Bringing the latest on dementia to Metro Vancouver communities
Reprinted from the "Immigrants and Refugees" issue of Visions Journal, 2010, 6 (3), p. 20
Patients with chronic diseases who are engaged in their own self-care (i.e., taking an active role in managing one’s own health) can live longer, healthier lives. However, barriers exist for those within non-English speaking communities in BC and Canada who wish to practise self-care. For example, self-care resources may not reflect the culture of the community, and there is limited access to resources, including reputable web resources, in one’s own language.
About the UBC Faculty of Medicine eHealth Strategy Office
The eHealth Strategy Office explores how information and communication technologies like cell phones and the Internet can support health care. New technologies have the potential to innovate how health education, research and practice occur.
Since 2007, the eHealth Strategy Office (eHealth) at the University of BC’s Faculty of Medicine (see text box) has presented five public education forums. These interactive forums are offered through an eHealth community education outreach program called InterCultural Online Health Network (iCON). iCON promotes communication between community members and health professionals in the Metro Vancouver area through culturally relevant, patient-centred health education. In addition to the health forums, iCON hosts culturally relevant, interactive websites and provides patient-friendly pamphlets.
Forum topics to date include diabetes, healthy heart and liver disease for Chinese-speaking communities, and dementia for Chinese- and Punjabi-speaking communities. There has been an overwhelming response, with forum attendance ranging from 700 to 1,400 people per session.
Recently, iCON hosted a public forum called Getting to Know Dementia—for the Chinese-speaking community (Vancouver, October 2008, 700 participants) and the Punjabi-speaking community (Surrey, March 2009, 750 participants). These forums were offered as part of a project called Supporting Patients and Their Families in the Evidence-Based Management of Dementia: A Multicultural and Multimedia Approach, funded by an Alzheimer Society of BC grant.
Health providers who were also members of each community co-developed content for the forums with the assistance of an advisory committee to ensure cultural relevance. For example, case studies highlighting aspects of the “dementia journey” were collaboratively crafted with community members to ensure authenticity.
Where to Access iCON Resources
Promotion of the events via community media (radio, newspapers), posters and word of mouth ensured high turnouts at the events. Audience members at the forums were roughly one-third people living with dementia, one-third caregivers including family members, and one-third people interested in learning more to stay healthy.
Community members listened to doctors, pharmacists, a dietitian and a caregiver/caseworker discuss dementia management, treatment and support. A host of other community supports—Fraser Health Osteoporosis, Fraser Health Falls Prevention, BC Transplant, Progressive Intercultural Community Services, Canada Safeway Pharmacy and Alzheimer Society of BC, for example—set up booths to share information about their services.
For the Chinese forum, speakers presented in either Cantonese or Mandarin and a live interpreter provided translation for the audience. For the Punjabi forum, most of the speakers presented in Punjabi, with an interpreter to translate for one speaker who presented in English.
During the breaks, medical student volunteers circulated among the audience and collected people’s questions for the panelists on index cards. The medical students were from the different communities, spoke the languages and were interested in learning how best to serve members of their own communities. Over 400 questions were collected from the audience at the forums. Questions from both communities ranged from issues related to prevention to diagnosis and treatment. Nutrition and lifestyle issues ranked high among the queries, with an emphasis on how to access relevant resources. The panelists answered some of the questions live during the forum, and answers to the remaining questions were posted on companion websites in the appropriate language (see sidebar).
What Is Dementia?
Dementia affects how you learn new information, how you remember information and how you think and is the result of changes in the structure of your brain. Many seniors, their friends and their family worry about getting dementia or Alzheimer’s disease. Dementia is not a normal part of aging, and not all seniors will develop dementia. Not all dementias are the same and not everyone with dementia acts the same way. In fact, many different diseases or conditions can lead to different forms of dementia. Some are reversible while others get worse over time. Alzheimer’s disease is the most common dementia.1
About half a million Canadians currently live with dementia; the rates for the Chinese- and Punjabi-speaking populations echo that of the general population. Dementia affects:
Working to meet patient and caregiver needs
Surveys done during the forums indicate that participants have the desire to learn more about prevention and symptoms of dementia. They also want to learn more about prevention as well as management of the disease for themselves and to help family members care for themselves. Participants indicated that they try to make healthy choices, but need culturally relevant resources available in their own language.
In response, eHealth has developed both print and web-based resource materials in Chinese and Punjabi, as well as English. The process of developing these culturally relevant resources on dementia involved extensive consultation with community-based health professionals and organizations.
Over 14,000 visitors have viewed the web materials to date, and over 1,500 printed information booklets have been requested by health professionals for their patients. The clearest marker of success is the communities’ ongoing requests for more public events.
About the author
Helen Novak Lauscher, PhD, Elizabeth Stacey, MA, and Kendall Ho, MD FRCPC, on behalf of the InterCultural Online Health Network (iCON) team at the eHealth Strategy Office, UBC Faculty of Medicine
Helen is Assistant Director of Research at the eHealth Strategy Office. She leads an interdisciplinary team that explores technology and public engagement in health. Her PhD research explored youth empowerment through creative expression and media production
Elizabeth is a Research Coordinator at the UBC eHealth Strategy Office and an instructor with the College of the Rockies in southeastern BC. She applies her background in First Nations linguistics to helping communities develop culturally relevant health education
Kendall is Director, eHealth Strategy Office and Associate Professor, UBC Department of Emergency Medicine. His interests include translating medical knowledge into routine health practices, and exploring how health consumers, professionals and policy-makers can use information technologies to improve health services
BC Partners for Mental Health and Addictions Information. (n.d.). Learn about…Alzheimer’s disease [fact sheet]. Vancouver: Author. www.heretohelp.bc.ca/sites/default/files/images/Alzheimers.pdf.
Alzheimer Society of Canada. (2010). Rising tide: The impact of dementia on Canadian society. Toronto: Author. www.alzheimer.ca/english/rising_tide/rising_tide_report.htm.