feasibility study of "my tools 4 care-in care" for family caregivers of residential-living older persons with dementia

Conditions: Dementia; Family

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.

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.

Eligibility criteria:
inclusion criteria: 1. family/friend carer of a person with adrd, 65 years of age or older, residing in a 24-hour care facility 2. 18 years of age or older 3. english speaking 4. access to the internet and an email account. exclusion criteria: 1. family/friend of a person under the age of 65, who does not have adrd, or who is not residing in a 24-hour care facility; 2. no internet access or email account.

Keywords: carers quality of life dementia web-based intervention