Assessing the Impact of DAy Programs on Individuals Living with Dementia and Their Family/friend Caregivers

NCT06496945 | Recruiting

• 1 other identifier: 563198
• Study Type: observational
• Target: 3,000
• Locations: 1 country
• Sites: 4

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.

Conditions

Adult Day Programs; Continuing Care; Old Age; Dementia; Family/Friend Caregivers

Keywords

Adult day programs; Older adults; Program evaluation; Cohort studies; Health administrative data

Outcome Measures

Primary Outcomes (3)

• 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 Outcomes (13)

• Older adult mental health

  Baseline (Jan-Mar 2025), and after 1 and 2 years

• Caregiver distress

  Baseline (Jan-Mar 2025), and after 1 and 2 years

• Caregiver symptoms of depression

  Baseline (Jan-Mar 2025), and after 1 and 2 years

• Caregiver symptoms of anxiety

  Baseline (Jan-Mar 2025), and after 1 and 2 years

• Presence or absence of physical decline among older adults

  Baseline (Jan-Mar 2025), and after 1 and 2 years

Study Arms (2)

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.

Other: Adult day program use

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: Other community care (non-attendees)

Interventions

Adult day program use OTHER

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.

Day program attendees & caregivers

Other community care (non-attendees) OTHER

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).

Non-attendees & caregivers

Eligibility Criteria

• Age: 65 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

The study focuses on community care systems in the Calgary Health Zone (Alberta), Interior Health Region (British Columbia), Winnipeg Regional Health Authority (Manitoba), and York Region (Ontario). All of these regions assess day program eligibility using comparable processes, criteria, and assessments (i.e. RAI-HC). There are 89 publicly subsidized day programs in Alberta (\~3,300 spaces), 95 (\~1,500 spaces) in British Columbia, 70 (\~1,000 spaces) in Manitoba, and 300 (\~6,000 spaces) in Ontario. The numbers of individuals with dementia in the community are \~32,000 in Alberta, \~47,000 in British Columbia, \~11,000 in Manitoba, \~153,000 in Ontario. The yearly average number of completed RAI-HC assessments is \~20,000-30,000 in Alberta, \~34,000-39,000 in British Columbia, and \~10,000 in Manitoba. The estimated number of day program attendees is \>20,000/year (\>200,000 within the study period), each with multiple assessments.

You may qualify if:

• 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

You may not qualify if:

• 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

Sponsors & Collaborators

• York University: lead
• Carswell Family Foundation: collaborator
• Alzheimer Society of York Region: collaborator

Study Sites (4)

Edmonton and Calgary Health Zones

Edmonton & Calgary, Alberta, Canada

NOT YET RECRUITING

Interior Health Region

Multiple, British Columbia, Canada

NOT YET RECRUITING

Winnipeg Regional Health Authority

Winnipeg, Manitoba, Canada

NOT YET RECRUITING

York Region

Multiple, Ontario, Canada

RECRUITING

Related Publications (1)

• 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.

  PMID: 40830776 DERIVED

MeSH Terms

Conditions

Alzheimer Disease

Condition Hierarchy (Ancestors)

Dementia; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Tauopathies; Neurodegenerative Diseases; Neurocognitive Disorders; Mental Disorders

Study Officials

• Matthias Hoben, Dr rer medic

  York University

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Matthias Hoben, Dr rer medic

CONTACT

+1 437-335-1338; mhoben@yorku.ca

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 2 Years
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor, Helen Carswell Chair in Dementia Care

Study Record Dates

• First Submitted: July 3, 2024
• First Posted: July 11, 2024
• Study Start: November 1, 2024
• Primary Completion: April 30, 2026
• Study Completion (Estimated): June 30, 2027
• Last Updated: January 24, 2025

Record last verified: 2025-01

Data Sharing

• IPD Sharing: Will not share

Locations

CA (4)