Decision Making and Implementation of Aging-in-Place/Long Term Care Plans Among Older Adults
Phase: NA
Conditions: Alzheimer Disease, Mild Cognitive Impairment, Long-Term Care Planning
Sponsor: Northwestern University

 
 
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PROTOCOL TITLE: 
Decision Making & Implementation of Aging-in-Place/LTC Plans among Older Adults 
 
PRINCIPAL INVESTIGATOR: 
Lee A. Lindquist, MD, MPH, MBA 
General Internal Medicine & Geriatrics, Northwestern University Feinberg 
School of Medicine 
 
CO-INVESTIGATOR: 
Michael S. Wolf, PhD, MPH 
General Internal Medicine & Geriatrics, Northwestern University Feinberg 
School of Medicine 
 
 
VERSION DATE: 
01/29/22 
 

 
 
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1.0 
Purpose of the study: 
The purpose of this study is to better understand how older adult aging-in-place (AIP) 
decision making and implementation is impacted by age-related changes (e.g. cognition, 
function, chronic condition) and social influences. The specific aims of this study are: 
 
 
Aim 1: Determine how decision making and planning for aging-in-place is impacted by 
older adults’ age-related changes (e.g. function, cognition, multi-chronic conditions) and 
social influences (e.g. adult offspring, spouses, friends). 
Aim 2. Examine contemplation of decision making, rates of existing service utilization, 
pre-existing attitudes and their potential for influence on older adult age-related changes 
and social influences in decision making for aging-in-place choices.  
Exploratory Aim 3. Assess whether decision making and planning for aging-in-place 
translates into timely adoption and goal concordance for older adults and their 
surrogate/caregiver decision makers.   
 
2.0 
Background / Literature Review / Rationale for the study: 
 
Remaining in one’s own home is a priority for many older adults. Decision making and 
planning is critical to ensure successful aging-in-place. The most important decision that 
many adults navigate is how to balance age-related changes (e.g. worsening cognition, 
increasing disability) with their needs. Although a great number of seniors will need 
support, prior research has shown that seniors may dismiss planning for their home 
support needs outright (e.g. I plan to die in my sleep before I ever need help).  The 
majority of seniors do not want to leave their home and yet very few people plan for their 
home-based needs that they will require to age-in-place safely. Through our previously 
PCORI-funded research, we developed a tool, PlanYourLifespan.org (PYL), which 
facilitates making decisions and planning to AIP. Through education about future health 
and home-based needs as well as access to these resources, older adults can make choices 
and share them with loved ones for their future needs. PYL was tested in a multi-site 
randomized controlled trial of 385 community-dwelling older adults with 3-month 
follow-up and found to be significantly efficacious in improving decision making 
behaviors towards aging-in-place options among older adults. With a 3-month follow-up, 
we were limited in determining how these decision making plans of older adults 
translated into goal concordance towards AIP. A gap exists in how decision making for 
AIP is impacted by older adults’ age-related changes, social factors, and environments. 
How these plans translate into timely adoption as well as the impact that loved ones have 
on goal concordance has also been unexplored. This study aims to close these gaps in 
knowledge.  
 
3.0 
Inclusion and Exclusion Criteria: 
 
We will be offering the opportunity to participate in this study to the approximately 700 
older adults who are currently enrolled in the LitCog study (STU00026255).   
 
Inclusion criteria: 
1. Be an active participant in the LitCog Trial (e.g. completion of T4 stage)  

 
 
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2. ≥ 55 years old* 
3. English speaking* 
4. Currently use a computer or tablet with internet 
*Note: these are already inclusion criteria of the LitCog Trial therefore we will not 
be re-assessing these criterion for our study 
Exclusion criteria:  
1. Previous participation in the Advanced Planning for Home Services 
(PlanYourLifespan.org) research (STU00080333).  Note: this will be assessed by 
the study team and not self-reported by participant to ensure accuracy. 
4.0 
Sample Size: 
 
We plan on recruiting and enrolling a total 700 participants for this study. This sample 
size was determined given power calculations that will allow us to detect significance of 
our study outcomes.  
 
 
5.0 
Research Locations: 
 
Participants will complete in-person research activities (written consent, baseline survey, 
intervention completion, and post-intervention survey) in research space available at the 
NMHC and Access Community Health Network (ACCESS) locations. Study follow-up 
surveys will take place over the phone.  
 
ACCESS is a Public Health Service 330-funded network of community health centers, 
also known as Federally Qualified Health Centers (FQHCs).  The LitCog study is linked 
to six ACCESS community health centers, however study participants will be able to 
complete the in-person study interview at only one of two ACCESS locations. Staff who 
are employed by ACCESS Community Health Network will not be involved in any 
aspect of recruitment, consent, data collection, and/or data analysis for this study. 
ACCESS will only provide space for the in-person interview (if needed) and all consent 
& data collection procedures will be done by NU personnel if a participant wants to do 
the first study visit at an ACCESS location. All required permissions and/or approvals 
will be obtained at each research location prior to project implementation and submitted 
to the IRB.  
 
6.0 
Multiple sites:  
Northwestern Medicine Division of General Internal Medicine and Geriatrics (GIM-
GER) at the Feinberg School of Medicine will take the lead in collecting and storing the 
study data captured across this study in Aims 1, 2, and 3. Protocols, consent documents, 
and all data collection instruments will be disseminated to all study staff to ensure that 
everyone has the most up to date versions.  
 
7.0 
Reliance Agreements/Single IRB: 

 
 
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N/A 
 
8.0 
Procedures Involved: 
 
Currently enrolled LitCog study participants (STU00026255) who have completed either 
T4 or T5 of that study will be invited to participate in this new, longitudinal, 
observational study. Interested participants who meet the study criteria will schedule a 
time for the in-person interview which will occur in research space available at the 
NMHC or the ACCESS locations, whichever is preferred by the participant and available 
to the study.  
 
At the in-person study visit, participants will provide written informed consent using 
procedures approved by the Institutional Review Board of Northwestern University.  
Research staff will then administer a baseline study survey. Next, research staff will 
introduce subjects to the intervention, the PlanYourLifespan.org website, and provide 
instructions on its use. Research staff will be present to assist with questions as needed on 
navigation but will not assist with decision making or any content-related questions. A 
minimum of 15 minutes and a maximum of 45 minutes will be allotted for navigating the 
website. After completing the time allotted on PlanYourLifespan.org, subjects will 
administer an immediate post-test survey.  
 
There will be a total of 8 follow-up surveys. Research staff will contact participants to 
complete a follow-up survey one month after the in-person interview, and then every six 
months thereafter. Follow-up surveys will be administered over the phone by research 
staff. 
 
A maximum of five phone calls and two voice mail messages will be left for study 
participants. If after five phone call attempts have been made and the participant is not 
able to be reached, they will be considered ‘unable to reach’ for that time-point. Study 
coordinators will continue to reach out to study participants for the subsequent follow-up 
surveys. All follow-up phone surveys will have a target completion of at most 4 weeks 
from the scheduled follow-up interval.   
 
The anticipated duration of this study is 42 months, or 3.5 years, from the time of consent 
to the completion of the final, follow-up study survey. Study participants will not be 
engaged in the study during that entire period.  
 
Time 
(months) 
0 
1 
6 
12 
18 
24 
30 
36 
42 
Survey 
Modality 
In-
person 
pre and 
post-
test 
Phone  
Phone  Phone  Phone  Phone  Phone  Phone  Phone  
 
The in-person meeting which will include the written consent (10 mins), baseline survey 
(30 mins), navigation of PlanYourLifespan.org (min: 15 minutes, max: 45 minutes), and 

 
 
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completion of the post-intervention survey (15 mins) is expected to take between 70 
minutes and 100 minutes of the subject’s in-person time. Each follow-up survey is 
expected to take 15 minutes to complete, and with 8 planned follow-up surveys, they may 
collectively take participants up to 120 minutes, or approximately 2 hours to complete. 
These 15-minute follow-up surveys will be spaced out over 6-month periods. Therefore 
the total time of participation if all study components are completed is estimated to be 
between 190 – 220 minutes (approximately 3-3.5 hours).  
 
Study data will come from multiple sources and includes (1) self-reported data by the 
study participant, (2) data that has been previously collected from the study participants 
from their participation in the LitCog study (e.g. cognition data), and (3) retrieving data 
from the participant’s electronic health record.  All of the electronic health records data 
we plan to analyze from this study will already be collected for the LitCog study. No 
additional electronic health records data will be accessed for this study.  
 
We will collect a wide range of measurements such as process outcomes, cognition 
variables, functional and health variables, and social/environmental variables. 
Additionally we will collect sociodemographic variables, such as race and ethnicity, an 
assessment of PlanYourLifespan.org, and timing and goal concordance. The table below 
illustrates the measures/data that will be collected in this study. Data collection materials 
for each time point are submitted with this application.  
 
  
MEASURES 
DETAILS 
LITCOG  
Collected 
PROCESS OUTCOMES 
  
Previous Health 
Experiences: Self 
& Others 
Participant’s past health experiences with self, 
others.  
Non-validated binary & 
open-ended questions. 
 
Contemplation: 
Hospitalizations 
Participant’s thoughts about issues related to 
hospitalizations 
Non-validated, Likert scale. 
Modified ACP questions. 
 
Decision-Making: 
Hospitalizations 
Decision making specifically related to 
hospitalizations 
Non-validated, open-ended 
 
Healthcare 
Utilization 
  
Hospitalization + Rehabilitation; Emergency 
Department Visit; Urgent care visits (RUI); Medical 
Supplies (RUI); Physical therapy/occupational 
therapy (RUI); Long Term Care Facility Use 
individual items,  Sano, 
2006 
X 
Contemplation:  
AD & Memory Loss 
Participant’s thoughts about issues related to AD & 
memory loss. 
Non-validated, Likert scale. 
Modified ACP questions. 
 
Decision-Making: 
AD & Memory Loss 
Decision making specifically related to AD & memory 
loss. Primary Outcome at 36 Months. 
Non-validated 
binary 
& 
open-ended questions 
 
Website Satisfaction 
Assessment 
Perception of the PYL program, satisfaction, usage.  
Likert 
Scale 
and 
non-
validated binary questions 
 
AGE-RELATED CHANGES - COGNITIVE VARIABLES 
 
General Cognition 
Mini-Mental State Exam 
Folstein, 1975 
X 
Processing Speed 
Digit Comparison 
Salthouse, 1992 
X 
Working Memory 
Size Judgement Span 
Cherry, 1993 
X 
Inductive 
Reasoning 
ETS Letter Sets 
ETS, 1976 
X 
Long Term 
Memory 
New York Paragraph 
Kluger, 1999 
X 
Verbal Ability 
AM-NART 
Grober, 1991 
X 

 
 
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Health Literacy 
Newest Vital Sign (NVS) Rapid Estimate of Literacy 
in Medicine (REALM) 
 
Weiss, 2005, Davis, 1993 
X 
AGE- RELATED CHANGES – FUNCTIONAL and HEALTH VARIABLES 
 
Physical Function 
PROMIS (Physical Function - Short Form 10a)
 
 
Cella, 2010 
X 
Psychological 
Factors 
  
CHAI 
Condon, 2016 
X 
 
Health Status 
Chronic Conditions 
individual items 
X 
Depression (PROMIS Depression - Short Form 8b) 
Anxiety; PROMIS (Anxiety - Short Form 7a)
 
 
Cella, 2010158 
X 
Medication 
  
Prescription Medications 
chart review 
X 
Number of Prescription Medications 
individual item 
X 
Risk Behaviors 
Smoking Status (Current, Former, Never), 
individual item, BRFSS 
Block, 2000 
 
X 
Self-Manage Skills 
Comprehensive Activities Scale (CHAS) 
Curtis, 2015 
X 
 
SOCIAL and ENVIRONMENTAL VARIABLES 
 
Social Support 
Lubben Social Network Scale; Social Support – 
Tangible;  
Lubben 2006159; Woloshin, 
1997 
X 
General Self-
Efficacy 
PROMIS: General Self-Efficacy 
 
 
Self-Efficacy for 
Managing Social 
Interactions 
PROMIS: Self-Efficacy for Managing Social 
Interactions  
PROMIS Short Form 4a 
 
Environmental 
Demands 
Busyness and Routine Scale 
Martin 2003 
X 
Prior Advanced 
Care Planning & 
Perception of 
Needs 
Living Will, Power of Attorney 
individual item 
 
 
 
 
 
Statistical Analyses 
 
Statistical analyses will be carried out by the statistical analysts in SAS 9.4 PROC 
GLIMMIX. For Aim 1 we will model the association between decision making and 
planning for aging-in-place (= outcome) and the predictors age-related changes (e.g. 
cognition, health literacy, multi-chronic conditions) and social influences (e.g. adult 
offspring, spouses) using generalized linear mixed-effects regression models (GLMM) 
over the time period of 0-36 months post-baseline. This model allows us to incorporate 
outcome variables that are continuous, dichotomous, and other types such as count, 
ordinal, and nominal variables. GLMM are well fit for modeling longitudinal data by 
allowing us to incorporate random effects, which account for repeated measurements on 
participants over multiple time points. Additionally, the model uses all available data; not 
requiring all participants to have complete data.  
 

 
 
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Structural Equation Modeling (SEM) will be performed to model relationships between 
cognitive function, health literacy, self-management skills, and aging-in-place outcomes 
(decision making, implementation, goal concordance) along with various mediating 
and/or moderating variables. SEM is an analytical technique in which a hypothetical 
model specifies the anticipated relationships between a series of constructs based on 
theory.  Several statistical techniques (eg, confirmatory factor analysis, path analysis, 
regression) may also be seen as special cases of SEM methods. SEM follows 5 steps: 1) 
model specification, 2) model identification, 3) estimation of the model, 4) testing model 
fit, 5) re-specification, if needed. It is particularly useful when observed variables contain 
measurement error, are interdependent, and when potentially important explanatory 
variables (e.g. explicit resource knowledge, experiences) are not included in a model. 
Each of these cases applies to our models. In addition to allowing for comparisons of 
relative values of direct pathways within a model, SEM provides an explication of total 
effects of each factor on outcome variables by including information about indirect/direct 
effects of each exogenous and mediating variable on the outcomes. We predict that latent 
constructs of health literacy, self-management skills, and usage of PlanYourLifespan.org 
will mediate relationships between cognitive function and aging-in-place outcomes. In 
addition, treatment burden, social support, patient activation, and personality will 
moderate these associations.  We are proposing to model change in these latent constructs 
over the 42 months in a multi-wave model. At each time point, we will model the mean 
level as well as the change (slope) in level of the latent variables. Growth curve 
parameters will be modeled similarly across all sets of constructs.  
 
9.0 
Incomplete Disclosure or Deception: 
N/A 
 
10.0 Recruitment Methods: 
 
Participants who are currently enrolled in the LitCog observational study [R01AG03611, 
PI: Wolf], (STU00026255) and have completed either time point 4 (T4) or time point 5 
(T5) of that study will be offered the opportunity to participate in this study. There are 
currently over 700 older adults who are currently enrolled in the LitCog study.  
 
Research coordinators will reach out to LitCog study participants who have completed T4 
by first mailing an introduction letter summarizing a new research study opportunity to 
their home address on file. LitCog T4 participants that have completed this time point 
within the past year will be prioritized for recruitment.  
 
Approximately 7-10 days after the letters are mailed, a research coordinator will place a 
phone call to participants that did not opt out of being contacted for this new study upon 
receiving the letter. Research staff will 1) explain the study further; 2) confirm 
participant’s study eligibility; and 3) arrange an appointment for the in-person study visit. 
If requested, transportation arrangements to the in-person interview will be made at this 
time.  
 

 
 
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LitCog study participants that have completed T5 will be introduced to the study in-
person on the day they complete their Day 2 survey for that study. Participants will be 
given a study flyer with additional study and contact information. Participants that 
express interest in learning more about the study will then be contacted over the phone by 
a research coordinator within 7-10 days to 1) explain the study further; 2) confirm their 
study eligibility; and 3) arrange an appointment for the in-person study visit. If requested, 
transportation arrangements to the in-person interview will be made at this time.  
 
A maximum of five phone calls and two voice mail messages will be left for potential 
study participants. If after five phone call attempts have been made and the participant is 
not able to be reached, they will be considered ‘unable to reach’. 
 
Written informed consent will be obtained in-person from all study participants 
immediately before commencing the interview. All recruitment material will include the 
study IRB and contact information for the study PI and study manager at Northwestern 
University. 
 
11.0 Consent Process:  
 
At the in-person study visit, subjects will provide written informed consent using 
procedures approved by the Institutional Review Board of Northwestern University.  The 
research study coordinators will go over the informed consent with participants and 
answer any questions they may have. We anticipate the consent process to take 
approximately 10 minutes as all of the study participants have already consented and 
participated in at least one Northwestern IRB approved study (LitCog) and consequently 
will be somewhat familiar with the process.  
 
In order to ensure that participants fully understand the study and procedures, an 
individual’s consent capacity will be assessed by discussing the proposed study and then 
asking specific questions requiring descriptive answers. For example: Can you tell me the 
purpose of this study? Do you have to be in this study? Can you tell me what will happen 
if you agree to take part in this study? How might this study help or not help you? What 
will happen if you decide not to be in the study? If a participant correctly responds to 
these questions, they are deemed able to provide informed consent.  
 
All participants will be given a copy of the signed consent form to keep for their records; 
the original will be kept on file at Northwestern University by the study team and also 
documented on the Study Tracker (formerly eNOTIS). Our study consent will require 
HIPAA Authorization given the electronic health record data collection and use of the 
LitCog data. The HIPAA Authorization language will be included in the consent form. 
 
12.0 Financial Compensation: 
 
Participants will be compensated for their time and participation. Participants will receive 
$100 in cash for completing all of the in-person interview activities. If a participant is 
only able to complete the in-person interview partially, they will be compensated in the 

 
 
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following manner: $25 for the pre-test survey, $50 for the PlanYourLifespan.org 
intervention completion, and $25 for the post-intervention survey. Participants who do 
not complete the intervention and/or the post-intervention survey will not be eligible for 
completion of the phone follow-up surveys and that will mark the end of their 
participation in the study. 
 
Participants will also be compensated for the completion of the follow-up phone surveys. 
Participants will receive a $50 Target gift card for the completion of each follow-up 
phone survey. There will be a maximum of 8 follow-up phone surveys (month 1 – month 
42), for a maximum total of $400 in Target gift cards during the follow-up period. Target 
gift cards will be used to compensate participants for the completion of phone follow-up 
surveys since the compensation will be mailed to study participants and we are unable to 
safely mail cash. The distribution of the financial compensation is specified below: 
 
Participants will only be compensated for the research activities they compete. Therefore, 
if a participant completes all three parts of the in-person interview, and all 8 follow-up 
surveys, they will receive a maximum compensation of $100 in cash and $400 in Target 
gift cards. If they miss any of the phone follow-up surveys, they will not receive a gift 
card for those surveys. If a participant withdraws from the study, they will only receive 
compensation for the surveys they complete. 
 
Participants who communicate to study coordinators that they would like to participate in 
the study but need transportation to/from the in-person interview will be reimbursed for 
travel. Participants that take public transportation will be reimbursed $5 in cash. If a 
participant cannot access public transportation, they may be offered assistance by the 
study coordinators, depending on how far the participant lives. The coordinators will help 
to arrange for transport using ground transportation such as an Uber Health Ride or a pre-
paid cab via Curb. Participants that need wheelchair accessible vehicles and use PACE to 
get to/from the study will be reimbursed the cost of their PACE ride. The cost of this 
transportation will be incurred by the research study, not the study participant. 
 
13.0 Audio/Video Recording/Photography 
 
N/A 
 
14.0 Potential Benefits to Participants:  
Participants in this study may experience a direct benefit from being exposed to the 
intervention, PlanYourLifespan.org. As a result of being exposed to this resource, 
 
 
Day of Intervention 
Follow-Up Survey Months 
 
TOT 
Baseline 
Survey 
Intervention 
Completion 
Post-
PYL 
Survey 
1 
6 
12 
18 
24 
30 
36 
42 
Subject 
$25 
$50 
$25 
$50 
$50 
$50 
$50 
$50 
$50 
$50 
$50 
$500 
Cash 
x 
x 
x 
 
 
 
 
 
 
 
 
$100 
Gift 
Card 
 
x 
x 
x 
x 
x 
x 
x 
x 
$400 

 
 
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participants may increase their knowledge of home-based resources and aging-in-
place/long term care planning options.  
15.0 Risks to Participants: 
There are minimal risks to participation in this study. Some participants may face 
emotional discomfort in answering questions and thinking about their aging-in-place and 
long term care plans. During the consent process, participants will be informed that they 
may choose not to answer any question(s) they do not feel comfortable answering. They 
will also be informed that their involvement in the study is voluntary and they may 
withdraw from the study at any time.  
 
We anticipate there may be special circumstances where a participant would be 
withdrawn from the research without their consent by the person in charge of the research 
study. Possible reasons for removal include having a stroke or other medical event that 
may make it too difficult for the participant to respond to the interviewers’ questions and 
participate in study tasks. We will inform the participant about any new information that 
may affect their health, welfare, or choice to stay in the research study. 
 
16.0 Provisions to Protect the Privacy and Confidentiality of 
Participants and the Research Data: 
 
All subjects participating in any aspects of the research will be informed about their 
rights as research subjects and written informed consent will be obtained. Participants 
have the opportunity to cease participation at any time. Information from participants will 
not be linked to their name and will be assigned a unique identification number. The 
research database will be password protected and accessible only to the research team 
and the Institutional Review Board. Information linking participants with their unique 
identifier will be kept on a separate password-protected desktop computer in a locked 
office within an Administrative Suite in the Division of General Internal Medicine and 
Geriatrics, Northwestern University. These methods are compliant with the “Standards 
for Privacy of Individual Identifiable Health Information” under the Health Insurance 
Portability and Accountability Act of 1996 (HIPAA) Privacy Rule. The research database 
will be password protected and accessible only to the research team and the Institutional 
Review Board. 
 
Information linking subjects’ names and contact information with their unique identified 
will be kept in a separate password protected file. Copies of the consent forms will be 
kept in a locked cabinet only accessible by the research team and a hard copy will be 
given to participants at the in-person workshop. Demographics collected for this study do 
not include any identifiable information. When demographics data is entered into the 
database, a de-identified subject number will be used to identify research subjects. No 
individuals will be identified in any presentations or publications resulting from this 
research with results being shared in aggregate. 
 
17.0 Data Monitoring Plan to Ensure the Safety of Participants: 

 
 
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We have opted to develop a Data Safety and Monitoring Plan (DSMP) for this study in 
order to ensure the safety of participants and the integrity of the study. Adverse events 
(AEs) will be monitored by research staff overseen by the principal investigator. Clinical 
data content will be the primary area to be monitored and not the statistical analysis. We 
will review data at any point that any patient harm occurs. Any necessary action will be 
taken; we will work with the NU IRB to determine what action and reporting will be 
necessary, depending on the AE. Corrective actions will be put into place if needed (e.g., 
if a protocol violation were to take place). All privacy violations, protocol violations, and 
AEs will be reported to and reviewed by the PI (Lindquist), the research team, the IRB, 
as well as the study sponsor, the NIA.  
 
18.0 Data, and if applicable, Specimen Banking:  
Study data will come from several sources. Participant self-reported data will be collected 
electronically using laptop computers to record participant responses. We will use 
Research Electronic Data Capture (REDCap) Surveys software to facilitate data entry. 
REDCap allows for straightforward electronic entry of responses and can generate output 
data files compatible with statistical programs. This is the data collection modality used 
in the LitCog study.  
 
Data that has already been collected from study participants for the LitCog study, in 
addition to data from the Electronic Health Record, will be exported and merged with the 
REDCap file. The consent form for this study will ask participants to re-consent to allow 
for access to the LitCog electronic health record data.  
 
All aggregate study analyses will be done using SAS software.  
 
All research staff will have undergone training in maintaining patient confidentiality and 
will have completed Collaborative Institutional Training Initiative (CITI) training in 
Human Subjects Research.  
 
19.0 Data Sharing: 
 
Data collected from this study will be accessed by NU staff, namely the study PI, Co-I, 
research manager, and research assistants. The responses will be assigned a unique 
passcode and de-identified and any information published and/or shared will be done so 
in aggregate.  
20.0 Qualifications of Research Team to Conduct the Research: 
The research team is comprised of investigators from Northwestern University 
Feinberg School of Medicine, led by Dr. Lee Lindquist, a geriatrician with extensive 
expertise in older adults, caregivers of seniors, and outpatient safety. Co-Investigator, Dr. 
Wolf, is a health services researcher and cognitive/behavioral scientist with a focus in 
adult learning and cognition. Dr. Wolf is the PI of the NIA-funded cohort study, LitCog, 
investigating the association between cognitive function, health literacy, and performance 
on everyday health tasks among older adults. The study has over 10 years of longitudinal 

 
 
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data collected on a large, diverse cohort of older, community dwelling adults. The 
research manager has previous experience in patient centered outcomes research, data 
collection, analysis and consenting of participants. The research assistants have worked 
with the LitCog cohort for several years and are skilled in obtaining informed consent, 
data collection, and participant retention and long-term follow-up. The study team 
leadership will ensure that everyone on the team is made aware of research protocols and 
everyone will be kept up to date if any changes are needed.