title: Patient and caregiver goals for dementia care.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Reynolds Department of Geriatric Medicine, University of Oklahoma Health Sciences Center, Oklahoma, USA. lajennings@mednet.ucla.edu.
authors.forename: Lee A
authors.identifier: 0000-0003-3624-0586
authors.initials: LA
authors.lastname: Jennings
authors.affiliation: Department of Health Policy and Management, Fielding School of Public Health, University of California, Los Angeles, Los Angeles, CA, USA.
authors.forename: Alina
authors.initials: A
authors.lastname: Palimaru
authors.affiliation: Department of Psychiatry and Biobehavioral Sciences, Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, Los Angeles, CA, USA.
authors.forename: Maria G
authors.initials: MG
authors.lastname: Corona
authors.affiliation: Department of Psychiatry and Biobehavioral Sciences, Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, Los Angeles, CA, USA.
authors.forename: Xavier E
authors.initials: XE
authors.lastname: Cagigas
authors.affiliation: Multicampus Program in Geriatric Medicine and Gerontology, Division of Geriatrics, David Geffen School of Medicine, University of California, Los Angeles, 10945 Le Conte Ave., Suite 2339, Los Angeles, CA, 90095-1687, USA.
authors.forename: Karina D
authors.initials: KD
authors.lastname: Ramirez
authors.affiliation: Multicampus Program in Geriatric Medicine and Gerontology, Division of Geriatrics, David Geffen School of Medicine, University of California, Los Angeles, 10945 Le Conte Ave., Suite 2339, Los Angeles, CA, 90095-1687, USA.
authors.forename: Tracy
authors.initials: T
authors.lastname: Zhao
authors.affiliation: Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA.
authors.forename: Ron D
authors.initials: RD
authors.lastname: Hays
authors.affiliation: Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA.
authors.forename: Neil S
authors.initials: NS
authors.lastname: Wenger
authors.affiliation: Multicampus Program in Geriatric Medicine and Gerontology, Division of Geriatrics, David Geffen School of Medicine, University of California, Los Angeles, 10945 Le Conte Ave., Suite 2339, Los Angeles, CA, 90095-1687, USA. dreuben@mednet.ucla.edu.
authors.forename: David B
authors.initials: DB
authors.lastname: Reuben
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002140:California; D017028:Caregivers / Q000523:psychology*; D003466:Cultural Characteristics; D003704:Dementia / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006040:Goals; D006630:Hispanic or Latino; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D013315:Stress, Psychological
keywords: Dementia; Goal-oriented care; Patient-centered outcomes; Qualitative