Assessing the Impact of DAy Programs on Individuals Living with Dementia and Their Family/friend Caregivers
NCT ID: NCT06496945
Last Updated: 2025-01-24
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
3000 participants
OBSERVATIONAL
2024-11-01
2027-06-30
Brief Summary
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Detailed Description
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1. To evaluate the association of day program exposure with primary outcomes (better quality of life of attendees and caregivers), and secondary outcomes (better mental health of attendees and caregivers, increased time to admission to congregate care, slower cognitive and physical decline of attendees, lower rates of attendees' and caregivers' emergency room registrations, hospital admissions, and days in hospital)
2. To compare day program use patterns, attendee and caregiver social identities, day program characteristics, and day program outcomes between the 4 provinces
3. To explore what attendee and caregiver social identities, and day program characteristics are associated with primary and secondary outcomes, and with day program attendance/non-attendance
In this prospective, cross-provincial cohort study (York Region, Ontario; Interior Health, British Columbia; Calgary, Alberta; Winnipeg, Manitoba), a total of 1,000 day program attendees with dementia (250 per region), plus their primary caregivers will be recruited. A comparison group of 2,000 non-attendees with dementia and their caregivers will be created. Participants' longitudinal health administrative data will be combined with repeated (baseline and after 1 and 2 years) surveys to include critical variables not routinely collected by healthcare systems (e.g., quality of life, social identities). Primary study outcomes are quality of life of the person with dementia and their caregiver. Secondary study outcomes include mental health of individuals with dementia and caregivers, cognitive and physical decline of individuals with dementia, time to admission to congregate care, and system-level rates of emergency room registrations, hospital admissions, and days in hospital (including alternative level of care) of individuals with dementia and caregivers. Using a day program survey, we will also assess day program characteristics (e.g., number of spaces, staffing, programming). Using general estimating equations and time-to-event models, these outcomes will be compared between groups of day program exposure (no, low, medium, high). Models will be adjusted for community-based services (e.g., home care, respite care), day program characteristics, social identities of older adults and caregivers, time since day program admission, and other older adult and caregiver characteristics.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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Day program attendees & caregivers
Older adults (65+ years), living with a diagnosis of dementia in the community, and attending an adult day program in the Calgary Health Zone (Alberta), Interior Health Region (British Columbia), Winnipeg Regional Health Authority (Manitoba), or York Region (Ontario). Each older adult's primary caregiver (i.e., the person most involved with and informed about the care of the older adult) will also be recruited.
Adult day program use
Day program use patterns will be determined, using Latent Class Analysis. Three continuous variables will be categorized as low, low-moderate, high-moderate, high, using sample distribution quartiles: (1) Time between first RAI-HC assessment and first attendance of a day program, (2) average number of hours of day program attendance (i.e., total number of hours spent in a day program divided by the number of times attended), and (3) total number of days a person attended a day program.
Non-attendees & caregivers
Older adults (65+ years), living with a diagnosis of dementia in the community in the Calgary Health Zone (Alberta), Interior Health Region (British Columbia), Winnipeg Regional Health Authority (Manitoba), or York Region (Ontario), with an initial Resident Assessment Instrument - Home Care (RAI-HC) completed, but who are not attending a day program. Each older adult's primary caregiver (i.e., the person most involved with and informed about the care of the older adult) will also be recruited.
Other community care (non-attendees)
Any publicly funded continuing care services in the community, other than adult day programming (e.g., home care, in-home respite). Community care participants will be propensity score matched with day program participants, using RAI-HC variables on day program eligibility (to ensure similarity of non-attendees to day program attendees). Matching variables will include: physical functioning, cognition, behavioural symptoms, bladder/bowel continence, availability of a caregiver, and caregiver distress. The investigators will also include variables on health and social characteristics (e.g., age, sex, type/duration of publicly funded community care received before the matching index date, deprivation indices).
Interventions
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Adult day program use
Day program use patterns will be determined, using Latent Class Analysis. Three continuous variables will be categorized as low, low-moderate, high-moderate, high, using sample distribution quartiles: (1) Time between first RAI-HC assessment and first attendance of a day program, (2) average number of hours of day program attendance (i.e., total number of hours spent in a day program divided by the number of times attended), and (3) total number of days a person attended a day program.
Other community care (non-attendees)
Any publicly funded continuing care services in the community, other than adult day programming (e.g., home care, in-home respite). Community care participants will be propensity score matched with day program participants, using RAI-HC variables on day program eligibility (to ensure similarity of non-attendees to day program attendees). Matching variables will include: physical functioning, cognition, behavioural symptoms, bladder/bowel continence, availability of a caregiver, and caregiver distress. The investigators will also include variables on health and social characteristics (e.g., age, sex, type/duration of publicly funded community care received before the matching index date, deprivation indices).
Eligibility Criteria
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Inclusion Criteria
* Primary caregiver (i.e., most involved with and informed about the care) of an eligible older adult
Exclusion Criteria
* Day program attendees or community care recipients who do not have a diagnosis of dementia or who are younger than 65 years
* Secondary caregivers
65 Years
ALL
No
Sponsors
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Carswell Family Foundation
UNKNOWN
Alzheimer Society of York Region
UNKNOWN
York University
OTHER
Responsible Party
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Matthias Hoben
Associate Professor, Helen Carswell Chair in Dementia Care
Principal Investigators
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Matthias Hoben, Dr rer medic
Role: PRINCIPAL_INVESTIGATOR
York University
Locations
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Edmonton and Calgary Health Zones
Edmonton & Calgary, Alberta, Canada
Interior Health Region
Multiple, British Columbia, Canada
Winnipeg Regional Health Authority
Winnipeg, Manitoba, Canada
York Region
Multiple, Ontario, Canada
Countries
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Central Contacts
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Facility Contacts
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References
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Hoben M, Ubell A, Maxwell CJ, Allana S, Doupe MB, Symonds-Brown H, Hogan DB, Daly T, Tate KC, Wagg A, Nguyen H, Berta W, Bethell J, Caspar S, Goodarzi Z, McGrail K, Cummings GG, Rowe M, Kay K, Kostyk P, Lazaruk K, MacLean B, Mann J, Prescott K. Assessing the impact of day programs on individuals living with dementia and their family/friend caregivers (AIDA-DemCare): protocol of a prospective cohort study combined with a qualitative evaluation. BMC Public Health. 2025 Aug 19;25(1):2846. doi: 10.1186/s12889-025-23896-6.
Other Identifiers
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563198
Identifier Type: -
Identifier Source: org_study_id
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