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

Reconsidering frameworks of Alzheimer’s dementia when assessing psychosocial outcomes

The purpose of this introductory article to the special issue on psychosocial outcome measures in Alzheimer’s & Dementia: Translational Research & Clinical Interventions 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.g., services and supports) and positive caregiver and care recipient outcomes (e.g., positive mood and adaptation).Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/152840/1/trc2jtrci201902008.pd

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

Abstract 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

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