Assessing the Impact of DAy Programs on Individuals Living With Dementia and Their Family/Friend Caregivers
NCT Number: NCT06496945
Status: NOT_YET_RECRUITING
Study Type: OBSERVATIONAL
Conditions: Adult Day Programs|Continuing Care|Old Age; Dementia|Family/Friend Caregivers
Interventions: OTHER: Adult day program use|OTHER: Other community care (non-attendees)
Sponsor: York University
Collaborators: Carswell Family Foundation|Alzheimer Society of York Region
Sex: ALL
Age: OLDER_ADULT
Enrollment: 3000
Study Design: Observational Model: |Time Perspective: p
Start Date: 2024-08-01
Completion Date: 2027-06-30

Summary:
This study seeks to understand the effects of adult day programs on older adults, especially those with dementia, and their caregivers. A prospective cohort study will be conducted in the Canadian provinces of Alberta, British Columbia, Manitoba, and Ontario. Participants will be (1) older adults with dementia who attend a day program, and their caregivers, and (2) older adults with dementia in the community who do not attend a day program, and their caregivers. The objectives are to (1) evaluate the effects of day programs on attendee and caregiver outcomes, and (2) compare day program use patterns, attendee and caregiver social identities, day program characteristics, and day program outcomes between the 4 provinces, and (3) to explore what attendee and caregiver social identities and day program characteristics are associated with study outcomes, and with day program attendance/non-attendance.

Primary Outcome Measures: Older adult quality of life (self-report), For older adults who can self-report (cognitive performance scale score of \< 3), the DEMQOL will be completed as part of an older adult survey (administered as a standardized interview). The DEMQOL is a tool to assess dementia-specific quality of life, but according to the tool developers, there is no spelled-out version of this acronym. Each of 28 items is rated on a scale from 1 to 4 and items are summed for an overall score from 28 to 112 (higher scores = better quality of life)., Baseline (Jan-Mar 2025), and after 1 and 2 years|Older adult quality of life (proxy-report), For all older adults (including those who can or cannot self-report), the DEMQOL-Proxy will be completed as part of a caregiver survey (administered as a standardized interview). The DEMQOL is a tool to assess dementia-specific quality of life, but according to the tool developers, there is no spelled-out version of this acronym. Each of 31 items is rated on a scale from 1 to 4 and summed for an overall score from 31 to 124 (higher scores = better quality of life)., Baseline (Jan-Mar 2025), and after 1 and 2 years|Caregiver quality of life, As part of our caregiver survey, the C-DEMQOL will be completed (administered as a standardized interview). The C-DEMQOL is a tool to assess quality of life of caregivers to persons with dementia, but according to the tool developers, there is no-spelled out version of this acronym. Each of 30 items is rated on a scale from 1 to 5 and summed for an overall score from 30 to 150 (higher scores = better quality of life)., Baseline (Jan-Mar 2025), and after 1 and 2 years
Secondary Outcome Measures: Older adult mental health, The Neuro Psychiatric Inventory (NPI) will be completed as part of a caregiver survey (administered as a standardized interview). The NPI measures the severity (0 = not present, 1 = mild, 2 = moderate, 3 = severe) of each of 12 neurological and behavioural symptoms of dementia. Symptoms include delusions, hallucinations, agitation/aggression, dysphoria, anxiety, euphoria, apathy, disinhibition, irritability/lability, aberrant motor activity, night-time behavioral disturbances, and appetite and eating abnormalities. Scores are summed for an overall score between 0 and 36 (with higher scores indicating more and more severe symptoms)., Baseline (Jan-Mar 2025), and after 1 and 2 years|Caregiver distress, The Neuro Psychiatric Inventory (NPI) will be completed as part of a caregiver survey (administered as a standardized interview). In addition to the severity of the 12 neurological and behavioural symptoms of dementia mentioned above, the NPI also measures the level of distress each of these symptoms causes to the caregiver (from 0 = not distressing at all to 5 = extreme or very severe). Scores are summed for an overall score between 0 and 60 (with higher scores indicating more severe distress)., Baseline (Jan-Mar 2025), and after 1 and 2 years|Caregiver symptoms of depression, The 10-item Center for Epidemiologic Studies Depression Scale, Short Form (CES-D10) will be completed as part of a caregiver survey (administered as a standardized interview). A cut-point of ≥ 10 will be used to identify clinically significant depressive symptoms, Baseline (Jan-Mar 2025), and after 1 and 2 years|Caregiver symptoms of anxiety, The 7-item Generalized Anxiety Disorder scale (GAD-7) will be completed as part of a caregiver survey (administered as a standardized interview). A cut-point of ≥ 8 will be used to identify clinically significant symptoms of anxiety., Baseline (Jan-Mar 2025), and after 1 and 2 years|Presence or absence of physical decline among older adults, Change in physical functioning will be captured, using the validated RAI-HC Activities of Daily Living Hierarchy (ADLh) scale. The scale ranges from 0 (no impairment) to 6 (maximum impairment), and the outcome will be dichotomous, indicating any increase (versus no change or a decrease) between the previous and follow up measurement in this scale. RAI-HC data are routinely collected by the healthcare system, and we will request data for each participant at each of the specified measurement time points., Baseline (Jan-Mar 2025), and after 1 and 2 years|Presence or absence of cognitive decline among older adults, Change in cognition will be captured, using the validated RAI-HC Cognitive Performance Scale (CPS). The scale ranges from 0 (no impairment) to 6 (maximum impairment), and the outcome will be dichotomous, indicating any increase (versus no change or a decrease) between the previous and follow up measurement in this scale. RAI-HC data are routinely collected by the healthcare system, and we will request data for each participant at each of the specified measurement time points., Baseline (Jan-Mar 2025), and after 1 and 2 years|Older adult time to admission to a continuing care home, Data will come from provincial continuing care registries, which document the start date of any publicly funded continuing care service a person receives, the end date of this service, and the type of service. The outcome will be the time between a person's first RAI-HC assessment and admission to a continuing care home (i.e., an assisted living home or nursing home)., From date of home care admission until the date of admission to a continuing care home or loss to follow up (i.e., death, move out of province), whichever came first, assessed up to 2.5 years (between baseline and 2-year follow up)|Older adult emergency room registrations, The National Ambulatory Care Report System (NACRS) captures all emergency department visits and diagnoses. The outcome will be the yearly average number of a person's emergency department visits., 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025)|Caregiver emergency room registrations, The National Ambulatory Care Report System (NACRS) captures all emergency department visits and diagnoses. The outcome will be the yearly average number of a person's emergency department visits., 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025)|Older adult hospital stays, The Discharge Abstract Database (DAD) includes information on all inpatient hospital stays, including diagnoses and length of stay. The outcome will be the yearly average number of a person's hospital stays., 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025)|Caregiver hospital stays, The Discharge Abstract Database (DAD) includes information on all inpatient hospital stays, including diagnoses and length of stay. The outcome will be the yearly average number of a person's hospital stays., 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025)|Older adult primary care provider visits, Care provider claims data includes health service claims submitted for payment by primary care providers (e.g., general practitioners, nurse practitioners, geriatricians, geriatric psychiatrists, neurologists, therapists). The outcome will be the yearly average number of a person's primary care provider visits., 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025)|Caregiver primary care provider visits, Care provider claims data includes health service claims submitted for payment by primary care providers (e.g., general practitioners, nurse practitioners, geriatricians, geriatric psychiatrists, neurologists, therapists). The outcome will be the yearly average number of a person's primary care provider visits., 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025)