“Let him speak:” a descriptive qualitative study of the roles and behaviors of family companions in primary care visits among older adults with cognitive impairment

Vick, Judith B.; Amjad, Halima; Smith, Katherine Clegg; Boyd, Cynthia M.; Gitlin, Laura N.; Roth, David L.; Roter, Debra; Wolff, Jennifer L.

doi:10.1002/gps.4732

Cited by 40 publications

(47 citation statements)

References 47 publications

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“…Clinicians bring medical expertise in diagnosing cognitive changes, providing education and support, and guiding management. Our findings support the unique insight that family bring in the context of cognitive impairment as a potentially valuable resource to offer a more complete picture outside of a brief face‐to‐face visit . The fact that family rated patients as having worse cognition than clinicians in the absence of diagnosis suggests potential value of engaging family to improving clinician awareness and detection .…”

Section: Discussionsupporting

confidence: 67%

“…Our findings support the unique insight that family bring in the context of cognitive impairment as a potentially valuable resource to offer a more complete picture outside of a brief face-to-face visit. 18,19 The fact that family rated patients as having worse cognition than clinicians in the absence of diagnosis suggests potential value of engaging family to improving clinician awareness and detection. 6 The finding that memory-related discussion was closely aligned with the clinician's perspective may suggest clinicians feel compelled to discuss memory to reaffirm their own diagnosis.…”

Section: Discussionmentioning

confidence: 99%

“…Although factors related to underdiagnosis of dementia in primary care are well‐established, little is known about factors affecting memory‐related discussion. Persons with cognitive impairment are commonly accompanied to primary care visits by family and other unpaid companions . Family companions may play a role in diagnosis by disclosing concerns to clinicians based on observations of the patient's daily functioning, mood, and behaviors, with evidence suggesting accompanied patients are twice as likely to receive a cognitive impairment diagnosis compared with patients who attend medical visits alone .…”

Section: Introductionmentioning

confidence: 99%

“…Persons with cognitive impairment are commonly accompanied to primary care visits by family and other unpaid companions. 17,18 Family companions may play a role in diagnosis by disclosing concerns to clinicians based on observations of the patient's daily functioning, mood, and behaviors, 6 with evidence suggesting accompanied patients are twice as likely to receive a cognitive impairment diagnosis compared with patients who attend medical visits alone. 4 Although family often facilitate visit communication and advocate for the patient, 18,19 their presence may inhibit memory-related discussion due to stigma, sensitivity to patient emotions, 16,17,20 fear of potential conflict, and concerns for patient autonomy.…”

mentioning

confidence: 99%

“…17,18 Family companions may play a role in diagnosis by disclosing concerns to clinicians based on observations of the patient's daily functioning, mood, and behaviors, 6 with evidence suggesting accompanied patients are twice as likely to receive a cognitive impairment diagnosis compared with patients who attend medical visits alone. 4 Although family often facilitate visit communication and advocate for the patient, 18,19 their presence may inhibit memory-related discussion due to stigma, sensitivity to patient emotions, 16,17,20 fear of potential conflict, and concerns for patient autonomy. 17,21,22 This study leverages unique data encompassing audio-recorded primary care visits of older adults with cognitive impairment, objective measures of cognitive function (the Mini-Mental State Examination), 23 family and clinician ratings of cognition, and documented diagnosis of MCI or dementia 24,25 from the medical record.…”

mentioning

confidence: 99%

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Discussion of memory during primary care visits of older adults with cognitive impairment and accompanying family

Aufill

Amjad

Roter

et al. 2019

Int J Geriat Psychiatry

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Objectives Cognitive impairment is underdiagnosed in primary care. Understanding factors that precipitate memory‐related discussion could inform strategies to improve diagnosis and counseling. We assessed whether: 1) having a cognitive impairment or dementia diagnosis, 2) ratings of cognition by clinicians, or 3) ratings of cognition by family companions were associated with memory‐related discussion during primary care visits. Methods We examined audio‐recorded primary care visits of cognitively impaired patients aged 65 years and older, family companions (n = 93 dyads), and clinicians (n = 14). Cognitive impairment and dementia diagnoses were extracted from the electronic health record. Clinicians and family rated patient cognition on a 10‐point scale in postvisit surveys. We measured memory‐related discussion using a ratio of memory‐related discussion episodes to total visit statements. Results We observed more memory‐related discussion during primary care visits of patients with a diagnosis of mild cognitive impairment (+7.8% episodes; P < .001) or dementia (+26.3% episodes; P < .001) than no diagnosis. Clinician and family ratings of cognition varied by diagnosis: among patients with no diagnosis, family rated worse impairment than clinicians (average: 2.4 versus 1.3; P = .004) while for patients with a dementia diagnosis, clinicians rated worse impairment than family (average: 7.1 versus 5.5; P = .006). Each unit increase in clinician‐rated severity of cognitive impairment was associated with more memory‐related discussion (+2.6% episodes; P < .001); this association was attenuated for family (+0.7% episodes; P = .095). Conclusions Discussion of cognitive impairment appears largely driven by clinician ratings of cognition and presence of an established diagnosis. Findings suggest potential benefit of engaging family to improve cognitive impairment detection in primary care.

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Section: Discussionsupporting

confidence: 67%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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Discussion of memory during primary care visits of older adults with cognitive impairment and accompanying family

Aufill

Amjad

Roter

et al. 2019

Int J Geriat Psychiatry

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Security and Privacy Risks Associated With Adult Patient Portal Accounts in US Hospitals

et al. 2020

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IMPORTANCE Patient portals can help caregivers better manage care for patients, but how caregivers access the patient portal could threaten patient security and privacy.OBJECTIVE To identify the proportions of hospitals that provide proxy accounts to caregivers of adult patients, endorse password sharing with caregivers, and enable patients to restrict the types of information seen by their caregivers. DESIGN, SETTING, AND PARTICIPANTSThis national cross-sectional study included a telephone survey and was conducted from May 21, 2018, to December 20, 2018. The randomly selected sample comprised 1 independent hospital and 1 health system-affiliated general medical hospital from every US state and the District of Columbia. Specialty hospitals and those that did not have a patient portal in place were excluded. An interviewer posing as the daughter of an older adult patient called each hospital to ask about the hospital's patient portal practices. The interviewer used a structured questionnaire to obtain information on proxy account availability, password sharing, and patient control of their own information. MAIN OUTCOMES AND MEASURESThe primary outcome was the proportion of hospitals that provided proxy accounts to caregivers of adult patients. Secondary outcomes were the proportion of hospitals with personnel who endorsed password sharing and the proportion that allowed adult patients to limit the types of information available to caregivers.RESULTS After exclusions, a total of 102 (51 health system-affiliated and 51 independent) hospitals were included in the study. Of these hospitals, 69 (68%) provided proxy accounts to caregivers of adult patients and 26 (25%) did not. In 7 of 102 hospitals (7%), the surveyed personnel did not know if proxy accounts were available. In the 94 hospitals asked about password sharing between the patient and caregiver, personnel in 42 hospitals (45%) endorsed the practice. Among hospitals that provided proxy accounts, only 13 of the 69 hospitals (19%) offered controls that enabled patients to restrict the types of information their proxies could see. CONCLUSIONS AND RELEVANCEThis study found that almost half of surveyed hospital personnel recommended password sharing and that few hospitals enabled patients to limit the types of information seen by those with proxy access. These findings suggest that hospitals and electronic health record (HER) vendors need to improve the availability and setup process of proxy accounts in a way that allows caregivers to care for patients without violating their privacy.

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Family Caregivers’ Experiences With Health Care Workers in the Care of Older Adults With Activity Limitations

et al. 2020

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IMPORTANCE Family and unpaid caregivers often play an active role in managing the care of older adults with activity limitations. OBJECTIVE To examine caregivers' experiences with older adults' health care workers. DESIGN, SETTING, AND PARTICIPANTS This survey study constitutes a secondary analysis of a sample of 1916 family and unpaid caregivers to 1203 community-living older adults with activity limitations who participated in the 2017 National Health and Aging Trends Study. Data analysis was performed January to August 2019. EXPOSURES Caregiver sociodemographic characteristics, caregiving intensity, and frequency speaking with or emailing older adults' health care workers. MAIN OUTCOMES AND MEASURES Caregiver-reported experiences when interacting with older adults' health care workers in the prior year, including being listened to, being asked about understanding of treatments, and being asked about help needed in managing older adults' care. RESULTS Caregivers (mean [SE] age, 59.4 [0.5] years; 63.7% women) assisting community-living older adults with activity limitations reported that they never (56.3%), sometimes or rarely (33.0%), or often (10.7%) spoke with or emailed older adults' health care workers in the prior year. Most caregivers who interacted with older adults' health care workers reported being always (70.6%) or usually (18.2%) listened to and always (54.4%) or usually (17.7%) being asked about their understanding of older adults' treatments. Fewer caregivers reported being always (21.3%) or usually (6.9%) asked whether they needed help managing older adults' care, and nearly one-half (45.0%) were never asked. Caregivers who interacted with older adults' health care workers often (vs sometimes or rarely) were more likely to report being always or usually listened to (94.8% vs 86.9%; P = .004), being asked about understanding treatments (80.1% vs 69.5%; P = .02), and being asked about needing help (40.8% vs 24.1%; P < .001). No other exposures were consistently associated with caregiver experiences. Measures of caregiving intensity, including caring for an older adult with dementia, were not associated with being listened to or asked about understanding, but were associated with being asked about needed help. Although caregivers of persons with dementia were more likely than caregivers of persons without dementia to report always being asked about needed help (26.9% vs 19.0%), a high percentage in both groups were never asked (41.2% vs 46.5%)

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“Let him speak:” a descriptive qualitative study of the roles and behaviors of family companions in primary care visits among older adults with cognitive impairment

Cited by 40 publications

References 47 publications

Discussion of memory during primary care visits of older adults with cognitive impairment and accompanying family

Discussion of memory during primary care visits of older adults with cognitive impairment and accompanying family

Security and Privacy Risks Associated With Adult Patient Portal Accounts in US Hospitals

Family Caregivers’ Experiences With Health Care Workers in the Care of Older Adults With Activity Limitations

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