1. Presented by Barbara McKenzie, MA; Meredeth Rowe, PhD & Helen Moore, PhD

2. Introduction Individuals with dementia diagnosis are at risk of becoming lost. Many elderly veterans served by the Veteran Administration (VA) have dementia, resulting in memory problems, personality changes, judgment and spatial disorientation. This purpose of this study was to determine incidence, severity, frequency and caregivers response when person with dementia (PWD) becomes lost in the community.

3. Clinical Significance Few studies have addressed PWD becoming lost in the community There are no national database of such incidence or of cases in which lost individuals die before being found

4. Objectives Determine barriers for registration in the MedicAlert+Safe Return® now funded by James A. Haley (JAH) Veteran Administration Medical Center (VAMC) Facilitate registration in the MedicAlert+Safe Return® program Address gaps to understanding incidence, severity, frequency, and clinical correlations of becoming lost

5. Questions In one year, what percentage of at-risk veterans served by the JAH VAMC and living in the community became lost? What circumstances occurred immediately before the individual became missing? What was the compliance of MedicAlert+Safe Return® enrollees for wearing ID (Bracelet, dog tags iron on labels)?

6. Questions (continued) What characteristics differentiated PWDs who became lost from those who did not? What are the barriers and facilitators to registration in the MedicAlert+Safe Return® programs?

7. Methods Everyone eligible for enrollment in MedicAlert+Safe Return® were contacted by mail Participation in our study was requested Those who agreed completed an initial questionnaire addressing their enrollment status with MedicAlert+Safe Return® program

8. Data Collection 1,910 letters were mailed Within 4 months we received 320 replies 17% Final sample size 262 14% PWD were overwhelmingly male at 95% 193 enrolled in the MedicAlert+Safe Return® program as a result of this study 38 subjects returned a monthly survey indicating the PWD became lost in the last month Telephone interviews were conducted with these 38 subjects

9. Questionnaire ID # ________ Dear Caregiver, This is your monthly letter from the James A Haley VAMC study on enrollment into Safe Return®. Please answer the following questions regarding events from the past month. 1. Which identification method is used by the person with the memory problem (i.e., relative)? (CHECK ALL THAT APPLY) Safe Return® wrist bracelet Iron-on label on clothes Dog tags worn around the neck ID bracelet (not Safe Return®) Not applicable: not enrolled in Safe Return® 1a. If the veteran wears an ID wrist bracelet or dog tags, how often does he/she remove it? Frequently (e.g. every day) Often (e.g. 1-6 times per week) Occasionally (e.g. 1-3 times per month) Seldom (e.g. less than once per month) Never 2. Were there times in the last 30 days in which you did not know where the person you are caring for was? no, thank you for your time. Please return this survey in the enclosed envelope. yes, please continue to question 3. How many times in the last 30 days did you not know where the person you are caring for was? ___________________________________________________ 4. Did you ask neighbors or relatives for help in locating the person you are caring for? YES NO 5. Did you contact Safe Return® for this incident? YES NO Why or why not? ______________________________________________________ ________________________________________________ 6. Did you contact your local law enforcement? YES NO 7. Can we contact you by phone to gather more information about this incident? YES NO Thank you for your time. We have enclosed a dollar as a token of our appreciation. Please return survey in the enclosed envelope

10. Factor affecting enrollment Made caregiver feel better 154 80% Made veterans feel better 131 68% Enrollment fee paid for by JAH VAMC 141 73% Not applicable: Don’t get lost 20 10% Monitored continuously so not needed 14 7% No current photo 29 15% Misplaced information (Letter/Pamphlet) 8 4% Could not find law enforcement telephone number 7 4% Recipient could not wear jewelry 10 5% Could not measure wrist 5 3%

11. Interview PWD become lost when: they go for normal walks they become disoriented after waking up from sleeping trying to find the bathroom at home trying to find caregivers trying to find their way to a friend’s house waiting on caregivers driving caregivers become distracted

12. Incidents In 12 months there were 75 incidents of wandering Of the 38 telephone interviews 19 occurred on a weekday 3 individuals were lost inside the house 4 911 calls made 1 MedicAlert+Safe Return ® call made 2 individuals were placed in Nursing Homes 1 has respite care two hours per day for two days per week No injuries of death

13. References [1] Rowe M, Feinglass N, Wiss M. Persons with dementia who become lost in the community: a case study, current research, and recommendations. Mayo Clin Proc 2004;79:1417-1422. [2] Rowe M, Glover J. Antecedents, descriptions and consequences of wandering in cognitively-impaired adults and the Safe Return (SR) program. Am J Alzheimers Dis Other Demen 2001;16:344-352. [3] Bass E, Rowe M, Moreno M. The Alzheimer’s Association’s Safe Return® Program for Persons Who Wander. In A Nelson, D Algase (Eds.) Safe and Ethical Approaches for Wandering Behaviors: a Practical Guide. New York: Springer, 2007. [4] Phone correspondence with Mary Defrost of the Ulster County Office for the Aging in Keyston, NY. December 22, 2004. [5] Phone correspondence with Kim Linton of the Southfield Michigan Police Department. January 4, 2005. [6] Bass E, Rowe M,Moreno M, McKenzie B. Expanding participation in Alzheimer’s Association Safe Return® by improving enrollment. Am J Alzheimer’s Dis Other Demen 2008; 23 (5) 447