We aimed to develop a telehealth peer support program for isolated dementia caregivers. This paper reports the co-design process by telehealth and the impact and experiences of participants. The Double Diamond model guided the co-design process, which has four phases, with participants reflecting on their caregiving experiences. Group meetings were recorded, notes compiled with inductive thematic analysis undertaken for phases one to three. Each phase findings were presented to the group for verification and refinement. Semi-structured interviews with participants were completed at the end of the project. Six dementia caregivers were recruited from dispersed locations with diverse characteristics. The process identified eight key topics to be included in a program to be delivered by telehealth. Participants reported the technology did not detract from the co-design and at times aided it, despite some technical problems. All reported high levels of group connectedness, feeling supported and transfer of knowledge and skills. One participant would have liked more understanding of the process. The group continued to meet without professional input for 2.5 years following the completion of the project. Telehealth can be a mechanism to support diverse populations in participating in co-design projects.
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http://dx.doi.org/10.1177/1357633X211048980 | DOI Listing |
BMC Palliat Care
January 2025
Department of Post-Acute and Continuing Care, SingHealth Community Hospitals, 10 Hospital Boulevard Singapore, Singapore, 168582, Singapore.
Background: Singapore has an ageing population. End-of-life care and advance care planning are becoming increasingly important. To assess advance care planning engagement, valid tools are required.
View Article and Find Full Text PDFCommun Med (Lond)
January 2025
Department of Brain Sciences, Imperial College London, London, UK.
Background: People living with dementia often experience changes in independence and daily living, affecting their well-being and quality of life. Behavioural changes correlate with cognitive decline, functional impairment, caregiver distress, and care availability.
Methods: We use data from a 3-year prospective observational study of 141 people with dementia at home, using the Bristol Activities of Daily Living Scale, Neuropsychiatric Inventory and cognitive assessments, alongside self-reported and healthcare-related data.
BMC Nurs
January 2025
Xiangya Nursing School, Central South University, Changsha, Hunan Province, China.
Background: China has the largest percentage of people with dementia (PwD) around the world. And most of them are cared for by their family members. The purpose of this study was to identify the quality of life (QoL) of family caregivers of PwD in rural China and to investigate the mediating role of social support between caregiver burden and QoL under the guidance of a stress process model.
View Article and Find Full Text PDFJ Neurosurg
January 2025
4Department of Neurosurgery, Korea University Anam Hospital, Seoul, Republic of Korea.
Objective: Focused ultrasound (FUS)-mediated blood-brain barrier (BBB) opening is safe and potentially beneficial in patients with Alzheimer's disease (AD) for the removal of amyloid-beta (Aβ) plaques. However, the optimal BBB opening intervals and number of treatment sessions for clinical improvement remain undefined. Therefore, the aim of this study was to evaluate the safety and benefits of repeated and more extensive BBB opening alone.
View Article and Find Full Text PDFWest J Nurs Res
January 2025
Department of Biostatistics and Informatics, Colorado School of Public Health, University of Colorado, Anschutz Medical Campus, Aurora, CO, USA.
Background: Caregiver stress is linked to key mechanisms for developing cardiovascular disease and the burden differs by caregiving relationship (eg, spouse). Furthermore, cardiovascular disease risk in family caregivers (FCGs) has been shown to differ by race and ethnicity. However, little is known about whether the association between caregiving relationship and FCGs' cardiovascular health differs by race and ethnicity.
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