Unmet Needs of Caregivers of Individuals Referred to a Dementia Care Program

Abstract

Objectives To characterize caregiver strain, depressive symptoms, and self‐efficacy for managing dementia‐related problems and the relationship between these and referring provider type. Design Cross‐sectional observational cohort. Setting Urban academic medical center. Participants Caregivers of community‐dwelling adults with dementia referred to a dementia care management program. Measurements Caregivers were surveyed and completed the Patient Health Questionnaire (PHQ‐9) about themselves; the Modified Caregiver Strain Index; the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress; and a nine‐item caregiver self‐efficacy scale developed for the study. Results Of 307 patient–caregiver dyads surveyed over a 1‐year period, 32% of caregivers reported confidence in managing dementia‐related problems, 19% knew how to access community services to help provide care, and 28% agreed that the individual's provider helped them work through dementia care problems. Thirty‐eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of individuals referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self‐efficacy did not differ. Low caregiver self‐efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for an individual with more‐severe behavioral symptoms. Conclusion Most caregivers perceived inadequate support from the individual's provider in managing dementia‐related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of individuals with dementia and their caregivers.

A National Profile of Family and Unpaid Caregivers Who Assist Older Adults With Health Care Activities

“…The significant consequences associated with caregiving reported herein and in other studies 15,28,30,31 underscore the need to identify and promulgate strategies that address the needs of caregivers within systems of care delivery. Effective psychosocial and coping interventions have been developed to support family caregivers, 32–34 but they are largely disconnected from routine health care delivery.…”

“…26,27 Our study extends existing evidence that has established the special challenges encountered by caregivers of persons with dementia. 15,28,29 We found that almost half of the caregivers providing substantial help with health care activities assist an older adult with dementia. For the first time to date, we also quantify the emotional, financial, physical, participation, and work-related effects of caregiving experienced by family caregivers who interact with health care professionals and manage health care activities on behalf of or alongside older adults.…”

“…The lack of systematic identification and support of caregivers in mainstream care means that their information and support needs are not well understood and often remain unmet. 15 Available evidence (largely setting specific and anecdotal) indicates that caregivers may be poorly informed about patients' health or treatment plans 10,35,36 and may experience challenges in accessing such information. 37–39 …”

“…3,4 Older adults' family caregivers not only provide most assistance with everyday activities 3,5 but also help with a range of health care activities, such as physician visits, 6,7 transitions between settings of care, 8,9 medical decisions, 10,11 and medical tasks, such as injections, medication management, and wound care. 12 Because family caregivers are not systematically identified or routinely assessed in health care delivery, 13–15 little is known about the degree to which they assist with health care activities or about the nature of caregiving-related effects they may experience. A better understanding of the “workforce” of family caregivers who assist with health care activities is particularly timely and important given growing attention to the contribution of nonmedical factors to health 16,17 and given reform efforts that are shifting the focus of the health care enterprise toward accountability and value.…”

Machine learning and microsimulation techniques on the prognosis of dementia: A systematic literature review

“…There are also consequences for the caregivers, especially for the family of the affected persons, who report low confidence in managing the condition, high levels of strain and depressive symptoms [5]. …”