Designing and Evaluating a Comprehensive Support Program for Families Caring for Relatives Living with TBI-AD/ADRD
Abstract
Caring for someone with Alzheimer’s disease and Alzheimer’s disease-related dementia (AD/ADRD) is challenging to families and professionals alike. When someone says the word “long-term care,” the first image that often comes to mind is a nursing home, but families, friends, acquaintances, and similar unpaid individuals provide the bulk of help to people living with AD/ADRD. This help comes with significant costs to caregivers in the form of stress, disrupted employment, and their own health problems. Relatives, friends, and acquaintances that provide assistance to those with traumatic brain injury (TBI) also report significant emotional, social, financial, and physical challenges. TBI is actually a risk factor for AD/ADRD, and there exist many people who have a history of TBI and are living with AD/ADRD. However, there are no programs that focus on the needs of caregivers who help those with TBI-AD/ADRD. This study will be the first of its kind to develop a support program for caregivers of people living with TBI-AD/ADRD. We call this program the TBI-AD/ADRD Caregiver Support Intervention (TACSI). The program will offer individual and family coaching in six sessions with an experienced professional. The sessions can take place over the phone or using secure internet video based on the preference of the participating caregiver. Sessions will take place weekly, and participating caregivers can contact the TACSI professional at any time using their phone or email if they need additional help. We will collaborate with the Mayo Clinic and the Minneapolis Veterans Affairs Healthcare System (MVAHCS) to identify caregivers of people with TBI-AD/ADRD who may be interested in receiving TACSI. We plan to develop and initially evaluate TACSI in two Phases. In Phase I, we will enroll 15 caregivers of people with TBI-AD/ADRD and evaluate TACSI over a 3-month period. This will help us learn if caregivers feel TACSI makes sense, is useful, and helps them manage challenges related to providing help to relatives or others with TBI-AD/ADRD. We will use both surveys as well as telephone interviews to learn if TACSI works as intended, and whether changes are needed to improve the program. In Phase II, we will randomly assign (like the flip of a coin) TBI-AD/ADRD caregivers to a group that receives TACSI, or a group that continues to receive usual services from the Mayo Clinic or the MVAHCS. We will follow caregivers for a 6-month period in Phase II, and like Phase I we will use surveys and interviews to determine if our evaluation design works and TACSI shows promise as an effective program for TBI-AD/ADRD caregivers. Support programs for caregivers of people living with TBI-AD/ADRD have yet to be developed, and we intend to do so with this project. We believe this proposal is highly responsive to the needs of family members, friends, and acquaintances who help persons with AD/ADRD as well as the care and support mission of the Department of Defense.
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Dec 05, 2021
- Source ID
- W81XWH2110726
Entities
People
- Joseph Gaugler
Organizations
- United States Army
- University of Minnesota