UNIVERSITY OF SASKATCHEWAN Saskatoon, Saskatchewan, Canada. usask

1. Utilizing Community Partnerships with a Rural and Remote Memory Clinic to Develop Assessment Instruments and Protocols Appropriate for Aboriginal Seniors Aboriginal Experiences in Aging Saskatoon, SK September 17-19, 2008 UNIVERSITY OF SASKATCHEWAN Saskatoon, Saskatchewan, Canada. www.usask.ca

2. Debra Morgan • Associate Professor, Canadian Centre for Health & Safety in Agriculture • Margaret Crossley • Associate Professor, Department of Psychology • Shawnda Lanting • Doctoral Student, Department of Psychology • Travel support: Northern Scientific Training Program, Northern Medical Services Rural and Remote Memory Clinic

3. Canadian Institutes of Health Research CIHR New Emerging Team (2003-2009) • Strategies to Improve the Care of Persons with Dementia in Rural and Remote Areas • Interdisciplinary research • Interprofessional training • Capacity development Rural and Remote Memory Clinic

4. CIHR New Emerging Team Co-Investigators Andrew Kirk, MD, FRCPC Professor & Head, Division of Neurology Department of Medicine Dorothy Forbes, PhD, RN Associate Professor, School of Nursing University of Western Ontario Lesley McBain, PhD Assistant Professor, First Nations University of Canada Sheri Harder, MD, FRCPC Associate Professor, Department of Medical Imaging Jenny Basran, MD, FRCPC Assistant Professor & Head, Department of Geriatrics Vanina Dal Bello-Haas, PhD, PT Associate Professor School of Physical Therapy Norma Stewart, PhD, RN Professor Associate Dean Graduate Studies & Research College of Nursing Margaret Crossley, PhD Associate Professor Director, Aging Research & Memory Clinic Department of Psychology Carl D’Arcy, PhD Professor & Director Applied Research/Psychiatry Jay Biem, MD, MSc, FRCP Lakeshore General Hospital, Montreal Rural and Remote Memory Clinic

5. Funding Partners: -CIHR Institute of Aging -CIHR Institute of Health Services & Policy Research -CIHR Rural & Northern Health Initiative -University of Saskatchewan -Saskatchewan Health Research Foundation -Alzheimer Society of Saskatchewan -Telehealth Saskatchewan (in-kind support) Rural and Remote Memory Clinic

6. Objectives of this presentation • To describe the development & implementation of a telehealth-supported interdisciplinary Rural and Remote Memory Clinic • To describe the community partnerships that were essential to the development of instruments and protocols for assessing cognitive impairment in Aboriginal seniors. Rural and Remote Memory Clinic

7. What is Dementia? • A progressive and typically irreversible loss of intellectual abilities, including memory, due to brain-based changes that are severe enough to interfere with daily functioning • Alzheimer’s disease is the most common form of dementia, accounting for up to 70% of all cases Rural and Remote Memory Clinic

8. What do we know? • seniors are over-represented in rural areas • 22% of towns vs. 15 % of cities • 47% of seniors live in rural areas with moderate to no metropolitan influence • Estimated prevalence of dementia in SK is 18,000 and growing • Limited access to specialized dementia care services in rural and remote areas Rural and Remote Memory Clinic

9. http://www.hc-sc.gc.ca/seniors-aines/pubs/fpt_docs/fed_paper/index_e.htmhttp://www.hc-sc.gc.ca/seniors-aines/pubs/fpt_docs/fed_paper/index_e.htm Rural and Remote Memory Clinic

10. Prevalence of Dementia (Percentage) in Canada by Age Group CSHA. 1994 Rural and Remote Memory Clinic

11. “It was like climbing a mountain to get a diagnosis” “Strategy for AD and Related Dementias in Saskatchewan” (2004), focus group comment. Rural and Remote Memory Clinic

12. Importance of Early Diagnosis • Reduced stress and burden to patient and family/caregivers • Treatment initiated early; implications for quality of life & cost to healthcare system • Decision making and planning for the future, prevent crisis events Rural and Remote Memory Clinic

13. Rural & Remote Memory Clinic • Research goals: • Development & evaluation of streamlined, integrated, 1-stop clinic for assessment, differential diagnosis, and management of early stage dementia • Evaluation of telehealth delivery format • One focus is on Aboriginal seniors Rural and Remote Memory Clinic

14. Importance of Investigating Dementia in Aboriginal Seniors • Aboriginal persons (First Nations, Inuit, Metis) make up approximately 4% of Canadian population • 13% of population in Saskatchewan is Aboriginal • Aboriginal seniors are one of the most rapidly growing demographic group in Canada • Little research has been conducted regarding dementia in Aboriginal seniors Rural and Remote Memory Clinic

15. Barriers for Aboriginal and other Remote or Minority Culture Seniors • Language and cultural differences • Extremely high cost of travel • Lack of awareness of dementia as an illness • Assessment protocols have been developed with majority culture adults Rural and Remote Memory Clinic

16. Telehealth Sites in Saskatchewan (September 2008) Eligible patients must live >100 kms. from a tertiary care centre

17. 1 8 11 32 33 21 11 15 2 33 3 15 3 Rural and Remote Memory Clinic

18. NET Telehealth Community Visits Prior to Clinic Implementation:

19. Northern Communities Visited in Year 1 La Ronge Pinehouse Lake Pelican Narrows Ile a la Crosse Beauval La Loche

22. REFERRAL Rural and Remote Memory Clinic

23. CONTACT Rural and Remote Memory Clinic

24. INITIAL TELEHEALTH VISIT Rural and Remote Memory Clinic

25. CLINIC DAY Rural and Remote Memory Clinic

26. RRMC Clinic Day Assessment Interprofessional clinical interview with patient and family Assessment by: Neuropsychology Nursing Neurology Physical Therapy Geriatric Medicine Neuroradiology (Brain Imaging) End-of-day Team Conference and Teaching Rounds

27. CLINIC DAY Interprofessional Clinical Interview Rural and Remote Memory Clinic

28. CLINIC DAY Physical Therapy Assessment Rural and Remote Memory Clinic

29. CLINIC DAY CT scan Rural and Remote Memory Clinic

30. CLINIC DAY Neuropsychological Assessment Rural and Remote Memory Clinic

31. The challenge for clinical neuropsychology was to prepare a test battery for the RRMC that was… • Brief enough to accommodate the time constraints of an IP same-day clinic • Sensitive to early-stage dementia • Adequate for differential diagnosis • Appropriate for cross-cultural assessment of rural and remote residents Rural and Remote Memory Clinic

32. Interdisciplinary research combining methods from neuropsychology, human geography, and cultural anthropology 1. Focus groups with Aboriginal seniors at the Saskatoon Community clinic 2. Travel to Northern communities for consultation, and protocol and test development Rural and Remote Memory Clinic

33. Rural and Remote Memory Clinic

37. Community Screening Interview for Dementia (CSI’D) • Cross-cultural instrument provides an alternate assessment protocol for patients from non-majority cultures including non-English speaking patients • Modified in consultation with the Aboriginal grandmothers & northern healthcare providers • Hall et al., 1993 Rural and Remote Memory Clinic

38. Original Buschke Cued Recall Test Rural and Remote Memory Clinic

39. Pictorial Prairie Buschke Rural and Remote Memory Clinic

40. National Geographic Magazine

41. “Grasshoppers & Geese” • Modification of Pyramids and Palm Trees based on harmonization approach • Culturally and geographically appropriate for older adults residing in rural and remote areas • Some examples….. Rural and Remote Memory Clinic

43. Rural and Remote Memory Clinic

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48. What we’ve learned so far about our modified assessment protocols • Modified neuropsychological tests (e.g., Grasshoppers and Geese) are extremely well received by all patients in our clinic • The modified screening protocols (CSI’D) still require some adjustment and ongoing work with our northern healthcare partners to ensure acceptability and sensitivity Rural and Remote Memory Clinic

49. What we’ve learned so far about our Interprofessional Clinic Model • Satisfaction ratings are high for telehealth and the streamlined 1-stop clinic model despite ongoing challenges related to cost and time of travel for remote northern patients and their families • We strongly promote this model of care for use with other chronic health concerns regardless of place of residence Rural and Remote Memory Clinic

50. Thank-you Rural and Remote Memory Clinic