Assessing the Impact of DAy Programs on Individuals Living with Dementia and Their Family/friend Caregivers
- Conditions
- Adult Day ProgramsFamily/Friend CaregiversContinuing CareOld Age; Dementia
- Interventions
- Other: Adult day program useOther: Other community care (non-attendees)
- Registration Number
- NCT06496945
- Lead Sponsor
- York University
- Brief 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.
- Detailed Description
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.
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 3000
- Older adults (65+ years) with a diagnosis of dementia, who live in the community, and either attend an adult day program (cohort 1), or receive continuing care in the community with an initial RAI-HC assessment completed (cohort 2)
- Primary caregiver (i.e., most involved with and informed about the care) of an eligible older adult
- Older adults with or without dementia who do not receive any community-based continuing care service
- Day program attendees or community care recipients who do not have a diagnosis of dementia or who are younger than 65 years
- Secondary caregivers
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Arm && Interventions
Group Intervention Description Day program attendees & caregivers Adult day program use 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. Non-attendees & caregivers Other community care (non-attendees) 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.
- Primary Outcome Measures
Name Time Method Older adult quality of life (self-report) Baseline (Jan-Mar 2025), and after 1 and 2 years 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).
Older adult quality of life (proxy-report) Baseline (Jan-Mar 2025), and after 1 and 2 years 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).
Caregiver quality of life Baseline (Jan-Mar 2025), and after 1 and 2 years 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).
- Secondary Outcome Measures
Name Time Method Caregiver symptoms of depression Baseline (Jan-Mar 2025), and after 1 and 2 years 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
Caregiver symptoms of anxiety Baseline (Jan-Mar 2025), and after 1 and 2 years 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.
Caregiver emergency room registrations 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025) 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.
Caregiver hospital stays 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025) 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.
Older adult mental health Baseline (Jan-Mar 2025), and after 1 and 2 years 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).
Caregiver distress Baseline (Jan-Mar 2025), and after 1 and 2 years 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).
Older adult time to admission to a continuing care 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) 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).
Older adult emergency room registrations 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025) 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.
Presence or absence of physical decline among older adults Baseline (Jan-Mar 2025), and after 1 and 2 years 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.
Older adult hospital stays 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025) 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.
Older adult primary care provider visits 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025) 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.
Presence or absence of cognitive decline among older adults Baseline (Jan-Mar 2025), and after 1 and 2 years 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.
Caregiver primary care provider visits 1 and 2 years after the baseline data collection (which is estimated to be carried out Jan-Mar 2025) 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.
Trial Locations
- Locations (4)
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