Dementia and Wandering Behaviour -Bringing Individuals Safely Home CCSMH -Sep 24-25, 2007

1. Dementia and Wandering Behaviour-Bringing Individuals Safely HomeCCSMH-Sep 24-25, 2007 EnkaXhixha Safely Home Coordinator, Alzheimer Society of Canada Kari Quinn-Humphrey Public Education Coordinator, Alzheimer Society of Toronto

2. There is no apparent conflict(s) of interest that may have a direct bearing on the subject matter of this presentation.

3. one national office 10 provincial organizations and more than 140 local groups across the country. The Alzheimer Society of CanadaIs a federation of provincial and local offices nation-wide dedicated to providing support, information and education to people with Alzheimer's disease, families, physicians and health-care providers; raising public awareness and public education about the prevention of the disease.

4. The Alzheimer Society of Canada Programs and Services • Research – 2.5 M annually invested in Research • Support and Information • Public Awareness • Safely Home Help for today. Hope for tomorrow...

5. Statistics • Over 35,000 people in Toronto have Alzheimer’s disease or a related dementia • An estimated 450,000 people in Canada have Alzheimer’s or a related disease • By the year 2031, over 750,000 Canadians will have Alzheimer’s disease

6. Alzheimer’s Frontal Lewy Body Vascular Creutzfeldt Disease Temporal Disease Dementia Jakob Dementia Disease Dementia Defined

7. Alzheimer’s Disease Defined • Progressive: the amount of damage increases over time • Degenerative: the nerve cells/neurons in the brain deteriorate • Irreversible: damage cause by disease cannot be repaired

8. Changes in the Brain • Neurofibrillary tangles • Amyloid plaque • Brain atrophy

11. The Journey: Early Stage Abilities AffectedTypical Symptoms Mental Abilities -Mild forgetfulness -Difficulty processing new information -Difficulty concentrating -Problems with orientation -Communication difficulties Moods and Emotions -Mood shifts -Depression Behaviours -Passiveness -Withdrawal -Restlessness -Anxiety Physical Abilities -Coordination problems

12. The Journey: Middle Stage Abilities AffectedTypical Symptoms Mental Abilities -Continued memory lapses -Forgetful about recent personal history -Disorientation re time and place Moods and Emotions -Personality changes -Mood changes Behaviours -Declining concentration -Repetition -Restlessness/ WANDERING -Delusions/Agitation Physical Abilities -Require assistance with daily tasks -Disrupted sleep patterns -Appetite fluctuations - Visual spatial problems

13. The Journey: Late Stage Abilities AffectedTypical Symptoms Mental Abilities -Abilities continue to decline -Inability to process information -Severe disorientation Moods and Emotions -Range of emotions and feelings remain -Possible withdrawal Behaviours -Non-verbal methods of communication -Responds to music/touch Physical Abilities -Sleeps longer and more often -Immobile/bedridden -Loses ability to speak -Incontinence

14. Wandering Defined Purposeful behavior that attempts to fulfill a particular need • The tendency to move about, either in a seemingly aimless or disoriented fashion, in pursuit of an indefinable or unobtainable goal (Snyder)

15. “All people with Alzheimer’s disease and related dementias should be considered a risk of wandering and getting lost.” Silverstein,et al., (2002)

16. Types of Wandering • Passive wandering • Purposeful wandering • Nighttime wandering • Industrious wandering • Other: Checking/trailing, puttering, excessive activity, attempt to escape/leave.

17. Reasons behind Wandering • Medication • Stress • Time confusion • Basic needs • Restlessness • Lack of recognition • Fear • Past behaviour/delusions

18. Unique Traits People with Alzheimer’s disease: • Their path may not be a logical one. • Often walk in a straight line: will go straight across fields, creeks, climb over obstruction areas… rather than selecting the path of least resistance, such as the road. Often end up in a secluded spot hidden by brush or other cover. • Are often not aware that they are lost.

19. Unique Traits People with Alzheimer’s disease: • Have a 50% chance of being injured or dying from exposure, hypothermia or drowning if they are not found within the first 12 hours — SEARCH IS AN EMERGENCY!  • May be in a heightened state of anxiety and tend to be hidden from their searchers. • People not involved in the official search often find them: Notify the community!

20. Communicating with a wandering person • Approach slowly from the front and introduce yourself • Speak slowly and calmly • Ask one question and give one direction at a time, repeat if necessary • Keep your instructions positive

21. Preventing wandering-Caregiver’s Guidelines • Secure your living area:locks, electronic buzzers or chimes on doors, disguise doors with curtains or screens; safety devices, alarms, bells, monitors • Secure the outsideenvironment • Be aware of hazards: bodies of water, dense foliage, steep stairways, high balconies, hedges-limit access to dangerous areas. Fence around patio or yard. Camouflage gates or exits • Create circular paths or enclosed outdoors for safe wandering

22. Preventing Wandering-Caregiver’s Guidelines STIMULATION STRATEGIES • Structured day • Encourage movement and exercise: supervised walking, offer to drive • Be objective • Continually reassure the person who may feel lost or abandoned.

23. Preventing Wandering-Caregiver’s Guidelines COMMUNITY STRATEGIES • Notify neighbours • Inform local police MONITORING STRATEGIES • Precaution and supervision • Register with Safely Home • Wandering technology devices: GPS tracking devices

24. Safely HomeTM - Alzheimer Wandering Registry • Established 1995 – A partnership between ASC and RCMP • Ancillary database on CPIC • Registration voluntary – one-time fee of $35 • Registrants receive an identification bracelet, identification cards

25. Benefits of registering • Easy identification of the wandering person • Safe return of the wandering person • Access to the registrant's information beyond a local area • Peace of mind for the family/caregiver

26. Safely HomeTM: Bracelet Front: Urgent See other side Back: Identification number (linked to CPIC) Person’s first name Memory loss Call police

27. How Can It Help? When a registrant goes missing… • The caregiver calls the local police. • Accessing CPIC, the police will find pertinent information about the registrant including personal history, physical characteristics and locations where the person is known to visit.

28. CPIC Screen

29. Data in the Record A querymay result in obtaining any or all of the following information on the person(the comprehensiveness of the data depends upon how complete a record was supplied to the Alzheimer Society). It may include: • Name, description, contact information. • Personal history, physical characteristics and locations where the person is known to visit. • Caregiver’s contact information

30. How Can It Help? When a registrant is found… • The community member will call police • The identification number from the person’s ID bracelet can be used to search CPIC. • Police notifies the caregiver.

31. To Register Someone: • Contact the Alzheimer Society or • Download registration form from website www.alzheimer.ca