1. Understanding and Managing Wander Behaviour due to Dementia Presented by Dr. Marjorie Moulton Executive Director & Founder of We Rage We Weep Alzheimer Foundation C0-Founder & Director of Project Lifesaver of Greater Victoria

2. All About Wandering What is wandering? The prevalence Why do they wander? Signs & triggers Types of wanderers Comprehending the risk How far will they go? Creating a safe environment Wander prevention techniques Wander prevention programs & technologies Who wanders? Costs Why wander protection is important Things to remember

3. Executive Director & Founder of We Rage We Weep Alzheimer Foundation – May 2006 Co-founder & Director of Project Lifesaver of Greater Victoria with David Rittenhouse – Jan 2008 Certified Electronic Search Specialist with Project Lifesaver International Began career in allopathic medicine & psychology in 1989 Earned a doctorate in Oriental Medicine Taught 2 yrs. at Oshio College of Acupuncture and Herbology Acupuncturist and Oriental Health Practitioner in Private Practice for 12

4. Wandering is defined as behaviour by a person which represents both purposeful exit seeking and non-purposeful mobility within or outside a residence whether it be a private home or professional setting.

5. Not only wandering can be cause for concern: Getting lost Becoming disoriented Going in the wrong direction Misplacing a car Not remembering how to get home My Dad’s Wandering Story How do you misplace a tree?

6. 500,000 Canadians have dementia – 1.5% of population 69,000 British Columbians – 1.6% of population 1 in 11 over age 65 71,000 Canadians under age 65 A new case every 5 minutes 59% of persons with dementia wander 72% of those will do so repeatedly

7. We are all wanders of sorts I like to travel/explore Books written i.e. Homer’s An Odyssey TV shows i.e. Star Trek May seem random but... Boredom Curiosity General desire to get up & go Or may go back in time (example: the life line)

8. How do you know wandering is about to occur? Agitation and restlessness Pacing, wandering aimlessly i.e. in & out of rooms Wandering based on routine - Used to go for long walks (story – lake) Making references to “going out”, “going home”, looking for someone they can’t possibly find - A deceased relative (mother/father) (story – children) Person doesn’t live in area

9. What triggers can induce wandering? Old memories stirred Triggers a desire to go to work or childhood home Change in routine (stats – care homes) Move to a new home or to a professional care setting Recent communication (story – ferry) Letter, email or phone call An event (story – attic/broom cupboard) Christmas, wedding where there is a lot of commotion Triggers a desire to get away somewhere quiet

10. Critical Wanderers: exhibit goal directed or searching behaviours in an attempt to “get away” (story – clipboard) Aimless Wanderers: move away from a designated area without intent or goal (following someone else) Purposeful Wanderers: their movement reflects goal- directed industrious behaviour to produce auditory or tactile stimulation

11. Wandering is the most life threatening behaviour a person with dementia will engage in! The survival rate of a person with cognitive impairment, in good physical condition, missing up to 24 hours (Golden Window) is just 50% After 24 hours, they will usually be severely injured or deceased

12. Most are found with 1 mile or 1.5km of home Car, bus, plane (story – car left) On a mission! People with dementia will wander until: They are tired They are injured They can’t go any further

13. Reduce background noise (loud music/TV) Give visual cues, pictures & signs to find their room or bathroom Color code their belongings Provide tactile stimuli (worry beads) Keep family photo albums & memorabilia to create sense of familiarity A routine of scheduled events and rest times is helpful Limit the number of people coming & going Adequate exercise & stimulation is essential

14. Use ribbon or Velcro strips to prevent entry into off-limit areas Post a sign that says “STOP” or “DO NOT ENTER” on exits Place a black mat or paint a black space on the floor by exits, it can appear as an impassable hole Conceal or camouflage doors/exits (same color as walls) Avoid leaving outside doors or windows propped open Install a door chime or buzzer to give notice of exiting Key access deadbolt on outer door or safety lock that makes it difficult or confusing to open Put away items for going out i.e. shoes, coat, purse/wallet Hide keys to prevent driving

15. Check in on the person frequently Monitor & record wander patterns i.e. frequency, duration, time of day Make sure the person in fed, hydrated & using toilet regularly Cut fluids in evening to prevent getting up to toilet in night Keep track of medications & their effects Look for changes in behaviour patterns Dress person in bright, reflective clothing Ensure they carry ID Have recent photo at the ready Be especially vigilant during afternoon/evening (sundowning)

16. Get a medic alert bracelet Get Lifeline (especially of the person lives alone) Enrol in the local ‘Wander Registry’ Use alarms or monitoring systems to alert you to unusual activity such as getting up at night Install cameras so activity can be monitored remotely Notify friends & neighbours of situation for when you need help/support

17. A wander intervention system: Safely Home Comfort Zone Silver Alert GPS, GSM enabled device or phone SMS cellular/internet interface Project Lifesaver of Greater Victoria

18. Safely Home Wander Registry Alzheimer Society in partnership with RCMP Available across Canada Online confidential police data base Registration is voluntary One time fee of $35.00 The member wears an ID bracelet There is a caregiver handbook & ID cards If missing caregiver calls police, they access data base info on the member to help locate them

19. Comfort Zone Available through Alzheimer Association in US New web based GPS location management service Uses a device & internet to set safety zones Tracking device can be carried, worn on person or mounted in car Caregivers can access a loved ones location by internet or calling a monitoring centre They can set alerts to let them know when a loved one is outside the ‘comfort zone’ Also includes help line for support, information & counselling Costs include $45.00US activation fee & $42.99US per month

20. Silver Alert Similar to Amber Alert for children Uses broadcast media to send a bulletin on a missing adult with cognitive disability Broadcasts helps law enforcement locate missing person National program growing in US & Canada Free online registry data base Also have bracelets & pendants available for $24.95 US Bracelets & pendants have emergency # on them

21. GPS, GSM, SMS, Cellular, Internet programs These programs are growing as need is recognized Provided mostly through cell phone & internet A bunch in US i.e. Lifetracker, True Tracker Similar technology as used in business to track workers & valuable assets Available through Telus & Bell in Canada Cognitively impaired person carries cell phone You set parameters for where they can go ‘geo- fences’ You get a message when these geo-fences are crossed You can go online as well & see where your loved one is in real time Pricing depends on cell company

22. Project Lifesaver of Greater Victoria Only program that uses VHF radio frequency technology Puts active tracking equipment into hands of first responders Client wears Personal Locator Unit (PLU) with unique frequency & ID Go missing caregiver calls partner first responder agency they tune into frequency & track directly to client’s location Available across North America – 17,000 users, 1,100 communities, 2,100 lives saved 10 yr record, 100% success rate, search time 30 minutes One-time fee $300.00 & $30/month

23. It’s not just those with Alzheimer’s or dementia. Children/Teens with Autism Downs Syndrome Foetal Alcohol Syndrome Prader Willi Syndrome Parkinson’s

24. Safely Home is very reasonable with one time fee to Alzheimer Society Project Lifesaver of Greater Victoria fees may be covered by We Rage We Weep Alzheimer Foundation St. Elizabeth Health Care Foundation provides some assistance for various home care programs i.e. Lifeline If you have a child who wanders there may be financial support available too Check with local association

25. Your Loved One: Dignity Independence Security You: Health Peace of Mind A good night’s rest!

26. 1. Stop asking your loved one questions! 2. They don’t need tough love, they need unconditional love. 3. Caregiver’s Mantra: It’s the disease not the person. 4. If you have met one person with Alzheimer’s, you have met one person with Alzheimer’s!

27. We Rage, We Weep Alzheimer Foundation Easing the financial burden of care giving - one family at a time www.werageweweep.com Registered Charity BN: 80814 2277 RR0001 & Project Lifesaver of Greater Victoria