Implementation of AIP Services for Older Adults With AD (PYL-AIP)

Implementation of Aging in Place Services for Older Adults With Alzheimer's Disease

This study will longitudinally follow a cohort of older adults to better understand how decisions about aging in place or transitioning to long-term care-and the implementation of those decisions-are influenced by age-related changes (e.g., cognition, health literacy, chronic conditions) and social supports (e.g., caregivers).

Study Overview

• Status: Not yet recruiting
• Conditions: Alzheimer Disease; Mild Cognitive Impairment

Detailed Description

Participants currently enrolled in the National Institute on Aging (NIA)-funded study Decision Making and Implementation of Aging-in-Place/Long-Term Care Plans Among Older Adults (R01AG058777) will continue to be followed for an additional 42 months.

This study will examine how decision-making and planning related to aging in place change over time and how these processes are influenced by age-related changes (e.g., cognition, multiple chronic conditions), social influences (e.g., adult children, spouses, friends), and environmental factors (e.g., rural vs. urban residence, housing type). The study will also assess whether aging-in-place planning translates into timely implementation of services and whether implemented plans are concordant with the goals and preferences of older adults and their surrogate or caregiver decision makers.

In addition, the study will examine how age-related changes, social influences, and environmental factors interact to affect planning and implementation of aging-in-place and long-term care decisions over time.

• Study Type: Observational
• Enrollment (Estimated): 285

Contacts and Locations

• Study Contact: Name: Vanessa Ramirez-Zohfeld, MPH; Phone Number: 312-503-3916; Email: vanessa-ramirez-0@northwestern.edu
• Study Contact Backup: Name: Charlie Olvera, MA, MS; Email: Charlie.Olvera@Northwestern.edu

Study Locations

• United States
  • Illinois
    • Chicago, Illinois, United States, 60611
      • Northwestern University

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

The study population consists of a cohort of older adults who are currently enrolled in the longitudinal study, R01AG058777. Older adults as well as their caregivers, where appropriate, are being followed over time to assess decision-making and planning related to aging in place and potential transitions to long-term care. The cohort includes individuals with varying levels of cognitive function, health status, chronic conditions, and social support, as well as diverse living environments (e.g., rural and urban settings, different types of housing). Participants will continue to be followed prospectively.

Description

Inclusion Criteria - Current Cohort:

1. Active participant in the 'Decision Making and Implementation of Aging-in-Place/Long Term Care Plans among Older Adults' [R01AG058777] study;
2. Age 65 years or older (older adult); age 18 years or older (caregiver)
3. Speak English; and
4. Pass UBACC (University of California, San Diego Brief Assessment of Capacity to Consent) cognitive assessment

Inclusion Criteria - Caregiver:

1. Age 18 years or older;
2. Speak English;
3. Currently assist enrolled, older adult study participant with activities such as managing their health, and/or household activities (i.e., taking them to the doctor, housekeeping, meal prep, medication reminders); and
4. Pass UBACC (University of California, San Diego Brief Assessment of Capacity to Consent) cognitive assessment

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Rate of participant long term care planning for Alzheimer's Dementia/Memory Loss	Participants are asked "If you developed Alzheimer's or memory loss and could no longer live independently in your home, have you decided what your living preferences (e.g. stay in own home, retirement/long term care community) would be?" Decision-making is measured as a binary ('yes', 'no') outcome at each time-point. Will report % of participants who indicated "YES", that they have decided on their living preferences. Frequencies given for 108 month timepoint per primary outcome analysis.	Assessed every 6 months, 108 months reported

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Rate of participant planning for in-home care in the event of Alzheimer's Disease/Memory Loss	Participants are asked "Have you already decided what your preferences would be if you developed Alzheimer's Disease or memory loss and needed caregiver help in your home?". Responses recorded as binary. Will report % of participants who indicated "YES", that they have decided on their caregiver preferences. Frequencies given for 108 month timepoint per primary outcome analysis.	Assessed every 6 months, 108 months reported
Rate of participant planning for memory care in the event of Alzheimer's Disease/Memory Loss	Participants are asked "Have you decided what your long-term care preferences (e.g. where you would prefer to go if you needed to be in a nursing home or memory care), would be if you ever developed Alzheimer's Disease or memory loss? " Here, participants were specifically asked about "memory care" vs other types of care options. Responses recorded as binary. Will report % of participants who indicated "YES", that they have a plan for that scenario. All statistical analyses for this outcome will reflect data at the 108 month assessment.	Assessed every 6 months, 108 months reported
Rate of participant planning for a hospitalization requiring rehabilitation outside the home	Participants are asked "Have you already decided what your preferences would be if you were hospitalized and needed post-hospitalization rehabilitation outside of the home? " Responses recorded as binary. Will report % of participants who reported positively ("Yes") that they had a plan for the scenario. Frequencies given for 108 month timepoint per primary outcome analysis.	Assessed every 6 months, 108 months reported
Rate of participant planning for a hospitalization requiring in-home care	Participants are asked "Have you already decided what your preferences would be if you were hospitalized and needed caregiver help in your home?" Responses recorded as binary. Will report % of participants who reported positively ("Yes") that they had a plan for the scenario. All statistical analyses for this outcome will reflect data at the 108 month assessment.	Assessed every 6 months, 108 months reported
Rate of participant decision-making contemplation: Alzheimer's Dementia/Memory Loss (ADML)	Participants are asked a panel of statements about contemplation for decision-making in the event of Alzheimer's Dementia/Memory Loss (ADML). Participants are shown a statement and asked to gauge how frequently they contemplated the possibility of the given scenario, ranging from "Never" to "A Lot". Frequencies given for 108 month timepoint per primary outcome analysis. Each statement is prefixed by "How much have you thought about..."	Assessed every 6 months, 108 months reported
Rate of participant decision-making contemplation: Hospitalization	Participants were asked a panel of statements about contemplation for decision-making in the event of Hospitalization. Participants are shown a statement and asked to gauge how frequently they contemplated the possibility of the given scenario, ranging from "Never" to "A lot". Frequencies given for 108 month timepoint per primary outcome analysis. Each statement is prefixed by "How much have you thought about..."	Assessed every 6 months, 108 months reported
Participant utilization of long-term care services (RUI)	Participant utilization of long-term care services such as in-home caregivers as measured by the Resource Use Inventory (RUI). Frequencies provided for "yes" responses to individual items on the inventory. This outcome measure collected as part of the LitCog assessment battery. Frequencies reflect all available data at the 72 month assessment.	72-month timepoint
Previous health experiences: Self and others	Participants are asked a panel of non-validated questions about their previous health experiences and their experiences with others. Frequencies reflect all available data at the 72 month assessment.	72-month timepoint
Event and Goal Concordance	Participants report on any hospitalizations, recent memory loss, and changes in lifestyle due to hospitalization and memory loss. Responses are binary (yes/no), with a N/A and "unsure/don't know" option. Questions are non-validated. Frequencies given for 108 month timepoint per primary outcome analysis.	Assessed every 6 months, 108 months reported

Collaborators and Investigators

• Sponsor: Northwestern University
• Collaborators: National Institute on Aging (NIA)
• Investigators: Principal Investigator: Lee A Lindquist, MD MPH MBA, Northwestern University

Study record dates

Study Major Dates

• Study Start (Estimated): July 1, 2026
• Primary Completion (Estimated): March 31, 2030
• Study Completion (Estimated): December 31, 2031

Study Registration Dates

• First Submitted: January 21, 2026
• First Submitted That Met QC Criteria: January 21, 2026
• First Posted (Actual): January 23, 2026

Study Record Updates

• Last Update Posted (Actual): May 26, 2026
• Last Update Submitted That Met QC Criteria: May 21, 2026
• Last Verified: May 1, 2026

More Information

Terms related to this study

• Keywords: Aging in place; Long term care planning
• Additional Relevant MeSH Terms: Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Mental Disorders; Neurocognitive Disorders; Cognition Disorders; Dementia; Tauopathies; Neurodegenerative Diseases; Cognitive Dysfunction; Alzheimer Disease
• Other Study ID Numbers: R01AG091323-01 (U.S. NIH Grant/Contract)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO
• IPD Plan Description: There is no plan to make IPD and related data dictionaries available.

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No