Role Strain were associated with greater agitation in proximate caregivers and higher ZBI Guilt associated with greater agitation in remote caregivers (p < 0.05). Higher WPAI presenteeism and total activity impairment were associated (p < 0.05) with greater agitation in proximate caregivers. Caregiving hours increased with increasing agitation for proximate caregiving (p = 0.001).

Conclusion

Greater agitation severity was associated with higher caregiver burden and lower productivity, with higher indirect costs a likely outcome of agitation.

SUBMITTER: Schein J

PROVIDER: S-EPMC9398061 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature

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Publications

The Impact of Agitation in Dementia on Caregivers: A Real-World Survey.

Schein Jeff J Houle Christy R CR Urganus Annette L AL Jones Eddie E Pike James J Husbands Joseph J Willey Cynthia J CJ

Journal of Alzheimer's disease : JAD 20220101 2

<h4>Background</h4>Dementia patients frequently depend on caregivers. Agitation is a common behavioral dementia symptom particularly burdensome to patients and caregivers.<h4>Objective</h4>To assess the association of agitation severity with non-professional caregiver hours, burden, health status, and productivity. Secondarily, to assess the association of agitation severity with these outcomes for patients receiving remote (not living with the patient) and proximate (living with the patient) ca ...[more]

PMID: 35694920

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Project description:IntroductionPrevious studies showed that quarantine for pandemic diseases is associated with several psychological and medical effects. The consequences of quarantine for COVID-19 pandemic in patients with dementia are unknown. We investigated the clinical changes in patients with Alzheimer's disease and other dementias, and evaluated caregivers' distress during COVID-19 quarantine.MethodsThe study involved 87 Italian Dementia Centers. Patients with Alzheimer's Disease (AD), Dementia with Lewy Bodies (DLB), Frontotemporal Dementia (FTD), and Vascular Dementia (VD) were eligible for the study. Family caregivers of patients with dementia were interviewed by phone in April 2020, 45 days after quarantine declaration. Main outcomes were patients' changes in cognitive, behavioral, and motor symptoms. Secondary outcomes were effects on caregivers' psychological features.Results4913 patients (2934 females, 1979 males) fulfilled the inclusion criteria. Caregivers reported a worsening in cognitive functions in 55.1% of patients, mainly in subjects with DLB and AD. Aggravation of behavioral symptoms was observed in 51.9% of patients. In logistic regression analysis, previous physical independence was associated with both cognitive and behavioral worsening (odds ratio 1.85 [95% CI 1.42-2.39], 1.84 [95% CI 1.43-2.38], respectively). On the contrary, pandemic awareness was a protective factor for the worsening of cognitive and behavioral symptoms (odds ratio 0.74 [95% CI 0.65-0.85]; and 0.72 [95% CI 0.63-0.82], respectively). Approximately 25.9% of patients showed the onset of new behavioral symptoms. A worsening in motor function was reported by 36.7% of patients. Finally, caregivers reported a high increase in anxiety, depression, and distress.ConclusionOur study shows that quarantine for COVID-19 is associated with an acute worsening of clinical symptoms in patients with dementia as well as increase of caregivers' burden. Our findings emphasize the importance to implement new strategies to mitigate the effects of quarantine in patients with dementia.

Project description:BackgroundThe research community has historically failed to enroll diverse groups of participants in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient's clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations among dementia caregivers, in their decision to participate in clinical research as study partners.MethodWe embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of U.S. dementia caregivers, oversampling non-Hispanic Black and Hispanic caregivers. Dementia caregivers were asked about their willingness to participate in the trial with their care recipient and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics were analyzed as predictors of trial participation in a base demographic model. In a second reasons model caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey-weighted logistic regression.ResultThe sample consisted of 610 dementia caregivers, including 156 non-Hispanic Black and 122 Hispanic caregiver participants. In the base demographic model, hypothetical trial participation was negatively associated with older caregiver age (OR (odds ratio) = 0.72, p = < 0.001). In the reasons model, the rated importance of a social responsibility to help others by participating in research was significantly associated with participation (OR = 1.56, p = 0.049), while the importance of the possibility of the care recipient experiencing serious side effects was negatively associated with participation (OR = 0.51, p = 0.003). In both models there was no significant difference in hypothetical participation between non-Hispanic Black and non-Hispanic White caregivers, or between Hispanic and non-Hispanic White caregivers.ConclusionHispanic and non-Hispanic Black dementia caregivers were not less likely than non-Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups but may instead reflect structural barriers and historic exclusion from trial participation.

Project description:BackgroundUse of companion robots may reduce older people's depression, loneliness and agitation. This benefit has to be contrasted against possible ethical concerns raised by philosophers in the field around issues such as deceit, infantilisation, reduced human contact and accountability. Research directly assessing prevalence of such concerns among relevant stakeholders, however, remains limited, even though their views clearly have relevance in the debate. For example, any discrepancies between ethicists and stakeholders might in itself be a relevant ethical consideration while concerns perceived by stakeholders might identify immediate barriers to successful implementation.MethodsWe surveyed 67 younger adults after they had live interactions with companion robot pets while attending an exhibition on intimacy, including the context of intimacy for older people. We asked about their perceptions of ethical issues. Participants generally had older family members, some with dementia.ResultsMost participants (40/67, 60%) reported having no ethical concerns towards companion robot use when surveyed with an open question. Twenty (30%) had some concern, the most common being reduced human contact (10%), followed by deception (6%). However, when choosing from a list, the issue perceived as most concerning was equality of access to devices based on socioeconomic factors (m = 4.72 on a scale 1-7), exceeding more commonly hypothesized issues such as infantilising (m = 3.45), and deception (m = 3.44). The lowest-scoring issues were potential for injury or harm (m = 2.38) and privacy concerns (m = 2.17). Over half (39/67 (58%)) would have bought a device for an older relative. Cost was a common reason for choosing not to purchase a device.ConclusionsAlthough a relatively small study, we demonstrated discrepancies between ethical concerns raised in the philosophical literature and those likely to make the decision to buy a companion robot. Such discrepancies, between philosophers and 'end-users' in care of older people, and in methods of ascertainment, are worthy of further empirical research and discussion. Our participants were more concerned about economic issues and equality of access, an important consideration for those involved with care of older people. On the other hand the concerns proposed by ethicists seem unlikely to be a barrier to use of companion robots.

Dataset Information

The Impact of Agitation in Dementia on Caregivers: A Real-World Survey.

Background

Objective

Methods

Results

Conclusion

Publications

The Impact of Agitation in Dementia on Caregivers: A Real-World Survey.

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