Alzheimer Disease, Mild Cognitive Impairment
Conditions
Keywords
Aging in place, Long term care planning
Brief summary
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).
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.
Interventions
None listed
Sponsors
Northwestern University
National Institute on Aging (NIA)
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Rate of participant long term care planning for Alzheimer's Dementia/Memory Loss | Assessed every 6 months, 108 months reported | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Rate of participant planning for in-home care in the event of Alzheimer's Disease/Memory Loss | Assessed every 6 months, 108 months reported | 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. |
| Rate of participant planning for memory care in the event of Alzheimer's Disease/Memory Loss | Assessed every 6 months, 108 months reported | 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. |
| Rate of participant planning for a hospitalization requiring rehabilitation outside the home | Assessed every 6 months, 108 months reported | 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. |
| Rate of participant planning for a hospitalization requiring in-home care | Assessed every 6 months, 108 months reported | 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. |
| Rate of participant decision-making contemplation: Alzheimer's Dementia/Memory Loss (ADML) | Assessed every 6 months, 108 months reported | 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..." |
| Rate of participant decision-making contemplation: Hospitalization | Assessed every 6 months, 108 months reported | 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..." |
| Participant utilization of long-term care services (RUI) | 72-month timepoint | 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. |
| Previous health experiences: Self and others | 72-month timepoint | 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. |
| Event and Goal Concordance | Assessed every 6 months, 108 months reported | 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. |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORLee A Lindquist, MD MPH MBA
Northwestern University
Outcome results
None listed