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

Rural and Remote Memory Clinic  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 Canadian Institutes of Health Research CIHR New Emerging Team ( )  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 CIHR New Emerging Team Co-Investigators 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 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

Rural and Remote Memory Clinic 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 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 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 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

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

Rural and Remote Memory Clinic “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 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 Rural & Remote Memory Clinic Research goals: 1)Development & evaluation of streamlined, integrated, 1-stop clinic for assessment, differential diagnosis, and management of early stage dementia 2)Evaluation of telehealth delivery format 3)One focus is on Aboriginal seniors

Rural and Remote Memory Clinic 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 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

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

Rural and Remote Memory Clinic

NET Telehealth Community Visits Prior to Clinic Implementation:

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

Rural and Remote Memory Clinic REFERRAL

CONTACT

INITIAL TELEHEALTH VISIT

Rural and Remote Memory Clinic CLINIC DAY

RRMC Clinic Day Assessment 1. Interprofessional clinical interview with patient and family 2. Assessment by: 1. Neuropsychology 2. Nursing 3. Neurology 4. Physical Therapy 5. Geriatric Medicine 6. Neuroradiology (Brain Imaging) 3. End-of-day Team Conference and Teaching Rounds

Rural and Remote Memory Clinic CLINIC DAY Interprofessional Clinical Interview

Rural and Remote Memory Clinic CLINIC DAY Physical Therapy Assessment

Rural and Remote Memory Clinic CLINIC DAY CT scan

Rural and Remote Memory Clinic CLINIC DAY Neuropsychological Assessment

Rural and Remote Memory Clinic The challenge for clinical neuropsychology was to prepare a test battery for the RRMC that was… 1. Brief enough to accommodate the time constraints of an IP same-day clinic 2. Sensitive to early-stage dementia 3. Adequate for differential diagnosis 4. Appropriate for cross-cultural assessment of rural and remote residents

Rural and Remote Memory Clinic 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

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 Original Buschke Cued Recall Test

Rural and Remote Memory Clinic Pictorial Prairie Buschke

National Geographic Magazine

Rural and Remote Memory Clinic “Grasshoppers & Geese” “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

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 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 Thank-you