Currently there is a crisis in the long-term care workforce, as many workers experience poor pay, a lack of training, burnout, low quality working conditions, and physical strain, which is leading to a workforce shortage. To address this, the Alzheimer's Association Dementia Care Provider Roundtable (AADCPR) convened a panel of direct care workers to discuss and provide direction on their view of the current state of the workforce. From this panel, five touchpoints for hiring and retaining direct care workers were highlighted: high quality jobs; recruitment and reputation management; onboarding; retention; and training and career advancement.
View Article and Find Full Text PDFObjectives: Nearly 75% of persons living with dementia (PLWD) in the US live at home and are cared for by informal family members who have limited access to supportive and accessible services, indicating an increased need for these types of services (Alzheimer's Association, 2023). The Alzheimer's Association call centers offer free telephone care consultations, but it currently remains unclear which types of brief telephone support benefit caregivers. This study compares outcomes of participants who received traditional care consultation calls via the Alzheimer's Association National Helpline with care consultation calls from Helpline staff trained in Solution-Focused Brief Strategies (SFBS), a client-centered evidence- and resource-based approach.
View Article and Find Full Text PDFBackground: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP.
Methods: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia.
Introduction: As the complexity of medical treatments and patient care systems have increased, the concept of patient navigation is growing in both popularity and breadth of application. Patient navigators are trained personnel whose role is not to provide clinical care, but to partner with patients to help them identify their needs and goals and then overcome modifiable patient-, provider-, and systems-level barriers. Due to its high incidence, duration, and medical-social complexity, dementia is an ideal candidate for a patient-centric health care delivery model such as care navigation.
View Article and Find Full Text PDFThere is an emerging call for new strengths-based measures to guide research, care, and support for persons living with Alzheimer's disease and related dementias. Person-centered interventions have demonstrated a positive impact in global quality of life, but many promising approaches lack strengths-based measures with sufficient sensitivity to document relevant outcomes. Human centered design is an innovative method for person-centered instrument development.
View Article and Find Full Text PDFWith the emergence of new clinical trial data on disease-modifying therapies in several. Alzheimer's disease (AD) studies, the Alzheimer's Association convened individuals living with AD to gain their perspective on meaningfulness and new treatments. A total of 30 Alzheimer's Association National Early Stage Advisory Group members participated in a focus group or an online survey to gain insights on what is wanted from a first-in-class treatment that could stop the progression of their disease at the earliest stage.
View Article and Find Full Text PDFThe Alzheimer's Association has been convening individuals living with dementia as stakeholders for nearly 2 decades. This article outlines the evolution of, and lessons learned from, the Association's leadership in stakeholder engagement. It will also highlight the contributions of the Association's Early Stage Advisory Group in the areas of public policy, programming and resources, medical and scientific advancements, and public awareness.
View Article and Find Full Text PDFAlzheimers Dement (N Y)
October 2022
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.
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.
View Article and Find Full Text PDFBackground: The National Institute on Aging, in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act, hosted a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series on August 13, 2020. This article reflects three presentations related to Theme 6: Research Resources, Methods, and Data Infrastructure. Dr.
View Article and Find Full Text PDFObjective: The study evaluated the effects of care consultation delivered through the Alzheimer's Association National Helpline - a free resource in which master's-level clinicians offer confidential support. The study compared the effectiveness of Helpline "Care Consultation" and "Care Consultation Plus" conditions on caller outcomes.
Methods: Four hundred and forty-five non-crisis callers were randomly assigned to the traditional Helpline "Care Consultation" or a "Care Consultation Plus" condition that included one additional booster call.
In April, 2019, the Alzheimer's Association Dementia Care Provider Roundtable convened to discuss common challenges faced when implementing person-centered, non-pharmacological practices in long-term care and other settings that provide care and programs for persons living with dementia, and to develop relevant, specific guidance from the perspective of administrative leaders from 23 long-term and community-based care provider organizations (representing home, community-based, and residential care). Guidance related to 5 practice areas emerged from the facilitated discussion: having a foundational person-centered culture, conceptualizing behaviors as expressions and focusing on behavioral support, identifying antecedents and placing person-centeredness before protocols, modifying training to promote person-centered culture, and valuing implementation flexibility. In developing the practice guidance, a related list of priority areas for research and policy were also identified.
View Article and Find Full Text PDFAlzheimers Dement (N Y)
August 2019
The purpose of this introductory article to the special issue on psychosocial outcome measures in is to outline new frameworks to more effectively capture and measure the full range of how people living with Alzheimer's dementia and their family caregivers experience the disease process. Specifically, we consider the strengths and weaknesses of alternative perspectives, including person-centered, strength-based, and resilience-focused approaches that may complement and extend the dominant deficit paradigm to reflect the entirety of the dementia experience. Our aim is to encourage innovative methods to measure psychosocial aspects of Alzheimer's dementia and caregiving that have not yet received sufficient attention, including resources (e.
View Article and Find Full Text PDFBackground And Objectives: Person-centered care is a philosophy of care built around the needs of the individual and contingent upon knowing the unique individual through an interpersonal relationship. This review article outlines the history, components, and impact of person-centered care practices.
Research Design And Methods: Through literature review, published articles on person-centered measures and outcomes were examined.
Int Psychogeriatr
January 2017
Background: In 2014, the state of Oregon established Oregon Care Partners to provide high quality, free training to all dementia caregivers. This study evaluated participants' changes in knowledge, sense of competency in dementia caregiving, and ability to identify person-centered caregiving techniques after completing CARES® Dementia Basics online program, one of the educational resources available through this initiative.
Methods: A convenience sample of informal and formal caregivers (N = 51) provided data at three points in time; pre-test, post-test, and a follow-up test after an additional 30-day period to determine sustained changes in knowledge, sense of competency, and person-centered care.
An estimated 47 million people worldwide are living with dementia in 2015, and this number is projected to triple by 2050. In the absence of a disease-modifying treatment or cure, reducing the risk of developing dementia takes on added importance. In 2014, the World Dementia Council (WDC) requested the Alzheimer's Association evaluate and report on the state of the evidence on modifiable risk factors for cognitive decline and dementia.
View Article and Find Full Text PDFA person-centered care (PCC) training program was developed and disseminated to 84 institutes for retired religious persons across the United States. The program was delivered via a train-the-trainer model wherein institute trainers attended a 2-day training conference, then taught the material to direct care workers (DCWs) at their respective sites. Evaluation of the training showed that DCWs' attitudes toward and knowledge of PCC improved after training.
View Article and Find Full Text PDFDement Geriatr Cogn Disord
February 2011
Introduction: Nonpharmacological therapies (NPTs) can improve the quality of life (QoL) of people with Alzheimer's disease (AD) and their carers. The objective of this study was to evaluate the best evidence on the effects of NPTs in AD and related disorders (ADRD) by performing a systematic review and meta-analysis of the entire field.
Methods: Existing reviews and major electronic databases were searched for randomized controlled trials (RCTs).