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).
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
285
Northwestern University
Chicago, Illinois, United States
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.
Time frame: Assessed every 6 months, 108 months reported
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.
Time frame: 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.
Time frame: 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.
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Time frame: 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.
Time frame: 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..."
Time frame: 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..."
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: Assessed every 6 months, 108 months reported