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
Abstract Background Persons with dementia, their family/friend caregivers, and health systems agree that the preferred place of dementia care is a person’s home. Health systems have struggled to provide sufficient community-based dementia care supports, negatively affecting the health and well-being...
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2025-08-01
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| Online Access: | https://doi.org/10.1186/s12889-025-23896-6 |
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| author | Matthias Hoben Andrea Ubell Colleen J. Maxwell Saleema Allana Malcolm B. Doupe Holly Symonds-Brown David B. Hogan Tamara Daly Kaitlyn C. Tate Adrian Wagg Hung Nguyen Whitney Berta Jennifer Bethell Sienna Caspar Zahra Goodarzi Kimberlyn McGrail Greta G. Cummings Melanie Rowe Kelly Kay Patricia Kostyk Kevin Lazaruk Barbara MacLean Jim Mann Katrina Prescott |
| author_facet | Matthias Hoben Andrea Ubell Colleen J. Maxwell Saleema Allana Malcolm B. Doupe Holly Symonds-Brown David B. Hogan Tamara Daly Kaitlyn C. Tate Adrian Wagg Hung Nguyen Whitney Berta Jennifer Bethell Sienna Caspar Zahra Goodarzi Kimberlyn McGrail Greta G. Cummings Melanie Rowe Kelly Kay Patricia Kostyk Kevin Lazaruk Barbara MacLean Jim Mann Katrina Prescott |
| author_sort | Matthias Hoben |
| collection | DOAJ |
| description | Abstract Background Persons with dementia, their family/friend caregivers, and health systems agree that the preferred place of dementia care is a person’s home. Health systems have struggled to provide sufficient community-based dementia care supports, negatively affecting the health and well-being of persons with dementia and their caregivers. Therefore, dementia care and support of dementia caregivers are critical public health priorities. Adult day programs aim to simultaneously support the health and well-being of persons with dementia and their caregivers, but research focusing on these day program outcomes is lacking. The primary objective of this study was to compare various outcomes of day program attendees with dementia and their caregivers over time to outcomes of non-attendees with dementia in the community (with care needs similar to those of attendees) and their caregivers. Methods In each of four Canadian health regions (York Region, Ontario; Interior Health, British Columbia; Calgary, Alberta; Winnipeg, Manitoba), this study will recruit 250 day program attendees with dementia and their caregivers, and 500 community-based non-attendees with dementia and their caregivers. Applying criteria used by the health system to determine day program eligibility, we will identify non-attendees with care needs similar to those of attendees. We will combine participants’ longitudinal health administrative data with repeated (baseline, 1-year, and 2-year follow-up) surveys to include variables not routinely collected by healthcare systems. Primary study outcomes are quality of life of the person with dementia and their caregiver. Secondary study outcomes include mental health (older adults, caregivers), cognitive and physical decline (older adults), time to admission to congregate care (older adults), and emergency room, hospital, and primary care use (older adults, caregivers). Using a day program survey, we will also assess day program characteristics. Using covariate-adjusted general estimating equations and time-to-event models, we will compare these outcomes between groups of day program exposure (no, low, medium, high). Discussion Persons living with dementia, their caregivers, and health systems urgently need solutions to support living at home with a good quality of life. This study will generate provide evidence on the potential of day programs to address these critical public healt needs. Trial registration ClinicalTrials.gov: NCT06496945. |
| format | Article |
| id | doaj-art-6b531b830036482286bbc859d6ebcb35 |
| institution | Kabale University |
| issn | 1471-2458 |
| language | English |
| publishDate | 2025-08-01 |
| publisher | BMC |
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| series | BMC Public Health |
| spelling | doaj-art-6b531b830036482286bbc859d6ebcb352025-08-24T11:55:45ZengBMCBMC Public Health1471-24582025-08-0125111510.1186/s12889-025-23896-6Assessing 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 evaluationMatthias Hoben0Andrea Ubell1Colleen J. Maxwell2Saleema Allana3Malcolm B. Doupe4Holly Symonds-Brown5David B. Hogan6Tamara Daly7Kaitlyn C. Tate8Adrian Wagg9Hung Nguyen10Whitney Berta11Jennifer Bethell12Sienna Caspar13Zahra Goodarzi14Kimberlyn McGrail15Greta G. Cummings16Melanie Rowe17Kelly Kay18Patricia Kostyk19Kevin Lazaruk20Barbara MacLean21Jim Mann22Katrina Prescott23School of Health Policy and Management, Faculty of Health, York UniversityAlzheimer Society of York RegionSchool of Pharmacy, University of WaterlooArthur Labatt Family School of Nursing, Faculty of Health Sciences, Western UniversityMax Rady Faculty of Health Sciences, College of Medicine, University of ManitobaFaculty of Nursing, College of Health Sciences, University of AlbertaCumming School of Medicine, University of CalgarySchool of Health Policy and Management, Faculty of Health, York UniversityFaculty of Nursing, College of Health Sciences, University of AlbertaDepartment of Medicine, Faculty of Medicine and Dentistry, College of Health Sciences, University of AlbertaSchool of Health Policy and Management, Faculty of Health, York UniversityInstitute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of TorontoICESFaculty of Health Sciences, University of LethbridgeCumming School of Medicine, University of CalgaryCentre for Health Services and Policy Research, School of Population and Public Health, The University of British ColumbiaFaculty of Nursing, College of Health Sciences, University of AlbertaAdvisory Board of the Helen Carswell Chair in Dementia Care, Faculty of Health, York UniversityAdvisory Board of the Helen Carswell Chair in Dementia Care, Faculty of Health, York UniversityAdvisory Board of the Helen Carswell Chair in Dementia Care, Faculty of Health, York UniversityAdvisory Board of the Helen Carswell Chair in Dementia Care, Faculty of Health, York UniversityAdvisory Board of the Helen Carswell Chair in Dementia Care, Faculty of Health, York UniversityAdvisory Board of the Helen Carswell Chair in Dementia Care, Faculty of Health, York UniversityAdvisory Board of the Helen Carswell Chair in Dementia Care, Faculty of Health, York UniversityAbstract Background Persons with dementia, their family/friend caregivers, and health systems agree that the preferred place of dementia care is a person’s home. Health systems have struggled to provide sufficient community-based dementia care supports, negatively affecting the health and well-being of persons with dementia and their caregivers. Therefore, dementia care and support of dementia caregivers are critical public health priorities. Adult day programs aim to simultaneously support the health and well-being of persons with dementia and their caregivers, but research focusing on these day program outcomes is lacking. The primary objective of this study was to compare various outcomes of day program attendees with dementia and their caregivers over time to outcomes of non-attendees with dementia in the community (with care needs similar to those of attendees) and their caregivers. Methods In each of four Canadian health regions (York Region, Ontario; Interior Health, British Columbia; Calgary, Alberta; Winnipeg, Manitoba), this study will recruit 250 day program attendees with dementia and their caregivers, and 500 community-based non-attendees with dementia and their caregivers. Applying criteria used by the health system to determine day program eligibility, we will identify non-attendees with care needs similar to those of attendees. We will combine participants’ longitudinal health administrative data with repeated (baseline, 1-year, and 2-year follow-up) surveys to include variables not routinely collected by healthcare systems. Primary study outcomes are quality of life of the person with dementia and their caregiver. Secondary study outcomes include mental health (older adults, caregivers), cognitive and physical decline (older adults), time to admission to congregate care (older adults), and emergency room, hospital, and primary care use (older adults, caregivers). Using a day program survey, we will also assess day program characteristics. Using covariate-adjusted general estimating equations and time-to-event models, we will compare these outcomes between groups of day program exposure (no, low, medium, high). Discussion Persons living with dementia, their caregivers, and health systems urgently need solutions to support living at home with a good quality of life. This study will generate provide evidence on the potential of day programs to address these critical public healt needs. Trial registration ClinicalTrials.gov: NCT06496945.https://doi.org/10.1186/s12889-025-23896-6Adult day care centersHome care servicesDementiaFamily or friend caregiversAging in placeQuality of life |
| spellingShingle | Matthias Hoben Andrea Ubell Colleen J. Maxwell Saleema Allana Malcolm B. Doupe Holly Symonds-Brown David B. Hogan Tamara Daly Kaitlyn C. Tate Adrian Wagg Hung Nguyen Whitney Berta Jennifer Bethell Sienna Caspar Zahra Goodarzi Kimberlyn McGrail Greta G. Cummings Melanie Rowe Kelly Kay Patricia Kostyk Kevin Lazaruk Barbara MacLean Jim Mann Katrina Prescott 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 Adult day care centers Home care services Dementia Family or friend caregivers Aging in place Quality of life |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| topic | Adult day care centers Home care services Dementia Family or friend caregivers Aging in place Quality of life |
| url | https://doi.org/10.1186/s12889-025-23896-6 |
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