The Burden of Caring for Dependent Older People and the Resultant Risk of Depression in Family Primary Caregivers in Italy

Abstract

Long-Term Care (LTC) for older people in need of care is a critical issue affecting the quality of life of family caregivers (as well as older people), encompassing both negative and positive caregiving experiences. Providing support to family caregivers is essential because they play a crucial role in sharing the societal burden of LTC for the growing frail older population. By presenting the results of a survey carried out in 2019–2020 in Central Italy, this study aims to describe the characteristics and estimate by a multivariate logistic model the correlates of depressive symptoms in 369 primary caregivers of dependent older people. Caregivers are mostly women who provide a high amount of care in terms of weekly hours as a result of insufficient assistance from public or private care services. More than half of the sample show depressive symptoms, indicating a fairly serious situation. Perceived burden is a strong predictor of depression. The findings offer suggestions and policy implications. The fragmentation of the care context should be addressed by allocating sufficient funding to expand the supply of public in-kind services and integrate cash-for-care schemes, thus alleviating the burden and mitigating the negative consequences of care on physical and mental health.

1. Introduction

1.1. Informal Caregivers in Long-Term Care within “Familistic” Welfare Systems

It is estimated that 80% of care in Europe is provided by informal caregivers [1], who are usually described as people closely involved in offering care to older, frail, or dependent people in need of assistance without monetary return [2]. Informal or family caregivers are mostly middle-aged women (wives, daughters, or daughters-in-law) aged between 50 and 70 years [1], and, at the European level, women account for 62% of informal caregivers for older or disabled persons [3]. More than 50% of carers under the age of 65 combine care with employment, and many working carers face some kind of work restrictions (e.g., reduced working hours, quitting work, etc.).

Since a significant proportion of people with dementia (as well as people in need of care) live at home and are informally cared for by family members, family is the primary care resource, especially in the case of severe dementia [4]. As a result, family caregivers play a critical role for people in need of care, providing monitoring and direct assistance as well as helping them in their daily activities, since their dependency increases with the severity of disease. In Italy, 16.4% of the population (about 8.5 million people; EU average: 15.6%), mainly women aged 45 to 55 years old, provide care activities for people with care needs, especially at the family level (about 14.9%, or almost 7.3 million people). It is also estimated that 1.7 million older adults (about two-thirds of whom are aged between 65 and 74 years) provide care and assistance to sick, disabled, or non-self-sufficient people at least once a week [5,6].

The role of informal caregiving has become so important in Italy that it has become a specific characteristic of the national Long-Term Care (LTC) system, defined as a “familistic care regime”. Indeed, in this country, informal care, even supported by paid migrant care workers (MCWs), is the main pillar of care [7,8]). These aspects, as well as the fact that Italy is the oldest country in Europe (with 23.2% of its population aged 65 or over in 2020; EU average: 20.6%), are the main reasons why the present study is focused on the Italian context, where it is interesting to analyze the presence and the correlates of depressive symptoms in family caregivers of dependent older people, considering that the bulk of care for older persons in this country is provided by families.

The high involvement of families in the care path is due to the high fragmentation and low formal provision of care. In fact, only 6% of Italian older people are beneficiaries of residential or home care services [9]. Cash-for-caring schemes remain the main policies for supporting care at the local or national level. Almost 12% of Italians aged 65 and over receive the national cash-for-care scheme (i.e., the “companion allowance/indennità di accompagnamento”; 522.10 euros per month in 2021), outnumbering users of in-kind LTC services by almost two to one [10]. Moreover, the annual per capita expenditure on social interventions and municipal services for older people was 95 euros in 2017 [11]. Despite the relevance of informal caregiving among EU countries, Italy is one of the few that does not have a national law that legally recognizes and supports informal caregivers [12]. However, in Italy, a national fund to enhance and valorize caregiving activities was established by the budget laws of 2018 and 2021, allocating 20 million euros per year for each of the three years of 2018–2020 and 30 million euros per year in the following 2021–2023 three-year period [13].

1.2. Consequences Related to Providing Care and Informal Caregivers’ Supporting Needs

The low incidence of formal LTC provided to older people in need of care is a critical issue affecting the quality of life of family caregivers (and that of older persons), encompassing both negative and positive caregiving experiences [14]. Caring for people with LTC needs involves several tasks, including personal care and hygiene, housekeeping, administering medication, managing finances, emotional support, etc. [15]. The literature underlines how all these commitments have an impact on the lives of caregivers (particularly women), negatively affecting their health, emotional, physical, social, economic, and financial conditions [16,17,18]. Regarding the impact on health, 80.3% of female caregivers in Italy feel tired, 63.2% do not get enough rest, 45.3% say they suffer from depression, and 26.1% often get sick [19]. In Europe, the Italian Long-Term Care system is one of the most family-based care models, characterized by a high demand for care provided almost informally by relatives and friends [8].

The caregiver burden is considered to be one of the most important predictors of negative outcomes from home care situations [20,21]. In fact, the WHO’s guidelines on integrated care for older people [22] strongly recommend providing support to informal caregivers, particularly primary caregivers, who are considered to be at a higher risk of psychological distress and depression.

Previous research has demonstrated that the negative aspects of family caregiving to older relatives are associated with depression, especially for dementia caregivers [23]. Informal caregivers of relatives with dementia very often also experience high levels of anxiety, stress, morbidity, physical problems, low quality of life [24,25], difficulties in social life and in labor market participation, or in reconciling paid work and care duties [19,26,27]. According to the above, informal caregivers of people with dementia are considered to be “hidden secondary patients” [28]. The literature also highlights how living with people with dementia leads to more time spent on caregiving [29,30] and a higher risk of caregiver burden [31]. Therefore, the first research question of this study was to assess the correlates of depressive symptoms of our sample of primary caregivers of dependent older people and to highlight if socio-demographic characteristics, as well as the other variables considered in the model, will draw a caregiver’s profile, reflecting the characteristics of the Italian LTC system.

Moreover, a study detected that informal carers’ health conditions seem to be worse in Italy than in other countries [32]. This is consistent with the results of a recent study, which underlined how dementia care in Italy is a familistic issue assigned to a spouse or to a cohabiting son, confirming these assumptions: in this country, informal carers spend more than six hours a day caring for people with dementia. Furthermore, studies indicate that the impact of care may vary according to the care relationship [33]; for example, spousal carers in comparison with other care providers tend to be older, less prone to ask for help due to the expectations connected to their role, and, thus, less supported by family and friends [34], while on the contrary, adult children seem to be more willing to receive formal and informal support from others and to share caregiving responsibilities.

In light of this and according to the considerations expressed by Pinquart and Sörensen [33], who underlined that interventions and services should be targeted by sub-groups of caregivers, because the intensity of care can differ, one of the aims of this study was to verify if there are effective differences between spouses and children in terms of amount of care provided and the use of formal and informal support sources.

Support received from care professionals, support from family members, and availability of services are strongly correlated to the intensity of care provision by the caregiver [35].

Moreover, carers’ perceived support may help reduce their stress. Support from intimate social relationships may positively affect caregivers’ psychological well-being, even if they do not receive formal support, thus lessening the burden [36]. However, support from family and friends is not always enough to help carers maintain their resilience if the support provided does not match their requirements [37]. Lopez Hartmann et al. [38] found a positive association between feeling dissatisfied with the support provided by family and friends and the perceived burden among the informal carers of frail older people with various levels of impairment, thus confirming the importance of the perceived adequacy of support in decreasing caregiver burden.

On the basis of these considerations, the question we asked in our study was whether and at what extent Italian caregivers, within the familistic system described above, feel supported both by formal services and by informal actors, such as family, friends, and others, and if their perception of being or not being supported affects their state of mental health, thus adding a piece of information still missing in the familistic welfare system panorama, declared by many to be in crisis and disconnected from the real needs of those concerned [7,8,9]. We also want to explore if the perception of the received support is different in the two main groups of caregivers, that is, spouses and children.

Another aspect highlighted in the literature is that the caregiving experience can even have positive aspects on the development of positive feelings, such as subjective satisfaction with life and self-esteem [39,40]. The positive psychology perspective [41] highlighted the advantages of positive emotions in spouse caregiving, including distress buffering, stress mediation, better quality of life and well-being, and finding a sense of purpose. Nevertheless, it was highlighted that the care context and motivation of the different types of caregivers may cause differences in care evaluation [34]. Based on these considerations, in our study, we asked to what extent Italian caregivers, within the family system described above, have positive feelings on caregiving and, by using the COPE index, if there is an effect on their mental health. We also want to see if the perception is different in the two main groups of caregivers, namely spouses and children.

Thus, results may contribute to widening the perspective of the caregiving burden, while also permitting a broader knowledge base to help professionals collaborate more effectively with family carers and provide targeted interventions to enhance positive experiences in caregiving.

Considering the previous literature, the objective and subjective burdens affecting caregivers’ health may vary in relation to their socio-demographic characteristics as well as to the amount of care provided and the LTC services supply. In this perspective, a deeper knowledge of this complex intertwining of factors may help policy makers and local service managers to design more targeted interventions [23,32]. This is particularly important in a familistic welfare system, where families still have the main responsibility for the provision of care.

1.3. Aim of the Study

Based on the above, the study presents the results of a survey carried out in the Marche Region (Central Italy) between November 2019 and March 2020. The aim was to assess the correlates of depressive symptoms in the primary caregivers of dependent older people.

To broaden the perspective, the study’s goal was to explore how the caregivers’ characteristics and the burden of care are associated to depressive symptoms, providing a separate profiling for caregivers with/without depressive symptoms.

The specific aims were:

(1)

to explore to what extent primary caregivers are at risk of depression;

(2)

to identify the correlates of depression;

(3)

to describe the characteristics of the caregivers with/without depressive symptoms and their use of services;

(4)

to describe the experiences of caregiving of the children and spouses subgroups.

Recent literature has emphasized how healthcare sustainability strategies must employ a multi-perspective approach based on the structure, management, and prevention of care issues [42,43]. Other authors highlighted how studies on practices and/or case studies contribute significantly to sustainable health system strategies [44,45]. In this respect, this study promotes a better understanding of the risk of depressive symptoms in caregivers by providing data that can be used to create and develop preventive policies and interventions to enhance the resilience and health of primary caregivers in Italy and Europe.

2. Materials and Methods

2.1. Recruitment of the Sample

This article draws on baseline data from the study “The perspective of older people with LTC needs and their family caregivers in the Marche region” [46]. As mentioned above, Italy is the oldest country in Europe, and in this context, the Marche Region may be considered representative of (a) the ageing population in the Italian territory (with a greater presence of the population aged 75+ compared to the national average: 13.4% vs. 11.7% in 2020); (b) a high dementia presence, since it is estimated that about 20,000 people living in this region suffer from this illness, equal to 14.2 people per 1000 residents, the highest level in Italy (the national average is 9.3).

The goal of the study was to reach out to the Marche Region’s non-self-sufficient elderly population to assess their satisfaction (and that of their families/caregivers) with existing public interventions and social-health services for supporting their care needs. The sample of the population over 75 years with severe limitations in performing ADL activities was estimated and stratified by age (using three groups: 75–79, 80–84, and 85+) and gender. The resulting data were then used as a basis to determine the number of respondents to be interviewed.

Potential participants were asked two pre-screening questions to determine their eligibility for the survey. The first question asked whether they received a care allowance for dependent older people, i.e., the previously mentioned “companion allowance” (“indennità di accompagnamento”), a cash allowance program managed by the National Institute of Social Security (INPS) for those with severe disabilities. Those receiving the allowance automatically met the inclusion criteria, while those who did not were asked a series of questions to determine their ability to carry out Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL). ADL questions were based on the Barthel Index. Potential participants who scored less than 9 on the ADL–IADL scale (range 0–12) were eligible to participate, and their primary caregivers were also invited to take part in the survey. The primary caregiver (i.e., the family caregiver most involved in providing daily support) was asked to respond to the questionnaire concerning informal care-related issues.

Pensioner trade unions in the Marche region of Italy (SPI-CGIL—Sindacato Pensionati Italiani-Confederazione Generale Italiana del Lavoro, FNP-CISL (Federazione Nazionale Pensionati-Confederazione Italiana Sindacati Lavoratori), and UILP (Unione Italiana Lavoratori Pensionati)) were used to identify and recruit participants. The survey was conducted in person by trade union staff who received ad hoc training on how to administer the data collection tool.

2.2. Study Variables

In addition to caregivers’ basic socio-demographic characteristics (age, gender, marital status, and occupational status), the following caregiving variables were measured: carer–elder relationship and cohabitation status, duration of caregiving in months, and the hours of caring for the care receiver per week.

Information on the psychological status of caregivers was gathered by means of the World Health Organization Five Well-Being Index (WHO-5) [47], a short self-administered measure of well-being, which has been proven to be a valid and reliable tool for detecting depression in a wide variety of settings and population groups [48,49]. It consists of five statements focusing on the individual’s experience of well-being over the last two weeks: “I have felt cheerful and in good spirits” (1), “I have felt calm and relaxed” (2), “I have felt active and vigorous” (3), “I woke up feeling fresh and rested” (4) and “My daily life has been filled with things that interest me” (5), which respondents were asked to answer according to a 6-point scale (e.g., from 0 = at no time to 5 = all of the time). The total raw score (ranging from 0 to 25) was multiplied by 4 to obtain a percentage score between 0 (the worst imaginable well-being) and 100 (the best imaginable well-being). A cut-off score of ≤50 is recommended when screening for clinical depression. A score between 29–50 suggests the presence of mild depressive symptoms, while a score of 28 or below is indicative of depression. Scores above 50 indicate a moderate to high state of well-being.

The subjective perception of burden was obtained by means of the 4-item version of the Zarit Burden Interview [50] to obtain a rapid identification of burden. Respondents were asked: “Do you feel that you don’t have enough time for yourself because of the time you spend with your relative?” (1); “Do you feel stressed between caring for your relative and trying to meet other work/family responsibilities?” (2); “Do you feel strained when you are around your relative?” (3); “Do you feel uncertain about what to do with regards to your relative?” (4). All questions were answered as “never” (0), “rarely” (1), “sometimes” (2), “quite frequently” (3), or “nearly always” (4). The cut-off for this screening version was a score of eight.

The COPE (Carers of Older People in Europe) assessment tool [51] was utilized to briefly give a first assessment of caregivers’ needs (the carer’s subjective assessment of his or her situation). It is composed of 15 items: a 6-item scale measuring the negative impact of caregiving and a 5-item scale measuring the positive value of caregiving. An additional 3 items measure aspects of the quality of support, and 1 item measures financial burden. The final score corresponds to the sum of the scores of the individual items. The range is from 15 (maximum difficulty) to 60 (minimum difficulty).

Social support was assessed through two items adapted from the Social Restriction Scale [52]. Respondents were asked: “Is there anybody who could step in to help the care receiver if you were to fall ill?” and “If you needed a break from your carer role, is there anyone who could look after the care receiver for you?”. The response options for both items were “Yes, I could find someone quite easily” (1), “Yes, I could find someone but with some difficulty” (2), and “No, there is no one” (3). The internal consistency of the scale comprised of these two items was good (α = 0.89). Higher total scores on this measure indicate greater social restrictions.

A single item assessing the carer’s general health status, with responses recorded on a 5-point scale anchored by “excellent” (1) and “poor” (5) for the preceding two weeks, was selected from the 36-item Short-Form Health Survey [53].

The care receiver’s level of dependency was assessed through the 10-item Barthel Index [54]. Higher total scores on this tool mean greater independence in activities of daily living.

The care receiver’s level of cognitive impairment was assessed by means of the Short Portable Mental Status Questionnaire [55].

Use of services: respondents were asked to fill in a list of private or public services they use/do not use.

The type of assistance given to the care receiver: respondents were asked to indicate the weekly amount of assistance provided to the care receiver by themselves and by other formal/informal helpers.

2.3. Statistical Analysis

Descriptive statistics were calculated in order to describe the primary caregivers’ and care receivers’ characteristics and the use of public and private services.

Our outcome of interest was the presence or absence of depressive symptoms in the caregiver, expressed through the “WHO” scale. A univariate analysis of variables was conducted to compare data between groups of primary caregivers with or without depressive symptoms (

Table 1. Characteristics of the caregivers and care recipients in total and between the with and without depressive symptoms groups.

	All	Good Well-Being, No Depressive Symptoms	Mild-to-Severe Depressive Symptoms	p
		Score > 50	Score ≤ 50
	n = 369	n = 161	n = 208
Caregivers Characteristics
Gender (female)	240 (65.0)	94 (58.4)	146 (70.2)	0.018
Age (years)	63.3 ± 11.4	61.0 ± 11.1	65.0 ± 11.3	0.001
Kinship				0.028
Spouse/Partner	79 (21.4)	23 (14.3)	56 (26.9)
Son/Daughter	227 (61.5)	104 (64.6)	123 (59.1)
Brother/Sister	12 (3.3)	5 (3.1)	7 (3.4)
Other relatives	46 (12.5)	26 (16.1)	20 (9.6)
Other	5 (1.4)	3 (1.9)	2 (1.0)
Marital status				0.742
Married/cohabiting	258 (69.9)	112 (69.6)	146 (70.2)
Widower	19 (5.1)	7 (4.3)	12 (5.8)
Divorced/Separated	35 (9.5)	14 (8.7)	21 (10.1)
Unmarried	57 (15.4)	28 (17.4)	29 (13.9)
Education				0.057
Less than 5 years	6 (1.6)	2 (1.2)	4 (1.9)
Primary school (5 years)	57 (15.4)	15 (9.3)	42 (20.2)
Middle School (8 years)	98 (26.6)	45 (28.0)	53 (25.5)
High/secondary school (13 years)	162 (43.9)	79 (49.1)	83 (39.9)
Post-secondary diploma (more than 13 years)	46 (12.5)	20 (12.4)	26 (12.5)
Caregiving duration (months)	61.3 ± 78.6	59.5 ± 87.3	62.8 ± 71.2	0.695
Average weekly care (hours)	61.2 ± 54.4	47.9 ± 47.6	71.8 ± 57.2	<0.001
Residence/cohabitation in the same house	206 (55.8)	75 (46.6)	131 (63.0)	0.002
Difficulty to find support in case of illness	50 (13.6)	14 (8.8)	36 (17.3)	0.019
Perception of burden				<0.001
Low ≤4	69 (18.7)	49 (30.4)	20 (9.6)
Medium–low 5–8	139 (37.7)	73 (45.3)	66 (31.7)
Medium–high 9–12	126 (34.1)	33 (20.5)	93 (44.7)
High ≥13	35 (9.5)	6 (3.7)	29 (13.9)
COPE Index	44.3 ± 6.1	46.9 ± 5.0	42.2 ± 6.1	<0.001
Health self-assessment	3.4 ± 0.8	3.0 ± 0.8	3.7 ± 0.7	<0.001
Currently employed	115 (31.5)	48 (30.4)	67 (32.4)	0.685
Care recipients’ characteristics
Gender (female)	266 (72.1)	121 (75.2)	145 (69.7)	0.248
Age (years)	85.9 ± 6.2	86.0 ± 6.5	85.9 ± 6.0	0.971
Presence of the Migrant Care Worker	163 (44.2)	70 (43.5)	93 (44.7)	0.813
Household net monthly income				0.545
<1000 EUR	17 (4.9)	9 (6.0)	8 (4.1)
1000–1500 EUR	90 (25.9)	43 (28.5)	47 (24.0)
1500–2000 EUR	84 (24.2)	37 (24.5)	47 (24.0)
2000–2500 EUR	73 (21.0)	28 (18.5)	45 (23.0)
2500–3000 EUR	51 (14.7)	18 (11.9)	33 (16.8)
>3000 EUR	32 (9.2)	16 (10.6)	16 (8.2)
Barthel Index (Dependency level)				0.150
Total dependency 0–20	79 (21.8)	35 (22.0)	44 (21.7)
Severe dependency 21–60	220 (60.8)	91 (57.2)	129 (63.5)
Moderate dependency 61–90	60 (16.6)	30 (18.9)	30 (14.8)
Low dependency 91–99	3 (0.8)	3 (1.9)	0 (0.0)
Type of service used
Outpatient public
General Practitioner	335 (90.8)	148 (91.9)	187 (89.9)	0.505
Specialist doctor (e.g., geriatrician)	160 (43.4)	66 (41.0)	94 (45.2)	0.420
Nurse	32 (8.7)	17 (10.6)	15 (7.2)	0.257
Rehabilitation therapist	42 (11.4)	18 (11.2)	24 (11.5)	0.914
Social worker	18 (4.9)	10 (6.2)	8 (3.8)	0.296
Home-based public
Nurse	129 (35.0)	54(33.5)	75 (36.1)	0.615
Rehabilitation therapist	65 (17.6)	31 (19.3)	34 (16.3)	0.467
Personal care	16 (4.3)	6 (3.7)	10 (4.8)	0.613
Home care	14 (3.8)	8 (5.0)	6 (2.9)	0.299
Meals on wheels	3 (0.8)	0 (0.0)	3 (1.4)	0.126
Transportation	70 (19.0)	23 (14.3)	47 (22.6)	0.043
Day center	12 (3.3)	5 (3.1)	7 (3.4)	0.889
Private
Specialist doctor (e.g., geriatrician)	92 (24.9)	38 (23.6)	54 (26.0)	0.603
Nurse	14 (3.8)	6 (3.7)	8 (3.8)	0.953
Rehabilitation therapist	18 (4.9)	8 (5.0)	10 (4.8)	0.943
Domestic worker	30 (8.1)	10 (6.2)	20 (9.6)	0.235
Temporary residential care	6 (1.6)	1 (0.6)	5 (2.4)	0.179
SPMSQ corrected				<0.001
No/low deterioration	181 (50.0)	99 (63.1)	82 (40.0)
Moderate deterioration	40 (11.0)	15 (9.6)	25 (12.2)
Severe deterioration	141 (39.0)	43 (27.4)	98 (47.8)

).

For categorical variables, data were reported as absolute numbers and percentages, while continuous variables were reported as means and standard deviation. The Chi-square test was used to compare categorical variables, and the Student T-test was utilized for continuous variables.

In order to obtain an adjusted estimate of the correlates of depressive symptoms in caregivers, a binary multivariate logistic model was run, with the outcome represented by “who_bin” (0 = no depressive symptoms; 1 = depressive symptoms). Firstly, we included in the fully adjusted model all the significant variables from the literature and from the univariate results, while after, using the stepwise method, we excluded some of them for the final model. The stepwise method was chosen with the aim of finding the best predictors to include from a larger set of potential variables. It also avoids problems of multicollinearity between the variables.

The number of weekly hours of assistance provided by the primary caregiver was calculated as a percentage of the total number provided by type.

In order to compare the characteristics of the two main groups of primary caregivers, a subgroup analysis was performed for adult children and spouses in relation to the perception of health and the perception of burden, support in the case of illness, and the caregiving experience for each item of the COPE instrument.

The care receiver’s level of cognitive impairment was used to describe services that were not provided but would be required by the primary caregiver.

A p-value < 0.05 was considered statistically significant.

The statistical analysis was carried out using SPSS for Win V24.0 (SPPS Inc., Chicago, IL, USA).

3. Results

3.1. Characteristics of the Primary Caregivers

Most of the caregivers were women (65%), with an average age of 63.3 years. A total of 61.5% of these were children of the care receiver, 21.4% were spouses, 12.5% were other relatives, and 3.3% were siblings. The majority were married (69.9%) and had a middle school (26.6%) or high school diploma (43.9%). Family income was mainly distributed between medium–low (25.9%), medium (24.2%), and medium–high (21%). They were committed to providing weekly hours of assistance equal to 61.1 on average, and 55.8% of cases lived with the recipient. Only 13.6% felt supported in the case of illness. A total of 9.5% of respondents perceived a high level of care burden, 34.1% medium–high, 37.7% medium–low, and 18.7% perceived a low level of care burden. The carers’ self-assessed general health score was quite low, i.e., 3.4 ± 0.8. A total of 31.5% of caregivers were currently employed.

3.2. Care Receivers’ Characteristics

Care receivers were mostly women (72.1%), with an average age of 85.9 years. Most had a severe level of dependence (60.8%), 21.8% were totally dependent, and 16.6% were moderately dependent. A total of 50% had low or no cognitive impairment, 39% high, and 11% had moderate cognitive impairment, respectively.

A total of 90.8% used public general practitioners (43.3% public and 24.9% private health professionals). Public home assistance was used by 4.3% for personal care, 3.8% for house cleaning, 0.8% for home meal deliveries, and 19% for dedicated public transport. Public home nurses and physical therapists were used by 35% and 17.6%, respectively. Care receivers were also assisted by a private family assistant in 44.2% of cases.

3.3. Caregivers’ Depressive Symptoms

When comparing the two groups of primary caregivers with and without depressive symptoms (Table 1), the group with depressive symptoms had a higher proportion of women (26.9% vs. 14.3%) and spouses (70.2% vs. 58.4%) with a higher average age (65.0 ± 11.3 vs. 61.0 ± 11.1), a higher number of hours of weekly care (71.8 ± 57.2 vs. 47.9 ± 47.6), more frequent cohabitation (63.0% vs. 46.6%), greater difficulties in finding support (17.3% vs. 8.8%), a greater perception of a medium/high burden (44.7% vs. 20.5% and 13.9% vs. 3.7%, respectively), a lower COPE index score (42.2 ± 6.1 vs. 46.9 ± 5.0), and poorer health self-assessment (3.7% ± 0.7 vs. 3.0% ± 0.8).

3.4. Experience of Care by Kinship

As shown in

Table 2. Caregiving burden and experience by kinship.

	Total	Children	Spouses	p
	N = 306	N = 227	N = 79
Perception of health (range 1–5 excellent to poor)	3.40	3.36	3.67	0.003
Perception of burden				0.011
≤4	56 (18.3%)	44 (19.4%)	12 (15.2%)
5–8	118 (38.6%)	96 (42.3%)	22 (27.8%)
9–12	101 (33.0%)	70 (30.8%)	31 (39.2%)
≥13	31 (10.1%)	17 (7.5%)	14 (17.7%)
Support in case of illness	41 (13.4%)	27 (11.9%)	14 (17.7%)	0.190
COPE
Are you able to fulfill your role as an assistant satisfactorily?				0.843
Always/often	269 (87.7)	199 (87.6)	70 (88.5)
Sometimes/never	37 (12.2)	28 (12.4)	9 (11.5)
Do you find assisting too challenging?				0.004
Always/often	159 (51.8)	129 (56.6)	30 (38.0)
Sometimes/never	147 (48.2)	98 (43.4)	49 (62.0)
Does providing care have a negative effect on your physical health?				0.001
Always/often	230 (75.1)	182 (80.1)	48 (60.8)
Sometimes/never	76 (24.9)	45 (19.9)	31 (39.2)
Does providing care cause you financial difficulties?				0.169
Always/often	248 (80.9)	188 (82.7)	60 (75.6)
Sometimes/never	58 (19.1)	39 (17.3)	19 (24.4)
Do you feel “trapped” in your role as a caregiver?				0.017
Always/often	211 (69)	165 (72.2)	46 (58.2)
Sometimes/never	95 (31.0)	62 (27.3)	33 (41.8)
Do you feel adequately supported by your friends/neighbors?				0.029
Always/often	111 (35.6)	73 (32.2)	38 (46.1)
Sometimes/never	195 (64.4)	154 (67.8)	41 (53.9)
Do you find it worthwhile providing care?				0.787
Always/often	292 (95.4)	217 (95.6)	75 (94.8)
Sometimes/never	14 (4.6)	10 (4.4)	4 (5.2)
Do you have a good relationship with the person you care for?				0.560
Always/often	287 (93.8)	214 (94.2)	73 (92.4)
Sometimes/never	19 (6.2)	13 (5.8)	6 (7.6)
Do you feel adequately supported by health and social services (public, private, or voluntary)?				0.338
Always/often	100 (31.6)	71 (30.0)	29 (35.9)
Sometimes/never	206 (68.4)	156 (70.0)	50 (64.1)
Do you feel that you are appreciated for the care provided?				0.035
Always/often	233 (75.8)	166 (72.8)	67 (84.6)
Sometimes/never	73 (24.2)	61 (27.2)	12 (15.4)
Does caring have a negative effect on your emotional balance?				0.203
Always/often	82 (26.6)	56 (24.7)	26 (32.1)
Sometimes/never	224 (73.4)	171 (75.3)	53 (67.9)
Overall, do you feel adequately supported in your role as assistant caregiver?				0.460
Always/often	193 (63)	146 (64.2)	47 (59.5)
Sometimes/never	113 (37.0)	81 (35.8)	32 (40.5)

, 87.7% of the primary caregivers felt they were fulfilling the role of assistant satisfactorily, 95.4% found assistance worthwhile, 80.9% declared that providing assistance causes financial difficulties, 93.8% stated that they have a good relationship with the people they care for, and 68.4% felt they were only occasionally or never supported by public and private services.

Children, more than spouses, found assistance too challenging (56.6% vs. 38.0%), felt their health was being affected negatively (80.1% vs. 60.8%), and felt trapped (72.2% vs. 58.2%).

Fewer of them felt adequately supported (32.2% vs. 46.1%) and appreciated (72.8% vs. 84.6%) with respect to spouses.

3.5. Correlates of Depressive Symptoms in Caregivers

A logistic model (

Table 3. Correlates of depressive symptoms in caregivers.

Variable	Fully Adjusted Model OR (95%CI)
Weekly hours of assistance	1.005	(1.000–1.010)
Perception of burden (reference: ≤4)	-	-
5–8	2.26	(1.16–4.41)
9–12	6.43	(3.16–13.1)
≥13	9.03	(3.07–26.6)
Living in	0.74	(0.43–1.26)
SPMSQ (REFERENCE: No/slight deterioration)	-	-
Moderate deterioration	2.02	(0.92–4.47)
Severe deterioration	1.93	(1.05–3.55)

) was applied. Significant variables indicated by the literature and from the univariate results in Table 1 were inserted into the model, i.e., weekly hours of assistance, perception of burden, living together, the care receiver’s cognitive impairment, support in the event of illness, kinship, COPE index, health self-assessment, and transportation.

The support in the event of illness, kinship, COPE index, health self-assessment, and transportation variables were excluded from the final model by the stepwise method.

The model shows that, when all the variables were taken into account, the caregiver’s estimate of the risk of depressive symptoms rose by 0.5% on average as the weekly hours of assistance increased, from 126% to 803% as the perceived burden of care increased, and, at the limits of significance, by about 100% as cognitive impairment increased.

The number of weekly hours of care provided by the primary caregiver on the total weekly hours provided was equal to 62% for personal care and hygiene, 63.9% for domestic mobility, 67.9% for surveillance, 61.5% for housework (including cooking), and 67.4% for extra-domestic mobility (including transportation and errands) (Figure 1).

The majority of caregivers (72%) expressed dissatisfaction with the lack of home care services (

Table 4. Non-use of services.

	Total	No/Low Deterioration	Moderate/Severe Deterioration	p
Are there any services that you or the older person do not use, but which you would need?	120 (33.4%)	57 (31.7%)	63 (35.2%)	0.479
SERVICES NOT USED
Home care	85 (72.0%)	42 (76.4%)	43 (68.3%)	0.328
Assisted transportation	23 (19.5%)	12 (21.8%)	11 (17.5%)	0.551
Aggregation/day/residential (e.g., nursing homes) centers	18 (15.3%)	4 (7.3%)	14 (22.2%)	0.024
Private care worker	159 (43.9%)	60 (33.1%)	99 (54.7%)	<0.001

) and (43.9%) of a private care worker, which are especially important for those caring for the cognitively impaired elderly. Other reported deficiencies were assisted transportation (19.5%) and daycare centers (particularly for those impaired).

4. Discussion

This study describes the characteristics of a sample of community-dwelling dependent older people’s primary caregivers. The results confirmed the caregivers’ profile identified in the literature for Italy [5,12], which consisted mainly of women who provide a high amount of care in terms of weekly hours of assistance to recipients, indicating insufficient help from public or private home care assistance, as well as the fact that the assistance provided causes financial hardship to the family. More than half showed mild to severe depressive symptoms.

The average age of our sample was around 60 years old. A total of 65% were women, and about 30% were employed in the labor market, so they were potentially overexposed to stress due to multitasking [56].

They did not benefit from home-based public services (e.g., personal care was used by 4.3% and home care by 3.8%) and respite services (daycare centers were used by 3.3%), and they claimed for them. Almost half of them paid for home and care help provided by MCWs (known as “badanti”), as many families in Italy consider their support to be a “pillar” of the Italian welfare and LTC systems, compensating for the inadequate provision of public care support services.

The underuse of public home services is a fact that concerns the whole Italian territory, the reasons for which, as illustrated in a recent report [57], reside in the selective and stringent criteria for accessing the services (e.g., a certain degree of disability, lack of family caregivers, and specific health certification), complex bureaucratic procedures (e.g., income certification), and the high costs involved (participation fees to be paid for the service, generally identified on the basis of income, are very high in some municipalities). Regarding daycare centers, in addition to the problem that the service is distributed unevenly across the Italian territory, the above report highlighted the need to retrain the network with innovative interventions in the direction of improving the response capacity for dementia.

Children predominated among caregivers across the country, while spouses made up approximately 20% of the sample, lower than the national average, which is increasing (from 25.2% of the total in 2006 to 37% in 2015), especially if the care recipient is male [19].

In the univariate analysis, more than half of the sample showed depressive symptoms, thus denoting a fairly serious situation, as depression is well known for its negative effects on quality of life [58]. Consistent with previous studies, some demographic variables were associated with a situation of distress for caregivers [59]. The older ones, spouses, those who felt their health is deteriorating, those cohabiting, as well as the severity of dementia in the care receiver were more likely to present depressive symptoms. It is important to note that more than half of the children presented depressive symptoms, thus suggesting the need for attention to caregivers by subgroups, with special regard to married women [33,60].

According to this study’s findings, the perceived burden is a strong predictor of depression in primary caregivers, with symptoms of depression increasing from 126% to 803% as the burden of care increased. Depression was also associated with the care receiver’s level of severity of cognitive disease, which the literature shows is particularly burdensome, confirming this risk to be particularly high for dementia caregivers compared to those caring for the frail elderly [23].

In 2019, Riffin and colleagues, analyzing the multifactorial aspect of caregiving [61], underlined that the caregiving burden is affected by the health status of caregivers [62], the cognitive and physical functioning of the care receivers [63], and the relationship between the caregiver and the care recipient [64]. Caregiving entails a wide range of tasks that are vastly different from one another. However, the literature highlights how each task impacts the individual care burden. For example, providing Activity of Daily Living (ADL) or Instrumental Activity of Daily Living (IADL) assistance, as well as the provision of health system logistics or nursing tasks, is directly correlated to the caregiver’s care burden [65]. Caregivers often feel unprepared for their care responsibilities, lack a personal space in their lives, and struggle to find time for leisure [66]. This is especially true for in-home caregivers, such as spousal caregivers and dementia patient caregivers.

The model showed that intensity of care is an independent risk factor, with the increase in weekly hours of assistance raising depressive symptoms by 0.5% on average. This is consistent with previous studies reporting a decline in mental health above 10 h of care provided per week and a twofold increase in psychiatric symptom scores in those providing care for more than 20 h per week [67]. Knowing the reality of non-self-sufficiency in Italy, the leading role assumed by primary caregivers in all areas of assistance, ranging from housework to personal hygiene and from mobility to vigilance, is not surprising, with family members providing up to nearly 70% of total hours of assistance.

A recent study highlighted how “working carers”, particularly women, spend more time in informal care after retirement [68], increasing the risk of negative effects on their health, such as depressive symptoms, as a result of the care burden. The results of this study emphasize the detrimental impact of the care burden on primary caregivers, and they stress the importance of giving informal care appropriate attention and support in order to remodel and stimulate innovation in LTC [69]. The 2019 pandemic era has particularly exacerbated the aspects and issues that existed prior to the outbreak and which created a new set of challenges for caregivers. For example, the fact that women made up about 80% of carers in a European survey is in line with the well-documented and unequal distribution of caring responsibilities and roles between men and women, which also holds true for Italy [70]. Moreover, the pandemic has had a negative impact on several aspects of the lives of European informal caregivers (e.g., social network/participation, quality of life, mental and physical health, and employment status), resulting in an increase in the intensity of many care activities (e.g., emotional support and in-person practical help) and the average number of weekly hours of care provided (+17%). It also emerged that women experienced the most negative consequences of the outbreak compared to men [70]. Furthermore, about 20% of informal carers were unable to balance paid work with care duties, and overall, it is estimated that the number of informal carers has increased by roughly 12% as a result of the COVID-19 outbreak. Thus, the relevance and the crucial role of informal caregiving has been emphasized even more in the current pandemic era. In fact, it has served as a fundamental pillar for providing assistance to frail, disabled, or older people in a context characterized by LTC systems that are highly stressed as a consequence of the health crisis caused by the pandemic.

If family caregivers are the main resource for older, sick, or disabled people in need of care [71], even in pandemic times, it is unclear how to strike a balance between managing and consolidating a community solidarity system that views care activity as a social resource, since many caregivers still perceive the care–work balance as a personal burden rather than a choice [72].

Our study showed that children were especially more likely to find assistance challenging, perceive negative effects on health, and feel unappreciated. They have little informal support and feel trapped. These testimonies describe a situation of discomfort and denial of one’s own needs, capable of generating a psychological burden.

The lack of formal and informal support that emerged is affecting their quality of life, as they are having great difficulty in finding support both from family members and public care services. The majority complained about the lack of home care services, particularly for the cognitive impaired elderly, as well as deficiencies in assisted transportation and daycare centers and the need for a private care worker. As stated by the majority of caregivers participating in this study, a lack of support from health and social services or friends and neighbors may contribute to the perceived burden and depression [38].

As previously discussed, private family assistants (i.e., MCWs) are important support figures. These are hired privately by older people and/or their families to address daily care needs. In this framework, the formal recognition of informal caregivers and MCWs as the real pillars of Italian LTC sustainability strategies is a perspective that, based on the integration and coordination of care paths (formal/informal care), may enable the development and strengthening of comprehensive and innovative policies and services to adequately support these care providers. This could be a possible solution to intervene effectively in the heavy situation that weighs on the daily life of dependent older people’s family caregivers [73].

Finally, from the perspective of caregivers’ motivation, a lower incidence of depression associated with the care burden may derive from a strong sense of purpose [74]. Concerning this aspect, the vast majority of our sample felt they had satisfactorily fulfilled the role of assistant (87.7%), found assistance worthwhile (95.4%), and had a good relationship with those they cared for (93.8%), indicating that satisfaction and motivation were very high despite everything. Cultural factors could be one explanation for this result. A culture of care, characterized by a positive attitude toward family care obligations, as in the Mediterranean culture, influences the perspective of caregiving situations [23].

Delivering interventions that strengthen and maintain feelings of purpose among caregivers are, therefore, useful to improve their well-being [75]. The results suggest that greater feelings of generativity may be a positive aspect of caregiving that might help mitigate some of the adverse consequences of care on health and well-being. Clinical implications were highlighted as self-perceptions of generativity that may help alleviate the caregiver burden and explain why some caregivers fare better than others.

As discussed, the pandemic has not only exacerbated issues facing carers before the outbreak, but it has also generated a new set of challenges, highlighting the need to develop comprehensive and coordinated policies, services, and initiatives to better support them.

Given the prevalence of women among caregivers, more effective gender policies should be promoted to ensure equal opportunities for informal female caregivers in order to facilitate their access to and retention in the labor market through education, training, and lifelong learning; reconciliation measures to validate the skills acquired in caregiving activities; and strengthening initiatives to support a more equitable sharing of care responsibilities between men and women. The usefulness of supporting active ageing opportunities for mature and older caregivers through adequate policies and initiatives should also be taken into consideration. In all the above policy implications drawn from the results of this study, special attention should be paid to informal caregivers of people affected by dementia, as they are the ones who are most exposed to the negative consequences of caregiving (such as depressive symptoms).

The implementation of this ambitious and complex agenda could be sustained by projects and policies funded by the Italian Recovery and Resilience Plan [76], contributing to aligning Italy with the approach and measures envisaged by the forthcoming new European Care Strategy [77].

In recent years, Italian legislation has pushed for improved occupational welfare tools, new or revised policies and welfare tools dedicated to informal care, and attention focused on the LTC needs of cohabiting family members [78]. The development of these innovative policies, although not enough to be considered as a concrete answer to caregiving needs, aims to promote a fundamental change in the strategy supporting caregiving. In parallel, fostering work–life balance policies and measures at both the macro and meso levels also seems to be a priority (i.e., within companies) in order to better sustain working carers in balancing paid work and care duties.

Even though some Italian regions (i.e., Emilia-Romagna, Abruzzo, Campania, and Apulia) have already approved rules, policies, and measures to recognize and support family caregivers, national framework legislation is still needed to recognize caregivers, establish rules for obtaining rights, provide a comprehensive set of supportive measures, and allocate appropriate financial resources in a coordinated manner.

5. Conclusions and Limitation

This study analyzed the presence of depressive symptoms among the primary caregivers of non-self-sufficient older people and the associated variables, based on the results of a survey carried out in Italy. The findings show similarities with evidence from previous literature (e.g., the main determinants of the burden were the amount of caregiving assistance and the patient’s dependency level) and offer suggestions and policy implications to better support informal carers, especially in the Italian context, but also at an international level, in particular in Southern European countries, characterized (as Italy) by a Mediterranean welfare regime [79] and by family-oriented LTC systems [8,80], where informal carers are the main pillars of care.

In Italy, it appears that coordinated interventions and measures to support carers at both the national and local levels are required, including promoting a framework legislation that fully valorizes and supports informal caregivers as a key resource of the welfare and LTC systems, overcoming the fragmentation of the care context and allocating appropriate funds for implementing adequate support policies. It is also crucial to improve the supply of public in-kind services and integrate the available cash-for-care schemes to support caregivers. This might alleviate their care burden and counteract the negative consequences of caregiving on physical and mental health (including depressive symptoms) to improve the well-being of informal caregivers. The above also has specific importance in connection to measures to be implemented using the funds of the Italian Recovery and Resilience Plan.

The importance and key role of informal caregiving has become even more apparent in the current pandemic era, as it has served as a fundamental pillar for providing assistance to frail, disabled, or older people in a context characterized by LTC systems that are highly strained by the consequences of the pandemic’s health crisis. This emphasizes the importance of sharing the knowledge, research findings, and good practices that emerged during the COVID-19 outbreak in order to design and implement even more effective and tailored measures for supporting informal carers at the national and international levels. These interventions must also be pursued in light of the European Commission’s recent pledge to launch and implement “a new European Care Strategy, with a strong gender dimension, taking a holistic and life-long approach to care and envisaging specific measures and actions for supporting carers and to ensure that those receiving care or needing support are best provided for” [77].