Caregivers' Aspirations, Realities, and Expectations: The CARE Tool

Abstract

Daphne Nahmiash McGill Center for Studies in AgingCaregivers to family and friends are increasingly recognized as essential players in the continued shift of care of dependent populations to the community. Currently, Canadian provincial home care programs have neither a comprehensive policy nor an assessment regarding caregivers' needs. This article describes an assessment tool that takes into account caregivers' reality and conditions and that situates them as essential partners with the formal system and reports on the validation and reliability testing of this tool. Seven sites in Quebec and Nova Scotia involving 40 assessors tested the tool with 168 caregivers. Results suggest that this comprehensive tool enables practitioners to understand caregivers' needs and situations. Focus groups with assessors and interviews with home care administrators revealed that the tool increased worker understanding and awareness of what it means to be a caregiver, ascertained the key caregiver concerns, and identified these needs in rapid succession.Caregivers are increasingly identified by health and social service practitioners as having specific and often unmet needs (Beeson, 2003;Soothill et al.,

Needs, barriers and facilitators experienced by spouses of people with aphasia

“…Caregivers of patients with stroke (some with aphasia) have unmet needs related to information about services and accessing services during and after rehabilitation [48][49][50]. Long-term needs may be exacerbated when needs are not met earlier on.…”

Observing Women Caregivers’ Everyday Experiences: New Ways of Understanding and Intervening

“…An observation intervention can be used in conjunction with established caregiver assessment tools that address numerous areas of the caregiver's functioning such as coping capacities, support, and the impacts on the caregiver's physical and emotional well-being (Keefe et al, 2008). Preceding or following the assessment, practitioners can offer to shadow the caregiver in her home setting, noting how the caregiver moves her body (potential pain, fatigue, difficulty), her facial expressions (grimaces, eye rolls, smiles, stiffness), and how she relates to the care receiver (types of touch, changes in vocal intonation, humor).…”

“…Those caregivers who do receive services often find that their needs are conflated with those of the care receiver (Guberman, Lavoie, Pepin, Lauzon, & Montejo, 2006). Supports for the care receiver -bathing assistance, in-home services -may be considered as supports for the caregiver, and files are infrequently opened for the caregiver herself (Keefe, Guberman, Fancey, Barylak, & Nahmiash, 2008). Women who do access specific caregiver services are commonly offered shortterm interventions such as time-limited assessments, psycho-educational programs, support groups, short-term counseling, or respite (Keefe et al, 2008;Silverman, 2008).…”

“…Supports for the care receiver -bathing assistance, in-home services -may be considered as supports for the caregiver, and files are infrequently opened for the caregiver herself (Keefe, Guberman, Fancey, Barylak, & Nahmiash, 2008). Women who do access specific caregiver services are commonly offered shortterm interventions such as time-limited assessments, psycho-educational programs, support groups, short-term counseling, or respite (Keefe et al, 2008;Silverman, 2008). While such services have been shown to improve caregivers' emotional well-being (Gallagher-Thompson & Coon, 2007;Lopez, Crespo, & Zarit, 2007;Sorensen, Pinquart, & Duberstein, 2002), they tend to focus on a specific aspect of a caregiver's situation, rather than her overall functioning, and are grounded in conversation-based interventions rather than nonverbal cues.…”

Evaluation of an Assessment Battery for Estimating Dementia Caregiver Needs for Health and Social Care Services

“…3 Two caregiver assessment tools, that provide a comprehensive overview of caregiver burden, stress, and difficulties, provide important information for determining health care service needs; however, both are lengthy and require considerable amount of clinical professionals' time to be trained, administer, and interpret the responses. 4,5 Several organizations provide guidelines for identifying areas of risk for caregivers. 6 Some of the reviewed caregiver assessment tools are not based on a coherent conceptual framework, while others draw on a stress coping model to assess caregivers' needs.…”