Janelle Christensen, Ph.D., M.P.H.

1. Janelle Christensen, Ph.D., M.P.H. For University of Miami School of Nursing & Health Studies

2. Overview • Introduction (5 min) • Educational Background and Research Interests • Overview of my Teaching Philosophy (5 min) • Sample Lecture and Research (25 min) • “Disaster Preparedness for People with Alzheimer’s Disease and Related Disorders” • Questions (30 min)

3. Introduction: Education • Ph.D. Applied Anthropology • University of South Florida • Bio-cultural Medical track • Dissertation: “Hurricane Preparedness of Community-Dwelling Dementia Caregivers in South Florida” 2012

4. Introduction, continued • M.P.H. Global Health • University of South Florida • Thesis: “Public Health for the Batwa in the Bwindi Impenetrable Forest, Uganda” 2012

5. Introduction, continued • M.A. Sociology of Law • International Institute for Sociology of Law, Spain • Tesina: “Camphill Communities In Disparate Socio-legal Environments: Negotiating Community Life for Adults with Developmental Disabilities in Germany and the United States. ”

6. Teaching Strategies • The “Hook”- opening comic, movie clip, activity • Questioning techniques • Interactive Discussions • Wait time (after asking questions) • Break up the lecture • Group activities • Video Clip • Quiz • Participation points (Not always discussion participation. Can get credit for participating in group activities, being present for quizzes).

7. Public Health Hurricane Preparedness for People with Alzheimer’s Disease and Related Disorders Janelle J. Christensen, Ph.D., M.P.H.

8. Review of Past Lecture • Before I begin, I review the previous lecture’s main points. • I explain how that information will tie into today’s topics.

9. Outline of Today’s Lecture Activity: “Taking Care” Risk, Vulnerability, & Public Health Disaster Cycle Disaster Preparedness as Risk Reduction Barriers to Disaster Preparedness Activity: “Evaluating Disaster Preparedness Materials” Overview of Research Questions

10. Public Health: Caregiving and Hurricane PreparednessJanelle J. Christensen, PhD., M.P.H.

11. Activity: Evaluate Disaster Preparedness Materials (15 min) In small groups, compare the two special needs shelter forms. What is a special needs shelter? Who qualifies? What makes it different from a “regular shelter”? Is the information clear? Would the “average person” be able to read it?

12. “Taking Care” • How many of you areparents? • How many of you have parents (or grandparents) that are in need of some level of assistance (help paying bills, groceries)? • Professional versus Informal Caregiving • As a caregiver, what sort of things do YOU have to think about EVERY DAY that other people might not have to?

13. “Taking Care” • Now, imagine a hurricane is coming right toward where you live. • What do you need to do to keep your family and yourself safe?

14. Alzheimer’s Disease and Related Disorders (ADRD) • An estimated 5.4 million Americans had a diagnosis of Alzheimer’s disease or a related disorder (ADRD) in 2011 • 450,000 people with ADRD live in Florida • 1.4 million unpaid caregivers providing for their needs • (Alzheimer’s Association 2011)

15. Alzheimer’s Disease and Related Disorders (ADRD) • What are some pubic health concerns related to ADRD (in general)? • What public health concerns might be most prominent during a natural disaster?

16. “My patient is not dead, my patient is not dying, all she needs is oxygen!" Can this be prevented? “Terri Johnson screams as she seeks help for Dorothy Duvic at the Morial Convention Center in New Orleans in the aftermath of Hurricane Katrina on Sept. 1, 2005. Johnson was an in-home caretaker for Duvic.” (Melissa Phillip : Houston Chronicle)

17. In public health terms, what is the definition of RISK? • What is the definition of VULNERABILITY?

18. RISK • ‘Risk’ can have neutral definition, referring to probability, or the mathematical likelihood of an event occurring. • “The risk of an event occurring could therefore be relate to either a positive or negative outcome, as in the risk of winning the lottery” • In public health, “risk” is often used as a synonym for “danger”. • (Lupton 1993: 425)

19. Hurricanes and the Elderly Can this be prevented? Over 64% of Hurricane Katrina deaths were over 65 years old(even though they made up less than 12%of NOLA’s population).

20. Vulnerability • The concept of vulnerability in disaster research refers to certain subsets of the population that bear an undue burden of the disaster impact due to their lower socioeconomic status or preexisting health conditions. • The characteristics of a person or group and their situation that influence their capacity to anticipate, cope with, resist and recover from the impact of a natural hazard (an extreme natural event or process). It involves a combination of factors that determine the degree to which someone’s life, livelihood, property and other assets are put at risk by a discrete and identifiable event (or series or ‘cascade’ of such events) in nature and in society(Wisner et al. 2005: 11).

21. Disaster Cycle Kampur 2012 and FEMA, 2012

22. Disaster Preparedness as Risk Reduction • Disaster planning and mitigation save lives. • There is very little literature on disaster planning for people on ADRD and for their caregivers. • 57% of the general US population reported that they had absolutely no emergency preparedness plan. • (2007 FEMA Citizen Preparedness Review) • (Tengs et al. 1995)

23. Barriers to Disaster Preparedness • People may lack information about risk or how to prepare for it (access); • They may not understand the information or how to use it (comprehension); • They may not have the means to properly prepare (socio-economic factors); • They may not trust the people or entities that are providing them information about risk (risk perception). • (Sorensen and Vogt Sorensen 2007)

24. 10 Essential Public Health Services • Monitor health status to identify and solve community health problems. • Diagnose and investigate health problems and health hazards in the community. • Inform, educate, and empower people about health issues. • Mobilize community partnerships and action to identify and solve health problems. • Develop policies and plans that support individual and community health efforts. • Enforce laws and regulations that protect health and ensure safety. • Link people to needed personal health services and assure the provision of health care when otherwise unavailable. • Assure competent public and personal health care workforce. • Evaluate effectiveness, accessibility, and quality of personal and population-based health services. • Research for new insights and innovative solutions to health problems. Center for Disease Control (CDC)

25. Refer back to Special Needs Shelter Handouts • Is the information clear? • Would the “average person” be able to read it? • Average reading level in the US is 8th grade • Is this effective health communication?

26. Summary and Review • Activity: “Evaluating Disaster Preparedness Materials” • Risk, Vulnerability, & Public Health • Disaster Cycle • Disaster Preparedness as Risk Reduction • Barriers to Disaster Preparedness • Connections to the 10 Essential Public Health Services • Assignments and Next Week’s readings

27. Anthropology & Public Health Dementia Disaster Preparedness Risk Socio-economic Status Senility Personhood Alzheimer’s Disease Age Caregiving Hurricane Amnesia Risk Fatigue Vulnerability

28. Mixed Methods Iterative Approach 1) participant observation (10 months) 2) staff interviews (n=8) 3) caregiver interviews (n=5) 4) disaster plan review: 1st (n=290) 5) intervention 6) disaster plan review: 2nd (n=259) 7) caregiver survey (n=253) 8) final caregiver interviews (n=15: total =20) 9) disaster literacy testing (n=20) 10) final group interview with ACC administration (n=3)

29. Primary Goal of the Dissertation Research Explore the unique hurricane disaster planning needs for families caring for someone with Alzheimer’s disease or a related dementia. What issues do people with dementia and their caregivers face that other people do not?

30. Research Setting • “The Treasure Coast” • St. Lucie County • Martin County • Palm Beach County

31. Research Setting Hurricane Frances and Hurricane Jeanne in 2004. Lake Okeechobee area is the 2nd most vulnerable area to hurricanes in the US. (Leatherman and Defraene2007) 1928 Hurricane

32. Population • ~1000 families enrolled in Alzheimer’s Community Care (ACC) Services. • Most caregivers are female. • Gender can impact disaster planning and response • Tend to be more prepared than the general population. • Written disaster plans on file at ACC, higher reporting of disaster kits. • BUT, over 51% said would NOT evacuate, even if ordered to do so (higher than the general population, 11%).

33. Overview of Findings 1. Different stages of dementia require different disaster plans. 2. Special needs shelters frequently exclude people with dementia from services. 3. Structural inequalities and risk remain in the Lake Okeechobee Area.

34. 1. Different stages of dementia require different disaster plans It was very difficult, though, because [my husband] didn't want to go. I had to fight with him to get him out of the house. That was my big problem because I couldn't reason with him. He was totally resistant. At the hotel, he spent the whole time in the bed. Not happy… Both of those hurricanes made landfall just about ten miles from here. -Caregiver, Wife describing husband in stage 4-5 of Alzheimer’s Disease

35. Functional Assessment Staging (FAST) (Reisberg et al. 1988)

36. 1. Different stages of dementia require different disaster plans Now I think it is easier because, since she was diagnosed, we have found the right balance of medications and she is not as anxious as she used to be.Her disease has progressed so she is more forgetful. I think she would be OK if we had to evacuate. She will be confused maybe, but not resistive (sic). -Caregiver, Adult Daughter speculating on mother who is now in stage 6

37. Preliminary Suggestions • Caregiver Education • Specialized Disaster Kit as educational tool • Funded by Alzheimer’s Foundation of America • Behavior Management Techniques

38. 2. Special Needs Shelters • Run by county (regular shelters are run by American Red Cross) • Has physicians and nurses on staff • It has auxiliary electrical power, is wind resistant, and not flood-prone • “Last resort”

39. 2. Special Needs Shelters • Ambivalence and confusion about who should use them. • Confusion on the county levels about who is eligible. People with dementia are frequently excluded from these services. • Most caregivers do not know that they exist or that they are different from regular shelters, even after reading the informational pamphlet. • ACC staff unclear on who qualifies.

40. 2. Dementia and Special Needs Shelters: County Level Exclusion Alzheimer’s disease?? There was a police officer who was taking care of his mother who had Alzheimer’s disease and his aunt [who] had emphysema. They [the special needs shelter] took the aunt[with emphysema], but wouldn’t take his mother [with dementia]. What was he going to do? He had to work during the hurricane. -ACC Administrator

41. 2. Special Needs Shelters Explicit exclusion of people with dementia, as described in previous slides. Implicit exclusion of people with dementia, by not providing appropriate services: I cannot imagine any of my folks being in a special needs shelter. The special needs shelters up here are not dementia specific. It can be so crazy… -ACC Staff Member

42. Regular Shelter We went to a [regular] shelter located in a school. I thought, “oh my God!' It was totally unacceptable. There were kids running around. It was crowded. You had to bring your own bedding and I couldn't let him (the person with dementia) sleep on the floor. It was loud and chaotic. It just wasn't well organized at all. Also, they don't take pets and we have cats. We took one look at it and we realized it wouldn't work so we just turned around and came home. -Caregiver, Wife

43. Preliminary Suggestions • Counties need to be invested in the accommodation of dementia-specific care in special needs shelters.

44. 3. Lake Okeechobee Area Herbert Hoover Dike

45. 3. Lake Okeechobee Area This year, I will bring the insurance papers with me, I think. I used to put the papers up high, in case it flooded. But we don’t have hurricane shutters on these homes [HUD housing]. They tell us that if we want them, we need to pay for them. But it is government housing… a rental. How are we going to afford that? -Caregiver, Adult Daughter

46. Preliminary Suggestions • Federal government should provide hurricane shutters in hurricane prone areas to protect those who require HUD housing. • Protecting the integrity of the building. • Prevents theft after hurricanes. • Keeps people safe.

47. Summary of Conclusions Different stages of AD (or other progressive dementias) require different disaster planning and response techniques. Florida special needs shelters might exclude people with dementia from services. Historical, structural inequalities remain in the Lake Okeechobee area, making it vulnerable to hurricanes.

48. Questions

49. Caregiver Disaster Preparedness Tool Kit (Risk Reduction) Behavior management skills Specialized Disaster Kit Knowing your resources

50. Stress and Behavior Management Changes in the environment (putting up hurricane shutters or evacuating to an unfamiliar place) can be confusing and disruptive for people with dementia. You might see some stress-related behaviors that you might not normally see.