1. Satisfaction with Telehealth in a Rural and Remote Memory Clinic Alzheimer Disease International March 26-29, 2011 Toronto, ON Debra Morgan, Allison Cammer, Joseph Wickenhauser, Sheena Walls-Ingram

2. 2003-2009 CIHR New Emerging Team (NET) Strategies to Improve the Care of Persons with Dementia in Rural and Remote Areas 2009-2014 CIHR-SHRF Applied Chair in Health Services and Policy Research Healthcare Delivery Across the Continuum for Rural and Remote Seniors with Dementia FUNDING PARTNERS

3. What do we know? Rising Tide Report (Alzheimer Canada 2010): in the next 30 years in Canada: Incidence will increase from 103,000 to 257,000 cases/yr Prevalence will increase from 500,000 to 1.1 million Cost of care will increase from $15 billion/yr to $153 billion/yr seniors are over-represented in rural areas … but limited access to specialized dementia care services in rural and remote areas

5. “It was like climbing a mountain to get a diagnosis” “Strategy for AD and Related Dementias in Saskatchewan” (2004), comment from family caregiver focus group during consultation. Timely diagnosis identified as key issue Early diagnosis alleviates stress, facilitates appropriate treatment planning, and allows individuals with dementia & families to plan

6. A coordinated, interdisciplinary research program aimed at: 1.Improving the availability of specialized personnel and services providing assessment and management of dementia, 2.Improving the accessibility of programs supporting formal and informal caregivers of persons with dementia, and 3.Improving the acceptability of services for persons with dementia and their caregivers NET Project Goals

7. The Rural & Remote Memory Clinic Team Debra Morgan, Andrew Kirk, Margaret Crossley, Vanina Dal Bello-Haas, Jenny Basran, Norma Stewart, Carl D’Arcy, Dorothy Forbes, Jay Biem, Lesley McBain, Megan O’Connell Nursing Neurology Neuropsychology Physical Therapy Geriatric Medicine Sociology Geography

8. Rural and Remote Memory Clinic Research goals: Development & evaluation of integrated 1-stop clinic for assessment, differential diagnosis, and management of early stage dementia Evaluation of telehealth videoconference delivery format

9. Definition of Telehealth “… the use of advanced telecommunication technologies to exchange health information and provide health care services across geographic, time, social, and cultural barriers (Reid, 1996, definition used by Telehealth Saskatchewan)

10. Telehealth Saskatchewan Network Rural and Remote Memory Clinic: Eligible patients must live >100 kms. from a tertiary care centre 104 endpoints 52 communities 71 facilities 5 first nation sites

11. Pre-Clinic Telehealth Assessment 30-minute session a few weeks prior to full-day assessment in Saskatoon with nurse and neuropsychologist

12. RRMC Clinic Day Assessment Interprofessional clinical interview Assessment by: Neuropsychology Nursing Neurology Physical Therapy Neuroradiology (Brain Imaging) End of day team conference and feedback

13. Follow-up 6 Weeks 12 Weeks 6 Months 12 Months Yearly With Neurologist In-Person with interdisciplinary team

14. Data Sources to Evaluate Telehealth Delivery 1. Questionnaires completed by patients and family members 1. 12-item Telehealth Satisfaction Scale 2. Ratings of Satisfaction and Convenience of Telehealth and In- Person follow-up appointments 2. Telephone interviews with patients and family re: telehealth appointments 3. Questionnaires completed by telehealth coordinators at rural/remote locations 4. Observations made during weekly telehealth clinics at the host site and a rural facility

15. Demographics of individuals seen in clinic to date (N = 273) Mean Age = 72.1 yrs Range Age = 41 – 92 yrs Gender: 40% Males 60% Females

16. Clinical Diagnoses to Date Alzheimer Disease Other dementias: Vascular Dementia with Lewy Bodies Frontal Temporal Alcohol-Related Mixed Dementia Other diagnoses: Mild Cognitive Impairment Depression Vitamin B12 Deficiency no dementia

17. What have we learned so far? 12-item Telehealth Satisfaction Summary scores: 42 (possible range 12 to 48) Rating of Telehealth vs. In-Person Follow-up Satisfaction: No difference Convenience: Telehealth significantly more convenient Predictors of discontinuing follow-up: Lower Telehealth Satisfaction Score Greater distance to travel to telehealth (> 100 kms) Older age (>80 years) Lower caregiver burden at clinic day Strong endorsement of telehealth… BUT we don’t understand patient and caregiver experiences and how we can improve them.

18. Telehealth Satisfaction Interviews Aim: to learn more about patient and caregiver experiences with telehealth, pros and cons, how it can be improved Theoretical Sampling: Originally sampled patient/caregivers who had alternated TH-IP and completed 1 year follow-up Currently sampling patient/caregivers who have had at least 2 TH appointments, with last appointment within last 4 months Semi-structured interview guide Telephone interviews Digitally recorded & transcribed Thematic analysis

19. Participants (n = 21 to date) Wife of patient (n = 8) Husband of patient (n = 5) Female patient (n = 4) Daughter of patient (n = 2) Female patient & husband (n = 1) Male patient (n = 1)

20. Travel Distances (Round Trip) N = 273 Mean distance to Telehealth = 77 km (48 miles) Mean distance to Saskatoon = 519 km (322 miles) Mean distance saved by Telehealth = 442 km (275 miles)

21. Family/Client Satisfaction with Telehealth Would you use Telehealth again? Yes: 100% Would you recommend Telehealth to another person? Yes: 98%

22. Overall high satisfaction with TH “I think it [TH] is better, you feel more open… it’s more relaxing. There’s not as many people around” “It [TH] is as good as visit” “I wish that there were other aspects of the health- care system that would use it too” All satisfied with voice & visual quality

23. Convenience is main factor (cost, time, stress of travel) “It saves us a trip in, the price of fuel now a days. But it went well, it’s just like being with the doctor there” “There’s not as much time and travel involved. So in organizing things at home and getting to appointments, and organizing work… it [TH] is certainly more helpful that way” “It’s not very easy [to travel] because I don’t drive in the city, and [patient] doesn’t have a license anymore, and usually my daughter has to take time off work to take us in”

24. Face-to-face may be ideal, BUT… “If it wasn’t a 3-hour drive both ways, in-person [would be preferable], but it [TH] is a very satisfactory alternative” “I suppose if I was in Saskatoon, in-person would be the way to go, but because we are not, it [TH] was good. I mean it saved us a lot of running, traveling” “For us it’s three hours one way… so it generally means an overnight stay… which is something that we would be willing and anxious to do every, say, third visit, but the TH fills in the gap there quite nicely”

25. Trade-offs “Certainly for the kind of memory testing things that the Dr. does on an ongoing basis, it (TH) works very well… but given that, there’s something still missing, a little bit… being in the personal space of somebody else, like that kind of thing--like the eye- to-eye contact and just in the same location” “It’s hard talking to a camera… You are able to express your thoughts a little bit more clearly and concisely and articulately when you’ve got a real person on the other side of the table… as opposed to a television, you know, you’re talking to a thing”

26. Combination of IP and TH works well “I think the combination works well.. It’s helpful to actually go down to Saskatoon and meet face-to- face… as well as for those appointments that maybe aren’t quite as long– to be able to do that through telehealth here” “I think that to see the people, at first anyway, and then go into the telehealth” “I don’t have a problem with TH, it’s just that I think that probably once a year… I think it should be an office visit where you can do some hands on” “I would like to see a rotation, say we have two TH appointments and then one follow-up right in Saskatoon”

27. TH good for follow-up but not initial in-depth assessment “The assessment is better person-to-person, face-to- face. Following the patient then [TH] has a definite place” “[TH] is not as extensive as when you meet people in their office and talk to them face-to-face. It’s just different” “I don’t think there is any way you could do the full assessment over TH… one doesn’t replace the other”

28. Confounding of appointment type & delivery format “There’s a lot more in-depth [in-person]… the telehealth interviews were not that in-depth. They just asked me if I noticed any changes or anything” “Naturally they don’t find out as much [on TH]” “TH is certainly beneficial but… it’s always just one person… we don’t get to touch base with the entire team”

29. Factors Influencing Satisfaction Age and health of patient and caregiver Ease of traveling to Saskatoon Distance saved by TH Frequency of appointments Type, length, & purpose of appointment “For any appointment after the initial assessment I think it [TH] is very good” “It was acceptable I thought, if it was just a matter of like checking in to make sure you are okay kind of thing”

30. Factors Influencing Satisfaction Presence of family members in Saskatoon Comfort with technology “Dealing with the camera—I know it made my mom nervous… she was just a little intimidated maybe… a little hesitant about dealing in front of the camera, the anonymity of it” “They [parents] don’t do so well with telehealth, they find it a little odd I think talking to the camera. And they don’t tend to say much” “To me, seeing your doctor is a personal experience… there is a human aspect that you can’t replace”

31. Factors Influencing Satisfaction with Telehealth Follow-up Appointments Some remote TH rooms large, impersonal Some caregivers would like time alone with Dr. A few caregivers reported being uncomfortable with the telehealth coordinators attending; others found it reassuring Some caregivers reported that the patient was the focus and were reluctant to bring up their concerns. Some participants felt pressure to respond quickly on TH or that they had less input/ control into the session.

32. Conclusions Most patients and caregivers were satisfied with telehealth Telehealth is working for the purpose we planned There are things we can do to better prepare patients and families The growth in number of TH sites is positive Interviews are providing information we can use to improve the telehealth service Qualitative component complements quantitative

33. Next steps and future research Next steps: continue interviews and theoretical sampling, including those who discontinued, explore patient perspectives, evaluate pre-clinic telehealth assessment The clinic neuropsychologists have implemented and evaluated a telehealth support group for spouses of RRMC patients diagnosed with frontotemporal dementia The clinic physical therapist is evaluating the feasibility of offering a telehealth-delivered exercise intervention for RRMC patients A doctoral student in psychology is planning to evaluate delivery of cognitive rehabilitation via telehealth

34. References Morgan, D., Crossley, M., Kirk, A., D’Arcy, C., Stewart, N., Biem, J., Forbes, D., Harder, S., Basran, J., Dal Bello-Haas, V., & McBain, L. (2009). improving access to dementia care: development and evaluation of a rural and remote memory clinic. Aging & Mental Health, 13(1), 17-30. Morgan, D., Crossley, M., Kirk, A., McBain, L., Stewart, N., D’Arcy, C., Forbes, D., Harder, S., Dal Bello-Haas, V., & Basran, J. (in press). Evaluation of telehealth for pre-clinic assessment and follow-up in an interprofessional rural and remote memory clinic. Journal of Applied Gerontology. Available at On-Line First, doi:10.1177/0733464810366564, http://jag.sagepub.com/ McEachern, W., Kirk, A., Morgan, D., Crossley, M., & Henry, C. (2008). Utility of telehealth in following cognition in memory clinic patients from rural and remote areas. Canadian Journal of Neurological Sciences, 35, 643-646.

35. To see a short film about the RRMC, go to the Canadian Dementia Knowledge Translation Network website www.lifeandminds.ca

36. Thank-you