Feasibility Study of "My Tools 4 Care-In Care" for Family Caregivers of Residential-Living Older Persons With Dementia
Condition: Dementia; Family
MeSH terms: Dementia
Study type: Interventional

Summary: 
      Following institutionalization of a relative with Alzheimer's disease and related dementia
      (ADRD), family carers continue to provide care and must learn to negotiate with staff, and
      navigate the system, all of which can affect their mental health. A web-based intervention,
      My Tools 4 Care - In Care (MT4C-In Care) will be developed to aid carers through the
      transitions experienced when their frail older relative/friend with ADRD resides a in
      Long-Term Care Facility (LTC).

      A mixed method pre-post-test longitudinal feasibility study will be used to evaluate MT4C-In
      Care for feasibility, acceptability, ease of use, and satisfaction. In addition, the
      investigators expect that MT4C-In Care will improve carers hope, general self-efficacy,
      quality of life, and reduce their feelings of loss and grief. Following baseline data
      collection 40 carers of persons with ADRD will be given access to MT4C-In Care over a 2 month
      period. Measures will be collected at baseline, 1, and 2 months.
    

Detailed description: 
      Background: Those who are admitted to long term care facilities (LTC) often have complex
      health needs making them frail and vulnerable. In addition, most have dementia. Families
      (broadly defined to include friends) continue to provide care after their relative is
      admitted to LTC with the added dimensions of negotiating with staff in the provision of care
      and learning to navigate the system. Family caregivers of persons with dementia experience
      negative physical and psychological well-being as a result of caregiving and their mental
      health may actually worsen after the institutionalization of a family member. The research
      team developed and is currently testing a web-based intervention My tools 4 Care (MT4C) for
      carers of persons with dementia and multiple chronic conditions in the community. MT4C is an
      interactive toolkit intended to help caregivers with their transitions. The research team was
      approached by family caregivers of persons with dementia in LTC to develop a toolkit tailored
      to their needs. The investigators expect that this new toolkit My Tools 4 Care-In Care (MT4C
      - In Care) will help users through significant changes and improve caregiver outcomes.

      Research Questions: 1) What revisions should be made to My Tools 4 Care to tailor it to the
      needs of caregivers of older frail persons with dementia residing in LTC?, 2) What are the
      family caregivers' perceptions of the acceptability, feasibility, ease of use, and
      satisfaction with the toolkit? 3) How do study participants describe their hope, general
      self-efficacy, loss and grief and quality of life over time while participating in the
      study?, and 4) What is the use and cost of health services by the study participants?

      Sample: Participant recruitment will take place from January 2017 to February 2017, using
      several strategies. Participants from another study who consented to be contacted for future
      relevant studies and who had a family member with ADRD residing in LTC will be contacted.
      Other forms of recruitment will include newspaper ads in two cities in Alberta, Canada and
      the Alzheimer Society of Alberta & NWT e-newsletter along with dissemination of study
      pamphlets to family carers attending the organization's events.

      Eligible participants will be contacted by trained Research Assistants who will explain the
      study and obtain verbal informed consent over the telephone to participate in the study.

      Design: The study will involve 3 phases. Phase 1 will consist of focus group interviews with
      6-8 family carers of persons with Alzheimer's disease and related dementias (ADRD) residing
      in LTC. These carers will be asked to review MT4C and answer open-ended questions to provide
      recommendations for change. During phase 2 MT4C-In Care will be developed based on
      information gathered during phase1 and input from a community advisory committee. In
      partnership with information technology web-developers (ATMIST), the new toolkit will be
      available in an online format. Phase 3 will use a mixed method pre-post-test longitudinal
      feasibility study. Forty carers of persons with ADRD will be given access to MT4C-In Care,
      following informed consent and baseline measures. Participants will be instructed to use
      MT4C-In Care at their convenience over a 2-month period. Information on participants use of
      MT4C-In Care will be collected with a checklist at 1 and 2 months. Outcome measures of hope,
      general self-efficacy, loss and grief, and quality of life will be collected at baseline, 1
      month, and 2 months. As well, participants will be asked to complete a questionnaire at
      baseline and 2 months regarding their use of health and social services. Finally, at 2 months
      participants will complete a qualitative interview regarding the ease of use, feasibility,
      acceptability, and satisfaction with the toolkit and recommendations for revisions to the
      toolkit. All data collection will take place over the telephone and will be audio-recorded.
    

Intervention name(s): My Tools 4 Care - In Care
Intervention type(s): Behavioral
Intervention description(s): Self-administered web-based transition toolkit (My tools 4 Care - In Care) contains interactive activities and resources to help carers through transitions.
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: carers; quality of life; dementia; web-based intervention