Caregiving can be a positive experience, but without proper support the stress associated with caregiving responsibilities can compromise the well-being of both the caregiver and the care recipient.
What does it mean to be a caregiver?
Carers (also called family caregivers or natural supporters) are those in the circle of care, including family members and other significant people who provide unpaid support to a person in need. In 2018 it was estimated that 7.8 million Canadians (1 in 4) provide some level of care to a family member or friend with a chronic mental or physical illness or disability (Statistic Canada, 2018). Carers provided 5.7 billion hours of unpaid care, and the annual economic value of family care was $97.1 billion. Moreover, carers’ contribution to the economy represented 4.2% of Gross Domestic Product, and 32.2% of national expenditures on health care.
The degree of the unpaid carer’s involvement can vary over time and, depending on the availability of external resources, on the needs of the care recipient and on the caregiver themself (their needs and own capacity to help). Some care recipients may require assistance with only a few tasks, while others with more pronounced impairments may require continuous care and supervision for most or all activities of daily living. For example, the intensity of caring for elderly parents is often lower than caring for an ill child or spouse (Statistics Canada, 2012). Care needs can also fluctuate over time. Some conditions are time-limited and happen later in life (e.g., Alzheimer’s) while others can be life-long (e.g., mental illness, children with developmental challenges).
You may be caring for a loved one who has reduced physical, mental, emotional, social and/or cognitive ability due to age, accident, physical and/or serious mental illness. Although most caregivers report providing care for one individual at a time, it is not uncommon to care for multiple friends or family members. More than 1 in 5 (22%) Canadians reported more than one family member with a mental health problem in 2012 (Pearson, 2015).
As a carer, you may be expected to execute a variety of tasks such as:
- Transportation and/or running errands
- Feeding and/or preparing meals
- Clothing, bathing/grooming
- Managing toileting/Incontinence
- Transferring/lifting
- Managing difficult behaviours
- Administering medication, assisting with medical treatments/therapies
- Liaising with health providers
- Assisting with indoor/outdoor property maintenance and household chores
- Providing emotional support and coping strategies
- Socialization
- Monitoring safety of loved one
- Monitoring comfort of others
These tasks may present themselves uniquely or jointly, and each has unique impact on your stress.
What are the causes and symptoms of caregiver stress?
As you provide care, you may experience symptoms of stress. If not properly addressed, stress may become chronic. This is especially true for long-term caregiving, such as for children with developmental disabilities or chronic illness, or for loved ones of any age with serious mental or chronic physical illness. The unpredictability of certain conditions can have a strong impact on the experience of stress; caregivers are not always able to control or predict the challenges associated with their caregiving responsibilities. This can be especially difficult for carers who do not adapt easily to unexpected situations.
Stress related to caregiving can be direct or indirect. It can result from the number, duration and intensity of the tasks associated with caregiving, as well as the loss or grief that are often associated with having a family member or friend with a chronic mental or physical illness or disability. Stress can also be associated with financial strain due to work disruption or costly treatment, conflicts in interpersonal relationships, poor health, and compromised social relationships. Indirect stress is important but may not be easily recognized at the outset of a caregiving cycle.
It is estimated that 6.1 million carers are juggling work and caregiving responsibilities. Fifty-percent of carers are between the ages of 45-65, their peak earning years (Statistics Canada, 2013). You may experience disruptions in work, such as unpaid time away or temporary absence from your career. Of growing interest are Young Carers – children and youth under the age of 25 who provide care and support to family members living with a chronic illness, disability, mental health or substance use issue and/or problems related to old age. While little research is presently available in Canada, there is evidence to the growing prevalence of caring at a young age and to the “young carer penalty” associated with it (Stamatopoulos, 2018)
In certain caregiving situations, the illness or disability may impact the carer’s own physical or mental health as well as their emotional stability. Many caregivers report they neglect their own health, such as booking personal health appointments, skipping meals or eating a poor diet, not getting enough sleep, smoking, abusing substances, and not tending to psychological or emotional distress. Furthermore, caregivers who are older, are of lower socioeconomic status, or have limited support networks appear to be at higher risk.
Other symptoms of caregiver stress may include:
- Depression, anxiety, and/or irritability
- Trouble concentrating
- Disturbed sleep
- Feeling exhausted despite adequate rest
- A weakened immune system
- Loss of interest in personal needs, desires, and pastimes
- Increased feeling of resentment towards the care recipient and/or family/friends
- Loss in satisfaction of being a caregiver
- Feeling helpless, hopeless and isolated
Each of these factors, individually and collectively, can have a significant impact on the stress experienced by the caregiver.
However, caregiving can be a satisfying experience and most caregivers report some positive outcomes for both the family and themselves (National Opinion Research Center, 2014). This includes stronger bonds and commitments, resourcefulness, pride and satisfaction, as well as growth and adaptation. Additionally, caregivers report a stronger sense of purpose in life, increased tolerance, empathy and compassion. Providing caregivers with information and support can help to enhance the positive aspects of caregiving experience and to reduce the stress associated with it
How can I reduce my caregiving stress?
Counselling, therapy, mindful meditation, yoga, journaling, and/or having a pet, are some ways that can reduce caregiver stress.
Communicate your concerns and needs with others. Consider seeking out local organizations, support groups, and associations that assist with caregiving. They may be able to connect you with resources, allowing you to share responsibilities. Meeting with other caregivers with similar situations may help to break isolation and share difficult experiences. Social media platforms can be an important way to connect with others, especially when the caregiver cannot get out of the house or is isolated.
By sharing your concerns and needs you are less likely to feel that you are isolated in providing care. This will give you an opportunity to assess your emotional wellness. It will also give you an opportunity to assess how you feel concerning your caregiving responsibilities. While under certain circumstances you have no choice but to fulfil your caregiving responsibilities, you may like to learn that it is okay to say “no” when you are feeling overwhelmed. Accept that your feelings and needs are legitimate; they affect your health and your ability to provide needed care.
Ask for and accept help from family or friends. If help is not actively offered, talk with family or friends who would be able to help. You may find it less stressful if a few people participate in dedicated responsibilities. It is important to share responsibilities when other people are involved in caregiving. This ensures that everyone involved feels comfortable and competent to carry their responsibilities.
Be mindful of your physical and mental health. Keep up with personal health appointments, eat a balanced diet, and ensure that you are getting enough sleep. It is recommended to set aside at least 30 minutes four times a week for exercise. It is important to take a break from your responsibilities to reduce physical and mental exhaustion. Arrange some time each week to socialise or engage in hobbies/leisure activities. Focus on the things that are within your control and approach your responsibilities with a positive and self-compassionate attitude. Self-compassion and positive thinking have been found to be effective defenses against chronic stress and burnout.
How can psychologists help with caregiver stress?
Caregivers are often engaged with many healthcare providers, including physicians, psychologists, nurses, physiotherapists, social workers and home support workers, among others. They can also help with stress reduction strategies.
A psychologist can assist you in the process of recognizing the loss and grief that are often associated with caregiving. Proactive stress reduction is important so that you can sustain your own well-being and better fulfill your caregiving duties. This, along with support and education about your loved one’s illness and its course can ease some of the negative consequences of caregiving.
Therapy can also help you find positive aspects of caregiving, both for the family and for yourself. At times in caregiving, some difficult relationship dynamics can develop. A psychologist can assist carers and the person needing care to have conversations that lead to greater understanding and awareness of both people’s needs, thus reducing stress.
You may benefit from psychotherapy such as cognitive behavioural therapy (CBT), interpersonal therapy, or psychodynamic therapy. All forms of psychotherapy allow you to deal with your stress, concerns, worries and other symptoms with a therapist, in a secure environment.
- In CBT, your therapist will guide you through thoughts and behaviours that are self-defeating and pose a negative influence on your life. The goal of CBT is to provide you with the skills to challenge these negative thoughts and maladaptive behaviours, and cope with negative emotions. By minimizing the influence of negative thoughts, behaviours and emotions, you will be able to develop a balanced perspective on the events that occur every day in your life and surrounding environment.
- Through interpersonal therapy, you will learn to self-evaluate any challenges that you may have in communicating your needs with others. The goal is to improve communication skills so that your intentions are understood, and your needs are met. This can help reduce certain burdening feelings associated with caregiving. It will also help to strengthen your relationships with family, friends, the care recipient and any supporting resources that can assist you with caregiving.
- Through psychodynamic therapy, you can uncover unconscious feelings that are negatively influencing your mood and attitude. The goal of this therapy is to allow you to recognize, understand, and manage these unconscious feelings. This therapy has been found to be less effective than CBT and Interpersonal therapy in treating caregiver stress and depression.
Some carers experience symptoms severe enough to consider medication. Selective serotonin reuptake inhibitors (SSRIs) are the preferred antidepressant for treating depression resulting from caregiver stress. SSRIs influence the balance of serotonin in the brain, which helps with mood regulation; common side effects of SSRIs include agitation, dry mouth, drowsiness, nausea, and dizziness to name a few. Medication prescribed by a physician may be combined with any of the psychotherapies mentioned and a combined approach is most effective.
Where can I get more information?
The Canadian Mental Health Association – provides helpful information and resources to people caring for a loved one with a mental illness:
https://cmha.ca/mental-health/finding-help/family-caregiver-support
The Canadian Home Care Association – provides helpful information and resources for caregivers:
http://www.cdnhomecare.ca/content.php?doc=223
American Psychological Association (APA) – provides helpful information and resources for caregivers:
http://www.apa.org/search.aspx?query=caregiver
http://www.apa.org/search.aspx?query=caregiving
Provincial associations of psychology – provides access to information from psychological associations for each province or territory:
http://www.cpa.ca/public/whatisapsychologist/PTassociations
You can consult with a registered psychologist to find out if psychological interventions might be of help to you. Provincial, territorial, and some municipal associations of psychology often maintain referral services. For the names and coordinates of provincial and territorial associations of psychology, please visit:
https://cpa.ca/public/whatisapsychologist/ptassociations/
References
Statistics Canada’s 2018 General Social Survey, which was conducted with respondents aged 15+ living in the ten Canadian provinces. The conservatively estimated monetary value of unpaid care work is calculated using the generalist replacement cost method. Aggregated annual hours of unpaid care work in seven different care tasks were multiplied by the national median hourly cost of hiring home support workers at $17 per hour to replace family caregivers’ care work. (https://www.jobbank.gc.ca/wagereport/occupation/20667)
Pearson, C. (October, 2015). “The Impact of Mental Health Problems on Family Members,” Health at a Glance, Statistics Canada catalogue no. 82-624-x, http://www.statcan.gc.ca/pub/82-624-x/2015001/article/14214-eng.pdf.
Hollander, M. J., Lui, G., Chapell, N. L. (2009). Who Cares and How Much? The Imputed Economic Contribution to the Canadian Healthcare System of Middle-Aged and Older Unpaid Caregivers Providing Care to The Elderly, Law & Governance, 12(2): 42-49 /a
Stamatopoulos, V. (2018) https://yorkspace.library.yorku.ca/xmlui/handle/10315/37847
Stamatopoulos, V. (2018) The young carer penalty: Exploring the costs of caregiving among a sample of Canadian youth, Child & Youth Services, 39:2-3, 180-205, DOI: 10.1080/0145935X.2018.1491303
National Opinion Research Center. (May, 2014). Long term care in America: Expectations and realities. Retrieved from https://www.longtermcarepoll.org/report-long-term-care-in-america-expectations-and-reality/
Portrait of caregivers, 2012 – Statistics Canada. https://www150.statcan.gc.ca/n1/pub/89-652-x/89-652-x2013001-eng.htm
Turcotte, M. (2013). Family caregiving: What are the consequences? Ottawa: Statistics Canada. Retrieved from: http://www.statcan.gc.ca/pub/75-006-x/2013001/article/11858-eng.pdf
This fact sheet has been prepared for the Canadian Psychological Association by Ella Amir, AMI-Quebec and Anna Beth Doyle, Concordia University.
Date: May 2022
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