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"Family carers are a vulnerable group"

The ZHAW has investigated the situation faced by people in need of care and their family carers in the municipality of Wallisellen. “While people who care for their relatives do an enormous amount, their role is hardly noticed,” says project team member Franzisca Domeisen Benedetti, who explains what is needed in order to improve the current situation.

What challenges do people who care for or look after their relatives face?

Franzisca Domeisen Benedetti: It starts with the fact that this considerable group – 8% of the Swiss population currently care for their relatives – is not even recognised for the role it performs.

What do you mean?

When a couple has children, they are automatically assigned the role of parents. However, if a son finds himself caring for his elderly mother, society does not necessarily perceive him in the role of a family carer. And it is no foregone conclusion that he will even do so himself. 

Why is this?

Family carers invariably have several roles at the same time and find themselves performing umpteen tasks in parallel. The son in my example will often also be a partner, father or grandfather and likely also be very involved in his work. Alongside all of these other obligations, it is also difficult to identify yourself as a family carer. Furthermore, you are not thrust into this role overnight, as is the case with parents. Instead, you find it sneaking up on you and becoming more intense as the years pass.

What tasks do family carers perform most often?

Very often, they find themselves taking care of administrative and organisational tasks. To begin with, they might only be helping with payments and forms. As time progresses, they may find themselves increasingly doing the shopping or helping out with household chores. And at some point, they eventually have to organise all of the formalities relating to care and repeatedly check that everything is going smoothly in their relative’s everyday life. This is a lot of work and can be very taxing, meaning that family carers often reach their limits or even suffer a burnout because they have too much on their plate.  

The ZHAW conducted a survey on the “requirements of people in need of care and their family carers in the municipality of Wallisellen”. What situation did you encounter there?

At first glance, it looked as though all was still right in the world in Wallisellen. In our survey, 40% of family carers stated that they seek support in good time when the strain on them becomes too great. Just over 70% felt “rather satisfied” to “satisfied” in their role as a carer and also rated their own well-being as very high.

And at second glance?

For the study, we also spoke with the LUNAplus counselling centre for senior citizens and – as we actually expected – found that our results do not necessarily correspond with their everyday experiences. The LUNAplus employees meet many elderly couples in difficult situations who find themselves at their limits from both a physical and mental standpoint.

Why did this discrepancy not come as a surprise to you?

On the one hand, some 90% of the respondents failed to return our questionnaire. Among these individuals, many of them will simply have been so busy that they didn't have the time to complete the questionnaire. In other words, we were actually unable to reach many people who are overburdened and in need of support. And, on the other hand, people often answer surveys in a way that they think is socially desirable. In this case, this equates to painting a picture in which they are in control of the situation.

Nevertheless, one-third of family carers stated that they suffer from stress and anxiety. How can their situation be improved?

First of all, it is important to draw attention to the fact that it is not only people in need of help who are a vulnerable group, but also the family carers who look after them. This reality is not yet present in many people’s minds. There is also the fact that false recognition within the family can, under certain circumstances, place additional pressure on the relatives providing care.

How do you mean?

If, for example, a brother praises his sister for taking care of their mother so fantastically that he could never dream of living up to her. This kind of admiration can in fact send the wrong signal and increase the sister’s level of stress, as she is now even more afraid of admitting to herself and those around her that the whole thing is perhaps too much for her and that she needs to take more time for herself.

What can the municipality of Wallisellen do in order to ease the strain placed on family carers?

On the one hand, the population should be made more aware of the issues we have just discussed. On the other, public appreciation and visibility are important factors. Wallisellen is planning, for example, to arrange breakfast meetings for family carers at which they will have the opportunity to talk with one another and share their experiences. At the same time, it is important to further boost awareness of the existing services offered by the municipality that are aimed at easing the strain on family carers. And above all else, the trust placed in these services, which include day and night centres, needs to be strengthened.

Would you say that, in principle, relatives are suspicious of such services?

What can be said with certainty is that they have scruples about leaving relatives who require care with strangers if they are unsure that they will be in good hands with them. This is also one of the reasons why they prefer to stay at home with their relatives instead of allowing themselves to take time out with friends or like-minded people. Wallisellen already offers a good and wide range of services. However, the municipality needs to do a better job of demonstrating that it is beneficial for both the carers and those being cared for to make use of the services provided by the day centre for a few hours each week.  

What measures are needed in the longer term?

As things stand, practically every municipality his its own services aimed at senior citizens. What’s more, it is often the case that there is a lack of clarity about exactly what the neighbouring municipality offers. This does not make any sense, as care arrangements are not limited to municipal borders. Often, for example, adult children who are now providing care do not live in the same place as their elderly parents. This is why national structures are required. Finding nationwide solutions here is a major issue that will continue to occupy us for many years to come.

The most important results and recommendations for action:

The municipality of Wallisellen has set itself the objective of improving the situation faced by elderly people in the future. With this goal in mind, it commissioned the ZHAW to conduct an analysis of the “requirements of people in need of care and their family carers in the municipality of Wallisellen”. Some 322 people participated in the survey, 34% of whom were family carers. The results from Wallisellen support the outcome of the 2019 FOPH study on the needs and requirements of family carers for support and relief.

  • Sociodemographic situation in Wallisellen: Family carers are mostly married women of an older working age who live with their partner and who themselves have an average age of 62. They most frequently find themselves caring for their parents, with the second most common group of people to receive care from relatives being their partners. More than half are employed on either a full-time or part-time basis. On average, they provide care to the individual in need of support for 11 hours per week. Around 40% of them never make use of Spitex. Here, it is important to observe whether it is possible to reconcile gainful employment and care tasks, and which respite services should be made available.
  • Distance caregiving: Almost 50% of people who currently care for someone state that the person in need of care does not live in Wallisellen. These figures reveal that “distance caregiving” is also a major issue in Wallisellen that needs to be considered if future-oriented solutions are to be offered for elderly people.
  • Perception of the caring role: On average, the caregivers rate their well-being as quite high and the care situation they encounter as moderately stressful. They also state, however, that their role as a caregiver means they have less time for themselves and causes them problems with respect to their own physical and mental health. This means that even highly motivated and resilient family caregivers can find themselves in a situation in which they need support. In such cases, they should be provided with tools that allow them to reflect on themselves and their situation.
  • Recommendations for municipal services: Examples include training courses and information events for family caregivers which are aimed at improving their self-management and providing them with the opportunity to talk and share experiences with one another. Further measures may include raising awareness of the issue and increasing the level of appreciation amongst the public with lectures or events that show that care and support in old age is a topic that affects everybody.