Patient Suffering and Caregiver Compassion: New Opportunities for Research, Practice, and Policy

Schulz, Richard; Hebert, Randy S.; Dew, Mary Amanda; Brown, Stephanie L.; Scheier, Michael F.; Beach, Scott R.; Czaja, Sara J.; Martire, Lynn M.; Coon, David W.; Langa, Kenneth M.; Gitlin, Laura N.; Stevens, Alan; Nichols, Linda O.

doi:10.1093/geront/47.1.4

Cited by 137 publications

(118 citation statements)

References 65 publications

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“…The effect of the caregiver's relationship with the patient on outcomes for both the patient and caregiver has not been well studied to date and warrants further exploration. 39 In the bi-variate analyses, there was little association between patient socio-demographic characteristics and caregiver HCTD (only caring for a female patient was associated with greater caregiver HCTD). Although some patient health characteristics (bed bound days, nursing home days and mental health-related quality of life) were associated with caregiver HCTD, this relationship was not consistent across all measures of patient health (numbers of chronic conditions, physical health-related quality of life, and predicted health care utilization).…”

Section: Discussionmentioning

confidence: 90%

“…These variables included both caregiver characteristics (age, gender, education, health, and reported quality of relationship with patient), patient health-related quality of life (measured using the SF36 32 ), and the number of assisted HCTs. The number of assisted HCTs was included in the model to ensure the estimated coefficients reflected the relationship of each (23) 181 (59) 51 (17) 6 (2) Difficulty getting information 62 (20) 203 (66) 40 (13) 3 (1) HCTD optional items ‡ Difficulty following recommended diet 120 (39) 99 (32) 58 (19) 31 (10) Difficulty monitoring patients health…”

Section: Methodsmentioning

confidence: 99%

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Difficulty Assisting with Health Care Tasks Among Caregivers of Multimorbid Older Adults

et al. 2011

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BACKGROUND: Family caregivers provide assistance with health care tasks for many older adults with chronic illnesses. The difficulty they experience in providing this assistance, and related implications for their well-being, have not been well described. OBJECTIVE: The objectives of this study are: (1) to describe caregiver's health care task difficulty (HCTD), (2) determine the characteristics associated with HCTD, and (3) explore the association between HCTD and caregiver well-being. DESIGN: This is a cross-sectional study. PARTICIPANTS: Baseline sample of caregivers to older (aged 65+years) multimorbid adults enrolled in an ongoing cluster-randomized controlled trial (N=308). MAIN MEASURES:The HCTD scale (0-16) is comprised of questions measuring self-reported difficulty in assisting older adults with eight health care tasks, including taking medication, visiting health care providers, and managing medical bills. Caregivers were categorized using this scale into no, low, medium, and high HCTD groups. We used ordinal logistic regression and multivariate linear regression analyses to examine the relationships between HCTD, caregiver self-efficacy, caregiver strain (Caregiver Strain Index), and depression (Center for Epidemiological Studies Depression Scale), controlling for patient and caregiver socio-demographic and health factors. KEY RESULTS: Caregiver age and number of health care tasks performed were positively associated with increased HCTD. The quality of the caregiver's relationship with the patient, and self-efficacy were inversely associated with increased HCTD. A onepoint increase in self-efficacy was associated with a significant lower odds of reporting high HCTD (OR, 0.64; 95% CI, 0.54, 0.77).Adjusted linear regression models indicated that high HCTD was independently associated with significantly greater caregiver strain (B, 2.7; 95% CI, 1.12, 4.29) and depression (B, 3.01; 95% CI, 1.06, 4.96). CONCLUSIONS: This study demonstrates that greater HCTD is associated with increased strain and depression among caregivers of multimorbid older adults. That caregiver self-efficacy was strongly associated with HCTD suggests health-system-based educational and empowering interventions might improve caregiver well-being.

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Section: Discussionmentioning

confidence: 90%

Section: Methodsmentioning

confidence: 99%

Difficulty Assisting with Health Care Tasks Among Caregivers of Multimorbid Older Adults

et al. 2011

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“…Caregivers are particularly distressed by their relatives' apathy and distress. (5,41). TAP offered activities that provided pleasure, and caregivers observed immediate benefits.…”

Section: Discussionmentioning

confidence: 99%

Tailored Activities to Manage Neuropsychiatric Behaviors in Persons With Dementia and Reduce Caregiver Burden: A Randomized Pilot Study

Gitlin

Winter

Burke

et al. 2008

American Journal of Geriatric Psychiatry

144

216

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Objective-To test whether the Tailored Activity Program for at-home dementia patients reduces neuropsychiatric behaviors and caregiver burden.Method-A prospective, two-group controlled pilot study with 60 dyads randomized to treatment or wait-list control. Dyads were interviewed at baseline and 4 months (trial endpoint); control participants then received intervention and were reassessed 4 months later. The 8-session occupational therapy intervention involved neuropsychological and functional testing from which activities were customized and instruction in use provided to caregivers. Conclusions-Results suggest clinically-relevant benefits for both dementia patients and caregivers, with treatment minimizing the occurrence of behaviors that commonly trigger nursing home placement. (1) Neuropsychiatric behaviors such as apathy, depressed affect, lability, agitation, and aggressiveness are common occurrences, with most patients manifesting these behaviors over the course of the disease. (2,3,4) Behaviors are the most challenging aspect of caregiving, contributing to caregiver distress, depression, increased care costs, and risk for nursing home placement. (5,6,7,8) There are few tested interventions to minimize behavioral occurrences. Recent research has shown that pharmacological approaches may not be effective and may cause harm (9,10,11). A few caregiver intervention studies report minimal behavioral benefits (12,13,14,15), with most studies not examining patient symptom reduction. Thus, developing and testing nonpharmacological approaches to address behaviors is an important public health priority as articulated in recent position statements by the American Association for Geriatric Psychiatry (16) and Annals of Internal Medicine. (17) One promising approach is activity. Research shows that purposeful activity results in reduced depressive and agitated behaviors. (18,19) However, studies have focused exclusively on nursing home residents, involved small sample sizes, used non-experimental designs, or have not tested systematic approaches to developing activities. Lack of research on communityliving patients is significant given that the home is the primary care setting for this population. Results-At KeywordsThis pilot controlled study evaluates an activity-based intervention, the Tailored Activity Program (TAP) that seeks to reduce behavioral disturbances by identifying patients' preserved capabilities and devising activities that build on them. The trial tested whether tailored activities reduced behavioral occurrences in dementia patients and caregiver burden and enhanced patient engagement, caregiver mastery, self-efficacy, and use of simplification strategies to manage behaviors. Also, because the intervention required caregiver involvement, we evaluated whether caregiver depressive symptoms moderated dementia patient and caregiver outcomes.Using a two-group randomized, parallel design, 60 dyads (dementia patients and their caregivers) were assigned to treatment or wait-list control. Treatment grou...

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“…Using this model, studies report that the association between objective stressors such as BPSD and mental and physical health outcomes of caregivers are mediated by subjective stress appraisal. (15–17) Suffering may be another pathway by which BPSD results depression in caregivers(18) suggesting that perception of the patient’s quality of life and their ability to function daily may affect the caregiver by evoking empathy for the patient.…”

Section: Introductionmentioning

confidence: 99%

The Differential Impact of Unique Behavioral and Psychological Symptoms for the Dementia Caregiver: How and Why Do Patients' Individual Symptom Clusters Impact Caregiver Depressive Symptoms?

Ornstein

Gaugler

Devanand

et al. 2013

The American Journal of Geriatric Psychiatry

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Objectives The behavioral and psychological symptoms associated with dementia (BPSD) are highly burdensome to caregivers. While BPSD consist of a wide variety of patient behaviors including depression, physical aggression and paranoid delusions, it remains unclear whether specific symptoms have a differential impact on caregivers. The aims of this study were (1) to assess how individual BPSD symptoms, categorized based on how they may affect caregivers, impact depressive symptoms for dementia patient caregivers and (2) to test the pathways by which BPSD symptom clusters impact caregiver depressive symptoms. Design Cross-sectional analysis of data from a longitudinal study of patients with Alzheimer’s disease and Dementia with Lewy Bodies. Setting Multiple U.S. dementia clinics. Participants 160 patient-caregiver dyads. Methods Using multivariate GEE logistic models, we analyzed the relationship between four BPSD symptom clusters (patient depressive symptoms, accusatory/aggressive behaviors, non-threatening psychotic symptoms, and difficult to manage behaviors) and caregiver depressive symptoms and assessed mediators of these relationships. Results Only the presence of patient depressive symptoms was associated with caregiver depression (OR=1.55; 95% CI=1.14–2.1). This relationship was mediated by both caregiver report of the symptom’s impact on the patient and perceived burden to caregivers. Conclusions Patient depressive symptoms may be the most important driver of the relationship between BPSD and caregiver depression. Research in this field should further test the effects of individual BPSD symptoms and should also consider how symptoms may negatively impact caregivers by increasing burden and evoking empathy for the patient.

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Patient Suffering and Caregiver Compassion: New Opportunities for Research, Practice, and Policy

Cited by 137 publications

References 65 publications

Difficulty Assisting with Health Care Tasks Among Caregivers of Multimorbid Older Adults

Difficulty Assisting with Health Care Tasks Among Caregivers of Multimorbid Older Adults

Tailored Activities to Manage Neuropsychiatric Behaviors in Persons With Dementia and Reduce Caregiver Burden: A Randomized Pilot Study

The Differential Impact of Unique Behavioral and Psychological Symptoms for the Dementia Caregiver: How and Why Do Patients' Individual Symptom Clusters Impact Caregiver Depressive Symptoms?

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