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).
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 Type
INTERVENTIONAL
Allocation
NA
Purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Enrollment
293
The study intervention is a web-based planning tool, PlanYourLifespan.org
Northwestern University
Chicago, Illinois, United States
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.
Time frame: Assessed at baseline and every 6 months, 36 months reported
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.
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
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.
Time frame: 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.
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Time frame: 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.
Time frame: 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..."
Time frame: 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..."
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: Assessed at 0-36 months, month 36 reported