Alzheimer Disease, Long-Term Care Planning, Mild Cognitive Impairment
Conditions
Brief 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).
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.
Interventions
BEHAVIORALPlanYourLifespan.org
The study intervention is a web-based planning tool, PlanYourLifespan.org
Sponsors
Northwestern University
National Institute on Aging (NIA)
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Intervention model description
All study participants receive access to the web-based study intervention, PlanYourLifespan.org.
Eligibility
Sex/Gender
ALL
Age
55 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Current participant in the LitCog Trial \[R01AG03611\] * English-speaking * Community-dwelling * Currently use a computer or tablet with internet
Exclusion criteria
* Previous participation in the Advanced Planning for Home Services study \[IH-12-11-4259\]
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Rate of Participant Long Term Care Planning for Alzheimer's Dementia/Memory Loss | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Rate of Participant Planning for In Home Care in the Event of Alzheimer's Disease/Memory Loss | assessed 0-36 months, month 36 reported | 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. |
| Rate of Participant Planning for Memory Care in the Event of Alzheimer's Disease/Memory Loss | Assessed at 0-36 months, month 36 reported | 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. |
| Rate of Participant Planning for the Event of Hospitalization Requiring Rehabilitation Outside the Home | Assessed at 0-36 months, month 36 reported | 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. |
| Rate of Participant Planning for the Event of Hospitalization Requiring In-home Care | Assessed at 0-36 months, month 36 reported | 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. |
| Participant Decision Making Contemplation Rates- Alzheimer's Dementia/Memory Loss (ADML) | Assessed at 0-36 months, month 36 reported | 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..." |
| Participant Decision Making Contemplation Rates- Hospitalization | Assessed at 0-36 months, month 36 reported | 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..." |
| Participant Utilization of Long-term Care Services | 18 month assessment | 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. |
| Previous Health Experiences- Self and Others | Baseline | 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. |
| Event and Goal Concordance | Assessed at 0-36 months, month 36 reported | 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. |
Countries
United States
Participant flow
Recruitment details
293 Participants were recruited and given access to the web-based intervention PlanYourLifespan.org. Participants were assessed at Baseline, 1 month post baseline, and at 6 month intervals thereafter (6/12/18 months post baseline, etc). 36 Months Post-Baseline is the timepoint of interest for all primary and secondary outcomes. No partial data has been reported for any outcome. Reported data and values will not be updated.
Baseline characteristics
| Characteristic | — |
|---|---|
| Age, Continuous | 73.8 years STANDARD_DEVIATION 5.23 |
| Ethnicity (NIH/OMB) Hispanic or Latino | 13 Participants |
| Ethnicity (NIH/OMB) Not Hispanic or Latino | 273 Participants |
| Ethnicity (NIH/OMB) Unknown or Not Reported | 7 Participants |
| Race (NIH/OMB) American Indian or Alaska Native | 0 Participants |
| Race (NIH/OMB) Asian | 8 Participants |
| Race (NIH/OMB) Black or African American | 83 Participants |
| Race (NIH/OMB) More than one race | 3 Participants |
| Race (NIH/OMB) Native Hawaiian or Other Pacific Islander | 0 Participants |
| Race (NIH/OMB) Unknown or Not Reported | 8 Participants |
| Race (NIH/OMB) White | 191 Participants |
| Rate of Participant Long-term care planning for Alzheimer's Dementia/Memory Loss | 121 Participants |
| Sex: Female, Male Female | 213 Participants |
| Sex: Female, Male Male | 80 Participants |
Adverse events
| Event type | EG000 affected / at risk |
|---|---|
| deaths Total, all-cause mortality | 7 / 293 |
| other Total, other adverse events | 0 / 293 |
| serious Total, serious adverse events | 0 / 293 |
Outcome results
None listed