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.
Adult day programs provide critical supports to both, older adults with dementia in the community, and their family/friend caregivers. This is critical because ensuring high-quality care in the community for as long as possible, and avoiding or delaying facility-based continuing care are key priorities of individuals with dementia, their caregivers, and healthcare systems. While 61% of the 597,000 Canadians with dementia live in the community, about 10% of newly admitted nursing home residents have relatively low care needs that could be met in the community with the right supports. Caregivers to individuals with dementia (most of whom are women) provide more care hours per week (26 vs 17) than caregivers to older adults without dementia, are more likely to experience distress (45% vs 26%), and a caregiver's risk of distress is 1.6 times higher if the individual in need of care exhibits behavioural problems. However, research on the effectiveness of day programs is inconsistent. Generally, the methodological quality of studies is poor, and we especially lack Canadian research and research on individuals with multiple, intersecting vulnerabilities. Our research objectives are: 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.
Study Type
OBSERVATIONAL
Enrollment
3,000
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.
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).
Edmonton and Calgary Health Zones
Edmonton & Calgary, Alberta, Canada
NOT_YET_RECRUITINGInterior Health Region
Multiple, British Columbia, Canada
NOT_YET_RECRUITINGWinnipeg Regional Health Authority
Winnipeg, Manitoba, Canada
NOT_YET_RECRUITINGYork Region
Multiple, Ontario, Canada
RECRUITINGOlder 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).
Time frame: 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).
Time frame: 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).
Time frame: Baseline (Jan-Mar 2025), and after 1 and 2 years
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).
Time frame: 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).
Time frame: 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
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: 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).
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025)
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