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

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

Trial statusRecruiting

Trial phaseNot listed

Trial typeObservational

Biological sexAll

Age65+

SponsorYork University

About this trial

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.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

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

Disqualifiers

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

Trial 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.

Trial design

Design model

Cohort

Time perspective

Prospective

Treatments tested in this trial

Adult day program use
Other intervention
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.
Other community care (non-attendees)
Other intervention
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).

Treatment groups

3,000 Participants

are divided into 2 treatment groups

Group A: Day program attendees & caregivers1 intervention

Group B: Non-attendees & caregivers1 intervention

Trial outcomes

Primary outcomes

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).

Time frame