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

Abstract

Little attention has been given to the perceptions of formal care providers on the nature and quality of home- and community-based dementia care. The purpose of this descriptive interpretive research was to explore formal care providers' perceptions of their experiences with Canadian home- and community-based dementia care. Participants within three personal interviews and six focus groups (n = 41) included nurses, social workers, therapists, home care aides, and Alzheimer Society personnel (front line/management) in rural and urban areas of Saskatchewan (n = 16), Manitoba (n = 20), and Ontario (n = 8). Two overarching thematic categories, Service Availability and Service Acceptability, emerged from the data analysis. Subthemes of availability were identified as: (a) challenges of service availability, including service wait lists, lack of home care provider training, lack of community-based dementia care infrastructure, and sociocultural and geographic barriers to accessing dementia services; and (b) essential facilitators of availability, including service infrastructure, service bridging, and agency partnerships to form coordinated care systems. Subthemes of acceptability were revealed as: (a) essential components of dementia care, including provision of comprehensive personal care and the use of dementia care professional practice knowledge within a home care setting; and (b) service challenges, including inadequate service time for the physical care and socioemotional support of the client and family caregiver, caregiver and formal provider difficulty with navigation of a fragmented care system, lack of system coordination, and financial costs of services. Essential, integrated dementia care could be established by listening to the "voices of formal care providers," thereby decreasing dementia care costs and increasing the quality of life for those with dementia, and their family caregivers.

Dementia Home Care Resources: How Are We Managing?

“…Lack of support for family caregivers [8–11], lack of recognition and poor working conditions of home support workers [12, 13], early hospital-to-home discharge policy [14], and poor system coordination [15] are examples of the challenges faced by persons living with dementia and their familial and formal caregivers. Furthermore, limited resources to implement and sustain a home care infrastructure [16] and a shift of chronic care to community settings without the corresponding transfer of funds [17] compound the difficulties encountered.…”

Determining caregiver needs for respite, results of an Alabama survey

“…more than 200 could not find respite on three or more occasions, and 65 could not find respite on two occasions. Waiting for a needed service may strain existing caregiver capacity [10] , leading to burnout and use of emergency, acute and long-term care facilities [8] .…”

“…To increase recipient satisfaction, family caregiver training should include frank discussion about roles and limitations of the respite provider. In addition, the state Respite Network has implemented Sharing the Care training programs for respite providers, building capacity within communities [8] . Training for providers includes responding to actual needs of caregivers within rules established by the program and requesting additional assistance when needed.…”

“…Consistent with the Stress Process Model of Caregiving, family caregivers prioritize loved ones' immediate needs before their own. Short-term respite care may ameliorate primary (disabilities and limitations) and secondary (role demands, anxiety, depression) stressors among caregivers [6][7][8] .…”

Le travail des baluchonneuses accompagnant une personne atteinte de démence de type Alzheimer : une responsabilité morale ?

“…Peu de données sont disponibles à cet égard. Le manque de temps, de formation, de ressources financières et humaines ainsi que les conflits relationnels avec la famille de l'aidé constituent les principales difficultés nommées par ces intervenants (Damasse et al, 2003 ;Éthier et Corbeil, 2003 ;Mackenzie et Peragine, 2003 ;Armstrong-Stassen et Cameron, 2005 ;Pitrou et al, 2006 ;Jansen et al, 2009 ; Institut national de prévention et d'éducation pour la santé (INPES), 2011). Bien que les baluchonneuses soient des intervenantes, au regard de leur rôle et responsabilité, leur position s'apparente souvent à celle des aidants familiaux.…”