DISCOVERY TOOLKIT FOR Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes Jasneet Parmar, MBBS Editor and Project Lead University of Alberta and Covenant Health DECEMBER 2015 ABOUT THIS TOOLKIT FUNDING This toolkit is for healthcare providers This toolkit was funded by a grant from the Northern Alberta Academic Family Physicians and various stakeholders who support (Department of Family Medicine, University of Alberta). family caregivers. The toolkit contains The conference, Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes, tools for learning and discussion: held in April 2014 was funded by the Canadian Institutes of Health Research, with financial summaries, slide presentations, contributions from Covenant Health, Alberta Health Services – Seniors Strategic Clinical Network, handouts, and suggested resources. Alberta Caregivers Association, and Alzheimer Society of Alberta and Northwest Territories. The tools are based on the The views expressed herein do not necessarily represent the views of the funders. proceedings and products of a conference entitled Supporting Family Caregivers of Seniors: Improving Care SUGGESTED CITATION and Caregiver Outcomes (hereafter Parmar J, editor. Discovery toolkit for supporting family caregivers of seniors: improving care and referred to as Caregiver Conference) caregiver outcomes. Edmonton: 2015. that was held in April 2014. However, this is not an all-encompassing COPYRIGHT resource on supporting family This toolkit may be reproduced and distributed for individual use, provided the original work is caregivers. Rather, we hope this toolkit properly cited. The photos are under copyright licence and should not be used apart from the toolkit. would be used to initiate discussion and learning. Whether you are a family caregiver, a healthcare professional, DISCLAIMER a healthcare professional-in-training, The opinions expressed in the toolkit are those of the authors and do not necessarily reflect the a researcher or a policy-maker, our opinions or positions of Covenant Health or the University of Alberta. The editor, authors, and project hope is that you use this information team assume no responsibility or liability for damages arising from any error or omission or from the in whatever manner may advance use of any information or advice contained herein. the knowledge, understanding, programming and supports in the area of caregiver support. CONTACT DETAILS Jasneet Parmar, MBBS, Dip COE The toolkit consists of 5 Parts, Editor and Project Lead, Discovery Toolkit for Supporting Family Caregivers of Seniors reflecting the main themes of the Associate Professor, Division of Care of the Elderly, Department of Family Medicine, University of Alberta Caregiver Conference. Each part Medical Director, Network of Excellence in Seniors’ Health and Wellness, Covenant Health contains freestanding sections that 1100 Youville Drive West, DC 405, Edmonton, Alberta T6L 0A3 Canada could be used to suit your needs. You [email protected] may reproduce any part of the toolkit www.covenanthealth.ca/innovations/seniors-network-of-excellence provided it is properly referenced. For easy referencing, each section has a suggested citation listed at the end. ABBREVIATIONS However, please don’t use the photos AHS Alberta Health Services apart from the toolkit because these CH Covenant Health are under copyright licence. CIHR Canadian Institutes of Health Research NESHW Network of Excellence in Seniors' Health and Wellness Certain sections recur in the toolkit. NWT Northwest Territories Key Learnings summarizes the ideas SCN Strategic Clinical Network generated from the discussions. UofA University of Alberta Evidence Summary provides an UofC University of Calgary overview of the published literature. WHO World Health Organization Experts’ Notes show excerpts of slide presentations from conference guest speakers. ACKNOWLEDGEMENT Caregiver Study Group This toolkit contains hyperlinks and This group applied for the CIHR Conference Grant and organized the conference Supporting Family is best accessed electronically rather Caregivers: Improving Care and Caregiver Outcomes. See back cover for a complete list. than through the print version. It Yvonne Roberts, Program Assistant, NESHW, Covenant Health is available online for viewing or download at: Laurie Wear, Administrative Assistant, Edmonton Zone Medical Staff Association https://www.dropbox.com/s/ Darlene Blischuk, Assistant rrlxb340fyp91gi/Toolkit.pdf?dl=0 Department of Family Medicine, Univ. of Alberta Lee Green, MD, MPH, Chair, Department of Family Medicine, Division of Care of the Elderly Collaborators Network of Excellence in Seniors’ Health and Wellness (NESHW), Covenant Health Covenant Health Research Centre Alberta Health Services – Seniors Health SCN Alzheimer Society – Alberta and NWT Alberta Caregiver Association 2 | DISCOVERY TOOLKIT FOREWORD It has been a 23-year-long road of discovery that has brought me to the point of finally recognizing the value of family caregivers. I believe I know a fair bit now though there is much more for me to learn. What took so long? I often wonder if the culture of our health system with its focus primarily on the patient was the reason. I remember saying many a time to a family caregiver, that “I am sorry but I am not your doctor; she or he is my patient; I am here to address my patient’s needs”. Could it be the policies and regulations that prevent us from engaging family caregivers as true partners-in-care and decision- making? Maybe it was my own cultural bias that expects families to care and provide for the elders. Perhaps the recognition comes from having become a caregiver to my frail older parents and in-laws. Today, I feel at peace at having made this discovery and pledge to dedicate the rest of my career in supporting them and probably volunteering post-retirement. I am very grateful to all the seniors, family caregivers, staff and colleagues that have been on this journey and enabled and empowered me. There is much to do….we will do it together. Jasneet Parmar, MBBS Editor and Project Lead, Discovery Toolkit for Supporting Family Caregivers of Seniors Medical Director, Network of Excellence in Seniors’ Health and Wellness (NESHW) Covenant Health MESSAGES This toolkit is the product of The mission of the Alberta Seniors many committed and passionate Health Strategic Clinical Network individuals. Credit belongs in part is to enable Alberta’s seniors to the keynote speakers at our to optimize their health, well- “Supporting Family Caregivers of being, and independence. To Seniors” conference last year, whose achieve this we are engaging with key learnings are presented here. seniors, their family caregivers But this wasn’t simply a gathering and other stakeholders to make of clinicians, researchers and improvements to health care academics engaged in a one-way services and practices. transfer of ideas; rather a dialogue Family caregivers are an integral among caregivers themselves, of part of the healthcare system, which many of us self-identified. and as the Canadian population Gordon Self, DMin One memory that stands out was Jayna Holroyd-Leduc, ages their role will become even Vice-President, Mission, just how many participants publicly MD, FRCPC more important. Family caregivers Ethics and Spirituality acknowledged that they, too, were Associate Professor, require support to deal with the Covenant Health caregivers. Thus, the information University of Calgary physical, emotional, and financial in this toolkit is truly personal, and Immediate Past Scientific costs of care giving. informed, and appreciative of the Director, Seniors Health incredible contribution caregivers Strategic Clinical Network, We are pleased to be working of seniors with complex needs offer. Alberta Health Services with various stakeholders Presenter after presenter emphasized from across Canada and the need for practical support to internationally to advance the those who dedicate their efforts, research, education, and supports often at great personal sacrifice, to necessary to enable family support a loved one. In humility, caregivers to provide care to we offer this toolkit as a practical seniors, while optimizing their resource to support caregivers, as own health and quality of life. well, to say thank you. DISCOVERY TOOLKIT | 3 SECTION AUTHORS Suzette Brémault-Phillips, OT, PhD Norah Keating, PhD, FCAHS Assistant Professor, Occupational Therapy, University of Alberta Professor, Department of Human Ecology; Co-Director of Research on Chair, Behavioural Supports Alberta, Edmonton, Alberta Aging, Policies & Practice, University of Alberta, Edmonton, Alberta Lesley Charles, MBChB, CCFP Emmy and Henry Mah Associate Professor, Family Medicine; Director, Care of the Elderly Caregiver and Patient, Edmonton, Alberta Diploma Program, University of Alberta, Edmonton, Alberta Anna Mann Tarun Dua, MD, MPH Executive Director, Alberta Caregivers Association, Edmonton, Alberta Medical Officer, World Health Organization – Programme for Neurological Diseases and Neuroscience, Geneva Jacqueline McMillan, MD Resident, Department of Internal Medicine Wendy Duggleby, PhD University of Calgary, Calgary, Edmonton Professor and Endowed Nursing Research Chair in Aging and Quality of Life, Faculty of Nursing University of Alberta, Edmonton, Alberta Kala Mehta, DSc, MPH Consultant, Stanford Geriatric Education Center; Faculty, Division of Dolores Gallagher-Thompson, PhD, ABPP Geriatrics