We sometimes hear the term informal care, but what is that actually? What does an informal caregiver or someone who provides informal care do? And what problems (pitfalls) can he/she encounter?
The different tasks of an informal caregiver
Informal care is defined as care that is not provided in the context of a profession or organized volunteer work to a housemate, family member, friend, acquaintance or neighbor who needs care due to illness, disability or old age.
When we look at the task list of most informal caregivers, we can divide the tasks within that general ,care, into three different types:
Social-emotional tasks
Social-emotional tasks include: supporting the person in need of care with bad news, listening to problems associated with the illness or loss of self-reliance, keeping company and going for a walk with the person in question or participating in social activities if possible. Some people are very seriously ill and part of the coping process is projected onto the informal caregiver, making them not only a listening ear, but also a support and a sounding board during this process. This task is fundamental in informal care and often makes the difference between the informal caregiver and the professional employee. The informal caregiver knows the context of the person in need of care and is much more involved in the situation. This certainly entails a pitfall, but is certainly an added value if the borders are well guarded.
Household chores
The second category of tasks are household tasks. The term speaks for itself: shopping, cleaning, cooking, washing and ironing. These are the tasks that the informal caregiver usually thinks of first when outside help is needed. For the care recipient who can still take on a small part of those tasks, it is sometimes a moment of social interaction. The informal caregiver does the heavier work and the care recipient helps at his or her own pace.
Tasks related to personal care
Finally, there are those tasks that relate to personal care: washing and dressing the person, feeding, helping with toilet visits and replacing incontinence materials if necessary. It should be noted here that just because a task is taken on by an informal caregiver does not mean that this task cannot also be fulfilled by employees of the professional circuit. For example, professional nursing can perfectly wash and dress someone and the helper from the home care service will, if necessary, take on a number of household and possibly also social-emotional tasks.
How does someone actually become an informal caregiver?
A fundamental difference between informal care and the professional sector is that there is a connection between the informal caregiver and the patient. Both people know each other and have an existing relationship. Yet someone usually does not consciously become an informal caregiver. The majority of people gradually move into that position. For example, most partners care for each other based on the belief that this is part of their role as a partner. Even though in some cases this becomes a task that takes up the entire day of the other, people do not ask any questions about it. If it does not concern a partner or a child, it is usually the result of an urgent request from someone who becomes in need of care and subsequently also needs urgent help.
Sometimes, however, informal care is consciously organized. This is the case, for example, when the informal caregiver can no longer provide care alone or suddenly falls away due to illness. In that case, consultation arises between the various possible informal caregivers and the various informal caregivers consciously participate in the process. In such a case, all tasks to be performed are identified and distributed.
Pitfalls for informal caregivers
An informal caregiver takes on the task of caring for a partner or family member in need of help. It goes without saying that taking care of a loved one is not always an easy task. On the one hand, there is the evolution of the patient that is not predetermined and as a result of which the need for care can continue to increase during the care period, and on the other hand, there is the capacity of the informal caregiver, which is limited somewhere. The informal caregiver is often confronted with a serious illness and all the worries that come with it for the first time in their lives. This requires a lot from the caregiver physically and emotionally.
Four common pitfalls
Below we take a look at those things that an informal caregiver should always pay attention to.
The first pitfall is that people often do not realize that they are informal caregivers. Partners take care of the other without questioning it. This is part of marital duty and is therefore not considered an exceptional concern. As already mentioned, informal caregivers sometimes see their task as a moral obligation. My wife or husband would have done this too. This attitude makes them less likely to ask for help and they try to continue to manage even when the tasks become more complex. Especially in the case of persons who are terminally ill or require palliative care, the informal caregiver will be confronted with declining self-care on the part of the patient and increasingly complex problems. Not realizing that you are an informal caregiver means that you will not call in extra help or expand a network that could relieve you yourself. In this case, the informal caregiver leaves a whole tangle of support unused and this makes him or her even more vulnerable. In this respect, the professional sector is committed to early detection so that informal caregivers can be guided and supported. This gives them more capacity and makes it possible for the social workers to relieve them of overly demanding tasks in a timely manner.
A second pitfall lies in the fact that in many families in crisis situations, old patterns are held on to. The care of the parents is borne by the sister who lives closest, or the eldest son takes care of the parents. This may have been the case when it was sporadic help or with the weekly shopping, but when this structure is maintained when the parents need help for several hours every day, it becomes a tough job.
A third pitfall is the isolation that informal caregivers face over time. Isolation is therefore a common problem among informal caregivers, especially when they can only count on a small network or no network at all. The caregiver’s world is very quickly reduced to caring for someone, leaving no opportunity to relax or maintain social contacts. However, this is very important if the informal caregiver wants to maintain his capacity. We often see this happen with partners who care for each other, children who move in to care for a palliative parent and parents who care for severely disabled children. Healthcare will dominate the entire living environment and there will be no time left for other things. In addition to this, it is important to note that being able to vent and exchange thoughts, experiences, frustrations, etc. is very crucial for informal caregivers. After all, informal caregivers are also people who need a good conversation when things get difficult. The fact that they take on the task of informal caregivers puts extra pressure on their existence. In turn, they must be able to share this with fellow sufferers, other family members or care providers.
Finally, all these pitfalls lead to one major and fourth pitfall, namely overburdening of the informal caregiver. Not developing a network, isolation, continuing to carry on for moral reasons, continuing to take on the increasing burden of care, all these things can put serious pressure on the informal caregiver. Overload is harmful to both the informal caregiver and the patient. To get a clear picture of what overload actually means, it is important to look at the informal caregiver’s capacity and burden. By capacity we mean the amount of work, tasks, roles, problems and the like that a person can cope with. In addition to this carrying capacity, there is also the carrying burden, by which we mean the effective amount of problems, tensions and work pressure that rests on the shoulders of the person in question. The burden of the informal caregiver depends on the number of tasks he has to take on and the number of problems and problems that arise. The capacity, on the other hand, depends on a number of internal and external factors that characterize the informal caregiver. For example, the relationship between the informal caregiver and the person in need of care is important: the better that relationship, the greater the capacity. In addition, factors such as appreciation, communication with the person in need of help and other care providers, the health of the informal caregiver, the family situation, the financial situation and the ability to ventilate experiences also play a major role. When the load exceeds the carrying capacity, we speak of overload.