Alzheimer DiseasePYLNCT03960476
Decision Making and Implementation of Aging-in-Place/Long Term Care Plans Among Older Adults
A study testing PlanYourLifespan.org in people with Alzheimer Disease and Mild Cognitive Impairment, run by Northwestern University at 1 site in United States.
Trial summary
This study seeks to better understand how older adult aging-in-place/long term care decision making and implementation is impacted by age-related changes (e.g. cognition, health literacy, chronic conditions) and social influences (e.g. caregivers/supporters). Read more about this study
- Who is it for?
- Ages 55 years and older
- Conditions the study is for
- Alzheimer Disease, Mild Cognitive Impairment, Long-Term Care Planning
- What is being tested?
- PlanYourLifespan.org
- Type of treatment
- Lifestyle or therapy programme
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 293 participants
- Where
- 1 siteUnited States
- Study dates
- 13 Jan 2020to 28 Feb 2026
- Phase
- Interventional
- Are there results?
- Yes, posted in the registrySummary in the doctors' view
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 55 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Who may be able to join
- Current participant in the LitCog Trial [R01AG03611]
- English-speaking
- Community-dwelling
- Currently use a computer or tablet with internet
Who cannot join
- Previous participation in the Advanced Planning for Home Services study [IH-12-11-4259]
Trial locations and contacts
1 site in 1 country.
About this study
This study seeks to better understand how older adult aging-in-place/long term care decision making and implementation is impacted by age-related changes (e.g. cognition, health literacy, chronic conditions) and social influences (e.g. caregivers/supporters).
Read the detailed description
Subjects who are part of the National Institute on Aging (NIA)-funded LitCog study will be given access to PlanYourLifespan.org, a web-based decision-making and planning tool. Participants will be followed for up to 42 months to examine the mediating/moderating factors involved in decision-making, timing of decision implementation, and goal concordance. Findings have the potential to inform healthcare providers, caregivers, health/long term care insurers, area agencies on aging, and older adults nationally in supporting aging-in-place decisions and services use.
- Being tested
- PlanYourLifespan.org
- Medical subject headings
- Alzheimer Disease, Cognitive Dysfunction
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
PlanYourLifespan.orgBehavioural
The study intervention is a web-based planning tool, PlanYourLifespan.org
| Study group | Role | What they receive |
|---|---|---|
| Access to Web-Based Intervention | Experimental | All study participants will be given access to the web-based study intervention, PlanYourLifespan.org. Receives: Behavioral: PlanYourLifespan.org |
What is being measured
The primary outcome is the main question the study is designed to answer.
Rate of Participant Long Term Care Planning for Alzheimer's Dementia/Memory Loss
Participants were 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. Percentage given below is the % of participants who indicated "YES", that they have decided on their living preferences. All statistical analyses for this outcome reflect data at the 36 month assessment.
Measured: Assessed at baseline and every 6 months, 36 months reported
Secondary outcomes (9)
Rate of Participant Planning for In Home Care in the Event of Alzheimer's Disease/Memory Loss
Participants were 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. Percentage below is percentage of participants who reported positively that they had a plan for the scenario. Frequencies here are given for 36 month timepoint.
Measured: assessed 0-36 months, month 36 reported
Rate of Participant Planning for Memory Care in the Event of Alzheimer's Disease/Memory Loss
Participants were 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. Percentage below is percentage of participants who reported positively ("Yes")that they had a plan for the scenario. Frequencies here are given for 36 month timepoint.
Measured: Assessed at 0-36 months, month 36 reported
Rate of Participant Planning for the Event of Hospitalization Requiring Rehabilitation Outside the Home
Participants were 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. Percentage below is percentage of participants who reported positively ("Yes") that they had a plan for the scenario. Frequencies here are given for 36 month timepoint.
Measured: Assessed at 0-36 months, month 36 reported
Rate of Participant Planning for the Event of Hospitalization Requiring In-home Care
Participants were 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. Percentage below is percentage of participants who reported positively ("Yes") that they had a plan for the scenario. Frequencies here are given for 36 month timepoint.
Measured: Assessed at 0-36 months, month 36 reported
Participant Decision Making Contemplation Rates- Alzheimer's Dementia/Memory Loss (ADML)
Participants were asked a panel of statements about contemplation for decision-making in the event of Alzheimer's Dementia/Memory Loss (ADML). Participants were 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 36 month timepoint per primary outcome analysis. Each statement is prefixed by "How much have you thought about..."
Measured: Assessed at 0-36 months, month 36 reported
Participant Decision Making Contemplation Rates- Hospitalization
Participants were asked a panel of statements about contemplation for decision-making in the event of Hospitalization. Participants were 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 36 month timepoint per primary outcome analysis. Each statement is prefixed by "How much have you thought about..."
Measured: Assessed at 0-36 months, month 36 reported
Participant Utilization of Long-term Care Services
Participant utilization of long-term care services such as in-home caregivers as measured by the Resource Use Inventory. Frequencies below are for "yes" responses to individual items on the inventory. This Outcome measure was only collected at the 18 month assessment time point and was collected as part of the LitCog assessment battery. Frequencies below reflect all available data at the 18 month assessment.
Measured: 18 month assessment
Previous Health Experiences- Self and Others
Participants were asked a panel of non-validated questions about their previous health experiences and their experiences with others. Panel was collected at Baseline assessment only.
Measured: Baseline
Event and Goal Concordance
Participants are assessed at each timepoint regarding hospitalization events, 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 here are from 36 Month timepoint.
Measured: Assessed at 0-36 months, month 36 reported
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted23 May 2019
- Study start13 Jan 2020
- Primary completion12 Nov 2024
- Study completion28 Feb 2026
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Posted resultsParticipant flow, outcome measures and adverse events reported by the sponsor.
- Other trials for Alzheimer DiseaseStudies of the same condition, open and under way.
- More trials run by Northwestern UniversityThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Health services research
- Allocation
- Not applicable
- Intervention model
- Single group
- Model description
- All study participants receive access to the web-based study intervention, PlanYourLifespan.org.
- Masking
- None (open label)
- Enrolment
- 293 participants (actual)
Sponsor and investigators
- Lead sponsor
- Northwestern University
- Sponsor type
- University, hospital or other
- Collaborators
- National Institute on Aging (NIA)
- Responsible party
- Principal investigator, Lee Lindquist, Northwestern University
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT03960476
- Sponsor's protocol ID
- R01AG058777
- Other IDs
- 1R01AG058777-01A1
- Acronym
- PYL
- Status last verified
- Apr 2026
- First submitted
- 16 May 2019
- Last updated
- 17 Apr 2026
- Results posted
- Yes, on ClinicalTrials.gov
- Data monitoring committee
- Yes
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 17 Apr 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Decision Making and Implementation of Aging-in-Place/Long Term Care Plans Among Older Adults
- ClinicalTrials.gov ID
- NCT03960476
- Acronym / sponsor ID
- PYL / R01AG058777
- Study type
- Interventional
- Recruitment status
- Completed
- Enrolment
- 293 participants (actual)
- Lead sponsor
- Northwestern UniversityUniversity, hospital or other
- Collaborators
- National Institute on Aging (NIA)
- Study start
- 13 Jan 2020 (actual)
- Primary completion
- 12 Nov 2024 (actual)
- Study completion
- 28 Feb 2026 (actual)
- First posted
- 23 May 2019 (actual)
- Results
- Posted 11 Feb 2026
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
This study seeks to better understand how older adult aging-in-place/long term care decision making and implementation is impacted by age-related changes (e.g. cognition, health literacy, chronic conditions) and social influences (e.g. caregivers/supporters).
Detailed description
Subjects who are part of the National Institute on Aging (NIA)-funded LitCog study will be given access to PlanYourLifespan.org, a web-based decision-making and planning tool. Participants will be followed for up to 42 months to examine the mediating/moderating factors involved in decision-making, timing of decision implementation, and goal concordance. Findings have the potential to inform healthcare providers, caregivers, health/long term care insurers, area agencies on aging, and older adults nationally in supporting aging-in-place decisions and services use.
Study design
- Primary purpose
- Health services research
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Number of arms
- 1
- Model description
- All study participants receive access to the web-based study intervention, PlanYourLifespan.org.
| Arm | Type | Receives |
|---|---|---|
| Access to Web-Based Intervention | Experimental | Behavioral: PlanYourLifespan.orgAll study participants will be given access to the web-based study intervention, PlanYourLifespan.org. |
Who may qualify
- Ages
- 55 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (4 listed)
- Current participant in the LitCog Trial [R01AG03611]
- English-speaking
- Community-dwelling
- Currently use a computer or tablet with internet
Key exclusion criteria (1 listed)
- Previous participation in the Advanced Planning for Home Services study [IH-12-11-4259]
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| PlanYourLifespan.orgThe study intervention is a web-based planning tool, PlanYourLifespan.org | Behavioural | Access to Web-Based Intervention |
Primary outcome
Rate of Participant Long Term Care Planning for Alzheimer's Dementia/Memory Loss
Time frame: Assessed at baseline and every 6 months, 36 months reported
Participants were 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. Percentage given below is the % of participants who indicated "YES", that they have decided on their living preferences. All statistical analyses for this outcome reflect data at the 36 month assessment.
9 secondary outcomes
Rate of Participant Planning for In Home Care in the Event of Alzheimer's Disease/Memory Loss
Time frame: assessed 0-36 months, month 36 reported
Rate of Participant Planning for Memory Care in the Event of Alzheimer's Disease/Memory Loss
Time frame: Assessed at 0-36 months, month 36 reported
Rate of Participant Planning for the Event of Hospitalization Requiring Rehabilitation Outside the Home
Time frame: Assessed at 0-36 months, month 36 reported
Rate of Participant Planning for the Event of Hospitalization Requiring In-home Care
Time frame: Assessed at 0-36 months, month 36 reported
Participant Decision Making Contemplation Rates- Alzheimer's Dementia/Memory Loss (ADML)
Time frame: Assessed at 0-36 months, month 36 reported
Participant Decision Making Contemplation Rates- Hospitalization
Time frame: Assessed at 0-36 months, month 36 reported
Participant Utilization of Long-term Care Services
Time frame: 18 month assessment
Previous Health Experiences- Self and Others
Time frame: Baseline
Event and Goal Concordance
Time frame: Assessed at 0-36 months, month 36 reported
Results and safety
Loading the posted results from ClinicalTrials.gov…
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 17 Apr 2026.
- Posted resultsParticipant flow, baseline, all outcome measures and adverse events.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing PlanYourLifespan.org in people with Alzheimer Disease and Mild Cognitive Impairment, run by Northwestern University at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 17 Apr 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
Yes. Results are posted in the registry (first posted 11 Feb 2026). A summary is in the For doctors view, and the full results are on ClinicalTrials.gov.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Rate of Participant Long Term Care Planning for Alzheimer's Dementia/Memory Loss (time frame: Assessed at baseline and every 6 months, 36 months reported). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 17 Apr 2026.