Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are confronted with a variety of challenges in providing assistance to their loved ones, such as dealing with persistent, repetitive questions, managing episodes of agitation and aggressive responding, as well as monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, a significant proportion of dementia caregivers in the United States continue to receive little or no formal instruction in responding effectively to these anxiety-provoking situations. This paper describes the development and implementation of Alzheimer's Caregiver Support Online (also known as AlzOnline), an Internet- and telephone-based education and support network for caregivers of individuals with progressive dementia. An outcome analysis of a Robert Wood Johnson Foundation-funded strategic marketing initiative to promote the use of AlzOnline is reviewed, followed by a presentation of the findings of an initial program evaluation. Finally, future directions for online caregiver evaluation research are proposed.
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http://dx.doi.org/10.1089/tmj.2004.10.223 | DOI Listing |
Dementia (London)
January 2025
School of Exercise and Rehabilitation Sciences, Faculty of Health, University of Canberra, Bruce, ACT, Australia.
There is increased recognition of the need to improve post-diagnostic pathways for people with dementia and their care partners living in the community to access rehabilitation services to support independence and wellbeing. However, there is minimal evidence on implementing rehabilitation services for this population. The study aimed to present the expectations and experiences of allied health staff involved in piloting the Sustainable Personalised Interventions for Cognition, Care and Engagement (SPICE) program based at an outpatient clinic of a public rehabilitation hospital.
View Article and Find Full Text PDFCogn Neuropsychiatry
January 2025
Behavioral Neurology and Movement Disorders Unit, Department of Neurology, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Türkiye.
Introduction: Apathy is one of the common neuropsychiatric symptoms in people with dementia (PwD). The aim of this study is to determine the impact of apathy on the patient's quality of life (QoL) and caregiver's burden among PwD.
Methods: Sample of this cross-sectional descriptive study consisted of 88 PwD attending the outpatient clinic of a university hospital in Istanbul and their family caregivers.
Health Aff Sch
January 2025
Department of Family Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA 90033, United States.
The rapid rise in numbers of people living with Alzheimer's disease and related disorders (ADRD) poses major challenges to health systems and policy. Although primary care clinicians provide ongoing medical care for 80% of affected individuals, they face persistent barriers to providing high-quality dementia care. We conducted qualitative interviews with family physicians ( = 20) to understand what core outcomes they consider most important and what care processes and systems and policy strategies they propose to achieve them.
View Article and Find Full Text PDFBMC Prim Care
January 2025
Department of Family Medicine, Faculty of Medicine, McGill University, 5858 Ch. de la Côte des Neiges, Montreal, QC, H3S 1Z1, Canada.
Background: Virtual care (VC) for dementia in primary care settings is an important aspect of healthcare delivery in Canada. However, the evidence informing optimal and sustainable provision of VC for persons living with dementia (PLWD) and their care partners is scarce. The objectives of this study were to (1) describe the frequency of VC use, (2) identify characteristics of PLWD, care partners, and family physicians (FPs) that are associated with the use of VC, and (3) explore FPs' perceptions of barriers and facilitators to provide VC for PLWD and their care partners.
View Article and Find Full Text PDFJ Gen Intern Med
January 2025
Department of Neurology, University of Michigan Medical School, Ann Arbor, MI, USA.
Background: Previous reports suggest patient and caregiver lack of awareness of dementia. Little is known about how this varies by ethnicity and how informal (family) caregiver burden is associated with knowing a dementia diagnosis.
Objective: To investigate whether participants with probable dementia were aware of a diagnosis provided by a physician and how this differed among Mexican American and non-Hispanic White participants; whether having a primary care physician was associated with dementia diagnosis unawareness; and the association of dementia diagnosis unawareness with caregiver burden.
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