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"How Long Can I Carry On?" The Need for Palliative Care in Parkinson's Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

Background: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study.

Thu, 12/10/2020 - 17:29

Family Relationships and Alzheimer's Disease: A Systematic Review

Background: Family caregivers of people with Alzheimer's disease are the most important support in concrete personal and economic terms. Family dynamics play a fundamental role in the provision of informal caregiving benefits. Objective: This review aims to identify factors related to the family caregiving of relatives with Alzheimer's disease, taking specifically into account the construct of coping and expressed emotion.

Wed, 12/02/2020 - 15:26

Potential for Digital Monitoring to Enhance Wellbeing at Home for People with Mild Dementia and Their Family Carers

Digital technologies have the potential to assist people with dementia to monitor day to day activities and mitigate the risks of living independently. This purposive pilot study surveyed participants for frailty, wellbeing, and perceived carer burden using the 3Rings(TM) digital plug. 30 paired participants used the digital device for four months. People with dementia reported a decline in wellbeing and increased frailty. Family carers reported a decline in wellbeing but 18 reported a reduction in burden.

Mon, 07/27/2020 - 11:45

Quality of Care for Huntington's Disease in the United States: Findings from a National Survey of Patients and Caregivers

Background: Little is known about the quality of care for people living with Huntington's disease (HD) in the United States. Objective: To document the current HD care experience and identify gaps in care provision in the United States. Methods: Web-based surveys for persons self-identifying as being affected by HD (PAHD, which included individuals with, or at risk for HD) or as caregivers/family members, were developed and refined with targeted input from focus groups comprised of caregivers and family members.

Mon, 02/03/2020 - 10:06

Developing a random forest classifier for predicting the depression and managing the health of caregivers supporting patients with Alzheimer's Disease

Background: Supporting the caregivers of dementia patients is an important issue in the field of public health. Objective: This study established a model for predicting the depression of dementia caregivers while considering the sociodemographic and health science characteristics of South Koreans. The results of this study provided baseline data for developing and applying a caregiver management App.

Wed, 01/22/2020 - 16:08

Extending a Knowledge-Based System with Learning Capacity

Informal caregivers often complain about missing knowledge. A knowledge-based personalized educational system is developed, which provides caregiving relatives with the information needed. Yet, evaluation against domain experts indicated, that parts of the knowledge-base are incorrect. To overcome these problems the system can be extended by a learning capacity and then be trained further utilizing feedback from real informal caregivers. To extend the existing system an artificial neural network was trained to represent a large part of the knowledge-based approach.

Wed, 10/23/2019 - 16:34

Pilot Test of a Computer-Based System to Help Family Caregivers of Dementia Patients

Background: Family members absorb much of the care of dementia patients. The burden of care substantially impacts caregivers' health, further straining our healthcare system. By 2050, the incidence of Alzheimer's disease will more than double, increasing the numbers of family caregivers proportionally.

Tue, 09/10/2019 - 11:41

Trajectories of Multidimensional Caregiver Burden in Chinese Informal Caregivers for Dementia: Evidence from Exploratory and Confirmatory Factor Analysis of the Zarit Burden Interview

Background: Despite its popularity, the latent structure of 22-item Zarit Burden Interview (ZBI) remains unclear. There has been no study exploring how caregiver multidimensional burden changed. Objective: The aim of the work was to validate the latent structure of ZBI and to investigate how multidimensional burden evolves with increasing global burden. Methods: We studied 1,132 dyads of dementia patients and their informal caregivers. The caregivers completed the ZBI and a questionnaire regarding caregiving.

Wed, 03/20/2019 - 15:50

The Effectiveness of Psychosocial and Behavioral Interventions for Informal Dementia Caregivers: Meta-Analyses and Meta-Regressions

Background: Many psychosocial and behavioral interventions have been developed for informal dementia caregivers.

Fri, 02/01/2019 - 19:40

Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study

Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care.; Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs.; Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained.

Fri, 02/01/2019 - 11:18