Name of Intervention: REACH for TLC Caregiver Intervention
Principal Investigator: Diane F. Mahoney PhD, APRN, BC GNP
Institution: MGH Institute of Health Professions, Boston, MA.
We conducted a randomized controlled study of 100 caregivers, 51 in the usual care group and 49 in the technology intervention group over a 12 month period to determine the effects of an automated telephone support system on the bothersome nature of caregiving, anxiety, and depression given different levels of caregiving mastery. REACH for Telephone linked care (TLC) was developed specifically for family caregivers of people with Alzheimer’s disease. Caregivers pressed designated keys on the touch-tone keypad of the regular home telephones to communicate with TLC and the system speaks to caregivers using a human voice controlled by an interactive voice response (IVR) computer system. REACH for TLC 1) queried the primary caregiver’s stress level on a weekly basis and made recommendations to lower and referrals when necessary. 2) provided a voice mail caregiver support network, 3) offered voice mail access to a panel of experts in Alzheimer’s Disease & 4) provided a twenty minute personalized but automated caregiver “respite”/ patient distraction telephone conversation. The system operated 24/7 and was offered free for a one year period. Outcomes were measured both at the site level and by an external data coordinating center for comparison to other REACH interventions. REACH, was the largest randomized controlled clinical trial involving 1222 caregiver and care recipient dyads recruited from 6 different sites in the U.S. ( Ala, MA, Fla, Phil, Tn, and Ca) designed to reduce caregiver burden among Alzheimer’s family caregivers.
2001-12/31/2002 TLC Telephone System for Alzheimer’s Family Caregivers NIH, NIA U01AG013255-06S1 REACH continuation supplement.
1995-2000. IVR Telephone System for Alzheimer’s Family Caregivers. NIH, NIA grant U01 – AG13255-01, REACH Project (Resources to Enhance Alzheimer Caregivers Health), MA Site 1995-2001.
Telephone linked care, caregiver support, Interactive Voice Response systems, respite, telecommunications, telecare, computer mediated intervention
Using a repeated measures approach for longitudinal data (baseline, 6, 12, and 18mo) and an intention-to-treat approach, results indicated a significant intervention effect for participants with lower mastery at baseline on bother, anxiety, and depression. Additionally, wives exhibited a significant intervention effect in the reduction of the bothersome nature of caregiving. Those most likely to benefit from this system are wives who exhibit low mastery and high anxiety, a critical subset of caregivers.
Differential adoption of technology usage occurred with surprising satisfaction from many non-users. Content analysis of their comments indicated no immediate need for support but they placed a high value on knowing it was available should the need arise. Unsatisfied non-users had expressed preference for personal interactions and reluctance to use IVR technology at baseline and this was predictive of non-use.
All integrated / programmed into the IVR system. Over the course of each month, the TLC program would automatically dial participants and upon their verification commence a standardized but personalized conversation. After the initial personal greeting, the first weekly conversation queried them about the 28 common Alzheimer’s related behaviors that have been found to be stressful to caregivers. For each positive response, the caregiver could chose to obtain specific advice from peers and or professionals on how to manage that behavior. In subsequent weeks, the identified behaviors are tracked to see if they remain and if so the associated caregiver’s stress level score. If stress levels escalated over three weeks, the caregiver was informed of such and advised to use the within program voice mail support from peers and our expert panel. If the fourth week or longer continued to show stress escalation, the caregiver was advised to use a within the program stress reduction module that provided automated coaching to relaxation exercises and also referred to our telephone support group that was moderated by a geriatric psychiatric nurse specialist. She held several “Coffee Klaches” or real time telephone conference calls on topics of concern raised by caregivers. Over the 12 month period, caregivers were offered each month a new IVR self-help / wellness topic that would guide them through self assessments of their eating, exercise, and other health habits with the goal of encouraging them to consider their wellbeing as well as their care recipients. Each “conversation” was designed to last no more than 10 minutes.
Training: One twenty minute orientation training program for caregivers
*-***Primary evidence based outcome papers.
Mahoney, D., Tarlow, B. & Sandaire, J. (1998). A computer based program for Alzheimer’s caregivers. Computers in Nursing,16(4):208-216. (Detailed intervention description)
Mahoney, D. (1998). A content analysis of an Alzheimer family caregivers virtual focus group. American Journal of Alzheimer’s Disease, Nov/Dec, 13(6),309-316.
Mahoney, D. (2000) Developing technology applications for intervention research : A case study. Computers in Nursing, 18(6),260-264.
Mahoney, D., Tarlow, B., Jones, RN, Tennstedt, S., & Kasten L. (2001) Factors affecting the use of a telephone-based computerized intervention for caregivers of people with Alzheimer’s disease. Journal of Telemedicine and Telecare, 7,139-148.
*Gitlin, L. N., Belle, S. H., Burgio, L.,D., Czaja, S., J., Mahoney, D., Gallagher-Thompson, D., Burns, R., Hauck, W. W., Zhang, S., Schulz, R., & Ory, M. (2003). "Effect of multicomponent interventions on caregiver burden and depression: The REACH multisite initiative at six month follow-up. Psychology and Aging, 18, (3), 361-374.
**Schulz, R. , Burgio, L., Burns, R., Eisodorfer, C., Gallagher-Thompson, D, Gitlin, L., & DF Mahoney. (2003) Resources for Enhancing Alzheimer’s Caregiver Health (REACH): Overview, Site-Specific Outcomes, Future Directions. The Gerontologist, 43(4), 514-520.
Mahoney, D., Tarlow, B, & Jones, R. (2003) Effects of an automated telephone support system on caregiver burden and anxiety: Findings from the REACH for Telephone-Linked Care intervention study. The Gerontologist, 43(4),556-567.