A communication phenotype for varying information needs among caregivers of persons with dementia.
Background and Objectives Informal caregivers of persons with Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) have limited knowledge of the disease, yet they have immense responsibility, such as medication administration, managing symptoms, assisting with activities of daily...
| Publicado en: | Gerontologist Vol. 66; no. 7; pp. 1 - 10 |
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| Autores principales: | , , , , , , , |
| Formato: | Artículo |
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Oxford University Press / USA
Jul2026
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=195281421&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 195281421 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 00169013 GET jtl: Gerontologist issn: 00169013 maglogo: N pubinfo: dt: Jul2026 vid: 66 iid: 7 pid: 622 pub: Oxford University Press / USA artinfo: ui: 195281421 10.1093/geront/gnag091 ppf: 1 ppct: 9 formats: tig: atl: A communication phenotype for varying information needs among caregivers of persons with dementia. aug: au: Alpert, Jordan M Rothberg, Michael B Paasche-Orlow, Michael K Hashmi, Ardeshir Z Perez-Protto, Silvia Fox, Jacqueline Criswell, Victoria Wittenberg, Elaine affil: Center for Value-Based Care Research, Cleveland Clinic, Cleveland, Ohio, United States Division of General Internal Medicine, Tufts Medical Center, Boston, Massachusetts, United States Center for Geriatric Medicine, Cleveland Clinic, Cleveland, Ohio, United States Department of Intensive Care and Resuscitation, Cleveland Clinic, Cleveland, Ohio, United States Neurological Institute, Cleveland Clinic, Cleveland, Ohio, United States Department of Communication Studies, California State University, Los Angeles, Los Angeles, California, United States su: Medical personnel Qualitative research Interviewing Content analysis Psychological well-being Communication Psychology of caregivers Needs assessment Information-seeking behavior Patients' families Alzheimer's disease Research funding Services for caregivers Information needs Thematic analysis Research methodology Dementia Caregiver attitudes sug: subj: Medical personnel Qualitative research Interviewing Content analysis Psychological well-being Communication Psychology of caregivers Needs assessment Information-seeking behavior Patients' families Alzheimer's disease Research funding Services for caregivers Information needs Thematic analysis Research methodology Dementia Caregiver attitudes keyword: caregivers Caregiving copyrightHolder:The Gerontological Society of America copyrightYear:2026 https://dx.doi.org/10.1093/geront/gnag091 inLanguage:en phenotype publisher:Oxford University Press sameAs:https://pubmed.ncbi.nlm.nih.gov/42082387/ caregivers Caregiving copyrightHolder:The Gerontological Society of America copyrightYear:2026 https://dx.doi.org/10.1093/geront/gnag091 inLanguage:en phenotype publisher:Oxford University Press sameAs:https://pubmed.ncbi.nlm.nih.gov/42082387/ ab: Background and Objectives Informal caregivers of persons with Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) have limited knowledge of the disease, yet they have immense responsibility, such as medication administration, managing symptoms, assisting with activities of daily living, and making end-of-life decisions. Our objective was to explore information seeking among informal caregivers to learn about their information needs. Research Design and Methods We interviewed informal caregivers of persons with AD/ADRD who passed away in the last 2 years. Interviews occurred from July 2024 to June 2025 in a large academic health system. We analyzed information needs of AD/ADRD caregivers using an adapted version of the Four States of Information Needs conceptual framework. We used a deductive-inductive approach, beginning with the existing framework, and then refining it with inductive observations. Results Twenty-seven informal caregivers were interviewed (median age 65 years; 77.8% female; 81.5% white; care provided for a median of 5 years; 63.0% were the patient's child). Four phenotypes were revealed: (a) Proactive Caregivers, who were assertive communicators and motivated to seek information in advance, (b) Activated Caregivers, who had less knowledge than Proactive Caregivers, but communicated with staff and took preemptive measures, (c) Responsive Caregivers, who were overwhelmed and rarely communicated their needs to clinical staff, and (d) Reflective Caregivers, who identified information gaps, but did not always attempt to rectify them. Discussion and Implications The needs of informal caregivers vary. Potentially, clinicians can recognize caregivers' phenotypes and adapt the support they provide to improve the caregiver experience. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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