Dementia care navigation: Building toward a common definition, key principles, and outcomes.

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. METHODS: The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to identify evidence-based guidelines. RESULTS: Recognizing the unique and challenging needs of persons living with dementia and their care partners, several U.S. dementia care navigation programs have been developed and assessed in recent years. Collectively these programs demonstrate that persons living with dementia and their care partners benefit from dementia care navigation. Improved care system outcomes for the person living with dementia include reduced emergency department visits, lower hospital readmissions, fewer days hospitalized, and shorter delays in long-term care placement. Well-being is also increased, as there is decreased depression, illness, strain, embarrassment, and behavioral symptoms and increased self-reported quality of life. For care partners, dementia navigation resulted in decreased depression, burden, and unmet needs. DISCUSSION: This article presents principles of dementia care navigation to inform existing and emerging dementia care navigation programs. Highlights: Several U.S. dementia care navigation programs have demonstrated outcomes for persons living with dementia, care partners, and health systems.The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to create a shared definition and identify evidence-based guidelines or principles.These outlined principles of dementia care navigation can inform existing and emerging dementia care navigation programs.

Personal meaningfulness of potential FDA-approved treatments: Perspectives of individuals living with Alzheimer's disease.

With 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. Participants felt that researchers and regulators need to consider personal meaningfulness alongside clinical meaningfulness. At the same time, individuals living with AD felt that access, education, choice, and affordability were all important considerations moving forward.

One call makes a difference: An evaluation of the Alzheimer's Association National Helpline on dementia caregiver outcomes.

OBJECTIVE: 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. RESULTS: While no differences were found between the two conditions, the study found that callers reported significantly improved caregiver mental health scores (27 % net improvement over baseline) and ability to manage emotions (29 % net improvement) at one week (p = .006). By one week, 70 % of callers had put action steps in place and by 1 month 80 % of callers had put action steps into place. Over 80 % of callers reported action steps were "helpful". CONCLUSION: A single call provided a measurable benefit to caregivers'mental health, ability to manage emotions and ability to engage in action planning and accessing resources. PRACTICE IMPLICATIONS: This pilot study demonstrated that the support provided via the Helpline can be effective at improving caregiver mental health and improving the ability of callers to "take action".

What Is Really Needed to Provide Effective, Person-Centered Care for Behavioral Expressions of Dementia? Guidance from The Alzheimer's Association Dementia Care Provider Roundtable.

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.

The Fundamentals of Person-Centered Care for Individuals With Dementia.

Background 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. Results: The history of person-centered care was described, core principles of care for individuals with dementia outlined, current tools to measure person-centered care approaches reviewed, and outcomes of interventions discussed. Discussion and Implications: Evidence-based practice recommendations for person-centered care for individuals with dementia are outlined. More research is needed to further assess the outcomes of person-centered care approaches and models.

Innovation in care for individuals with cognitive impairment: Can reimbursement policy spread best practices?

There is now an unprecedented opportunity to improve the care of the over 5 million people who are living with Alzheimer's disease and related dementias and many more with cognitive impairment due to brain injury, systemic diseases, and other causes. The introduction of a new Medicare care planning benefit-long sought openly by advocacy organizations and clinicians and badly needed by patients and families-could greatly improve health care quality, but only if widely and fully implemented. We describe the components of this new benefit and its promise of better clinical care, as well as its potential to create a new platform for clinical and health outcomes research. We highlight external factors-and some that are internal to the benefit structure itself-that challenge the full realization of its value, and we call for broad public and professional engagement to ensure that it will not fail.

The Impact of Experience with a Family Member with Alzheimer's Disease on Views about the Disease across Five Countries.

The objective of this paper is to understand how the public's beliefs in five countries may change as more families have direct experience with Alzheimer's disease. The data are derived from a questionnaire survey conducted by telephone (landline and cell) with 2678 randomly selected adults in France, Germany, Poland, Spain, and the United States. The paper analyzes the beliefs and anticipated behavior of those in each country who report having had a family member with Alzheimer's disease versus those who do not. In one or more countries, differences were found between the two groups in their concern about getting Alzheimer's disease, knowledge that the disease is fatal, awareness of certain symptoms, and support for increased public spending. The results suggest that as more people have experience with a family member who has Alzheimer's disease, the public will generally become more concerned about Alzheimer's disease and more likely to recognize that Alzheimer's disease is a fatal disease. The findings suggest that other beliefs may only be affected if there are future major educational campaigns about the disease. The publics in individual countries, with differing cultures and health systems, are likely to respond in different ways as more families have experience with Alzheimer's disease.