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Topics
- (-) Caregiving (22)
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- Transitions of Care (1)
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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 22 of 22 Research Studies DisplayedRamirez M, De Anda S, Jin H
Health information-seeking behavior of Latino caregivers of people living with dementia: a mixed-methods study.
This study examined the health information-seeking behavior of Latino caregivers of people living with dementia. This mixed-methods study used a structured survey and semi-structured interviews with 21 Latino caregivers in Los Angeles, California. Semi-structured interviews were also conducted with six healthcare and social service providers. The results showed that caregivers sought information on what changes to expect as dementia progresses to be better prepared. The most common action they used was to search the Internet. However, those who did were concerned about the quality of information.
AHRQ-funded; HS00046,HS026369.
Citation: Ramirez M, De Anda S, Jin H .
Health information-seeking behavior of Latino caregivers of people living with dementia: a mixed-methods study.
J Appl Gerontol 2023 Aug; 42(8):1738-48. doi: 10.1177/07334648231163430..
Keywords: Caregiving, Dementia, Neurological Disorders, Racial and Ethnic Minorities
Sideman AB, Gilissen J, Harrison KL
Caregiver experiences navigating the diagnostic journey in a rapidly progressing dementia.
This mixed-methods study examined the diagnostic journey experience from the perspective of caregivers of people who died from sporadic Creutzfeldt-Jakob Disease (sCJD). Qualitative data were drawn from interviews with former caregivers of 12 people who had died from sCJD. Four overarching themes were identified, as well as 4 phases along the diagnostic journey. Findings suggested that more work was needed to improve clinician diagnostic knowledge and communication practices. The authors also noted that caregivers need better support during the diagnostic journey and concluded that lessons learned from studying sCJD and other rapidly progressive dementias is likely to be applicable to more common dementias.
AHRQ-funded; HS022241.
Citation: Sideman AB, Gilissen J, Harrison KL .
Caregiver experiences navigating the diagnostic journey in a rapidly progressing dementia.
J Geriatr Psychiatry Neurol 2023 Jul; 36(4):282-94. doi: 10.1177/08919887221135552..
Keywords: Caregiving, Dementia, Neurological Disorders
Couch E, Belanger E, Gadbois EA
"I know that my role is going to change": a mixed-methods study of the relationship between amyloid-β PET scan results and caregiver burden.
The purpose of this study was to clarify the relationship between amyloid scan results and subjective and objective indicators of burden. The researchers utilized a parallel mixed-methods design using survey data from 1,338 care partners of persons with mild cognitive impairment (MCI) and dementia who received an amyloid scan from the CARE-IDEAS study, and semi-structured interviews with a subsample of 62 care partners. The study found that amyloid was not associated with burden. However, the scan result influenced participants' perceptions of their caregiving role and coping strategies. Care partners to persons with elevated amyloid expected increasing responsibility, while partners to persons without elevated amyloid and mild cognitive impairment did not anticipate changes to their role. Care partners to persons with elevated amyloid reported using knowledge gained from the scan to develop coping strategies. All care partners described needing practical and emotional support.
AHRQ-funded; HS000011.
Citation: Couch E, Belanger E, Gadbois EA .
"I know that my role is going to change": a mixed-methods study of the relationship between amyloid-β PET scan results and caregiver burden.
Aging Clin Exp Res 2023 Feb; 35(2):387-97. doi: 10.1007/s40520-022-02314-6..
Keywords: Caregiving, Dementia
Gaugler JE, Rosebush CA, Zmora R
Outcomes of remote activity monitoring for persons living with dementia over an 18-month period.
The purpose of this study was to evaluate whether Remote Activity Monitoring (RAM) technology was associated with reductions in negative health transitions and service utilization for persons with Alzheimer's disease or a related dementia over an 18-month period. The researchers enrolled 88 recipients and their caregivers in a clinical trial, with 88 care recipients and their caregivers in the RAM intervention arm and 91 care recipients and their caregivers in the control arm. The treatment group had the RAM system installed in their home. The attention control group did not receive RAM technology. Baseline and follow-up surveys assessed whether the care recipient had fallen or wandered in the past 6 months (yes/no). Caregivers were also asked whether the care recipient had used any of the following healthcare services in the past 6 months: nursing home stays, assisted living stays other residential care stays, hospital stays, or emergency room visits. The study found that in adjusted models, emergency department visits were almost 50% lower in the intervention group compared with the control group. In addition, the odds of experiencing a higher frequency of falls versus a lower frequency of falls was 0.36 for those in the intervention group compared with controls. The RAM technology did not have a statistically significant effect on any other outcome. The researchers concluded that although RAM did not provide direct support for the management of behaviors for persons with AD/ADRD, the findings imply that this technology may prevent some adverse health events for people living with dementia in the community. The ongoing, unobtrusive monitoring and system alerts of RAM may have resulted in caregivers identifying activity or the lack thereof that may
have prevented falls and wandering events. In turn, emergency room use among persons with dementia may have been avoided.
have prevented falls and wandering events. In turn, emergency room use among persons with dementia may have been avoided.
AHRQ-funded; HS022836.
Citation: Gaugler JE, Rosebush CA, Zmora R .
Outcomes of remote activity monitoring for persons living with dementia over an 18-month period.
J Am Geriatr Soc 2022 Aug;70(8):2439-42. doi: 10.1111/jgs.17839..
Keywords: Elderly, Dementia, Neurological Disorders, Telehealth, Health Information Technology (HIT), Outcomes, Caregiving
Lee W, Gray SL, Zaslavsky O
Association between having a family member with dementia and perceptions of dementia preventability.
This study examined how having a family history of dementia and caregiving experience are associated with perceptions about and self-efficacy for dementia preventability. Participants were surveyed whether they had a family member with dementia, and if they need whether they served as a caregiver. Of 1,575 respondents, 71% had a family member with dementia, and of those 42% served as a caregiver. People with a family member with dementia were less likely to believe that dementia is preventable and had lower self-efficacy for dementia prevention. Survey participants who were also caregivers had an even lower perception about dementia preventability.
AHRQ-funded; HS022982.
Citation: Lee W, Gray SL, Zaslavsky O .
Association between having a family member with dementia and perceptions of dementia preventability.
Aging Ment Health 2022 Feb;26(2):270-76. doi: 10.1080/13607863.2020.1839866..
Keywords: Dementia, Caregiving, Family Health and History, Prevention, Neurological Disorders
Armstrong MJ, Gamez N, Alliance S
Clinical care and unmet needs of individuals with dementia with Lewy bodies and caregivers: an interview study.
Investigators researched the clinical care preferences of individuals living with dementia and caregivers, particularly dementia with Lewy bodies (DLB). Twenty individuals with DLB and 25 caregivers were interviewed via a semistructured questionnaire. The investigators concluded that improving care for individuals with DLB and their families will require a multipronged strategy including education for non-specialist care providers, increasing specialty care access, improved clinical care services, research to support disease prognosis and treatment decisions, and local and national strategies for enhanced caregiver support.
Citation: Armstrong MJ, Gamez N, Alliance S .
Clinical care and unmet needs of individuals with dementia with Lewy bodies and caregivers: an interview study.
Alzheimer Dis Assoc Disord 2021 Oct-Dec;35(4):327-34. doi: 10.1097/wad.0000000000000459..
Keywords: Dementia, Caregiving, Chronic Conditions, Neurological Disorders, Patient Experience
Zmora R, Zmora LL, Bustamante G
Dementia caregivers' experiences and reactions to remote activity monitoring system alerts.
Technology-based tools, including remote activity monitoring (RAM) systems, have been proposed as valuable aids for family caregivers of people with dementia. Previous analyses have shown limited effects of these systems and highlighted a number of barriers, including false alarms. In this study, the investigators used data from an ongoing embedded mixed method randomized controlled intervention to describe patterns of alerts and their association with receipt of the RAM system and caregiver outcomes.
AHRQ-funded; HS022836.
Citation: Zmora R, Zmora LL, Bustamante G .
Dementia caregivers' experiences and reactions to remote activity monitoring system alerts.
J Gerontol Nurs 2021 Jan;47(1):13-20. doi: 10.3928/00989134-20201208-03.
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Keywords: Elderly, Dementia, Neurological Disorders, Caregiving, Telehealth
Zmora R, Statz TL, Birkeland RW
Transitioning to long-term care: family caregiver experiences of dementia, communities, and counseling.
Previous analyses of interventions targeting relationships between family caregivers of people with Alzheimer's disease and related dementias and residential long-term care (RLTC) staff showed modest associations with caregiver outcomes. This analysis aimed to better understand interpersonal and contextual factors that influence caregiver-staff relationships and identify targets for future interventions to improve these relationships.
AHRQ-funded; HS022836.
Citation: Zmora R, Statz TL, Birkeland RW .
Transitioning to long-term care: family caregiver experiences of dementia, communities, and counseling.
J Aging Health 2021 Jan;33(1-2):133-46. doi: 10.1177/0898264320963588..
Keywords: Elderly, Caregiving, Dementia, Transitions of Care, Long-Term Care, Chronic Conditions
Armstrong MJ, Gamez N, Alliance S
Research priorities of caregivers and individuals with dementia with Lewy bodies: an interview study.
The authors investigated the research priorities of individuals and caregivers living with dementia with Lewy bodies (DLB). Through telephone interviews, they found that individuals with DLB and caregivers identified research needs and highlighted DLB symptoms needing additional research. They recommended that funding be informed by the priorities of all relevant stakeholders and support research investigating causes, natural history, biomarkers, and treatment in addition to research targeting themes regarding living with disease.
AHRQ-funded; HS024159.
Citation: Armstrong MJ, Gamez N, Alliance S .
Research priorities of caregivers and individuals with dementia with Lewy bodies: an interview study.
PLoS One 2020 Oct 7;15(10):e0239279. doi: 10.1371/journal.pone.0239279..
Keywords: Caregiving, Dementia, Neurological Disorders, Patient and Family Engagement, Elderly, Research Methodologies
Merrilees JJ, Bernstein A, Dulaney S
The Care Ecosystem: promoting self-efficacy among dementia family caregivers.
The authors illustrated specific psychosocial interventions aimed at improving self-efficacy among family caregivers enrolled in the Care Ecosystem, a model of navigated care designed to support persons with dementia and their primary caregivers. They identified three categories of Care Team Navigator intervention: emotional, informational, and instrumental support, which are consistent with a psychosocial approach to building self-efficacy. They concluded that their findings demonstrated how a model of navigated care can positively impact self-efficacy among dementia family caregivers.
AHRQ-funded; HS022241.
Citation: Merrilees JJ, Bernstein A, Dulaney S .
The Care Ecosystem: promoting self-efficacy among dementia family caregivers.
Dementia 2020 Aug;19(6):1955-73. doi: 10.1177/1471301218814121..
Keywords: Elderly, Caregiving, Dementia
Mitchell LL, Peterson CM, Rud SR
"It's like a cyber-security blanket": the utility of remote activity monitoring in family dementia care.
Technologies have emerged that aim to help older persons with Alzheimer's disease and related dementias (ADRDs) remain at home while also supporting their caregiving family members. The current study evaluated the acceptability and utility of an in-home remote activity monitoring (RAM) system for 30 family caregivers of persons with ADRD via quantitative survey data collected over a 6-month period and qualitative survey and interview data collected for up to 18 months.
AHRQ-funded; HS022836.
Citation: Mitchell LL, Peterson CM, Rud SR .
"It's like a cyber-security blanket": the utility of remote activity monitoring in family dementia care.
J Appl Gerontol 2020 Jan;39(1):86-98. doi: 10.1177/0733464818760238..
Keywords: Elderly, Dementia, Caregiving, Telehealth, Health Information Technology (HIT)
Hao Z, Ruggiano N
Family-centeredness in dementia care: what is the evidence?
In this systematic review, the authors identified and evaluated intervention studies examining family-centered care in Alzheimer’s disease and related dementias. They discussed further implications for research and practice.
AHRQ-funded; HS026571.
Citation: Hao Z, Ruggiano N .
Family-centeredness in dementia care: what is the evidence?
Soc Work Health Care 2020 Jan;59(1):1-19. doi: 10.1080/00981389.2019.1690089..
Keywords: Dementia, Neurological Disorders, Evidence-Based Practice, Patient-Centered Healthcare, Caregiving
Possin KL, Merrilees JJ, Dulaney S
Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the Care Ecosystem randomized clinical trial.
Few health systems have adopted effective dementia care management programs. The Care Ecosystem is a model for delivering care from centralized hubs across broad geographic areas to caregivers and persons with dementia (PWDs) independently of their health system affiliations. The purpose of this study was to determine whether the Care Ecosystem was effective in improving outcomes important to PWDs, their caregivers, and payers beyond those achieved with usual care.
AHRQ-funded; HS022241.
Citation: Possin KL, Merrilees JJ, Dulaney S .
Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the Care Ecosystem randomized clinical trial.
JAMA Intern Med 2019 Sep 30;179(12):1658-67. doi: 10.1001/jamainternmed.2019.4101..
Keywords: Dementia, Neurological Disorders, Telehealth, Health Information Technology (HIT), Care Management, Healthcare Delivery, Caregiving, Quality of Life
Armstrong MJ, Alliance S, Taylor A
End-of-life experiences in dementia with Lewy bodies: qualitative interviews with former caregivers.
This study examined the knowledge of former caregivers of patients with dementia with Lewy bodies (DLB) and the patients’ end of life (EOL) experiences. Telephone interviews were conducted with a total of 30 caregivers and family members of individuals who died with DLB in the last 5 years. The interviews revealed a lack of knowledge regarding what to expect, EOL time course, advance care planning, medications at the end of life, approaching end of life, and the death experience itself.
AHRQ-funded; HS024159.
Citation: Armstrong MJ, Alliance S, Taylor A .
End-of-life experiences in dementia with Lewy bodies: qualitative interviews with former caregivers.
PLoS One 2019 May 30;14(5):e0217039. doi: 10.1371/journal.pone.0217039..
Keywords: Palliative Care, Dementia, Neurological Disorders, Caregiving
Gaugler JE, Zmora R, Mitchell LL
Six-month effectiveness of remote activity monitoring for persons living with dementia and their family caregivers: an experimental mixed methods study.
This paper describes a pilot study conducted to evaluate the effectiveness of remote activity monitoring (RAM) for persons living with Alzheimer’s disease or a related dementia (ADRD) and their family caregivers. An experimental mixed methods study of 132 persons living with ADRD was conducted for six months. There were mixed results as the early months spent calibrating and modifying the RAM system was challenging for families. For families who care for ADRD patients with less severe cognitive impairment and difficulty navigating around the most there was a statistically significant increase in competence and self-sufficiency. However, it may not be as effective for patients with more severe cognitive impairment.
AHRQ-funded; HS022836.
Citation: Gaugler JE, Zmora R, Mitchell LL .
Six-month effectiveness of remote activity monitoring for persons living with dementia and their family caregivers: an experimental mixed methods study.
Gerontologist 2019 Jan 9;59(1):78-89. doi: 10.1093/geront/gny078..
Keywords: Caregiving, Dementia, Elderly, Health Information Technology (HIT), Neurological Disorders, Quality of Care, Quality Improvement
McCarron HR, Finlay JM, Sims T
Stakeholder engagement to enhance interventions for family caregivers of people with dementia: a case study of care to plan.
This study discusses a case study that uses a community advisory board (CAB) to help interventions for family caregivers of people with dementia. The intervention used is an online dementia caregiver resource called Care to Plan. Transcripts of seven CAB meetings over a 3-year period were reviewed. They looked at: how meetings were conducted and issues that arose; and Care to Plan improvements, how CAB members provided key stakeholder perspectives that resulted in changes in language, functionality, substance and dissemination.
AHRQ-funded; HS022445.
Citation: McCarron HR, Finlay JM, Sims T .
Stakeholder engagement to enhance interventions for family caregivers of people with dementia: a case study of care to plan.
J Gerontol Soc Work 2019 Jan;62(1):29-47. doi: 10.1080/01634372.2018.1505797..
Keywords: Caregiving, Dementia, Neurological Disorders, Patient and Family Engagement
Gilmore-Bykovskyi A, Johnson R, Walljasper L
Underreporting of gender and race/ethnicity differences in NIH-funded dementia caregiver support interventions.
The objective of this study was to determine the inclusion and reporting rates among NIH-funded dementia caregiver support interventions. Findings suggested limited NIH guideline compliance that may reflect a lack of awareness regarding potential gender disparities in caregiving roles. In order to ensure NIH guideline compliance, shared investments from researchers, editors, and reviewers to make certain that group differences are systematically identified and reported are recommended.
AHRQ-funded; HS022548.
Citation: Gilmore-Bykovskyi A, Johnson R, Walljasper L .
Underreporting of gender and race/ethnicity differences in NIH-funded dementia caregiver support interventions.
Am J Alzheimers Dis Other Demen 2018 May;33(3):145-52. doi: 10.1177/1533317517749465..
Keywords: Caregiving, Sex Factors, Racial and Ethnic Minorities, Guidelines, Dementia, Disparities
Jutkowitz E, Kane RL, Gaugler JE
Societal and family lifetime cost of dementia: implications for policy.
This study estimated the cost of dementia and the extra cost of caring for someone with dementia over the cost of caring for someone without dementia. It found that the discounted total lifetime cost of care for a person with dementia was $321,780. Costs for a person with dementia over a lifetime were $184,500 greater (86% incurred by families) than for someone without dementia.
AHRQ-funded; HS024165.
Citation: Jutkowitz E, Kane RL, Gaugler JE .
Societal and family lifetime cost of dementia: implications for policy.
J Am Geriatr Soc 2017 Oct;85(10):2169-75. doi: 10.1111/jgs.15043.
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Keywords: Healthcare Costs, Dementia, Elderly, Caregiving
Jutkowitz E, Kuntz KM, Dowd B
Effects of cognition, function, and behavioral and psychological symptoms on out-of-pocket medical and nursing home expenditures and time spent caregiving for persons with dementia.
This study used cross-sectional data (Aging, Demographics, and Memory Study) to estimate probabilities of experiencing outcomes by clinical features. It found that no clinical feature predicted the probability of having out-of-pocket medical expenditures. For those with medical expenditures, higher cognition and poorer function were associated with more spending.
AHRQ-funded; HS024165.
Citation: Jutkowitz E, Kuntz KM, Dowd B .
Effects of cognition, function, and behavioral and psychological symptoms on out-of-pocket medical and nursing home expenditures and time spent caregiving for persons with dementia.
Alzheimers Dement 2017 Jul;13(7):801-09. doi: 10.1016/j.jalz.2016.12.011.
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Keywords: Caregiving, Dementia, Elderly, Healthcare Costs, Long-Term Care, Neurological Disorders, Nursing Homes
Gaugler JE, Jutkowitz E, Shippee TP
Consistency of dementia caregiver intervention classification: an evidence-based synthesis.
The objective of this review was to systematically examine inconsistencies in how dementia caregiver interventions are classified. When subjecting the classification of interventions to descriptive empirical analysis, extensive inconsistency was apparent. The authors concluded that substantial inconsistency in how dementia caregiver interventions are classified across systematic reviews has hindered the science and practice of dementia caregiver interventions.
AHRQ-funded; HS022445.
Citation: Gaugler JE, Jutkowitz E, Shippee TP .
Consistency of dementia caregiver intervention classification: an evidence-based synthesis.
Int Psychogeriatr 2017 Jan;29(1):19-30. doi: 10.1017/s1041610216001514.
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Keywords: Caregiving, Dementia, Evidence-Based Practice
Gaugler JE, Reese M, Tanler R
Care to Plan: an online tool that offers tailored support to dementia caregivers.
This study developed and tested the feasibility of "Care to Plan" (CtP), an online resource for dementia caregivers (e.g., relatives or unpaid nonrelatives) that generates tailored support recommendations. It concluded that, based on the integrated qualitative and quantitative data, CtP was simple and easy to understand. The streamlined visual layout facilitated utility and the individualized recommendations could meet the needs of users.
AHRQ-funded; HS20948; HS22445.
Citation: Gaugler JE, Reese M, Tanler R .
Care to Plan: an online tool that offers tailored support to dementia caregivers.
Gerontologist 2016 Dec;56(6):1161-74. doi: 10.1093/geront/gnv150.
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Keywords: Caregiving, Dementia, Elderly, Web-Based, Tools & Toolkits
Austrom MG, Lu YY, Perkins AJ
Impact of noncaregiving-related stressors on informal caregiver outcomes.
The researchers studied the most stressful events experienced by spouse caregivers of older adults with Alzheimer s disease during a 6-month period. They found that caregivers reported no stressors 21.5% of the time, 1-2 stressors 25% of the time, and 3 stressors 53% of the time with 318 stressors reported in total. They concluded that their results can be used to develop targeted intervention and support strategies for spouse caregivers experiencing non-caregiving related stressors as well as the traditional challenges with caregiving-related issues.
AHRQ-funded; HS010884.
Citation: Austrom MG, Lu YY, Perkins AJ .
Impact of noncaregiving-related stressors on informal caregiver outcomes.
Am J Alzheimers Dis Other Demen 2014 Aug;29(5):426-32. doi: 10.1177/1533317513518652.
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Keywords: Caregiving, Dementia, Elderly, Stress