Health Conditions: Adult Children with Disabilities
Planned Lifetime Advocacy Network (PLAN) www.plan.ca toll-free 1-888-696-PLAN. This family-led organization was founded to secure the future for people with disabilities. PLAN’s mission is to help families secure the future for their relative with a disability and to provide peace of mind. They help families build personal support networks for disabled adult children, networks that will endure after the parents are gone…and more.
Health Conditions: ALS
ALS Society of British Columbia: 604-278-2257. They offer a Care Connection program to aid your own group of caring family and friends to help their loved ones with ALS and their caregivers. Tasks that families need help with may include: walking the dog, cooking a meal, providing companionship or transportation, and other daily caregiver activities. By using a specially customized online web tool developed through a partnership between the ALS Society of BC and Lotsa Helping Hands, it is easier to stay in touch and let family and friends know what you need. One person is trained as the coordinator and organizes the Care Connection group. This person is usually close to, but not a member of, the immediate family. The primary purpose of a Care Connection is to lessen heavy caregiver responsibilities and reduce any worry the person with ALS has about his or her caregiver. By caring for the caregiver, the person with ALS is helped as well. Inner feelings of caregivers have shown to be the biggest factor in determining their quality of life and their effectiveness in coping with ALS, so there is a free ALS Psychological Support Program. Each autumn there is a Caregiver Day that offers a day of respite to carers of ALS patients.
Health Conditions: Brain Injury
BC Brain Injury Association: 604-984-1212. This is a non-profit serving those with acquired brain injuries, offering information and support as well as a free quarterly newsletter. Find a list of more than 40 groups across BC to helps those with ABI.
Health Conditions: Cancer
BC Cancer Agency Caregivers offers links to many websites that specialize in information for those caring for someone with cancer. The list is compiled by BC Cancer Agency librarians.
Canadian Cancer Society 604-253-8470 has a free Cancer Information and Support Line 1-888-939-3333 for those with cancer and their caregivers.
InspireHealth Supportive Cancer Care. If you are providing care to someone living with cancer, InspireHealth offers free programs and services that can help you as a carer find simple and practical steps to support their health. InspireHealth integrates cancer patients and their friends, family and/or caregivers in its care model. Their program, partially funded by the Ministry of Health, begins with a short education session that explains their integrative cancer care model which serves to complement – not replace – standard cancer treatments. Cancer patients work with their team of medical doctors, exercise therapists, clinical counsellors and nutritionists to optimize health and well-being. InspireHealth has three centres, serving: Lower Mainland, 604-734-7125; Southern Interior, 250.861.7125; Vancouver Island and the Gulf Islands 250.595.7125 Their virtual centre also has a great deal of information and ability to connect with you electronically across BC, so that no one with cancer or caring for someone with cancer needs to be left out.
Health Conditions: Chronic Disease Management
This section was adapted from the “United Way Metro Vancouver Family & Friends Caregivers Information and Resource Handbook 2016/17” with permission from the author.
Self-Management BC – Chronic Disease Self-Management Programs is a Ministry of Health, Patients as Partners Initiative administered by the University of Victoria.
Lower Mainland: 604-940-1273; toll-free: 1-866-902-3767
Programs are for persons with chronic health conditions (e.g. arthritis, cancer, heart disease, hypertension, lung disease, stroke) and family members can participate in free, self-management programs, electronically or in person led by a trained facilitator. These are evidence-based programs which provide information, teach practical skills and give people the confidence to manage their health condition(s). Note that medical professionals are not involved in any of these programs; rather, the expertise acquired by living with the various chronic health conditions provides the basis for sharing information and teaching practical skills among participants. Discuss the programs with your doctor. These programs are organized by the University of Victoria – Centre on Aging, and offered across BC:
- Chronic Disease Self-Management Program
- Online Chronic Disease Self-Management Program accessible to those with all levels of computer experience.
- Chronic Pain Self-Management Program
- Diabetes Self-Management Program
- Arthritis/Fibromyalgia Self-Management Program
- Cancer: Surviving and Thriving
Some programs are offered in Chinese and Punjabi. For locations and dates of workshops visit the website or phone.
Health Conditions: Dementia
(Includes Alzheimer’s Disease, Fronto-temporal dementia including Pick’s disease and frontal lobe dementia, Lewy body disease, Multi-infarct/Vascular Dementia)
Dementia is an umbrella term which describes a serious irreversible progressive deterioration in brain mental functions such as memory, language, orientation, abstract thinking, and judgment. It is referred to as a cluster of symptoms or a syndrome, marked by gradual deterioration and it gets worse over time. Dementia is not a ‘normal’ part of the aging process, it is not ‘universal’ – not everyone who ages develops dementia. A variety of diseases cause dementia: some are listed in the title; other types include dementias related to illnesses such as Down’s syndrome, HIV-related dementia, Huntington’s disease, and Parkinson’s disease (dementia may develop late in the course of PD).
Alzheimer Society of B.C. helps with information from getting a diagnosis, how to communicate with people with dementia, medications that might help, legal issues, setting priorities, and understanding the stages of Alzheimer’s, which is a long lasting progressive disease. Contact the First Link® Dementia Helpline, Mon. – Fri., 9am – 4pm: Lower Mainland: 604-681-8651, Province-wide: 1-800-936-6033. They also offer many programs including caregiver Support Groups throughout BC, the five-session Family Caregiver Series where you can learn about dementia, practical coping strategies and early planning and Alzheimer Resource Centres.
As explained by ASBC, symptoms of dementia diseases can be similar to symptoms of other conditions such as depression, thyroid or heart disease, infections, drug interactions or alcohol abuse. Finding out the cause of the symptoms can help you: understand the source of the symptoms, get the proper care, treatment, and support, and plan for the future. The earlier a treatment can be given, the better the result, and new treatments are on the way. It’s vital not to react to signs of dementia with ‘it’s just old age’, thinking nothing can be done. Help begins with a diagnosis.
If the physician of the person you care for has difficulty diagnosing dementia, Specialty Seniors Health Clinics in BC are another way to get a comprehensive assessment of cognitive health. These clinics specialize in assessing a number of health problems related to aging – not just dementia. Speak with the doctor to see if a referral to one of these clinics might be in order.
The Clinic for Alzheimer Disease and Related Disorders at UBC Hospital 604-822-7031 sees seniors from all over BC. The Clinic provides assessment and diagnosis of Alzheimer disease and related disorders for patients including care and support for the affected individual and his or her family by team members from geriatrics, neuropsychology, neurology, social work, geriatric psychiatry, genetic counselling, and neuropathology. Patients can only be referred to the clinic by their family physician or other medical specialists. The appointment wait list is five – six months – as of January 2017.
Caregivers of individuals with dementia report that the challenges are not just the illness itself, but tied to the ambiguity and uncertainty it causes. It is difficult to care for someone who is here, but not here—here physically, but to differing degrees, gone mentally and psychologically. Carers feel alone, and in some ways, they are. For many caregivers, it’s as if there’s a stranger in the house. Adding to the stress, is the unpredictable nature of memory loss that comes and goes—one moment here, the next moment gone. This roller coaster of absence and presence is a very stressful kind of loss—what author Pauline Boss calls ‘ambiguous loss’. Unlike death, there is no closure. Read more about Caregiving and Ambiguous Loss [From US Family Caregiver Alliance website].
BC Geriatric Eldercare Consultant and author Peter Silin reminds us of how we can unintentionally depersonalize people living with dementia in his newsletter article “Don’t Bury the Living: Dementia and Dignity”. It reminds us that we need to examine our assumptions about the abilities of those with dementia and focus on what they can do – not just what they can’t do. Read the April 2014 article. A second important article by Silin explains the complex ways in which dementia affects the brain and warns against being taken in by products we are told ‘improve memory’ which we think will help with dementia
Sign up for the free Diamond Geriatrics newsletter (scroll to the very bottom of the page for the subscribe form).
WorkSafeBC (the Workers’ Compensation Board) booklet “Dementia: Understand Risks and Preventing Violence” is a booklet for health care workers who work to minimize violence by those with dementia. It contains some good tips.
OTHER LANGUAGES Alzheimer Society of B.C. has a Chinese Resource Centres 604-687-8299 in Vancouver and Richmond to speak in Chinese. Alzheimer Society Canada offers information in Chinese, Farsi, French, Japanese, Korean, and Punjabi. Alzheimer’s Disease International can connect you to information in 50 languages.
Health Conditions: Disabilities
Disability Alliance BC (formerly BC Coalition of People With Disabilities – BCCPD): 604-875-0188; Toll-free 1-800-663-1278; TTY line (hearing impaired only) 604-875-8835.
They offer advocacy, assistance with forms, the Equipment and Assistive Devices Initiative, is finding ways to connect people with disabilities with supports they need for living independently; Information & Referral, multilingual publications, Transitions magazine, and more.
Health Conditions: Heart and Stroke
Heart and Stroke Foundation 778-372-8002. Read A Guide for Stroke Caregivers. Living with Stroke is a support and educational program for stroke survivors and their caregivers to gain confidence managing the challenges of living with stroke. The 7-week program develops new skills and helps gain confidence in your ability to control your life. Program topics include: Understanding stroke, Physical changes, and challenges, Swallowing and nutrition, Cognition, perception and communication, Emotions: Focusing on depression, Activities and relationships, Reducing the risk of stroke, and Moving forward.
Find multicultural materials in Chinese, French and Punjabi, as well as culturally sensitive resources for the First Nations, Inuit, and Métis people.
Stroke Recovery Association of BC: 604-688-3603. Use their caregiver resources page.
Stroke Recovery Association of BC support groups across the province include family caregivers.
Health Conditions: Mental Health
Anxiety BC Anxiety disorders are the most common mental health illness in Canada. Anxiety BC provides my anxiety plans (MAPs) to help you understand and manage anxiety, and offers educational videos, a MindShift app and information in:
British Columbia Schizophrenia Society Looking for local support? Call 1-888-888-0029 toll-free anywhere in BC, or 604-270-7841 in the lower mainland. This non-profit works to improve the quality of life for those affected by schizophrenia and psychosis – including Family & Friend Caregivers – through education, support, public policy and research. They are Family Centred – providing education and caring support for families affected by serious mental illness. Family Support Groups exist across BC, including a Chinese speaking one in Richmond, BC. The family unit is their first responsibility and primary focus; the person with the illness is always included in the definition of family. Check out one of the society’s 30 branches.
Canadian Mental Health Association – British Columbia Division 604-688-3234 lower mainland, or toll-free 1-800-555-8222 informs about mental health issues and connects sufferers with resources to assist – including family caregivers. Programs include Information & Referral (I&R); Bounce Back: Reclaim your healthTM: an evidence-based program designed to help adults experiencing symptoms of mild to moderate depression, low mood, or stress, with or without anxiety. The program offers two forms of help: DVD and workbook-based telephone coaching. It’s available in English and Chinese. Living Life to the Full course: a skill-based course that helps adults get the most out of life. It will enable you to broaden and refine your resources for tackling everyday problems and help you learn how to enhance your coping skills when dealing with life’s ups and downs so that you feel happier and more in control of your life; Mental Health First Aid course: a course offering skills to provide people developing a mental health problem or experiencing a mental health crisis. Mental Health First Aid is given until appropriate treatment is found or until the crisis is resolved. The program aims to improve mental health literacy and provide the skills and knowledge to help people better manage potential or developing mental health problems in themselves, a family member, a friend or a colleague.
“Community Supports for Families Supporting a Loved One Living with Mental Illness and/or Addiction – Counselling, Support Groups, and Education” (December 2013) lists community services, support groups, counselling options, and other education resources, and includes contact information, email addresses, and web links. Google the title to obtain a copy. The pdf booklet is a publication of Vancouver Coastal Health but contains some information of help to anyone in BC.
Depression This section was adapted from the “United Way Metro Vancouver Family & Friends Caregivers Information and Resource Handbook 2016/17” with permission from the author, Katherine Willett.
Depression is a serious illness that steals joy from life and at its worst, leads to suicidal thoughts and actions. It is not a sign of weakness or personal defect. This term is used when feelings of unexplained intense sadness last for at least 2 weeks and when the symptoms such as sadness, negativity, loss of interest, pleasure and/or decline in functioning are of such intensity that they are out of the ordinary for that individual. It is much more than sadness. The exact diagnostic label is major depressive disorder.
While many older people are at risk of depression, remember that depression is NOT a normal part of aging, and like any health issue should be brought to the attention of a physician. Depression is treatable and treatment of late-life depression has benefits that extend to the family members on whom care recipients depend, i.e. the family caregivers.
“12 Depression Busters for Seniors” offers more insight and tips on depression and the elderly.
Did you know that family caregivers are at more than double the risk of depression compared to the general population? The U.S. Family Caregiver Alliance notes: “Caregiving does not cause depression, nor will everyone who provides care experience the negative feelings that go with depression. But in an effort to provide the best possible care for a family member or friend, caregivers often sacrifice their own physical and emotional needs and the emotional and physical experiences involved with providing care can strain even the most capable person. The resulting feelings of anger, anxiety, sadness, isolation, exhaustion—and then guilt for having these feelings—can exact a heavy toll. Unfortunately, feelings of depression are often seen as a sign of weakness rather than a sign that something is out of balance. Comments such as “snap out of it” or “it’s all in your head” are not helpful, and reflect a belief that mental health concerns are not real. Ignoring or denying your feelings will not make them go away.”
Antidepressant medications (approved by a medical practitioner), counselling, and exercise are cited as three good strategies used for managing depression.
Here To Help is a project of the BC Partners for Mental Health and Addictions Information. It is a group of seven leading mental health and addictions non-profit agencies (those agencies are listed separately on this website), working together to help people live well and better prevent and manage mental health and substance use problems. “A Toolkit For Families” is a comprehensive resource for Families and Friends caring for someone with a mental or substance use disorder. It explains that “when a family member suffers from a mental illness, one of the most important things to do is to take the time to learn about the disorder. By educating yourself as much as you can about the mental or substance use disorder, you can take an active role in your family member’s recovery. HereToHelp offers a great deal of mental health and addictions information in
Mental Health Act The “Guide to the Mental Health Act” provides information about BC’s Mental Health Act (the Act). The Mental Health Act has significant implications for those whose lives it touches — those who receive involuntary treatment under the Act, their families, the public and those who use the Act. The Guide has two purposes: • making the Act more understandable, and promoting consistency in interpreting the Act so people who need involuntary psychiatric treatment receive help in a responsible and lawful manner. Get the guide.
“Mental Health Caregiver Guide: A Guide for Caregivers of Persons Living with Mental Illness or Experiencing Mental Health Challenges” (2016) guide is divided into two main sections: Caring for YOU and Caring for the Individual. Google the title for a copy.
Mood Disorders Association of BC (MDABC): 604-873-0103 this non-profit provides support and education in English, Cantonese, Mandarin and Punjabi for those living with a mood disorder or other mental illness. MDABC recognizes that mental illness can be as challenging for family members as it is for the person experiencing mental health symptoms, so they offer a support group for caregivers in Vancouver and on the North Shore. It is vital that family members take the time to learn how to best help someone experiencing mental health issues too, not only ensure that the support they provide is more beneficial to the person receiving it but also to be able to maintain their own health. MDABC, with BC Partners for Mental Health and Addictions, have a 91-page resource manual, Family Self-Care and Recovery From Mental Illness, which offers a wealth of practical guidance for families dealing with mental illness. There is also an information manual available in Punjabi.
Heath Conditions: Multiple Sclerosis (MS)
Health Conditions: Pain
Pain BC is a BC non-profit seeking to improve the lives of people in pain through education, empowerment, and innovation. They offer a comprehensive information website, and you can get their free newsletter.
Health Conditions: Parkinson’s Disease
Parkinson Society British Columbia 604-662-3240. PSBC offers education materials, support groups, and care partners education events for family caregivers.