RESUMEN
BACKGROUND: About 11 million Americans are caregivers for the 6.7 million Americans currently living with dementia. They provide over 18 billion hours of unpaid care per year, yet most have no formal dementia education or support. It is extremely difficult for clinicians to keep up with the demand for caregiver education, especially as dementia is neurodegenerative in nature, requiring different information at different stages of the disease process. In this digital age, caregivers often seek dementia information on the internet, but clinicians lack a single, reliable compendium of expert-approved digital resources to provide to dementia caregivers. OBJECTIVE: Our aim was to create a dementia caregiver resources website to serve as a hub for user-friendly, high-quality, and expert-reviewed dementia educational resources that clinicians can easily supply to family caregivers of people with dementia. METHODS: An interdisciplinary website development team (representing dementia experts from occupational therapy, nursing, social work, geriatrics, and neurology) went through 6 iterative steps of website development to ensure resource selection quality and eligibility rigor. Steps included (1) resource collection, (2) creation of eligibility criteria, (3) resource organization by topic, (4) additional content identification, (5) finalize resource selection, and (6) website testing and launch. Website visits were tracked, and a 20-item survey about website usability and utility was sent to Veterans Affairs tele-geriatrics interdisciplinary specialty care groups. RESULTS: Following website development, the dementia caregiver resource website was launched in February 2022. Over the first 9 months, the site averaged 1100 visits per month. The 3 subcategories with the highest number of visits were "general dementia information," "activities of daily living," and "self-care and support." Most (44/45, 98%) respondents agreed or strongly agreed that the website was easy to navigate, and all respondents agreed or strongly agreed that the resources were useful. CONCLUSIONS: The iterative process of creating the dementia caregiver resources website included continuous identification, categorization, and prioritization of resources, followed by clinician feedback on website usability, accessibility, and suggestions for improvement. The website received thousands of visits and positive clinician reviews in its first 9 months. Results demonstrate that an expert-vetted, nationally, and remotely available resource website allows for easy access to dementia education for clinicians to provide for their patients and caregivers. This process of website development can serve as a model for other clinical subspecialty groups seeking to create a comprehensive educational resource for populations who lack easy access to specialty care.
RESUMEN
As the number of veterans with dementia continues to increase, support services for those veterans and their caregivers must also increase. Caregivers of veterans with dementia often report high levels of emotional distress in the form of anxiety, exhaustion, and burden that negatively impacts their health and quality of life. This brief descriptive report highlights a Veterans Health Administration (VHA) project in which a social worker trained in palliative care, teaches stress-reduction to caregivers through individual counseling and virtual groups. In two years, 39 caregivers received individual assessment and counseling focused on stress-reduction. Also, five group webinars were held on the topic of self-care that averaged 17 caregivers per group. 24 caregivers completed a survey and results suggested that stress-reduction and self-care may be viable target areas of intervention for caregivers of veterans with dementia in both individual and group formats. More research is needed in this area to improve our knowledge of how stress may be reduced for caregivers and what type of interventions may be effective to help caregivers reduce stress and improve their self-care.
