When the Psychological Weight of the Burden Affects the Physical Weight of Caregivers of Older Patients in a French Memory Hospital (Lille, France)

Dominique Huvent-Grelle ^{1, *}, Victoire Leroy ² , Mikael Horvath ¹ , Laurence Grymonprez ¹ , David Faucomprez ¹ , François Puisieux ¹

1. Pôle de Gérontologie, Hôpital Calmette, CHU LILLE, 59 000 LILLE, France

2. Division of Geriatric Medicine, Tours University Hospital, Tours, France

* Correspondence: Dominique Huvent-Grelle

Academic Editor: Cristiano Capurso

Received: May 23, 2025 | Accepted: September 29, 2025 | Published: October 10, 2025

OBM Geriatrics 2025, Volume 9, Issue 4, doi:10.21926/obm.geriatr.2504328

Recommended citation: Huvent-Grelle D, Victoire L, Horvath M, Grymonprez L, Faucomprez D, Puisieux F. When the Psychological Weight of the Burden Affects the Physical Weight of Caregivers of Older Patients in a French Memory Hospital (Lille, France). OBM Geriatrics 2025; 9(4): 328; doi:10.21926/obm.geriatr.2504328.

© 2025 by the authors. This is an open access article distributed under the conditions of the Creative Commons by Attribution License, which permits unrestricted use, distribution, and reproduction in any medium or format, provided the original work is correctly cited.

1. Background

In 2023, the WHO estimated that 50 million people worldwide were suffering from major neurocognitive disorders (NCD), particularly older adults, whose prevalence is linked to increased life expectancy. In nearly 60–70% of cases, the diagnosis is Alzheimer's disease [1]. In France, around 1 million people are affected, accounting for 8% of individuals over the age of 65 in 2020 [1]. As the disease progresses, patients may experience physical problems such as gait disorders and falls, as well as nutritional issues and loss of autonomy [1]. Over 90% of adults aged 65 and over with Alzheimer's disease rely on assistance from family members or other unpaid carers [1]. In 2021, caregivers of people with Alzheimer’s disease or other dementias in the USA provided approximately 16 billion hours of informal care, valued at an estimated $271.6 billion. The median duration of caregiving is around five years, though it can extend much longer, reflecting the progressive nature of the disease [1].

Caregivers are non-professional individuals who voluntarily support a dependent, disabled, or patient who is losing their autonomy. They become 'co-caregivers', true partners in care. In France, it is estimated that there are between 9 and 11 million caregivers [2]. An Ipsos survey conducted in France in 2020 showed that nearly half of caregivers reported a negative impact on their social or family life (45%) and on their health (53%). More than six in ten respondents (62%) reported difficulties in managing the caregiver role, resulting in absolute exhaustion and overwork, and three-quarters expressed a need for respite (74%) [3].

At some point in life, everyone may need to be cared for and may also need to care for others, often in a cyclical manner. Caregivers may be ageing or unwell themselves, which makes them vulnerable. The physical and mental burden of supporting a patient with NCD should not be underestimated, especially when the patient is young [4]. Caring for patients with NCDs can therefore be particularly challenging for family caregivers. Depression, loneliness, and the heavy burden of caring are risk factors for caregiver malnutrition. A study conducted by HAS (2010) found that 23% of caregivers experienced weight loss [5].

Our study, therefore, focuses on recent weight variation in caregivers: identification of caregivers’ characteristics (age, gender, status, etc.), and analysis of possible associations between caregivers' weight variation (WV) and patients' NCD (diagnosis and severity), reported levels of fatigue, caregivers' burden, and quality of life.

2. Methods

2.1 Setting

Observational, retrospective, monocentric study conducted on all patient-caregiver dyads admitted to the Memory Day Hospital of the Gerontology Center of the University Hospital of Lille for six months in 2023. (No exclusion criteria).

2.2 Data Collection

• The PATIENTS: socio-demographic characteristics, Mini-Mental State Examination (MMSE) score, diagnosis of NCD, associated psycho-behavioral disorders (assessed using the NPI scale).
• The CAREGIVERS: demographic characteristics, status, duration, frequency, and details of support, practice of physical activity, regular use of alcohol, and use of psychotropic medications. Assessment of the caregivers’ WV according to three categories: (i) no change, (ii) loss, (iii) weight gain. (WV was considered significant if it exceeded a gain or loss of 1 kg in the last three months).

The caregivers were administered:

1. Fatigue Numerical Rating Scale (Fatigue NRS): 0 (no fatigue) to 10 (extreme fatigue).
2. Mini-Zarit scale: assessment of caregiver burden. (maximum score of 7 = severe burden)
3. WHOQOL-BREF scale: assessment of four domains: physical health, mental health, social relationships, and environment. The higher the total score (out of 100) per domain, the better the estimated quality of life.

2.3 Statistical Analyses

Numbers and percentages were used to describe the qualitative variables. Quantitative variables were described by mean ± standard deviation in the case of a Gaussian distribution, or by median (interquartile range, i.e., 25th and 75th percentiles) otherwise. Normality of the distributions was assessed using the Shapiro-Wilk test and visually verified through histograms.

Caregivers were divided into 3 categories according to their WV. Comparisons between these 3 categories and the different variables were made using chi-square tests for qualitative variables and Kruskal-Wallis tests for quantitative variables.

All statistical tests were performed with a two-sided 5% significance level. Analyses were performed with SAS 9.4 software.

2.4 Ethical Considerations

This study was conducted in accordance with the Data Protection Unit of the University Hospital of Lille. It was designed and conducted in accordance with the principles outlined in the Declaration of Helsinki. The data collected were anonymized. Authorization was obtained from the WHO to use the WHOQOL-BREF scale.

3. Results

Our study included 106 dyads (with no refusals). Among the patients, the majority were women (n = 68, 64%), with a mean age of 81 years (range: 70–92), and were living at home (n = 87, 82%). Regarding NCD, the mean MMSE score was 23/30 (75% had an MMSE score below 20, and 25% had an MMSE score ≥20). Almost one-third had been diagnosed with no cognitive impairment or mild cognitive impairment, and two-thirds with major NCD (70% with Alzheimer’s disease or a combination of Alzheimer’s disease and cerebrovascular disease). The mean score on the NPI scale was 12.9 (range: 0–48).

Among the caregivers, the majority were women (n = 67, 63.2%) living as a couple. We identified three statuses: spouses (30%, mean age 76), adult children and stepchildren (58%, mean age 55), and a group of “others” (siblings, adult grandchildren, etc., 11%). The help provided was mainly clerical/administrative support (84%) (see Table 1).

Table 1 Characteristics of caregivers according to status and weight variation.

Almost three-quarters of caregivers experienced WV: those who had lost weight were mainly spouses (55.5%), and those who had gained weight were primarily children (62.3%). The average Mini-Zarit score by category (status or WV) was 2/7 (See Table 1). The total scores corresponding to the different domains of the WHOQOL-BREF scale are shown in Figure 1. Comparing WV and the four WHOQOL domains, the lowest score (62/100) was observed for caregivers who lost weight, specifically in domain D: social relationships.

Figure 1 Results between caregivers’ weight variations and the four domains of the WHOQOL-BREF scale.

In bivariate analysis, only caregiver status (p = 0.046), patient NCD severity (p = 0.031), and Fatigue NRS (p = 0.007) were significantly associated with WV (see Table 2). We did not analyze the potential associations between WV and duration or frequency of support due to the small sample sizes.

Table 2 Comparisons between weight variation and caregivers’ status, NCD severity (MMSE score), NCD diagnosis, Fatigue NRS, psychological burden (mini Zarit scale), and the four domains of the WHOQOL-BREF.

4. Discussion

In our study, we found that WV differed according to caregiver status. Among caregivers, those who had lost weight were most likely to be spouses, and those who had gained weight were most likely to be adult children. Caregiver status, patient NCD severity, and Fatigue NRS were significantly associated with WV.

Our study has some limitations. It is, in fact, a single-center study based on small samples, which is often the case according to the literature review [6,7,8]. The dyads were also recruited from a Memory Day Hospital. Data were collected through self-reporting. The originality is the main strength of our work: the issue of caregivers’ WV is rarely studied in the literature. Our study is also easy to reproduce, given the low cost of implementation (purchase of a bathroom scale).

4.1 Who Are the Caregivers?

At some point in their lives, everyone is either a caregiver or a care recipient, and this role often alternates over time. As in our study, women (especially daughters) are in the majority when it comes to providing this local solidarity, offering help with activities of daily living or moral support, while men tend to provide financial support [9]. In terms of age and status, two groups with distinct challenges predominate: older spouses who must maintain their own health and well-being, and adult children, for whom balancing work, couple life, and caregiving roles is not easy [10]. Adult children tend to snack more to manage their emotions, whereas spouses often lose weight due to the stress of managing daily life as a couple and caring for the patient. We did not, however, study WV according to caregivers' sex, due to an insufficient sample size. However, research has shown that male caregivers tend to have higher BMI, greater obesity, increased fat consumption, and poorer satiety control [11].

4.2 Caregiving Can Make You Sick...

The duration and frequency of care are risk factors for caregiver burnout, particularly in relation to the severity of NCD [8]. A French study compared caregivers of older patients with NCD to those without: almost 30% of caregivers in the former group used psychotropic medications (mainly anxiolytics), versus 18.2% in the latter group [12].

In our study, 54.7% of caregivers reported using such substances, especially spouses. Caregivers of people with NCD also report significant diffuse pain, often due to overprescription or self-medication with painkillers [13,14]. Participation in leisure activities may therefore be beneficial. In our study, 47.2% of caregivers, especially adult children, reported engaging in physical or sports activities. HIRANO found an inverse relationship between participation in sports and caregiver burden, as measured by the Zarit scale [15].

4.3 Caregivers’ Weight Variation: An Indicator...

It is essential to listen to caregivers. There are many questionnaires available to identify their distress. Measuring WV may also provide a simple way to detect caregiver distress. A Portuguese study examined the link between WV and caregiver burden, finding that caregivers who were overweight or obese were less likely to experience significant burden (overweight appeared to be protective) [6]. In our study, we found a significant association between WV and Fatigue NRS (p = 0.007). Chronic fatigue is one of the earliest signs of exhaustion related to the daily duration of caregiving [16]. Caregivers who are over-invested and overworked may feel overwhelmed or even exhausted. They may feel ineffective and withdraw from social activities [5], with an increased risk of anxiety or burnout [7,17], depression [17], suicide [18], alcoholism [19] (59.4% of spouses in our study were regular alcohol consumers), and drug dependence [20].

4.4 Advice for Caregivers

• Do not become isolated; actively combat isolation, especially when social activities are reduced due to caregiving responsibilities.
• Take care of your own health by maintaining a balanced diet and regularly monitoring your weight.
• Address financial vulnerability, as costs associated with the patient’s dependency can be significant. Young caregivers may avoid discussing their situation, sacrificing their youth and/or future. Many employed caregivers manage their responsibilities quietly at work, sometimes needing to work part-time, which reduces income, or take leave outside of vacation, which can hinder career progression.
• Educate yourself about the patient's illness, understand the condition, and learn what behaviors and actions to adopt.
• Plan for the future, accept help, and familiarize yourself with carers’ rights (e.g., paid carer’s leave for employees in France).
• Make use of caregiver support and respite platforms, caregiver cafés, discussion groups, and associations for patients and caregivers, which are available nationwide.
• Use respite services such as day care centers, temporary accommodation, in-home support, or 'baluchonnage' (temporary full-time caregiving relief) to allow yourself breaks.

5. Conclusion

Caring is a major social issue. Caregivers, often considered "invisible" and the pillars of national solidarity, are beginning to gain more recognition from society, particularly with the introduction of a "carer status" in France. Our study showed that caring for a patient with NCD can be exhausting for the caregivers and can have an impact on their weight. It is therefore necessary to continue informing and raising awareness among the general public and healthcare professionals to improve identification and optimize support and assistance for caregivers. It is essential to monitor the caregiver’s weight regularly to prevent distress and burnout. A variation in weight is a warning sign. The development of a biomarker capable of predicting the physical burden associated with WV would represent a significant advance in the field. Future research could be conducted in a multicenter setting, both in France and internationally, to follow caregivers longitudinally and analyze the evolution of our indicators in depth over time. The stakes are high; it is essential to treat the patient, but also to support the caregiver.

Acknowledgments

The authors thank Evelyne GERME, Evelyne GUILLAUTOU and Géry HUVENT for their valuable assistance.

Author Contributions

Dominique HUVENT-GRELLE conceived and designed the study. David FAUCOMPREZ planned the statistical analysis. Dominique HUVENT-GRELLE drafted the manuscript. Mikael HORVATH and Laurence GRYMONPREZ performed the literature search. François PUISIEUX and Victoire LEROY revised the manuscript. All authors contributed to the interpretation of the results and approved the final version to be published.

Competing Interests

The authors have declared that no competing interests exist.

AI-Assisted Technologies Statement

We used DeepL and ChatGPT to assist in correcting linguistic and translation-related errors, as the original article was written in French.