The five dimensions of caregiving
We’ve divided the topic into five key dimensions as a starting point to help you understand and explore caregiving in greater depth.
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The five dimensions of caregiving
What is caregiving?
How can we define caregiving? How can we find common ground in an experience shared by so many from such an array of backgrounds and situations? Which terms are best suited to designate this complex reality?
The views on what caregiving “is” are varied and the questions, numerous at a time when knowledge on the topic is developing rapidly. Interest in caregiving is on the rise and on many levels — personal, social, political, scientific and clinical.
One of the challenges in defining caregiving concerns the diverse nature of the practice.
On this front, recent developments to the definition of ”caregiver” represent a significant step forward.
For a long time, the terms “informal caregiver” or “family caregiver” were used primarily to refer to those who cared for elderly parents or spouses with Alzheimer’s, dementia or other related diseases.
In 2003, as part of its policy on home support entitled Chez soi, le premier choix, the Quebec government proposed a broadened definition of “caregiver” that no longer took account of the care receiver’s age. Under the new definition, a caregiver was:
Any person who provides significant, continuous or occasional support in a non-professional capacity to someone in their immediate circle with an incapacity . . . Caregivers may be family members or friends.
The definition under the Act to recognize and support caregivers (2020) goes further still to highlight various aspects of the practice such as type of support, caregiver/care receiver characteristics and the nature of their relationship.
Drawing on these various definitions of “caregiver”, what would be a reasonable definition of “caregiving”?
The Quebec Observatory on Caregiving is currently working to develop a shared definition of and terminology for caregiving. This involves the input of the many different caregiving stakeholders — not just the caregivers themselves, but also government officials, community workers, scientists and health & social services professionals.
To find out more about the project along with current definitions, terms and what constitutes common ground in caregiving, we invite you to view our interactive infographic as well as browse the publications and resources available under “What is caregiving” in our Knowledge portal.
Realities of caregiving
While certain experiences and characteristics are shared by all caregivers (observed in statistical trends, for example), the caregiver population is far from homogeneous. The realities of caregiving can vary widely from one caregiver and one caregiving story to the next.
Many factors play into distinguishing caregiving realities, including:
- Individual characteristics of both caregiver and care receiver — gender, age, sexual orientation, ethnocultural origin, socioeconomic status, etc.
- Health variables (e.g. physical and mental health, type of disability)
- The nature of the caregiver/care receiver relationship (e.g. spouses, parents, grandparents, children, extended or chosen family, friends, neighbours) and of their relations (open, difficult, conflictual, etc.)
- The care setting/living environment (e.g. whether they live together, whether the care receiver lives in a care setting) and its geographic location (urban, semi-urban or rural, relative remoteness or proximity to one another)
The same diversity marks the caregiver’s life course, including important turning points such as “entering” and “exiting” caregiving, the latter often accompanied by a period of bereavement.
Caregiving realities are thus influenced by factors relative to caregiver trajectories, for example:
- Characteristics of the support provided (e.g. weekly number of hours, type of support, number of person[s] supported, number of caregivers taking care of the same person, duration of the caregiving situation)
- How both caregiver and care receiver relate to the caregiving situation (whether or not the role was freely chosen, the care receiver’s ability to recognize their need for support, etc.)
To learn more about the different caregiving realities and how these situations can change over time, we invite you to explore the publications and resources available under “Realities of Caregiving” in our Knowledge portal.
Repercussions of caregiving
While caregiving can have multiple benefits for both caregiver and care receiver, it can also bring its share of challenges and difficulties. Examining the specific ways in which caregiving affects people’s lives can guide the search for support and solutions.
For the caregiver, caregiving can affect many different areas of life, including:
- Physical health (including sexual health)
- Mental health
- Personal life (family life, partner relationship, sexual life, social life, personal time, leisure)
- Professional life (career, availability for work, retirement)
- Financial health
- Civic and social engagement (volunteering, political participation)
Caregiving can have positive repercussions. It can enrich the relationship between the caregiver and care receiver; it can also give the caregiver a sense of satisfaction or personal achievement.
Furthermore, having a caregiver can benefit the care receiver’s well-being — for example, by allowing them to continue to live at home.
But caregiving can also have negative consequences. Some of the tasks to be performed are time-consuming and require a great deal of effort, cutting into the caregiver’s time for self-care (e.g. exercise, leisure activities) and representing a significant burden.
Often lacking training in some of the more specialized tasks (administering medication, managing crisis situations), caregivers can involuntarily injure themselves or the person they support.
Furthermore, caregiving multiplies the sources of stress (e.g. worries about the care receiver’s deteriorating health, coordinating assistance, anticipating risks), which can lead to exhaustion, sleep problems or psychological distress.
Caregiving quite often affects the caregiver’s working life and financial health. Having to be available to perform caregiving tasks can make balancing work or studies a challenge. Indeed, some caregivers are forced to reduce their hours (or leave the job altogether), drop out of school, turn down promotions, take unpaid leave or retire early. These decisions frequently lead to significant short-, medium- or long-term financial loss (e.g. a lower income or reduced retirement pension).
Caregivers may also face additional costs related to caregiving (materials and equipment, medication, fees for certain services, etc.).
Lastly, caregiving also affects the caregiver’s personal life and social participation. Taking on a caregiving role often cuts into time spent with loved ones (e.g. family, friends, partner). It can cause family or marital tension and significantly increase the burden of responsibility for someone trying to juggle family life and caregiving tasks.
Many caregivers are forced to cut back on their leisure time; they can also be less available to volunteer or even vote.
Moreover, while the caregiving situation can bring some caregivers closer to the person they care for, for others, it can complicate or even promote the deterioration of the relationship. In some cases, caregivers end up seeing the care receiver only as someone requiring care, which can change the nature of the bond — for example, between children and parents or between two spouses.
These challenges that are common to many caregivers can be intertwined with other factors such as socioeconomic status, gender inequality or racial discrimination.
To learn more about the positive and negative effects of caregiving and how they can impact caregivers’ lives, we invite you to explore the publications and resources available under “Repercussions of caregiving” in the Knowledge portal.
Analysis of caregiving support
Certain kinds of direct or indirect support are available to caregivers through the various resources designed for care receivers. Support of any kind helps caregivers meet their particular needs and, in a best-case scenario, even avoid many of the negative repercussions of caregiving.
Both the support available and recourse to support will vary based on individual characteristics and trajectories.
Different types of support correspond to different aspects of caregiving and how it affects the caregiver’s life. These include:
- Recognition/self-identification as a caregiver
- Social support (e.g. community support, support from the caregiver’s immediate circle, task sharing)
- Health and social services (e.g. respite, needs identification/assessment, training, psychosocial support)
- Personal finances (e.g. benefits, tax credits)
- Work (e.g. the work/caregiving balance, leave, retirement-related measures)
- Studies (e.g. the schooling/caregiving balance, assignment submission deadlines adapted to the caregiving situation)
- Transportation (e.g. forms of adapted transportation such as paratransit)
- Legislation (e.g. caregiver rights and duties, insurance, protection against discrimination)
Analysis of caregiving support includes researching and assessing the best, most promising, newest, cutting-edge and/or most exemplary practices. We also seek to understand and identify the support needs of the various caregiving stakeholders, including caregivers.
Reference is sometimes made to the “continuum of support” or “support trajectory”. This model considers the caregiving situation before support is accessed, while support is being received and after support has ended.
It also examines the points of transition between different support services or measures. Support can thus be assessed based on differing criteria such as availability, accessibility, acceptability, effectiveness, quality and impact for both caregivers and care receivers.
To learn more about the various kinds of caregiving support and their analysis, we invite you to explore the publications and resources available under “Analysis of caregiving support” in the Knowledge portal.
Society and caregiving
Caregiving is not an isolated phenomenon experienced only in the private or personal sphere. it involves a whole range of individuals whose lives it affects in many ways. In this sense, caregiving takes on a social and collective aspect.
The COVID-19 pandemic sharply highlighted the importance of understanding how social crises and shifts can impact caregiving and caregivers.
Indeed, the pandemic threw caregivers into the limelight. On the one hand, it underscored their positive and essential role, not just as care providers but also as important allies to the health & social services system. On the other hand, it made the difficulties caused by COVID-related social distancing and isolation measures all too glaringly obvious — for example, the increased caregiving burden due to the reduction or closure of support services for care receivers.
Social trends and shifts therefore intersect with caregiving, both influencing and being influenced by it. Each change or trend represents opportunities as well as risks or challenges. The current political and legislative context is one that promotes the recognition and support of caregivers.
Not only could this help curtail the negative consequences of caregiving on caregivers and those they care for, but it could also lead to health & social services system reforms that bring about real change.
The aging of the population in Western societies has (and will continue to have) repercussions on pension schemes and the health & social services system. It will also call on many to take on the role of caregiver for those in their immediate circle.
Compounding this situation is the current labour shortage, which extends to the health & social services sector. Limiting both the availability of and access to support, and posing challenges to support delivery, the scarcity of qualified staff will force many caregivers to pick up the slack and shoulder an even greater burden.
Lastly, workplace developments accelerated by the pandemic — for example, telehealth services and telework — represent both opportunities and challenges for caregivers and care receivers.
To learn more about how large-scale transitional events and social change affect caregiving, we invite you to explore the publications and resources available under “Society and caregiving” in the Knowledge portal.
To explore this section further
Definition of caregiving
Caregiving in Quebec: a few figures
