Discussing Dementia-Related Behaviors During Medical Visits for People With Alzheimer’s Disease

Hunsaker, Amanda; Schmidt, Karen L.; Lingler, Jennifer H.

doi:10.1177/1533317509357734

Cited by 18 publications

(28 citation statements)

References 23 publications

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“…Companions were present in all of the study sessions, a common feature of medical care for older adults with memory complaints [23, 24]. The majority of the visit companions in this study were spouses and adult children.…”

Section: Discussionmentioning

confidence: 99%

Disclosing genetic risk of Alzheimer’s disease to cognitively impaired patients and visit companions: Findings from the REVEAL Study

Guan

Roter

Erby

et al. 2017

Patient Education and Counseling

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Objective To describe the impact of genetic information on Alzheimer’s disease (AD) risk communication to patients with mild cognitive impairment (MCI) and their visit companions. Methods Participants of the fourth REVEAL Study trial were randomized to receive AD risk assessments with or without genotype results. We coded 79 audio recorded risk disclosure sessions with the Roter Interaction Analysis System. Multilevel analyses explored differences in communication when disclosed risks were based on age and MCI diagnosis alone or in addition to APOE genotype status. Results The addition of genotype results diminished the patient-centered nature of the sessions (p<0.001). When ε4 positive relative to ε4 negative results were disclosed, visit companions were more verbally active (p<0.05), disclosed more medical information (p<0.05), were more positive verbally and non-verbally (p<0.05) and were more proactive in setting the visit agenda (p<0.05). Conclusions Delivery of complex genetic risk information reduces the patient-centeredness of disclosure sessions. Visit companions are more actively engaged in session communication when patients are at increased genetic risk for AD. Practice implications AD risk discussions can be improved by supporting the positive role of visit companions and addressing the challenges inherent in the delivery of complex genetic information in a patient-centered manner.

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Section: Discussionmentioning

confidence: 99%

Disclosing genetic risk of Alzheimer’s disease to cognitively impaired patients and visit companions: Findings from the REVEAL Study

Guan

Roter

Erby

et al. 2017

Patient Education and Counseling

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“…Indeed, health care providers rely primarily, if not exclusively, on information provided by the caregiver to formulate recommendations and evaluate their effect. Informed principally by what the caregiver recalls or chooses to disclose, typically in the presence of the person with dementia during brief medical encounters [27], health care providers may not realize the frequency or intensity of difficult behaviors and the contextual triggers that may contribute to caregiver distress. They can only surmise how the home environment, disruptions in routine, and the caregiver’s manner of avoiding or responding to such behaviors influence the evolution of events surrounding difficult behaviors and the dyad’s interactions, especially as dementia progresses.…”

Section: Introductionmentioning

confidence: 99%

Usability of a Wearable Camera System for Dementia Family Caregivers

Matthews

Lingler

Campbell

et al. 2015

Journal of Healthcare Engineering

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Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers.

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“…Although secondary reports of patient status may be better than having no information at all, it is important that we understand the limitations of these reports. For patients with dementia, family caregivers play critical roles in communicating patient status information to health care providers and advocating for patient care (1, 2). The validity and reliability of their assessment may determine the type and frequency of treatment received by the patient, and their ability to reliably detect change in patient status can play a critical role in evaluating the efficacy of existing therapeutic interventions and experimental pharmacologic agents.…”

Section: Introductionmentioning

confidence: 99%

Magnitude and Causes of Bias Among Family Caregivers Rating Alzheimer Disease Patients

Schulz

Cook

Beach

et al. 2013

The American Journal of Geriatric Psychiatry

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Objective Family caregivers generally underestimate the health and well-being of Alzheimer’s disease (AD) patients when compared to patient self-assessments. The goals of this study were to identify caregiver, patient, and contextual factors associated with caregiver rating bias. Methods 105 patients with AD and their family caregivers were assessed twice by trained interviewers one year apart. In separate interviews, caregivers were asked to rate the quality of life and suffering of their patient relative, and patients provided self-ratings using the same structured instruments. Multivariate cross-sectional and longitudinal analyses were used to identify predictors of caregiver-patient discrepancies. Results Caregivers consistently reported significantly higher levels of suffering and lower levels of quality of life than patients. Caregiver psychological well-being and health status accounted for a substantial portion of the difference in caregiver and patient ratings in both cross-sectional and longitudinal analyses. Caregiver depression and burden were consistently positively associated with the magnitude of caregiver-patient discrepancy, and caregiver health status was negatively associated with the size of the discrepancy. Conclusions Caregiver assessments of dementia patients may determine the type and frequency of treatment received by the patient, and caregivers’ ability to reliably detect change in patient status can play a critical role in evaluating the efficacy of therapeutic interventions and pharmacologic agents. Clinicians and researchers working with dementia patients who rely on caregiver reports of patient status should be sensitive to the health and well-being of the caregiver and recognize that caregiver assessments may be negatively biased when the caregiver’s own well-being is compromised.

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Discussing Dementia-Related Behaviors During Medical Visits for People With Alzheimer’s Disease

Cited by 18 publications

References 23 publications

Disclosing genetic risk of Alzheimer’s disease to cognitively impaired patients and visit companions: Findings from the REVEAL Study

Disclosing genetic risk of Alzheimer’s disease to cognitively impaired patients and visit companions: Findings from the REVEAL Study

Usability of a Wearable Camera System for Dementia Family Caregivers

Magnitude and Causes of Bias Among Family Caregivers Rating Alzheimer Disease Patients

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