If you’re in immediate danger, call 911. If someone is experiencing a mental health crisis but is not in immediate danger, call 780-342-7777 for the Community Urgent Services Team (CUST). They will assess the situation and may dispatch medical and/or police personnel.
Resources for Families
Several support and education groups for families meet in the Edmonton area, and there are also online programs you can participate in. Here’s a list of groups we’re familiar with. We strive to keep this updated but programs are subject to change, so always check with the hosting organization to see if the information is current. If you know of other groups or see anything that needs updating, please let us know.
More books and videos are added from time to time. If you know of any others that could be added, please let us know.
Free programs, no pre-registration required
FAMI-Alberta monthly meetings Held the second Tuesday of each month, these meetings are a combination of information/education, planning, and sharing experiences with others who understand. Meetings are open to any family member or other caregiver of an adult living with mental illness, and are generally held at the CMHA-ER office, 3rd floor, 10010 105 Street in downtown Edmonton from 6:30 to 8:30 pm. If you want to attend, check the most recent newsletter on our newsletter archive page, or contact us to confirm the time and location.
Connecting by Choice (Access Open Minds)
Education support group for parents, family members and friends who are supporting a loved one with mental health and/or addiction concerns. Held every Wednesday, 6:30-8:00 pm at the Bill Rees YMCA, 10211-105 St (1st floor) Edmonton. Drop-in, no cost, refreshments provided. For more information call 780-415-0048.
Caregiver Connections (Canadian Mental Health Association – Edmonton Region)
A free drop-in support group to help caregivers and parents master the skills and feelings involved in the unique challenge of supporting a child, youth or young adult with mental illness. Held Thursday evenings 6:30 to 8:00 pm at CMHA Transition Place, #300, 10010 105 Street, Edmonton. Call 780-414-6300 or email firstname.lastname@example.org.
Family & Caregiver Support Group (Schizophrenia Society of Alberta)
Generally held the first Thursday of the month at 7 pm and third Thursday at 1 pm at the Edmonton branch office, 5215-87 Street. Call 780-452-4661 to confirm or get more information.
Note: Program dates and details may change, so always check with the hosting organization before you go. The information presented here is for the Edmonton area; many organizations also hold sessions in other Alberta locations – contact them for details.
Generally held weekly for 8 – 10 weeks and usually require pre-registration.
Strengthening Families Together (Schizophrenia Society of Alberta)
This 10 session program is run by local SSA branches and brings together families to learn vital information about their loved one’s illness and develop methods for coping. Call 780-452-4661 or email email@example.com for the next start date. There’s also an online version if that suits you better.
Family Connections (The Sashbear Foundation)
Family Connections™ is an evidence-based 12-week group that meets weekly to provide education, skills training, and support for people who are in a relationship with someone who has emotion dysregulation or related problems. Focusing on issues that are specific to emotion dysregulation, it’s hosted in a community setting and led by trained group leaders who are usually family members of relatives with emotion dysregulation.
Generally free, but pre-registration is required. Usually there’s a facilitator or speaker, and participants can ask questions through a chat window
Online Family Support Group (Schizophrenia Society of Alberta)
Generally held once or twice per month starting at 6:00 pm; check the SSA website, call 403-327-4305 or email firstname.lastname@example.org for information on the current schedule.
Online Educational Speakers Forum (Schizophrenia Society of Alberta)
Generally held once per month starting at 6:00 pm; check the SSA website, call 403-327-4305 or email email@example.com for information on the current schedule.
Meet the Scientist Webinar Series hosted by the Brain & Behavior Research Foundation on the second Tuesday of each month from noon to 1:00 pm Mountain Time. Hear leading mental health researchers present the latest in new technologies, early intervention strategies and next-generation therapies for mental illness.
Family Toolkit – from BC Partners for Mental Health and Addictions Information.
The Family Toolkit was designed to assist families in caring for a family member with a mental illness by providing information and practical resources.
Download the entire toolkit (PDF; 1.9 MB) or individual modules:
Schizophrenia: The Journey to Recovery – A Consumer and Family Guide to Assessment and Treatment by the Schizophrenia Society of Canada. Note: this national resource is over ten years old; some services may no longer be available or may not exist in every jurisdiction.
Direct download link (629 kB)
Dealing with Cognitive Dysfunction (pdf)
by the New York State Office of Mental Health
A handbook for families and friends of individuals with psychiatric disorders that’s full of useful advice. You can view an online version here.
Schizophrenia – from the US National Institute of Mental Health
A 20-page booklet that discusses the positive, negative and cognitive symptoms of this serious illness.
An interactive PDF meant to provide guidance and advice to carers of those living with schizophrenia, helping them to navigate the struggles they may face.
These books are the ones most recommended by families:
This book examines the traditional and current pathology-oriented medical model within which all of our services are built, and how that model prevents the transformation we need if we want to really change our system. It presents a new way to think about what it means to be client-centered – not only at an individual level, but also at the level of system design and operation. It is based on compelling principles and a real success story – a program in Nova Scotia that transformed its way of providing service, according to a new way of defining and understanding what it means to be client-centered. This program significantly improved quickness and ease of access for clients, and also enhanced its capacity to prevent addictions and mental illness.
It’s difficult to talk to a loved one who doesn’t recognize their mental illness. Many mental illnesses are accompanied by Anosognosia – the inability to recognize their illness. This book explains the LEAP approach (Listen, Empathize, Agree, Partner) to get them to a point where they’re able to accept help. You can download portions of the book dealing with LEAP here.
Surviving Schizophrenia, 6th Edition: A Family Manual
by E. Fuller Torrey
This is an invaluable book for understanding Schizophrenia, its symptoms, effects and prognosis. It also explains what is known and not known about this illness, and presents the most recent theories about its cause.
Bitter Medicine: A Graphic Memoir of Mental Illness
by Clem Martini (author) and Olivier Martini (artist)
In 1976, Ben Martini was diagnosed with schizophrenia. A decade later, his brother Olivier was told he had the same disease. For the past thirty years the Martini family has struggled to comprehend and cope with a devastating illness, frustrated by a health care system lacking in resources and empathy, the imperfect science of medication, and the strain of mental illness on familial relationships. In Bitter Medicine, Olivier’s poignant graphic narrative runs alongside and communicates with a written account of the past three decades by his younger brother, award-winning author and playwright Clem Martini. The Martini family lives in the Calgary area.
This memoir by Canadian Susan Inman describes her family’s nine year journey to help her younger daughter recover from a catastrophic schizoaffective disorder. This is a good read that fits the Canadian context.
An extensive list of other useful books can be found here.
I’m Not Sick, I Don’t Need Help! (18 minutes)
Dr. Xavier Amador had a life-altering experience when his older brother was diagnosed with schizophrenia. As a result, he developed a new way to approach patients previously thought to be in denial.This TEDx Talk from October 2017 summarizes current understanding of Anosognosia (a symptom of some mental illnesses, NOT denial) and how to deal with it successfully. A must-see for family members and medical staff.
A legal scholar, in 2007 Saks came forward with her story of schizophrenia, controlled by drugs and therapy but ever-present. In this powerful talk, she asks us to see people with mental illness clearly, honestly and compassionately.
Today, thanks to better early detection, there are 63% fewer deaths from heart disease than there were just a few decades ago. Could we do the same for depression and schizophrenia? The first step in this new avenue of research, says Thomas Insel, director of the (U.S.) National Institute of Mental Health, is a crucial reframing: for us to stop thinking about “mental disorders” and start understanding them as “brain disorders.”
Living with Schizophrenia (25 minutes)
From Dr. Xavier Amador’s LEAP Institute, this uplifting video shows interviews with patients living with schizophrenia, and mental health professionals who treat them. It shows how people diagnosed with schizophrenia can live normal lives.
A YouTube channel with a series of short videos by Lauren, an Albertan living with schizophrenia/schizoaffective disorder. These videos are intended to be a resource for people with the diagnosis, their loved ones, and for people who just want to learn more about the illness.
My Story with Schizophrenia (5 minutes)
A personal story from a young person with Schizophrenia – moving and realistic.
I Am Not A Monster: Schizophrenia (15 minutes)
While pursuing a major in Astronomy & Astrophysics at Pennsylvania State University, Cecilia McGough experienced a psychotic episode and was eventually diagnosed with Schizophrenia. In this powerful and hope-filled TEDx talk, she discusses her experience and how it led her to establish the organization Students with Schizophrenia.
A film about the compassionate approach to relating with voices, with potential for use as a therapeutic, educational, and de-stigmatising tool.
We’ll post information here about promising practices from other jurisdictions, which are worth investigating to see if they could be applied here. If you have any suggestions for other practices worth noting, please let us know.
Mental Health Ambulance – Stockholm Sweden
Stockholm debuted the world’s first ambulance dedicated solely to mental health services in March 2015.
The Psychiatric Emergency Response Team was introduced as a way to prevent the 1,500 suicides and 15,000 suicide attempts that occur in Sweden annually. Inside the ambulance is a warm, inviting area equipped with comfortable seats instead of medical equipment. It’s staffed by two mental health nurses and one paramedic.
PAM responds to over 130 calls a month in Stockholm, most of them relating to suicide risk.
Family Support Services -Fraser Health, BC
This health district has a whole department dedicated to helping families of those with mental health and substance use conditions. Recognizing that “supportive family members are essential to a person’s recovery from mental illness and substance use problems,” Fraser Health offers education, support, respite and navigation assistance programs, as well as offering education programs to clinicians to help them include families when treating their loved ones.
Legislation Supporting Family Caregivers
Ontario’s Change Foundation advocates for legislation, policies and programs to support family caregivers. Through a review of existing legislation, policies, and programs designed to support family caregivers, they developed a paper that compares legislation supporting caregivers and related policies in Canadian provinces and a number of international jurisdictions such as the United States, the United Kingdom, Australia, and New Zealand. The international jurisdictions were chosen based on their notable initiatives to support family caregivers.
Download the paper here.
Improving Access and Coordination of Mental Health and Addiction Services in Manitoba
A May 2018 report on Manitoba’s mental health and addictions services made 130 recommendations, including Recommendation 2.4 (found on page 224), which encourages government to “design and implement a provincial program for facilitating consent to share information with family members and other loved ones, including education and training of… workers to allay fears about PHIA (Manitoba’s Personal Health Information Act).” More information available here.
B.C. Psychosocial Rehabilitation Advanced Practice
Psychosocial rehabilitation promotes personal recovery, successful community integration and satisfactory quality of life for persons who have a mental illness or mental health concern. Psychosocial rehabilitation services and supports focus on helping individuals develop skills and access resources needed to increase their capacity to be successful and satisfied in the living, working, learning and social environments of their choice and include a wide continuum of services and supports. Because of their demonstrated effectiveness and recovery orientation, these approaches should be widely available to people living with long term mental illness and/or substance use problems.
United Kingdom Care Act 2014
The Care Act brings those funding their own care into the care system with obligations on local authorities relating to information and advice, universal services, assessments and market shaping among others all applying to self-funders. It also sets out a new model of paying for care, putting in place a cap on the care costs which an individual is liable for. Importantly, the Act strengthens the rights and recognition of carers in the social care system, including, for the first time giving carers a clear right to receive services. These are by far the strongest rights for carers yet.
Download the Key Provisions for Carers document here.
The Problem with the Solution – Podcast
This episode of the Invisibilia podcast takes a deeper look at the unique approach to mental health care in Geel, Belgium. It raises thought-provoking questions about how we view mental illness as a problem to be solved, how the medical jargon and approach loses sight of individuals as persons, and whether or not families are helpful to someone recovering from mental illness. Listen to the episode here (jump to 6:00 minutes).
Best Advice Guide on Recovery-Oriented Mental Health and Addiction Care in the Patient’s Medical Home
Many family doctors aren’t equipped to deal with mental illness, and may not be aware of local resources or how to communicate appropriately with a patient living with mental illness. Developed in consultation with physicians and people with lived experience, the Best Advice Guide is a compendium of practical and easy-to-implement strategies and tools. It includes simple yet powerful tips on how to open the door to important conversations on mental health – from using non-stigmatizing language, to displaying signage in support of mental wellness, to incorporating at least one question in every patient visit that elicits a response about emotional health.
This group in Richmond Hill Ontario came about when parents of adult children living with a serious mental illness joined to form Family Advocates for Mental Health. Their current focus is on supporting families with a member affected by serious mental illness. They practice a family-centered model of care that involves the individual with the illness and the family caregiver. Appropriate family-inclusive supportive housing based upon the needs of the individual with the illness is a long term goal.
The following words and phrases are described in simplified terms to assist families in understanding mental illness and navigating the system. For the exact medical or legal definition, refer to the source material (e.g., Mental Health Act, DSM, etc.).
Anosognosia: when someone is unaware of their own mental health condition or can’t perceive their condition accurately. Anosognosia is a common symptom of certain mental illnesses, perhaps the most difficult to understand for those who have never experienced it. It’s different from denial (refusal to admit a problem); it’s an actual inability to recognize it. This video offers an explanation of Anosognosia.
Caregiver: Anyone who assists a family member or friend with challenges resulting from illness, disability or aging. This is distinct from a care provider, who is paid to provide assistance.
Formal Patient Certification: Also known as involuntary or certified. Someone with a mental disorder and who fits the criteria under the Mental Health Act to be detained in a facility. Requires two admission certificates by doctors. This flow chart summarizes the certification process. Note: this is different from being deemed incompetent.
Incompetence: Someone who is deemed incompetent to make decisions regarding their treatment (such as medication). A physician must complete a Certificate of Incompetence to Make Treatment Decisions (Form 11) and the patient has the right to appeal to a review panel. This flow chart summarizes the process.
Serious Mental Illness (SMI): a term that has replaced chronic mental illness, recognizing that (with treatment) the illness may not always be disabling. Definitions vary, but in general a serious mental illness among people ages 18 and older is defined as having, at any time during the past year, a diagnosable mental, behavior, or emotional disorder that causes serious functional impairment that substantially interferes with or limits one or more major life activities (such as maintaining interpersonal relationships, activities of daily living, self-care, employment, and recreation). SMIs include schizophrenia, schizoaffective disorder, psychotic disorders, major depressive disorders, bipolar disorders, and borderline personality disorder. See https://www.samhsa.gov/disorders or download this document for more information.