supporting family caregivers of persons living with dementia: effectiveness and sustainability of mt4c-in care

Conditions: Dementia; Family

Summary: when a person living with dementia moves into a long term care facility, their family members remain involved in their care. they learn new roles and make significant and often stressful adjustments. these caregivers are an at-risk group, and evidence suggests that their mental health may actually worsen after the person they are caring for moves into long term care. the research team previously created a free, web-based, interactive, intervention called my tools 4 care-in care (mt4c-in care) and tested it with 37 caregivers in alberta. caregivers found the toolkit to be easy to use, feasible, acceptable, and satisfactory, and reported increased hope and decreased loss and grief, after using it. additionally, they reported that the toolkit helped them through the transitions they experience when their family member lives in long term care. in this next study we want to see if mt4c-in care can improve the quality of life, hope, social support, self-efficacy, and decrease the loss, grief and loneliness of family caregivers. during phase 1 the existing mt4c-in care toolkit was reviewed with input from family caregivers of persons living with dementia in long term care through focus group interviews. the toolkit is now being revised and will be tested, during phase 2, with 280 caregivers of persons living with dementia in long term care across 4 provinces in canada (alberta, ontario, saskatchewan, and manitoba). these caregivers will be randomly assigned into an intervention (caregivers with access to mt4c-in care) and a control group (no access to mt4c-in care).

background: caregivers of persons living with dementia (plwd) in a long term care (ltc) community are an at-risk group, and evidence suggests that the caregiver's mental health may actually worsen after the plwd moves to ltc. caregivers may report feelings of blame, self-doubt, loneliness, isolation, and powerlessness which negatively affect their mental health. this at-risk group requires support to maintain and improve their quality of life. my tools 4 care - in care (mt4c-in care) is a self-administered, multicomponent, flexible, and interactive website designed specifically to support family caregivers of plwd in ltc to address this gap in service and the significant concerns about their mental health. the feasibility study in alberta demonstrated that mt4c-in care is informative, convenient, and easy to use; and shows potential to help caregivers cope with the transitions and adjustments beyond the plwd's admission to ltc, increasing caregivers' hope and decreasing their loss and grief. purpose: the purpose of phase 2 is to implement and evaluate mt4c-in care to assess its effectiveness, and the influence of participant factors (i.e., gender, cultural background, age, etc.) on the use of mt4c-in care across four canadian provinces (alberta, saskatchewan, manitoba, and ontario). the ability of mt4c-in care to improve hope, self-efficacy, quality of life, social support, and mental health, and decrease grief and loneliness will be rigorously assessed in a pragmatic effectiveness trial with a large sample. the rigorous pragmatic trial, with in-depth mixed methods, will demonstrate whether mt4c-in care works across four canadian provinces as well as the reasons and mechanisms underlying its effects. mt4c-in care will be updated based on pragmatic trial results in jan-feb 2022. participants: total of approximately 280 participants from four provinces will be recruited (100 each from alberta and ontario and 40 each from saskatchewan and manitoba). each province will hire a recruitment specialist, and alzheimer societies and other community partners within each province will support recruitment of participants by including information in newsletters, distributing brochures, and/or attending support group meetings, etc. recruited participants will be randomly assigned to the intervention and control group (140 participants each group) via a centralized web-based randomization service (redcap). data collection: trained research assistants in each province will 1) track all participants' participation throughout the study, 2) conduct surveys with all participants by phone to assess whether or not the intervention was effective in improving outcomes over time, as compared to the control group, and 3) conduct in-depth telephone interview with five to fifteen participants (depending on the province; see below). number of participants in surveys and in-depth interviews: alberta and ontario: surveys with all 100 participants and in-depth interviews with 15 participants; saskatchewan and manitoba: surveys with all 40 participants and in-depth interview with 5 participants. outcome data collection: immediately before and after the intervention, outcome and process data will be collected from all caregivers.there will be 3 data collection points: baseline before the start of the intervention; 2-month follow up immediately post-intervention; 4 month follow up after the end of the intervention. data analysis: outcome will be analyzed (using generalized estimating equations) to assess whether mt4c-in care is effective in the intervention as compared to the control group over time. we anticipate that the intervention group will experience improved hope, mental health, quality of life, social support, and self-efficacy, and less loneliness and grief, as compared to the control group. 140 participants in each of the intervention and control groups will allow for rigorous testing of these hypotheses.

Eligibility criteria:
inclusion criteria: 1. family caregivers (≥18 years of age) of a person ≥65 years of age who has dementia that lives in a long-term care home 2. english-speaking 3. has a valid email address and access to a computer and internet. exclusion criteria: 1. family caregivers of a person under the age of 65, who does not have dementia, or who does not reside in a long-term care home 2. care partner has died 3. non-english speaking 4. under 18 years of age 5. no internet access or valid email

Keywords: caregivers quality of life dementia web-based intervention