Background: Family caregivers who have been chosen by their family for the caregiving role may be under a unique type of stress due to family obligation beliefs and/or lack of choice.
Objective. To compare characteristics between Chosen Child caregivers and non-Chosen Child caregivers.
Methods: We used survey data collected in December 2016 as part of the outcome evaluation of the National Family Caregiver Support Program. The sample of caregivers for this analysis consisted of 652 child caregivers: 168 who self-identified as the person chosen by their family as a child to provide care and 214 who replied they were definitely not chosen child (DNCC). We looked for significant differences (p<0.01) in 36 characteristics between these two groups.
Results: The mean age of caregivers was 59 and 81% were daughters. Chosen child caregivers were less likely to be employed (39% vs 52%) and less likely to receive respite care from family or friends (40% vs 54%). On a scale of 5=always to 1=never, chosen child caregivers reported more frequent emotional distress than NDCC after adjusting for caregiver employment status, self-reported physical health, self-reported caregiver burden, and caregiving daily intensity (2.6 vs 2.4).
Conclusion: Family and friends should be aware that the Chosen Child caregiver may be hesitant to ask for respite care or other types of support. Individuals performing caregiver assessments should ask caregivers about their motivation for caregiving to identify those who may be at risk for emotional distress due to familism and/or lack of choice.

background: In 2010 the caregiver support ratio was more than seven potential caregivers for every one person over 80 years old; a ratio that will decline sharply to 4:1 by 2030. Shrinking family size and rising demand may place additional stress on caregivers and those that they care for (which we refer to as the “caregiving unit”).

methods: Our community-academic partnership, which includes a health system, an older adult support services organization, a governmental department on aging, and researchers, seeks to implement a scalable system to improve collaboration among venues that interface with caregiving units. A critical step in creating the is improving our understanding of the processes in place at our three partner locations. We analyzed the processes and interactions within the current system with a focus on: 1) mechanics of the system and the interactions as experienced by the caregiving unit, 2) effective/ineffective processes, 3) uniformity of service delivery, and 4) identification of personnel involved in the system. Data sources included document reviews, site observations, and interviews with staff.

results: Emergent themes included: 1) the use of “caregiver” as a label, 2) engaging caregiving units in a preventative manner, 3) importance of creating formal and direct referral mechanisms across systems, and 4) onus on caregiving unit to identify resources, and 5) managing the volunteer workforce.

implications: Understanding workflows within organizations will allow for innovative transformation to create a coordinated, consistent, collaborative system that provides early identification in the senior’s continuum of care and gives timely, relevant, appropriate support.

The New York State Department of Health’s (NYSDOH) Alzheimer’s Disease Caregiver Support Initiative (ADCSI) represents the nation’s largest state investment in support services for individuals living with Alzheimer’s disease and other dementias (AD/D) and their caregivers. It aims to expand and enhance access to evidence-based support services, improve the health and well-being of caregivers and people with dementia, reduce avoidable emergency department visits and hospitalizations, continue community residence, and reduce institutionalization of people with dementia.

The initiative involves a variety of evidence-based services, such as care consultations, support groups, education, respite, diagnostics and care management, implemented by contractors across the state. In its first three years, this initiative has served 99,554 people and expanded the reach of available services throughout New York State.

To evaluate the initiative we conducted a survey in year three of the five-year initiative. The survey was emailed to all caregivers who had previously received services who had provided an email address; 1866 caregivers responded. Outcomes of interest include caregiver burden, perceived benefits, healthcare utilization, delay in nursing home placement, and positive outcomes of caregiving.

Results indicate that respondents perceive reduced caregiver burden and multiple benefits from participating in services. In addition, service use is significantly associated with greater perceived benefits, reduction in caregiver burden, and self-reported delayed nursing home placement. These preliminary results will be presented in detail, and suggest that this statewide initiative is effective in improving outcomes for caregivers.

BACKGROUND: Hispanics are at higher risk of developing Alzheimer’s Disease (AD), including autosomal dominant inherited AD. Caregivers, many whom are at-risk of AD themselves, face unique challenges and stressors. METHODS: We conducted five focus groups with Hispanic caregivers of family members with AD in Los Angeles. The primary objective was to explore how to better support them in their caregiver roles. RESULTS: Of 20 participants, more than half were monolingual Spanish speakers; 40% were caregivers of spouses while 60% cared for parents and/or other family members. While most were aware of AD history in their families, they lacked accurate information about the etiology and trajectory of AD, and their children or their own risk of AD. For many reasons, communication with healthcare providers was limited and largely ineffective. Lack of understanding about AD often delayed healthcare seeking until crises occurred. Participants felt a responsibility to care for loved ones at home but felt isolated, hopeless, and alone. High levels of financial instability and mental health issues were reported. Key recommendations included caregiver support groups in Spanish to learn from others, improved provider communication with families, and dual-language educational campaigns and informational videos. Suggested topic were basic skills in caring for AD patients (such as bathing and feeding), what to expect as the disease progresses, and resilience and stress management for caregivers. DISCUSSION: Improving access to dual-language information and support could encourage early help-seeking, and improve caregivers’ quality of life as they deal with long-term caregiving responsibilities.