Development of a Longitudinal Dataset of Persons With Dementia and Their Caregivers Through End-of-Life: A Statistical Analysis System Algorithm for Joining National Health and Aging Trends Study/National Study of Caregiving.
Background: Alzheimer's disease and related dementias (AD/ADRD) are terminal conditions impacting families and caregivers, particularly at end-of-life. Longitudinal, secondary data analyses present opportunities for insight into dementia caregiving and decision-making over time; however, joining com...
| Publicado en: | American Journal of Hospice & Palliative Medicine Vol. 39; no. 9; pp. 1052 - 1061 |
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| Autores principales: | , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Sage Publications Inc.
Sep2022
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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=ccm&AN=158597063&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 158597063 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10499091 1FR8 jtl: American Journal of Hospice & Palliative Medicine issn: 10499091 maglogo: Y pubinfo: dt: Sep2022 vid: 39 iid: 9 pid: 344 pub: Sage Publications Inc. place: Thousand Oaks, California artinfo: ui: 158597063 154753886 158597063 158597063 10.1177/10499091211057291 158597063 ppf: 1052 ppct: 9 formats: tig: atl: Development of a Longitudinal Dataset of Persons With Dementia and Their Caregivers Through End-of-Life: A Statistical Analysis System Algorithm for Joining National Health and Aging Trends Study/National Study of Caregiving. aug: au: Sullivan, Suzanne S. Li, Chin-Shang de Rosa, Cristina Chang, Yu-Ping affil: School of Nursinsg, 12292 University at Buffalo - South Campus, Buffalo, NY, USA sug: subj: Dementia Patients Psychosocial Factors Caregivers Psychosocial Factors Needs Assessment Attitude to Death Coding Algorithms Research Personnel Human Alzheimer's Disease Dementia Advance Care Planning Prospective Studies Aged Aged, 80 and Over Descriptive Statistics Interviews Male Female Funding Source Patient Attitudes Caregiver Attitudes Aged: 65+ years Aged, 80 & over Male Female ab: Background: Alzheimer's disease and related dementias (AD/ADRD) are terminal conditions impacting families and caregivers, particularly at end-of-life. Longitudinal, secondary data analyses present opportunities for insight into dementia caregiving and decision-making over time; however, joining complex datasets and preparing them for analysis poses many challenges. Objectives: To describe an approach to linking national survey data of older adults with their primary caregivers to build a prospective, longitudinal dataset, and to share the Statistical Analysis System (SAS) coding statement algorithms with other researchers. Methods: The National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) are joined using a series of algorithms based on conceptual and operational definitions of dementia, primary caregivers, and the occurrence of death. A series of SAS algorithms resulting in the final longitudinal dataset was created. Results: NHATS/NSOC participants were linked using three preliminary data files (n = 12 427) and one final data join (n = 3305) over nine rounds of data collection. Presence of dementia was defined based on the indicator in the year preceding the last month-of-life (LML) interview. Primary caregivers were defined as the person providing the most frequent care over time. Additional flag variables (LML interview, dementia classification, and cohort (2011 vs 2015)) were created. The SAS algorithms are presented herein. Discussion: The SAS coding statement algorithms provide an opportunity to conduct longitudinal analysis of care for both members of the dyad in the context of dementia and end-of-life. Future research using the proposed dataset can further explore care and caregiving in these populations. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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