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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
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1 to 3 of 3 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