Abstract
Purpose
Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers.
Methods
We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care.
Results
Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English- and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia.
Conclusions
Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.
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Acknowledgements
We thank Leslie Evertson, GNP, Michelle Panlilio, NP, Jeanine Moreno, GNP, Mihae Kim, NP, and Claudia Wong, NP, Multicampus Program in Geriatric Medicine and Gerontology, David Geffen School of Medicine, University of California, Los Angeles, and Nadia S. Cantuña, J.D., Qualified Dementia Care Specialist, for their assistance with recruitment. We thank the Patient and Caregiver Goals Study Oversight Committee for their review of the goal inventory for dementia care.
Authors’ contribution
LAJ was involved in conception and design, acquisition of data, analysis and interpretation of data; drafted the article; revised the article critically for important intellectual content; involved in final approval. AP and MGC were involved in analysis and interpretation of data; revised the article critically for important intellectual content; involved in final approval. XEC was involved in conception and design, acquisition of data, analysis and interpretation of data; revised the article critically for important intellectual content; involved in final approval. KDR was involved in acquisition of data, analysis and interpretation of data; revised the article critically for important intellectual content; involved in final approval. TZ was involved in acquisition of data; revised the article critically for important intellectual content; involved in final approval. RDH was involved in conception and design, analysis and interpretation of data; revised the article critically for important intellectual content; involved in final approval. NSW and DBR were involved in conception and design, acquisition of data, analysis and interpretation of data; revised the article critically for important intellectual content; involved in final approval.
Funding
This project was supported by a grant from the Patient Centered Outcomes Research Institute (PCORI) (ME-1303-5845). Dr. Jennings was supported by the UCLA Claude Pepper Older Americans Independence Center funded by the National Institute on Aging (NIA) (5P30AG028748)33 and the NIH/National Center for Advancing Translational Science (NCATS) UCLA CTSI Grant Number UL1TR000124. Dr. Hays was supported in part by grants from the NIA (P30-AG021684) and the NIMHD (P20-MD000182). The funders had no role in the in study design, data collection, analysis and interpretation of data, writing of the report, or in the decision to submit the article for publication.
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All procedures performed in this study involving human participants were in accordance with the ethical standards of the UCLA institutional review board and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
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Jennings, L.A., Palimaru, A., Corona, M.G. et al. Patient and caregiver goals for dementia care. Qual Life Res 26, 685–693 (2017). https://doi.org/10.1007/s11136-016-1471-7
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DOI: https://doi.org/10.1007/s11136-016-1471-7