Integrated knowledge translation strategies that enhance the lives of persons with dementia and their family caregivers

Purpose: To understand the lived experience of persons with dementia and their family caregivers who receive home care in northern Alberta, Canada, and to reveal how integrated knowledge translation (iKT) strategies influence the uptake of best available dementia care evidence over time. Sample: Three persons living with dementia and thirteen family caregivers were interviewed at the beginning of the study, nine months after implementation of the knowledge broker (KB), and six months after termination of the KB role (total interviews = 41). Method: The PARiHS framework guided our longitudinal case study that included two rural home care centres. A qualitative interpretive descriptive approach was used. A KB was hired for 12 months to facilitate the development of different iKT strategies with staff. Site A developed two strategies: 1) a planning meeting to discuss local needs and suggestions for improving access to dementia care information and community supports; and 2) the development of an information package. Site B focused on working through modules of the U-First program that entailed dementia education and training for the home care providers (HCPs). They then used the U-First wheels with clients during their home visits. Findings: Persons living with dementia spoke of both positive and negative aspects of their dementia journey and how they attempted to manage their lives. Family caregivers struggled to find the best approaches and supports to use to enable their family member with dementia to remain at home for as long as possible. iKT strategies such as a KB, the information resource package developed by the HCPs, use of the U-First modules and wheels, and a support group were examples of effective iKT. Conclusion: iKT strategies and projects increased access to dementia care information and supports. These assisted caregivers to better care for their family member for longer periods at home. Keywords: Persons living with dementia, family caregivers, integrated knowledge translation strategies, rural, and home car

Living with Parkinson's disease—managing identity together

The specific aim of this paper is to discuss how individuals living with Parkinson's disease and their main family supports perceive communications with each other, with a focus on their roles related to care. The paper is based on individual interviews conducted with individuals and their main family support person. The transcripts were analyzed based on grounded theory and “managing identity together” emerged as the core category. This is discussed in terms of independence, a sense of self-sufficiency and an overall sense of personhood. Implications for other populations conclude the paper

Parental health limitations, caregiving and loneliness among women with widowed parents: longitudinal eveidence from France

We investigate how daughters’ feelings of loneliness are impacted when widowed parents develop health limitations, and when daughters take on personal care tasks in response. Using longitudinal data from daughters of widowed parents drawn from the French Family and Intergenerational Relationships Study (ERFI, 1485 observations nested in 557 daughters), we assess (a) whether health limitations of widowed parents are associated with daughters’ feelings of loneliness regardless of whether or not daughters provide personal care and (b) whether there is an effect of care provision on loneliness that cannot be explained by parental health limitations. Fixed effect regression analyses show that widowed parents’ health limitations were associated with raised feelings of loneliness among their daughters. No significant additional effect of providing personal care to a widowed parent was found. Prior research on the impact of health limitations of older parents on the lives of their adult–children has focused mostly on issues related to informal caregiving. Our findings suggest that more attention to the psychosocial impact of parental health limitations—net of actual caregiving—on adult children’s lives is warranted