Family carers: Dying for love?

By: Mr Philippe MIGLIASSO, Senior Healthcare Executive and Administrator at the Monaco Gerontological Coordination Centre (CCGM).

The ageing of the population is a universal phenomenon, which affects or will effect every man, woman and child. The continued growth in the population of elderly people is having a direct impact on family relationships, on lifestyles and on the family solidarity that is the foundation of any society. The initiatives to provide home care for elderly people that have been developed in the Principality over several decades and those currently in the planning aim to respond to the wishes of our elderly people, particularly their desire to stay in their homes for as long as possible. Depending on the degree to which independence is lost, this is made possible by professional intervention, and by the temporary or permanent presence of family carers.

What is a carer?

“The concept of carer refers to the concepts of identity and family within sociology. It is a recent concept, which arrived in France from across the Atlantic, and has been studied primarily since the beginning of the twenty-first century. The ageing of the population and the prevalence of chronic disease is producing a weaker population. People are needing more and more assistance, and this cannot be provided by the healthcare system, which is focused on the short term and on controlling expenditure. Instead, it must be provided through intergenerational solidarity. The terminology used to describe close relatives who look after old people who are sick or have disabilities is wide-ranging: they may be referred to as natural carers, de facto carers, family carers, informal carers, support persons, relatives of the patient, and so on. The term “non-professional carer” is also used, and determines affiliation to a function rather than a category of people. In their dictionary of rehabilitation, Blouin and Bergeron define a carer as “a person who provides support to someone with a deficiency, incapacity or disability.”

According to Catherine Halpern, the French term is an imperfect translation of the English word “carer”, which “describes both the care provided and a certain emotional or moral disposition, the attention paid to someone else.” According to the Family Carer Guide: “A family carer is the person who provides full or partial assistance, on a non-professional basis, to a dependent elderly person or to a person with disabilities”

The challenge faced by family carers

Key to the provision of support at home, carers are often put to the test. The role of a carer is difficult and anxiety-provoking. Numerous studies have shown that caring has a negative impact on the health of the carer: fatigue, chronic stress caused by the constant carrying out of physically or emotionally demanding tasks that can lead to burn-out and not seeking care...

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[...] 2 million (carers) devote more than 50 hours per week to someone within their family circle. The carer no longer has any time for themselves and is likely to become physically and mentally exhausted. They are too devoted and forget about themselves. As a result, more than one in two die before the person they are caring for. (...) The population is going to age, dependency will increase, there will be more chronic disease and care will increasingly be provided at home. All of this rests on the carer, and that is why he or she needs assistance and support.

Source: ‘De l’air pour les aidants’, Le Bisma, November 2016

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All that said, it is not always easy for a carer to accept assistance. There are several factors to be taken into consideration: the feeling of intrusion into privacy if they agree to professional help, the feeling that they do a better job than someone from outside, difficulties with trust, failed previous attempts, emotional pressure from the person being cared for, who expresses feelings of abandonment when the carer delegates some tasks to take time for themselves... Supporting someone who has lost their independence involves a complex approach to the situation and requires consideration of both the cared-for person and the carer. Both are operating at their own pace.

The importance of respite when supporting family carers

Too often, the team at the Gerontological Coordination Centre sees so many reports from carers of crisis situations where exhaustion has already set in, intense fatigue requiring decisions to be made urgently. Acting in advance is difficult, as this often means stepping back from a reality where the carer has gradually taken on more and more to the point that sometimes they lose their role as a spouse or child in the relationship when faced with the loss of independence on the part of the person being cared for.

Faced with this need to support carers, which increased during COVID, the team at the Gerontological Coordination Centre and specifically the geriatric doctor and nursers, pays particular attention to the family carer during gerontology reviews for the person receiving care at home. Giving specific time to the carer recognises their commitment and the weight of their task, often described as a “burden” in the language used by professionals in gerontology. The interprofessional analysis of this review cannot be completed without taking into consideration the needs of the carer when producing support plans. After all, protecting the carer’s health also contributes to the provision of support at home.

Finally, the presentation of support plans by the team’s educational social workers often includes vital negotiating time with the carer, who can, paradoxically, be reluctant to agree to the delegation and respite that are vital to maintaining long-term care at home and the shared desire of both the carer and the person being cared for to remain in their home. 

The Monaco Gerontological Coordination Centre listens to carers

In difficult situations, the Gerontological Coordination Centre offers carers personal sessions. This is a unique opportunity for the carer to be listened to as they express themselves and share any concerns and questions. The principle is to respect the carer’s pace when it comes to decision-making and show them that they are not alone in this situation, but that the support offered by the Gerontological Coordination Centre makes them a valuable partner, a human with human strengths and weaknesses. They also have the right to take care of themselves. As such, while the person who has lost their independence is the focus of the support, particular attention must be paid to their carer. Offering a friendly ear, providing information, analysing problems and the emerging needs of the target population and those around them today represent an important part of the remit of the Monaco Gerontological Coordination Centre. The demographic phenomena of an ageing population gives it a leading role as an observer of the elderly population in order to help adapt and expand service provision.