Integrating Family Caregivers of People With Alzheimer’s Disease and Dementias into Clinical Appointments: Identifying Potential Best Practices

Griffin, Joan M.; Riffin, Catherine; Havyer, Rachel D.; Biggar, Virginia; Comer, Meryl; Frangiosa, Theresa; Bangerter, Lauren R.

doi:10.1177/0733464819880449

Cited by 22 publications

(43 citation statements)

References 36 publications

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“…These limitations notwithstanding, the large and growing cumulative impact of an individual's ADRD diagnosis on a partner's emotional health is suggestive of critical, potentially unmet emotional health needs for older Americans caring for partners with ADRDs. The interdependent nature of health between both members of the dyad observed in this study and earlier research further supports the increasingly recognized need for clinical, family-centered care planning throughout the disease process in consideration of needs of both clinically treated individuals and their partner caregivers (Griffin et al, 2019;Lyons & Lee, 2018;Noel et al, 2015). Absent such efforts, patients with ADRDs may have less than optimal support from family members.…”

Section: Limitationssupporting

confidence: 64%

Associations Between Alzheimer’s Disease and Related Dementias and Depressive Symptoms of Partner Caregivers

2020

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Family members—mainly spouses and partners—are the primary caregivers for individuals with Alzheimer’s disease and related dementias (ADRDs), chronic progressive illnesses requiring increasing levels of care. We performed a retrospective observational analysis comparing depressive symptoms of 16,650 older individuals with partners without ADRDs, and those recently (within 2 years) or less recently diagnosed (≥2 years prior), controlling for lagged sociodemographic and health characteristics. The mean number of reported depressive symptoms was 1.2 ( SD = 1.8). Compared with respondents with partners with no ADRD, having a partner with any ADRD was associated with a 0.35 increase (95% confidence interval [CI] = [0.30, 0.41]), or 30% increase, in depressive symptoms. A less recent partner diagnosis was associated with a 33% increase, while a recent diagnosis was associated with a 27% increase. Clinically meaningful and longitudinally worsening depressive symptoms amplify the need to prioritize partner health and family-centered care following an ADRD diagnosis.

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Section: Limitationssupporting

confidence: 64%

Associations Between Alzheimer’s Disease and Related Dementias and Depressive Symptoms of Partner Caregivers

2020

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“…These service models recognize the important role family members play in providing care and incorporate family caregivers during the delivery of health care to their relatives with dementia. Furthermore, these models encourage health care providers to deliver evidence‐based services and support to both caregivers and people living with dementia 557–559 …”

Section: Caregivingmentioning

confidence: 99%

2021 Alzheimer's disease facts and figures

2021

Alzheimer's & Dementia

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849

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This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on caregivers and society. The Special Report discusses the challenges of providing equitable health care for people with dementia in the United States. An estimated 6.2 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available, making Alzheimer's the sixth‐leading cause of death in the United States and the fifth‐leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. This trajectory of deaths from AD was likely exacerbated in 2020 by the COVID‐19 pandemic. More than 11 million family members and other unpaid caregivers provided an estimated 15.3 billion hours of care to people with Alzheimer's or other dementias in 2020. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $256.7 billion in 2020. Its costs, however, extend to family caregivers’ increased risk for emotional distress and negative mental and physical health outcomes — costs that have been aggravated by COVID‐19. Average per‐person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are more than three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 23 times as great. Total payments in 2021 for health care, long‐term care and hospice services for people age 65 and older with dementia are estimated to be $355 billion. Despite years of efforts to make health care more equitable in the United States, racial and ethnic disparities remain — both in terms of health disparities, which involve differences in the burden of illness, and health care disparities, which involve differences in the ability to use health care services. Blacks, Hispanics, Asian Americans and Native Americans continue to have a higher burden of illness and lower access to health care compared with Whites. Such disparities, which have become more apparent during COVID‐19, extend to dementia care. Surveys commissioned by the Alzheimer's Association recently shed new light on the role of discrimination in dementia care, the varying levels of trust between racial and ethnic groups in medical research, and the differences between groups in their levels of concern about and awareness of Alzheimer's disease. These findings emphasize the need to increase racial and ethnic diversity in both the dementia care workforce and in Alzheimer's clinical trials.

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“…Prior research on companion participation has overwhelmingly used two approaches (Laidsaar-Powell et al, 2013;Troy et al, 2019). In one, retrospective accounts gathered via questionnaires, interviews, and focus groups (e.g., Griffin et al, 2019) are used to characterize companions' experiences of communication in healthcare interactions. These cannot reveal how that communication is organized.…”

Section: Companion Participation In Healthcare Interactionsmentioning

confidence: 99%

Practitioners’ Dilemmas and Strategies in Decision-Making Conversations Where Patients and Companions Take Divergent Positions on a Healthcare Measure: An Observational Study Using Conversation Analysis

Pino

Doehring

Parry

2020

Health Communication

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The presence of companions adds complexity to healthcare interactions. Few studies have characterized challenges arising when interactions involve healthcare professionals (HCPs), patients, and companions, or how those challenges are managed. Using conversation analysis, we examined recorded episodes where patients and companions adopt divergent positions on healthcare measures (e.g., walking aids, homecare, medications). We found nine such episodes within a dataset of 37 palliative care consultations with 37 patients, their companions, and ten healthcare practitioners (HCPs)-doctors, physiotherapists and occupational therapists. Palliative care is one of several healthcare domains where companions substantially contribute to care, consultations, and decision making. We propose that, when patients and companions adopt divergent positions, HCPs face a 'dilemma of affiliation' wherein taking a position on the healthcare measure (e.g., recommending it) entails siding with one party, against the other. By examining what happens in the face of patient-companion divergence, we characterize HCPs' strategies and substantiate our proposal that these reflect an underlying dilemma. We show that: HCPs do not immediately take a position on the healthcare measure after patient-companion divergence emerges; and when HCPs take a position later in the consultation, they do so without ostensibly siding with the party who previously supported the healthcare measure. Further, once an HCP takes a position, the party who supports the measure can treat the HCP as an ally. We offer insights and propose implications for: palliative care; the interactional complexities of healthcare decision-making; and consultations in which companions participate.

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Integrating Family Caregivers of People With Alzheimer’s Disease and Dementias into Clinical Appointments: Identifying Potential Best Practices

Cited by 22 publications

References 36 publications

Associations Between Alzheimer’s Disease and Related Dementias and Depressive Symptoms of Partner Caregivers

Associations Between Alzheimer’s Disease and Related Dementias and Depressive Symptoms of Partner Caregivers

2021 Alzheimer's disease facts and figures

Practitioners’ Dilemmas and Strategies in Decision-Making Conversations Where Patients and Companions Take Divergent Positions on a Healthcare Measure: An Observational Study Using Conversation Analysis

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