Best Practices for Communicating a Diagnosis of Dementia: Results of a Multi-Stakeholder Modified Delphi Consensus Process.

Background and Objectives: Many individuals with dementia and their families report not receiving a dementia diagnosis. Previously published standards for delivering a dementia diagnosis are now more than 10 years old and were developed without patient and caregiver input. The objective of this study was to identify best practices for delivering a diagnosis of dementia using existing literature, involvement of diverse stakeholders, and consensus building through a formal modified Delphi approach. Methods: We convened a multi-stakeholder working group including a patient, caregivers, Alzheimer's Association staff, and clinicians from diverse backgrounds. The panel used the American Academy of Neurology process for recommendation development, consisting of a half-day workshop and 3 rounds of anonymous modified Delphi voting to achieve consensus. Results: The working group convened from May 2022 through January 2023. The group chose to focus statements on a limited number of best practices that can be applied across clinic types. Seven best practice statements achieved consensus after a maximum of 3 rounds of voting. These included the following: (1) Clinicians must show compassion and empathy when delivering a diagnosis of dementia (level A). During dementia diagnosis disclosure, clinicians should (2) ask regarding diagnosis preferences, (3) instill realistic hope, (4) provide practical strategies, (5) provide education and connections to high-quality resources, (6) connect caregivers to support resources, and (7) provide written summaries of the diagnoses, plan, and relevant resources (each level B). Discussion: Clinicians need to customize discussion of a dementia diagnosis for individual patients and their caregivers. These 7 best practices provide a diagnosis communication framework that can be implemented across varied clinical settings. Additional strategies, such as using optimal general communication approaches, are also important for dementia diagnosis discussions. Thoughtful application of these best practices is particularly important when caring for individuals from underrepresented communities. Further improving communication regarding dementia diagnoses will require health system changes (e.g., for sufficient time), improved access to specialty dementia care, and clinician training for delivering difficult diagnoses. More research is needed to identify culturally sensitive approaches to discussing dementia diagnoses.

Project VITAL at Home: Impact of Technology on Loneliness and Well-Being of Family Caregivers of People with Dementia.

OBJECTIVES: Project VITAL At Home aimed to combat social isolation and loneliness in family caregivers of people with dementia through purposeful engagement and connection. This project examined the effects of technology on caregiver loneliness and well-being, as well as their technology experiences, during the COVID-19 pandemic. METHODS: Family caregivers were provided iN2L tablets and access to Alzheimer's Association supportive programs. Caregivers (n = 124) completed online surveys at pre and post evaluation points (average 7 months apart) to assess loneliness, subjective well-being (affect), supportive program usage, and tablet experiences. RESULTS: Family caregivers had positive perceptions of the tablets for both themselves and their family members. Tablets had positive effects on caregiver well-being, including giving them an additional caregiver tool, alleviating stress, increasing satisfaction with quiet time, and improving access to supportive programs. Caregiver positive affect decreased, but no changes were observed for negative affect or loneliness. CONCLUSIONS: Family caregivers found value in the tablets and showed improvements in some aspects of well-being. Randomized trials are needed to more fully assess the benefits of the intervention. CLINICAL IMPLICATIONS: Pairing tablets with caregiving supports is a promising intervention to improve caregivers' access to vital resources and services and to improve their well-being.

Alzheimer's Association Project VITAL: A Florida Statewide Initiative Using Technology to Impact Social Isolation and Well-Being.

Lack of social engagement and the resulting social isolation can have negative impacts on health and well-being, especially in senior care communities and for those living with dementia. Project VITAL leverages technology and community resources to create a network for connection, engagement, education, and support of individuals with dementia and their caregivers, and explores the impact of these interventions in reducing feelings of social isolation and increasing mood among residents during the COVID-19 pandemic. Through two phases, 600 personalized Wi-Fi-enabled iN2L tablets were distributed to 300 senior care communities (55% assisted living communities, 37% skilled nursing communities, 6% memory care communities, and 2% adult family-care homes) to connect and engage residents and their families. Different phases also included Project ECHO, a video-based learning platform, Alzheimer's Association virtual and online education and support for family caregivers, evidence-based online professional dementia care staff training and certification, and Virtual Forums designed to explore ways to build sustainable, scalable models to ensure access to support and decrease social isolation in the future. Tablet usage was collected over an 11-month period and an interim survey was designed to assess the effectiveness of the tablets, in preventing social isolation and increasing mood among residents during the COVID-19 pandemic. A total of 105 care community staff (whose community used the tablets) completed the survey and overall, these staff showed a high level of agreement to statements indicating that residents struggled with loneliness and mood, and that the tablet was useful in improving loneliness and mood in residents and allowing them to stay in touch with family and friends. Additional positive results were seen through a variety of other responses around the tablets and Project ECHO. Overall, the tablets were shown to be an effective way to engage residents and connect them with friends and family, as well as being a useful tool for staff members. A third phase is currently underway in the homes of people with dementia and their family caregivers, which includes tablets and direct access to Alzheimer's Association virtual and online education and support programs.

Caregiver Response to an Online Dementia and Caregiver Wellness Education Platform.

BACKGROUND: Web-based educational interventions are emerging as a potential solution to improve caregiver dementia knowledge and overall well-being. OBJECTIVE: To assess the feasibility of delivering a web-based intervention for dementia caregivers by examining: 1) engagement with the online platform, 2) skill implementation, and 3) changes on outcome metrics over the 30-day study period. METHODS: Enrolled participants were onboarded by a trained research coordinator and provided 24/7 access to the platform over 30 days. At study onset and completion, caregivers completed assessments of care recipient dementia severity and neuropsychiatric symptoms along with instruments which measured dementia knowledge, caregiver burden, and carer experience. RESULTS: Of 84 referrals, 60 caregivers met study inclusion criteria and 55 completed pre and post study measures. Caregivers completed an average of 8 hours of learning over the 30-day web-based intervention, with 84.4%of participants reporting using at least one skill they learned from the online platform. Eighty-nine percent of participants reported high satisfaction with the web-based educational intervention. There were small effect sizes for decreases in NPIQ neuropsychiatric symptom severity and caregiver distress scores from pre- to post-intervention. Small effect sizes were observed for changes in caregiver burden from pre- to post-intervention among caregivers who perceived their care recipient as having high global deterioration. CONCLUSION: Findings show online educational programs are feasible for informal family caregivers of dementia and have perceived value. Future studies should address caregiver response to online education in less severe versus more severe care recipients, and explore the value of caregiver online platforms in diverse caregiver samples.