Developing Patient-Centered Outcomes for Dementia: Goal Setting and Attainment [Methods Study], Los Angeles, California, 2013-2018 (ICPSR 39477)

Version Date: Sep 2, 2025

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Principal Investigator(s):
David B. Reuben, University of California-Los Angeles

https://doi.org/10.3886/ICPSR39477.v1

Version V1

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Summary

Dementia is a health problem that can cause memory loss, trouble doing daily tasks, and behavioral problems. Sometimes patients with dementia and their caregivers have goals for patients that their usual medical care doesn't include. For example, caregivers may want to maintain patients' social activities in the community. They may also want patients to continue to live at home.

The research team wanted to test a process called Goal Attainment Scaling, or GAS, to see if patients and their caregivers could identify, set, and meet goals that were important to them. The team also wanted to see if GAS was valuable to patients and their caregivers.

Citation

Reuben, David B. Developing Patient-Centered Outcomes for Dementia: Goal Setting and Attainment [Methods Study], Los Angeles, California, 2013-2018. Inter-university Consortium for Political and Social Research [distributor], 2025-09-02. https://doi.org/10.3886/ICPSR39477.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1303-5845)

Subject Terms

Geographic Coverage

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2013 -- 2018
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Study Purpose

To test the feasibility and value of a method for care-goal setting and goal attainment for patients with dementia and their caregivers. The study aims were the following:

  1. develop a standard set of goals for patients with dementia and their caregivers;
  2. develop a methodology to revise goals when the clinical or social situation changes;
  3. integrate goal setting and attainment into clinical care

Study Design

The researchers evaluated a method for care-goal setting and attainment called Goal Attainment Scaling (GAS) for patients with dementia and their caregivers to determine whether clinicians could integrate GAS into clinical care and if doing so helped patients. In GAS, patients and caregivers consider care goals across a variety of dimensions when planning for care, such as reducing caregiver burden and improving patients' social functioning.

In the first part of the study, the researchers held focus groups with 7 patients and 36 caregivers to identify goals for persons with dementia and their caregivers. The researchers reviewed focus group transcripts and created a list of goals, such as patient participation in activities outside the home, preventing falls, or reducing the number of healthcare visits.

In the second part of the study, a pilot test of the method, the researchers evaluated whether patients and caregivers could use this list to select care priorities and set goals for themselves. The researchers asked 6 patients and 26 caregivers to choose the three goals they considered most important for the next six months.

In the third and main part of the study, the researchers implemented GAS in a clinical setting. Patient and caregiver dyads worked with nurse practitioner dementia care managers to select goals that were most important to them. The dementia care managers then helped incorporate these goals into patient care. The researchers interviewed patients and caregivers 6 months and 12 months after setting goals to determine progress in achieving their goals.

Universe

Patients with dementia and their caregivers based in Los Angeles, California

Data Source

survey/interview data with 101 patient-caregiver dyads

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Original Release Date

2025-09-02

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Notes

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This study is maintained and distributed by the Patient-Centered Outcomes Data Repository (PCODR). PCODR is the official data repository of the Patient-Centered Outcomes Research Initiative (PCORI).