Patient and Caregiver Goals for Dementia Care

Published in: Quality of Life Research, Volume 26, Issue 3, pages 685-693 (March 2017). doi: 10.1007/s11136-016-1471-7

Posted on RAND.org on April 02, 2019

by Lee A. Jennings, Alina I. Palimaru, Maria G. Corona, Xavier E. Cagigas, Karina D. Ramirez, Tracy Zhao, Ron D. Hays, Neil S. Wenger, David Reuben

Read More

Access further information on this document at Quality of Life Research

This article was published outside of RAND. The full text of the article can be found at the link above.

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.

Research conducted by

This report is part of the RAND Corporation external publication series. Many RAND studies are published in peer-reviewed scholarly journals, as chapters in commercial books, or as documents published by other organizations.

The RAND Corporation is a nonprofit institution that helps improve policy and decisionmaking through research and analysis. RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.