Adult day programs provide critical supports to older adults living with dementia in the community, and to their family/friend caregivers. However we currently lack robust, large-scale studies that examine the effects of older adult day programs on day program attendees, their family/friend caregivers, day program staff, and the continuing care system. We especially lack studies in Canada. We also lack studies that assess the differential effects of day programs on equity-deserving populations, as well as the different perceptions of and experiences with day programs among equity-deserving subgroups. Another important knowledge gap is what motivates and enables older adults to attend day programs and for what reasons they may not be able or willing to access these programs. Finally we lack economic evaluations of day program cost-effectiveness.
Program Objectives:
The program of research will address critical knowledge gaps related to adult day programs in Canada.
Research program objectives are:
> Conduct a realist review to identify and synthesize the available literature on the positive and negative effects (or the lack of effects) of day programs on older day program attendees, and their family/friend caregivers, – including an evaluation of what does or does not work for whom under what circumstances.
> Conduct an environmental scan of all day programs in (1) the York Region, Ontario, (2) the Winnipeg Regional Health Authority, Manitoba, (3) the Calgary Health Zone, Alberta, and (4) the Interior Health Region, British Columbia, to assess the number and characteristics of these settings.
> Conduct a retrospective cohort study, using de-identified clinical and administrative healthcare data from Western Canada (Alberta, British Columbia, Manitoba), along with semi-structured interviews and focus groups with key informants to help further contextualize our quantitative findings. This will help us understand how to best support older adults, including those living with dementia, and their family/friend care-givers to enable care in the community for as long as possible (aging in place).
> Conduct a prospective cohort study among older day program attendees and their family/friend caregivers in the (1) the York Region, Ontario, (2) the Winnipeg Regional Health Authority, Manitoba, (3) the Calgary Health Zone, Alberta, and (4) the Interior Health Region, British Columbia, to link primary data (e.g., type of day programming received, social determinants of health, out-of-pocket expenses, caregiver burden, client and caregiver quality of life) to their health administrative data to assess the effects of day programs on older adults with dementia, their family/friend caregivers, and the healthcare system.
> Conduct semi-structured interviews and focus groups with day program attendees, their family/friend caregivers, day program staff/managers, and health system/government decision makers, before and after each of the previously mentioned projects to inform each of the projects, to further contextualize project findings, and to assess how these key informants perceive and experience day programs.
Study Design:
This sequential, multi-phase, mixed method evaluation applies an integrated knowledge translation approach, and is informed by a realist lens which seeks to answer the following questions::
- What does or does not work?
- For whom (and to what extent)?
- In which circumstances does it work or not?
- How and why does it work or not?
The realist model expands the traditional causal model in which intervention X leads to a given outcome O. Realism asks what contexts C and mechanisms M allow X to lead to O, so the XO model becomes a CMO model. This CMO model allows the realist evaluation process to be contextually sensitive and exploratory. This is necessary when a topic is under-theorized and under-researched, as in evaluating older adult day programs. To address complex problems pragmatically in the real world, focus on context is essential. Context refers to the social conditions in which mechanisms operate, including social, economic and political structures; healthcare settings; organizational settings or social conditions (e.g. leadership, team interactions, team-client-relationships); program participants (e.g. clients and their families); program staffing and experience; and geographical and historical context. Mechanisms refer to the entities, processes or (social) structures that operate in particular contexts to bring about the outcomes. Mechanisms are not directly observable, but are accessible through theory building and theory testing.
In the context of older adult day programs, examples of mechanisms might be the various activities that individuals with dementia are involved in in these settings and that help them to achieve certain outcomes (e.g., slowing down cognitive or physical decline, feeling meaningfully occupied and valued, increased quality of life, etc.). Another example could be the respite provided to the clients’ family/friend caregivers, which is thought to lead to the outcome of reduced caregiver burden and improved mental health. The outcomes this research program will include are day program attendee outcomes (e.g., quality of life, risk of institutionalization, acute care and primary care use, cognitive and physical decline), family/friend outcomes (e.g., caregiver burden, depression, anxiety, quality of life, physical health, acute care and primary care use, out-of-pocket expenses), day program staff outcomes (e.g., quality of work-life, turnover, use of best practices), and health system outcomes (e.g., number of days older adults lived in the community instead of congregate care settings and associated costs and savings).
The realist review is funded by a CIHR Knowledge Synthesis and Mobilization Grant. It will identify and synthesize available literature on the positive and negative effects of day programs (or lack thereof) on day program attendees with dementia, and their family/friend caregivers. The goal is to develop a program theory to unpack under what circumstances (contexts) day programs may have an effect (outcomes) on older adults living with dementia and their caregivers, and how and why these effects come about (mechanisms). This realist synthesis will inform the other parts of this program of research (e.g., variable selection in the two cohort studies or sampling of participants and focus of questions in the semi-structured interviews and focus groups). Hypotheses developed in the realist review will be tested in the two cohort studies. This project also provides timely evidence for health system and government decision makers and program administrators to consider where and how to allocate resources so that day programs are optimally utilized. Program directors may consider reviewing their designs and partnerships to best benefit their clients. Also, findings can support older individuals with dementia and their family/friend caregivers to make a decision of whether they join a day program. Researchers may use the developed program theories to inform design and objectives of their future studies..
In this prospective cohort study, we will recruit older adults newly admitted to a day program in the York Region, Ontario, as well as their family/friend caregivers. We will create a matched comparison This prospective cohort study is funded by a CIHR Implementation Science Team Grant. We will recruit a total of 1,000 older adults attending a day program and each attendee’s primary caregiver in (1) the York Region, Ontario, (2) the Winnipeg Regional Health Authority, Manitoba, (3) the Calgary Health Zone, Alberta, and (4) the Interior Health Region, British Columbia (i.e., 250 day program attendees and their caregivers in each region). We will create a propensity score matched comparison cohort of older adults not attending a day program and their family/friend caregivers, aiming for two non-attendees and their caregivers for every attendee. We will follow these individuals for 2 years (or until the participant dies, is admitted to a congregate care setting, or is lost to follow up for another reason). We will complete informed consent with participants to obtain their administrative healthcare records and link these administrative healthcare records with annual primary survey data from clients and family/friend caregivers and with structural day program characteristics obtained in an environmental scan. The surveys and environmental scan will provide additional variables, not available in the administrative healthcare data. This study will provide a rich picture of how social determinants of health and day program characteristics are associated with effects of day programs on attendees, family/friend caregivers, and the healthcare system.
Environmental Scan
The goal of this study is to conduct an environmental scan of adult day programs in York Region and Toronto, Ontario. In this study we will collect data on adult day program characteristics through an online survey completed by a day program manager or director of care in each of the day programs located in the York Region, Ontario. The study objective is to create a current snapshot of adult day programs in York Region and Toronto, Ontario. Examples of characteristics assessed include staffing numbers and mix, number of spaces, types of programming provided (e.g., arts-based, recreational), special focus of the program (e.g., dementia), etc. These day program characteristics will also be linked to data collected in the prospective cohort study to assess how day program characteristics may be associated with outcomes of day program attendees, their family/friend caregivers, and health system outcomes.
In this retrospective population-based, cross-provincial cohort study, we propose to use health administrative data from Alberta, British Columbia, and Manitoba with the purpose of understanding of how to best support older adults including those living with dementia, and their family/friend caregivers to enable care in the community for as long as possible.
This will be the first Canadian retrospective, population-based, cross-provincial cohort study, assessing patterns of use/non-use, user/non-user characteristics, and effects of adult day programs on older adults, including those living with dementia. We will apply an intersectionality lens to understand how overlapping social identities, such as age, gender, socioeconomic status, or disability, interact in experiences of discrimination and privilege.
Study objectives:
> Explore patterns of day program use (e.g., variations in time to first attendance, monthly hours of attendance, ongoing vs interrupted attendance, total time of day program exposure), using latent class analyses (LCA), and compare the frequency of each latent use class between provinces and over time.
> Compare social determinants (age, sex, physical/cognitive disability, area-based deprivation indices, caregiver availability/distress) by attendees’ day program use/non-use class, province, and over time.
> Assess whether day program attendees compared to a propensity score matched control group of non-attendees enter care homes at later points in time, use emergency, acute, or primary care less frequently, experience less cognitive and physical decline, have better mental health, and less distressed caregivers, and assess whether these day program effects vary by older adults’ social determinants.
Throughout each of the projects outlined above, we will conduct semi-structured interviews and focus groups with key informants (older adults, their caregivers, day program staff/managers, representatives of Alzheimer societies and caregiver organizations, and health system/government policy makers). We will explore these individuals’ perspectives on why older adults do or do not use a day program, and on how and why day programs have positive, negative, or no effects on different groups of attendees and caregivers, especially those with multiple, intersecting vulnerabilities.