The population of individuals living with dementia and their caregivers and the need to provide caregiver training will increase in the next several decades. In-person caregiver educational programs are delimited by logistical and resource boundaries that could be overcome with online programs. The purpose of this qualitative descriptive study was to explore the acceptability and ways to improve the content and delivery of an online 7-week psychoeducational pilot program-Tele-Savvy. Thirty-six caregivers who completed the pilot were interviewed about their experience with Tele-Savvy and their suggestions for its improvement. Conventional content analysis allowed for the identification of three themes: barriers and facilitators to establishing rapport with participants and instructors, content enrichment and diversification, and structural refinement. These lessons learned directly from the caregivers provide evidence to guide the refinement of analogous online interventions and highlight the need for their wider availability.
An effective online caregiver psychoeducation program could provide greatly expanded access for caregivers who cannot attend in person for reasons of distance, transportation limitations, and caregiving responsibilities. Further testing in a controlled trial is needed to establish program efficacy.
The results point to the feasibility of achieving significant results in caregivers' well-being and care recipients' BPSD with a fully online program. Tele-Savvy may be particularly efficacious for caregivers whose care recipients exhibit higher BPSD frequency and are in later dementia stages.
Caregivers of individuals with dementia are at risk for chronic stress and social isolation. These exogenous factors may lead to perceived stress and perceived loneliness-psychosocial endogenous (subjective) elements of caregiving experience. Chronic stress and perceived loneliness may disrupt neuroendocrine and neuroimmunological regulation, creating low-grade systemic inflammation, promoting proinflammatory gene expression, and expediting cellular aging (endogenous physiological factors). These disturbances may enhance caregivers' risk for chronic conditions of inflammatory pathogenesis. Thus, caregivers' perceived stress and perceived loneliness may form a symptom cluster that can serve as a marker of risks for physical and mental illness. Due to the overwhelming reliance on family caregivers within the increasing population of individuals with dementia, it is essential that clinicians inquire about caregivers' perceived stress and perceived loneliness, are competent in supporting and educating caregivers, and are knowledgeable about specific resources for caregivers. [Journal of Psychosocial Nursing and Mental Health Services, 56(10), 36-43.].
The Integrated Memory Care Clinic (IMCC) is a patient-centered medical home as defined by the National Committee for Quality Assurance directed by advanced practice registered nurses (APRNs) caring for persons living with dementia (PLWD); physicians provide specialty consultation but do not direct care or care planning. The IMCC incorporates geriatric nursing, social work, and APRNs from neurology, gerontology, palliative care, and geriatric psychiatry. APRNs provide comprehensive, coordinated primary care for dementia, other chronic conditions, and minor acute illnesses. Partnering with PLWD and families and taking a palliative-oriented, dementia-informed medical home approach, the IMCC aims to reduce dementia burden. This study describes the first 12 months of IMCC's operation with 139 enrolled PLWD-caregiver dyads. All patients have a diagnosis of dementia or mild cognitive impairment; most have Alzheimer's disease (53.2%). Patients have an average of 5.8 medical conditions and 6.9 prescriptions; 38.1% have an advanced directive, a medical power of attorney, or a living will. Mean age is 78.6, 63.3% are female, and 30.9% are African American. Mean Montreal Cognitive Assessment score is 12.6. Most require assistance in activities of daily living. Many display neuropsychiatric symptoms. The most prevalent comorbidities are hypertension, dyslipidemia, and depression. The rate of ambulatory-sensitive hospitalizations declined from 6.7% in December 2015 to less than 1% in May 2016. Caregivers were highly satisfied. We observed nonsignificant improvements in neuropsychiatric symptom severity (p=.07), caregiver distress (p=.69), and caregiver competence (p=.18). IMCC is a novel care model for PLWD and their caregivers and may be a more sustainable model than traditional primary care for this growing vulnerable population.
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