Building a Bridge (betwen clinical and community care): Post-diagnosis support of persons with dementia and their family

University Of Iowa, Iowa City IA

Investigators

Linked publications, trials & patents

Abstract

PROJECT SUMMARY: Dementia diagnosis triggers a transitional phase for the individuals and their families, often causing emotional distress and family conflicts due to the ambiguity of the illness and future trajectories. Families often report a lack of information and guidance during the period immediately following diagnosis, suggesting a missed opportunity for prevention of family distress at the outset of the caregiver and patient career. With large and increasing numbers of individuals newly diagnosed with Alzheimer's Disease and Related Dementias (ADRD) each year, there is an urgent need to develop effective intervention models to support role transitions and minimize distress related to ADRD diagnosis. The long-term goal of this research is to minimize negative consequences of ADRD by enhancing the support systems of the affected families as they start their new and challenging phase of life as patients and family caregivers. This goal is consistent with the national goal set by the Healthy People 2020 to reduce the proportion of unpaid caregivers of older adults who report unmet needs for caregiver support services and to prevent negative health impacts of caregiving. The specific aims of this research are to: (1) develop an intervention toolkit and protocol to professionally support role transitions by developing community-based action plans (e.g., education, support groups) at medical clinics soon after the diagnosis; (2) evaluate the impact of this new Options Counselor-Health Education (OC-HE) intervention on bridging the medical and community-settings through potential mechanisms of influence, enhancement of social networks and support; and (3) assess the feasibility and acceptability of the program. Implementation strategies will be developed in collaboration with partnering clinics and local Area Agencies on Aging. Participants will be recruited from three clinics at the University of Iowa Hospitals and Clinics (UIHC) that provide dementia diagnostic services and randomized into an intervention or control arm; and complete baseline and three- and six-month follow-up interviews. This study is innovative in its consideration of contributing factors at multiple levels of the ecological model (i.e., individual, social network, and organizational) and its collaborative approach, involving medical clinics, an Area Agency on Aging (AAA), and Alzheimer's Association (AA) to develop and evaluate a new care model that bridges between the medical and community settings. Given the wide geographic areas covered by AAAs and AAs nationwide, this program has a great potential to be replicated in other areas, and to reach a large number of individuals receiving dementia diagnosis and their families to facilitate sustained independent living in communities.