The concept of pre-death grief has salience for researchers and caregivers. This analysis lays the foundation for use of the concept in nursing research and practice across cultural, environmental and illness domains.
Background: Technology has multiple potential applications to dementia from diagnosis and assessment to care delivery and supporting ageing in place. Objectives: To summarise key areas of technology development in dementia and identify future directions and implications. Method: Members of the US Alzheimer’s Association Technology Professional Interest Area involved in delivering the annual pre-conference summarised existing knowledge on current and future technology developments in dementia. Results: The main domains of technology development are as follows: (i) diagnosis, assessment and monitoring, (ii) maintenance of functioning, (iii) leisure and activity, (iv) caregiving and management. Conclusions: The pace of technology development requires urgent policy, funding and practice change, away from a narrow medical approach, to a holistic model that facilitates future risk reduction and prevention strategies, enables earlier detection and supports implementation at scale for a meaningful and fulfilling life with dementia.
Findings indicate that these measures can be used to assess persons with AD, as well as their caregivers, across the telemedicine platform, directly to their homes. Use of this technology can expand access to care to the millions across the United States with AD and their caregivers.
Background and Objectives Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving. Research Design and Methods A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in seven weekly synchronous sessions accompanied by 36 brief asynchronous video lessons. We enrolled 23 cohorts of 15 eligible caregivers (N=261), randomized 2:2:1 to active, attention control, and usual care arms. We assessed caregiver psychological well-being and caregiving mastery at baseline and 3, 6, 9, and 12 months. Multilevel linear models assessed outcomes over the three time points examined. The trial was slightly truncated, with DSMB approval, because of the apparent confounding psychological effects of Coronavirus Disease 2019 (COVID-19) restrictions. Results Study findings indicate statistically and clinically significant benefits to Tele-Savvy arm caregivers (with moderate to large effect sizes) in the areas of depression, perceived stress, reaction to care-recipients’ behaviors and enhancement of caregiver mastery. Expected benefits for caregiver burden and anxiety were not found. Discussion and Implications Findings attest to program efficacy and the viability of employing distance means to improve family caregivers’ emotional well-being and sense of mastery in the caregiving role over a 6-month period. Next steps entail finding alternate ways to deliver the program to those with connectivity and/or time constraint problems.
Objectives:To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.Design:Cross-sectional survey.Setting:13 geographically dispersed Alzheimer’s Disease Centers across the United States.Participants:431 racially diverse caregivers of persons with dementia.Measurements:Survey on “Care Planning for Individuals with Dementia.”Results:The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.Conclusions:Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
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