Connecting research discovery with care delivery in dementia: the development of the Indianapolis Discovery Network for Dementia.

BACKGROUND: The US Institute of Medicine has recommended an integrated, locally sensitive collaboration among the various members of the community, health care systems, and research organizations to improve dementia care and dementia research. METHODS: Using complex adaptive system theory and reflective adaptive process, we developed a professional network called the "Indianapolis Discovery Network for Dementia" (IDND). The IDND facilitates effective and sustainable interactions among a local and diverse group of dementia researchers, clinical providers, and community advocates interested in improving care for dementia patients in Indianapolis, Indiana. RESULTS: The IDND was established in February 2006 and now includes more than 250 members from more than 30 local (central Indiana) organizations representing 20 disciplines. The network uses two types of communication to connect its members. The first is a 2-hour face-to-face bimonthly meeting open to all members. The second is a web-based resource center (http://www.indydiscoverynetwork.org ). To date, the network has: (1) accomplished the development of a network website with an annual average of 12,711 hits per day; (2) produced clinical tools such as the Healthy Aging Brain Care Monitor and the Anticholinergic Cognitive Burden Scale; (3) translated and implemented the collaborative dementia care model into two local health care systems; (4) created web-based tracking software, the Enhanced Medical Record for Aging Brain Care (eMR-ABC), to support care coordination for patients with dementia; (5) received more than USD$24 million in funding for members for dementia-related research studies; and (6) adopted a new group-based problem-solving process called the "IDND consultancy round." CONCLUSION: A local interdisciplinary "think-tank" network focused on dementia that promotes collaboration in research projects, educational initiatives, and quality improvement efforts that meet the local research, clinical, and community needs relevant to dementia care has been built.

Practical clinical tool to monitor dementia symptoms: the HABC-Monitor.

BACKGROUND: Dementia care providers need a clinical assessment tool similar to the blood pressure cuff (sphygmomanometer) used by clinicians and patients for managing hypertension. A "blood pressure cuff " for dementia would be an inexpensive, simple, user-friendly, easily standardized, sensitive to change, and widely available multidomain instrument for providers and informal caregivers to measure severity of dementia symptoms. The purpose of this study was to assess the reliability and validity of the Healthy Aging Brain Care Monitor (HABC-Monitor) for measuring and monitoring the severity of dementia symptoms through caregiver reports. METHODS: The first prototype of the HABC-Monitor was developed in collaboration with the Indianapolis Discovery Network for Dementia, which includes 200 members representing 20 disciplines from 20 local organizations, and an expert panel of 22 experts in dementia care and research. The HABC-Monitor has three patient symptom domains (cognitive, functional, behavioral/psychological) and a caregiver quality of life domain. Patients (n = 171) and their informal caregivers (n = 171) were consecutively approached and consented during, or by phone shortly following, a patient's routine visit to their memory care provider. RESULTS: The HABC-Monitor demonstrated good internal consistency (0.73-0.92); construct validity indicated by correlations with the caregiver-reported Neuropsychiatric Inventory (NPI) total score and NPI caregiver distress score; sensitivity to three-month change compared with NPI "reliable change" groups; and known-groups validity, indicated by significant separation of Mini-Mental Status Examination severity groups and clinical diagnostic groups. Although not designed as a screening study, there was evidence for good operating characteristics, according to area under the receiver-operator curve with respect to gold standard clinical diagnoses, relative to Mini-Mental Status Examination or NPI. CONCLUSION: The HABC-Monitor demonstrates good reliability and validity as a clinically practical multidimensional tool for monitoring symptoms of dementia through the informal caregiver.