Psychology, Health & Medicine, 2015 Vol. 20, No. 1, 41–46, http://dx.doi.org/10.1080/13548506.2014.892627

Age, gender, kinship and caregiver burden in amyotrophic lateral sclerosis Francesco Tramonti*, Paolo Bongioanni, Rebecca Leotta, Irene Puppi and Bruno Rossi Neurorehabilitation Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy (Received 30 September 2013; accepted 4 February 2014) Amyotrophic lateral sclerosis is a neurodegenerative disease that affects the motor neurons and causes progressive physical impairment. Also, other functions, such as breathing, swallowing and speech are compromised, and the loss of independence makes caregiver burden extremely high. The present study aimed at evaluating the differences in the caregiver burden due to age, gender and kinship. Women reported a higher physical and social burden than men, and partners scored higher in several dimensions of the caregiver burden when compared to sons and daughters. With respect to adult child caregivers, daughters reported higher levels of developmental burden than sons. Age has a significant impact on the caregiver burden, especially for the time dedicated to assistance and physical burden; disease severity is significantly related to the physical burden as well, and also with the developmental burden. Keywords: ALS; caregiver burden; family; kinship

Introduction Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that affects the motor neurons and causes progressive physical impairment. Its poor prognosis and the severity of symptoms, including breathing, swallowing and speech dysfunctions, can have a strong impact on both patients and caregivers, although psychological well-being is not strictly related to physical functioning (Cupp et al., 2011; Pagnini, 2013). People who assist patients with ALS have to face physical, psychological and socio-economic demands (Gauthier et al., 2007; Trail, Nelson, Van, Appel, & Lai, 2004; van der Steen, van den Berg, Buskens, Lindeman, & van den Berg, 2009). From a relational point of view, the physical impairment elicits a strong interdependence between patients and caregivers, whose distress or resilience are significantly related (Boerner & Mock, 2012; Chiò, Gauthier, Calvo, Ghiglione, & Mutani, 2005; Pagnini et al., 2011). Furthermore, the increasing evidence of cognitive and behavioural symptoms in some patients with ALS is paralleled by their strong impact on the caregivers’ burden (Chiò et al., 2012). Despite evidence of the possible consequences of intense and prolonged caregiving on health and psychological well-being, further investigation is needed to better understand which situations and conditions could be associated with higher risks (Vitaliano, Zhang, & Scanlan, 2003). Given that typically caregivers are patients’ relatives, it is also necessary to evaluate their burden within the context of family relations. *Corresponding author. Email: [email protected] © 2014 Taylor & Francis

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Severe and impairing diseases can modify family organisation, and the caregiver burden can be significantly shaped by family rules and expectations (Rolland, 1994). These include the type of the relationship between patients and caregivers, since the perceived burden could be influenced by the role and position within the family, as well as by life cycle issues. These aspects have been studied in the field of dementia, where, although results are not always in agreement, there is growing evidence of adult child caregivers reporting a higher burden (Chumbler, Grimm, Cody, & Beck, 2003; Conde-Sala, Garre-Olmo, Turró-Garriga, Vilalta-Franch, & López-Pousa, 2010). We suggest that the caregiver burden could be influenced by these variables also in other conditions, as well as by age, gender and the clinical feature of each disease. In the present study, we thus evaluated the burden of caregivers of patients with ALS in relation to the aforementioned variables. Materials and methods Seventy caregivers (22 men, 48 women; average age: 53.70 ± 11.45) of patients with ALS were recruited in our hospital-based Neurorehabilitation Unit. The sample was derived from the evaluation of 89 caregivers who consecutively attended the hospital: Professional caregivers were excluded, as well as less representative kinship categories, such as sisters, parents or daughters-in-law. The Caregiver Burden Inventory (CBI) (Novak & Guest, 1989) was administered to all the eligible subjects and its scores were correlated (Spearman’s R) with age and patients’ functional status. The latter was measured with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS), which assesses physical functioning in terms of movements, swallowing, breathing and speech (Cedarbaum & Stambler, 1997). The CBI evaluates five dimensions of the caregiver burden: Time-dependent Burden, Developmental Burden, Physical Burden, Social Burden and Emotional Burden. The questionnaire provides a total score, as well as separate scores for the subscales. Caregivers were grouped according to their relationship with the patients, and the scores of partners were compared with those of adult children by means of the Wilcoxon test. Further comparisons between wives and husbands, sons and daughters, and a general comparison between men and women, were also made. Significance for both p ≤ .01 and p ≤ .05 was considered. Results Female caregivers outnumber the male ones and wives are the most representative caregivers in our sample (Table 1). This is not surprising, since ALS is more prevalent in men and its onset usually happens in middle age, when the couple relationship is typically the primary source of support. Table 1.

Males Females Husbands Wives Sons Daughters

Descriptive statistics. n

Average age

Average CBI tot. scores

22 48 15 35 7 13

55.64 ± 11.53 52.81 ± 17.50 60.80 ± 10.68 56.77 ± 11.30 44.57 ± 10.42 42.15 ± 11.07

31.25 ± 17.20 38.64 ± 17.50 36.45 ± 15.09 41.00 ± 16.96 20.11 ± 19.78 32.27 ± 15.22

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The comparison between male and female caregivers revealed a significant difference in the Physical (z = −1.94; p ≤ .05) and Social (z = −2.05; p ≤ .05) Burden, which resulted higher in women. Significantly higher scores in Time-dependent (z = −1.96; p ≤ .05), Physical (z = −2.49; p ≤ .05), Social (z = −2.37; p ≤ .05) and Emotional Burden (z = −2.21; p ≤ .05), as well as in the total CBI scores (z = −2.52; p ≤ .05), were detected in partners when compared to adult child caregivers (Figure 1). Among the latter ones, daughters scored higher (z = −2.40; p ≤ .05) than sons in the Developmental Burden (Figure 2). Age correlated positively ( p ≤ .05) with Time-dependent and Physical Burden, as well as with the total CBI scores. The ALSFRS scores correlated negatively ( p ≤ .01) with Time-dependent Burden and the total CBI scores (Table 2), which are in average high (36.32 ± 17.14), since scores >36 indicate a risk of burn out.

Figure 1.

Comparison between partners’ and adult children’ CBI scores.

Figure 2.

Comparison between sons’ and daughters’ CBI scores.

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Table 2.

Age CBI tot T-dep Dev Phys Social Emot ALSFRS

Correlations among caregiver burden, patients’ functional status and caregivers’ age. Age

CBI tot

T-dep

Dev

Phys

Social

Emot

ALSFRS

1 .238* .238* .114 .287* .095 .145 −.068

.674** .793** .853** .499** .543** −.435**

.384** .481** .056 .125 −.689**

.614** .355** .466** −.201

.390** .403** −.228

.419** −.050

−.165

1

* p < .05 (two-tailed), **p < .01 (two-tailed). Notes: T-dep = Time-dependent Burden; Dev = Developmental Burden; Phys = Physical Burden; Social = Social Burden; Emot = Emotional Burden.

Discussion Our data confirm previous findings about caregiving in ALS and suggest that there could be significant differences in the caregiver burden according to age, gender and kinship. Women are more likely the primary caregivers and they report a higher burden, especially in the physical and social domains. This result is consistent with previous studies on Alzheimer’s or other dementia, and confirms that women pay a higher price for their commitment to caregiving (Gallicchio, Siddiqi, Langenberg, & Baumgarten, 2002; Thies, Bleiler, & Alzheimer’s Association, 2013). Despite wives being prevalent in our sample and women reporting a higher burden, the gender differences are more evident within the adult children subgroup. In detail, daughters lament a higher burden than sons, especially for the developmental burden. This means that they more easily feel the sensation of losing opportunities in their lives. Due to the typical age of onset of ALS, daughters are usually young or middle-aged adults, who may be still strongly tied with their families of origin or involved in their own couple relationships, with or without young children. An intense involvement in caregiving duties may cause competing demands, such as caring for ill parents when contemporarily having to rear the offspring or gaining autonomy from the families of origin, with possible conflicts of loyalty (Rolland, 1994). Caregiving in ALS implies an intense and prolonged support, physical effort and emotional distress; considering that women are more easily involved in other household or family duties, this extra effort can lead to overload and reduced social participation. However, in general, when we compare partners with adult children, the former ones report a higher burden in almost all the dimensions, encompassing the time dedicated to assistance and the physical, emotional and social burden. The latter includes the agreement with other family members and the support received by them in caregiving duties. This finding confirms that caregiving in ALS is frequently a matter of partners, who lament significant effects on their health and more easily feel alone or scarcely helped, especially in the case of wives. Age seems also to have a negative impact on the caregivers’ burden, especially for the time dedicated to assistance and the physical burden. Indeed, physical effort and prolonged care may be plausibly more demanding for older caregivers, who are more vulnerable in terms of health (Pagnini et al., 2010). Also, disease severity has a significant impact on the caregiver burden: Heavier physical impairment is associated with a higher general burden and more time dedicated to assistance. With disease progression, the medical treatments for ALS become

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intensive, frequently necessitating the implantation of tracheotomy and percutaneous endoscopic gastrostomy, and caregiving duties increase, often implying the learning of delicate procedures (Andersen et al., 2012). Although the sample size does not allow us to draw definitive conclusions, these data stimulate significant considerations about the specific features of ALS in relation to family life cycle. If, on the one hand, the developmental burden seems to be the most significant concern of caregiving by adult children; on the other, the physical burden is usually higher in spouses, as well as the time dedicated to assistance. The evidence that also the emotional and social burden are higher in partners suggests that even if sons, and especially daughters, report a strong psychosocial impact of caregiving on their lives, the assistance to patients with ALS seems to be more demanding when provided by partners, and especially wives, who report a higher emotional strain and lament scarce help from other family members. This could be a significant difference with other conditions, such as dementia, where adult child caregivers often lament a higher burden than spouses (Chumbler et al., 2003; Conde-Sala et al., 2010). Such a difference might be attributable to the different age of onset and to the resulting difference in the involvement of family members in caregiving duties. In conclusion, further research is needed for a better understanding of which variables might exert a significant influence on the caregivers’ burden. Age, gender and kinship likely play an important role, as well as the disease variables such as the age of onset and its symptoms and progression. A deeper knowledge of these aspects could improve tailored interventions for families coping with severe diseases and give useful advice for preventing excessive burden and distress in family relationships. References Andersen, P.M., Abrahams, S., Borasio, G.D., de Carvalho, M., Chio, A., Van Damme, P., … EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis. (2012). EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS) – Revised report of an EFNS task force. European Journal of Neurology, 19, 360–375. Boerner, K., & Mock, S.E. (2012). Impact of patient suffering on caregiver well-being: The case of amyotrophic lateral sclerosis patients and their caregivers. Psychology, Health & Medicine, 17, 457–466. Cedarbaum, J.M., & Stambler, N. (1997). Performance of the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) in multicenter clinical trials. Journal of the Neurological Sciences, 152(Suppl. 1), S1–S9. Chiò, A., Gauthier, A., Calvo, A., Ghiglione, P., & Mutani, R. (2005). Caregiver burden and patients’ perception of being a burden in ALS. Neurology, 64, 1780–1782. Chiò, A., Vignola, A., Mastro, E., Giudici, A.D., Iazzolino, B., Calvo, A., … Montuschi, A. (2012). Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life. European Journal of Neurology, 17, 1298–1303. Chumbler, N.R., Grimm, J.W., Cody, M., & Beck, C. (2003). Gender, kinship and caregiver burden: The case of community-dwelling memory impaired seniors. International Journal of Geriatric Psychiatry, 18, 722–732. Conde-Sala, J.L., Garre-Olmo, J., Turró-Garriga, O., Vilalta-Franch, J., & López-Pousa, S. (2010). Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer’s disease: An exploratory comparative design. International Journal of Nursing Studies, 47, 1262–1273. Cupp, J., Simmons, Z., Berg, A., Felgoise, S.H., Walsh, S.M., & Stephens, H.E. (2011). Psychological health in patients with ALS is maintained as physical function declines. Amyotrophic Lateral Sclerosis, 12, 290–296.

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