Emergency Department Communication in Persons Living With Dementia and Care Partners: A Scoping Review.

OBJECTIVES: To synthesize published research exploring emergency department (ED) communication strategies and decision-making with persons living with dementia (PLWD) and their care partners as the basis for a multistakeholder consensus conference to prioritize future research. DESIGN: Systematic scoping review. SETTINGS AND PARTICIPANTS: PLWD and their care partners in the ED setting. METHODS: Informed by 2 Patient-Intervention-Comparison-Outcome (PICO) questions, we conducted systematic electronic searches of medical research databases for relevant publications following standardized methodological guidelines. The results were presented to interdisciplinary stakeholders, including dementia researchers, clinicians, PLWD, care partners, and advocacy organizations. The PICO questions included: How does communication differ for PLWD compared with persons without dementia? Are there specific communication strategies that improve the outcomes of ED care? Future research areas were prioritized. RESULTS: From 5451 studies identified for PICO-1, 21 were abstracted. From 2687 studies identified for PICO-2, 3 were abstracted. None of the included studies directly evaluated communication differences between PLWD and other populations, nor the effectiveness of specific communication strategies. General themes emerging from the scoping review included perceptions by PLWD/care partners of rushed ED communication, often exacerbated by inconsistent messages between providers. Care partners consistently reported limited engagement in medical decision-making. In order, the research priorities identified included: (1) Barriers/facilitators of effective communication; (2) valid outcome measures of effective communication; (3) best practices for care partner engagement; (4) defining how individual-, provider-, and system-level factors influence communication; and (5) understanding how each member of ED team can ensure high-quality communication. CONCLUSIONS AND IMPLICATIONS: Research exploring ED communication with PLWD is sparse and does not directly evaluate specific communication strategies. Defining barriers and facilitators of effective communication was the highest-ranked research priority, followed by validating outcome measures associated with improved information exchange.

Treating an Alzheimer's patient? 6 tips from a patient's spouse.

The author's wife struggled with Alzheimer's disease for 10 years. The insights he provides here are drawn from his experience--and the literature.

New York can be our nation's center for Alzheimer's research.

More than 5 million people in this country have Alzheimer's disease, and more than 300,000 of those with Alzheimer's live in New York. By 2025, it is estimated that there will be 350,000 residents living with Alzheimer's in New York. Congressman Steve Israel and New York Assemblyman Charles Lavine issued a joint proposal in June, 2013 suggesting that New York become this country's center for Alzheimer's research. Obviously, they would both like to see increased federal funding, but they also know that we cannot count on that happening. So Israel and Lavine have proposed a $3 billion state bonding initiative to secure sufficient funding to tackle this disease. It would be similar to the bonding initiatives that have made California and Texas this nation's centers for stem cell and cancer research. The bond would provide a dedicated funding stream to support research to find effective means to treat, cure, and eventually prevent Alzheimer's, and fund programs to help people currently dealing with Alzheimer's and their caregivers. New York already has some of the major "ingredients" to make an Alzheimer's bond initiative a success, including 3 of our nation's 29 Alzheimer's Disease Research Centers and some of the finest research facilities in the nation for genetic and neuroscience research. One can only imagine the synergy of having these world class institutions working on cooperative grants and projects with sufficient funding to attract even more world class researchers and scientists to New York to find ways to prevent, treat, and cure Alzheimer's.

A caregiver's wish list for a National Alzheimer's Agenda.

When panels are convened to discuss the best way to deal with Alzheimer's disease (AD), the panels often consist of representatives from government agencies, national Alzheimer's organizations, medicine, research, and pharmaceutical companies. Although each of these stakeholder groups has much to contribute to such discussions, too often the voices of caregivers are not heard. Even the National Alzheimer's Project Act (NAPA) Advisory Council has only one full-time 24/7 caregiver as a member. Of 26 voices heard at the NAPA meetings, only 1 can speak for what life is like for a 24/7 caregiver of a loved one having AD. This article provides 10 items that I would raise at such a meeting based upon my own personal experience and what I have learned from others in my weekly spouse caregiver support group and in my online support groups. Some items suggest funding priorities, some suggest changes in how doctors currently diagnose and treat people with AD and their caregivers, and some suggest the need for more caregiver voices to be heard by government panels and politicians who have the power to effect change.