Availability and Acceptability of Canadian Home and Community-Based Services: Perspectives of Family Caregivers of Persons with Dementia

Abstract

Thirty-five percent of Canadians over the age of 85 have dementia, and up to 90% of their home care is provided by family and friends. The purpose of this study was to explore the use and satisfaction with home and community-based services for persons with dementia from the perspectives of family caregivers. The study was conducted using an interpretive, descriptive, qualitative approach. Six focus groups (N = 36) and three personal interviews were conducted with rural and urban caregivers in Ontario, Manitoba, and Saskatchewan, Canada. Using Lubrosky's (1994) thematic analysis, the overarching themes identified were availability and acceptability of services. The findings suggest a need for an integrated continuing care model that includes the person living with dementia and their family caregivers as partners in care, addresses all of the determinants of health, and embraces sensitivity, diversity, flexibility, and supportive services to enhance the availability and acceptability of Canadian home and community-based services.

Formal Care Providers' Perceptions of Home- and Community-Based Services: Informing Dementia Care Quality

“…Eighty percent of Canadians support the enhancement of home-and community-based care to broaden the overall health care system (Health Council of Canada, 2008). Research support does exist for team-based services (Health Council of Canada, 2008;Jansen, 2008) within an integrated community care system (Anderson & Parent, 2000;Forbes et al, 2008b). This study may inform planning and evaluation strategies to reorient the home care system; enhance nursing and interdisciplinary team care; and improve the quality, availability, and acceptability of home-and community-based dementia care.…”

“…The Council report revealed that one-quarter of Canadians cared for a family member or a close friend with a serious health issue in the last year, with 22% of these people absent from their place of employment for one or more months, and 41% using personal financial resources during the time of caregiving. Essential home care services are becoming less available through the publicly funded home care system, and greater proportions of those with dementia are turning to the private sector for assistance (Forbes et al, 2008b;Forbes et al, 2006). Those who do not have the financial resources to pay for private services may not receive any in-home assistance.…”

“…This qualitative research was one component of a mixed-methods approach used to describe the use of health care services by Canadians with dementia, and the role of home care and other agencies in meeting the needs of those with dementia and their unpaid caregivers (Forbes et al, 2008a;Forbes et al, 2008b). A descriptive interpretive qualitative design (Thorne, Reimer Kirkham, & MacDonald-Emes, 1997;Thorne, Reimer Kirkham, & O'FlynnMagee, 2004) was used to collect data from home-and community-based care providers through personal interviews and focus groups.…”

“…Extensive research has been conducted on family caregivers' expectations of formal providers who provide in-home dementia care (Forbes, Morgan, & Janzen, 2006;Forbes et al, 2008b;Heinrich, Neufeld, & Harrison, 2003). Caregivers expect to receive individualized, consistent decision-making support to navigate the complex dementia care system (Neufeld, Harrison, Hughes, & Stewart, 2007;Forbes & Neufeld, 2008).…”

“…Caregivers expect to receive individualized, consistent decision-making support to navigate the complex dementia care system (Neufeld, Harrison, Hughes, & Stewart, 2007;Forbes & Neufeld, 2008). In addition, they wish to be included as a partner with home care providers as family caregiver needs must be a primary consideration in the care process, and they have experiential knowledge to contribute to the assessment process and provide most of the care (Forbes et al, 2003;Forbes et al, 2008b). Factors that may influence in-home caregiver expectations include: (a) the transition of women who have been traditional family caregivers into the paid workforce; (b) the diverse nature of family structures and relationships (Fast & Keating, 2000); and (c) escalating levels of client dependency on the caregiver due to the progression of dementia, and people living longer than in the past (Rajnovich et al, 2005).…”