Impact of confinement measures due to the COVID-19 pandemic on people living with dementia and their caregivers in Spain.

The COVID-19 pandemic has particularly affected people living with dementia (PLWD) and their caregivers, who have seen their access to social support services and opportunities for socialisation limited. The objective of the study was to explore the impact of COVID-19 on PLWD and their caregivers in Spain. An online survey was conducted between November 27, 2020, and January 19, 2021, that explored compliance with prevention guidelines, changes at the family level and in access to social support services. Instruments were included to estimate levels of anxiety and depression. The survey was answered by 229 people (161 current caregivers, 54 former caregivers, 13 formal caregivers and 1 person with dementia). Analysis of the current and former caregivers showed that they felt well informed, although they find it difficult for PLWD to comply with prevention guidelines. The use of social support services was reduced and the difficulty of access to social and health services increased, there was a negative impact on the economic situation and family relationships, with an increase in perceived overload. In addition, caregivers of PLWD scored above the cut-off points in the tests used to assess depression and anxiety, although the results of the multiple regression analysis do not allow us to conclude that the loss of resources influences the anxiety and depression scores. The negative impact of the pandemic on caregivers of PLWD is verified. It is necessary to adapt social support services and design strategies to maintain the provision of support to these vulnerable groups.

What is known about the topic

The COVID‐19 pandemic has had a profound impact on the entire population, but special attention must be paid to the most vulnerable groups.

Confinement measures for COVID‐19 have been associated with a worsening of cognitive and neuropsychiatric symptoms in people living with dementia.

Social support services are a fundamental part of caring for people living with dementia.

What this paper adds

People living with dementia have difficulty understanding preventive measures, especially the need to maintain social distance.

Social support service usage has decreased significantly since the start of the pandemic.

Anxiety and depression levels of caregivers are higher than those obtained outside the context of the pandemic.

INTRODUCTION

On March 11, 2020, the World Health Organization (WHO) declared the epidemiological situation caused by the COVID‐19 disease as a global pandemic (WHO, 2020). Europe was at the epicentre of the pandemic at that point. The characteristics of the virus and the high risk of transmission made it necessary to implement unprecedented preventive measures in Spain. According to Royal Decree 463/2020 of March 14, the first state of alarm was declared and national quarantine measures were introduced establishing a home confinement of the entire population, which was maintained for 99 days. This state of alarm lasted until June 21. At that time, the virus was still active, but the decrease of pressure on hospital systems allowed more flexible preventive measures. On October 25, the second state of alarm was declared that would last for another 6 months. Preventive measures were more flexible during this period, with no generalised confinement, although social gatherings, leisure activities and night‐time movement remained limited. In vulnerable places, such as social and health centres, the measures were more restrictive, establishing contingency plans that limited visits and outings by residents.

Various studies worldwide show how the pandemic and preventive measures have a negative effect on the mental health of the population (Kumar & Nayar, 2021). Studies on the psychological impact in the early phase of the COVID‐19 outbreak found that around a third of respondents reported moderate to severe anxiety levels (Wang, Pan, et al., 2020). Similar results are obtained in studies carried out in other countries, finding elevated rates of anxiety and depression around 20% of the population during the period of home confinement (Qian et al., 2020; Shevlin et al., 2020; Valiente et al., 2020), maintaining anxiety levels after confinement and increasing levels of depression and stress (Rodríguez Rey et al., 2021). Those who already had symptoms before the pandemic constitute a special risk group for the development of possible anxious and depressive disorders, so it is necessary to pay special attention to the most vulnerable groups (Brooks et al., 2020).

People living with dementia (PLWD) and their informal caregivers are one of the vulnerable groups particularly affected by the pandemic and the social restrictions implemented. PLWD have cognition and functional capacity affected and are characterised by presenting a particular difficulty in adapting to environmental changes and stressors, making them especially vulnerable and dependent on their family members and caregivers (Migliaccio & Bouzigues, 2020; Wang, Li, et al., 2020). PLWD may find it more difficult to understand the situation and to comply with social norms and preventive guidelines (Brown et al., 2020; Wang, Li, et al., 2020). On the other hand, the informal caregivers of PLWD already handled, prior to this crisis, chronic stress, which increased the risk of suffering from various physical and emotional problems, especially anxiety and depression (Pinquart & Sörensen, 2003; Schulz & Sherwood, 2008). In the context of a pandemic, caregivers of PLWD must face double stress: the psychological impact of the pandemic and confinement on a personal level, as well as the care of the person with dementia, which is supposed to be more complicated in this novel context (Brown et al., 2020; Carcavilla et al., 2021; Greenberg et al., 2020).

The care of a PLWD very often requires the use of social support services provided by public or private entities, such as day centres, residential centres, support groups and other resources that provide therapeutic services and activities for the PLWD and their caregivers. These types of social support services have been associated with higher levels of well‐being and quality of life (Dam et al., 2016; Willis et al., 2018). During the confinement, social support services, such as day centres, temporarily closed. After subsequent reopening, centres had to reorganise normal operation to adapt to the circumstances. Limited access to these social support services and the interventions they offer implies greater isolation and decreased social participation, lack of physical exercise and significant activities for PLWD (Brown et al., 2020). These changes affect the daily routine of both the PLWD and their caregivers and can contribute to an increase in caregiver burden and a worsening of their emotional state (Giebel et al., 2021; Greenberg et al., 2020). Different studies show a correlation between confinement due to COVID‐19 and a worsening in cognitive performance and functional capacity of PLWD, as well as with the appearance and worsening of neuropsychiatric symptoms (Manca et al., 2020).

Following the study by Giebel et al. (2021), we set out to examine the social and health impact of the COVID‐19 pandemic on PLWD and their caregivers during the second wave in the Spanish context. Specifically, the authors were interested in: (a) knowing to what extent PLWD and their family caregivers have felt informed about COVID‐19; (b) examining compliance with self‐care guidelines and possible specific difficulties of the PLWD and their caregivers to carry them out; (c) exploring changes at the economic and family level; (d) estimating anxiety and depression levels in informal caregivers; and (e) assessing the impact of the measures derived from the health emergency caused by COVID‐19 on access to social support services. In relation to the study by Giebel et al. (2021), in addition to the differences in the context and timing of the pandemic during which the research was conducted, this study added the analysis of self‐care and the difficulties that people with dementia and their caregivers may have experienced in its application.

MATERIALS AND METHODS

Sampling and procedure

The study was carried out through an online survey aimed at people living with dementia (PLWD) and their informal caregivers, both those who currently care for them and former caregivers. The decision to include former caregivers was motivated by the fact that in many cases, caregivers continue to attend support groups or other services after the death of their relative with dementia (Giebel et al., 2021).

The participants were recruited through information released on the website and social networks of the National Reference Centre for Alzheimer's and Dementia Care, Imserso, Spain. In addition, the different Alzheimer's Family Associations in the national territory were contacted via email to promote the dissemination of the survey, which had to be completed online. The approximate time to answer the survey was 10 min.

Survey variables

A survey specifically designed for the study was used, along with two clinical assessment instruments. A total of 29 questions were asked, divided into the following sections:

Demographic variables: The first questions of the survey referred to the demographic variables of the participants, including age, gender, autonomous community of residence, educational level, employment situation, cohabitation situation and relationship with the PLWD. In this section, the participant was also asked to indicate whether he or she was a PLWD, a current caregiver or a former caregiver of a relative with dementia.

Information about COVID‐19: The perceived information from the respondents about the virus was evaluated using a Likert‐type scale that ranged from 1 (totally uninformed) to 5 (totally informed).

Prevention guidelines: The perceived information regarding the guidelines to prevent contagion was assessed using a Likert‐type scale that ranged from 1 (totally uninformed) to 5 (totally informed).

The level of compliance with each of the main prevention measures imposed (keeping social distance, use of a mask and frequent hand washing) was assessed through questions that used a Likert‐type scale that ranged from 1 (I do not comply) to 5 (I always comply). In addition, the degree of difficulty in complying with each of these measures was assessed using Likert‐type scales that ranged from 1 (not difficult for me) to 5 (very complicated). In the case of being a current caregiver, the participant was also asked about the difficulty and degree of compliance with prevention measures for PLWD through questions with the same format as the previous ones.

Added difficulty in the care work due to the fulfilment of the preventive guidelines was asked about using a Likert‐type scale that ranged from 1 (not at all) to 5 (a lot).

Finally, within this section, the fear of being infected, the fear of contagion of the family member with dementia and specifically about the caregiver's fear of infecting their family member with dementia were investigated. A Likert‐type scale that ranged from 1 (not at all) to 5 (a lot) was used to assess each of these aspects.

Access to social support services and impact: The use of social support services before the pandemic (T1) and at the time of answering the survey (T2), as well as the number of hours of use of each service at both time points was measured. Participants had to choose the services they used from a given list or add others. In the case of home help services, day/night centres, clinical treatments and others, the number of hours per week was asked, whilst for mutual aid groups, the number of hours per month was asked.

The increase in the difficulty of access to social services and the health system was assessed using Likert‐type scales that ranged from 1 (not complicated) to 5 (very complicated). Likewise, satisfaction was asked regarding the response of these services using a scale that ranged from 1 (not satisfied at all) to 5 (very satisfied).

Impact on the family: Five questions were included on the impact of the pandemic on the family economy, family relationships, contact with loved ones and leisure activities using a Likert‐type scale that ranged from 1 (has gotten much worse) to 5 (has improved a lot). In addition, the increase in care overload since the beginning of the pandemic using a scale that ranged from 1 (it has decreased a lot) to 5 (it has increased a lot) was measured.

Psychological measures: In the final section of the survey, participants were asked to complete the following clinical assessment instruments:

Personal Health Questionnaire 9 (PHQ‐9; Kroenke et al., 2001): A self‐report instrument used to identify major depressive disorder. For the Spanish version, results comparable to the original version were found, with sensitivity values of 87% and specificity of 88% using a cut‐off point of 10 (Muñoz‐Navarro et al., 2017).

Generalised Anxiety Disorder (GAD‐7; Spitzer et al., 2006): A self‐administered instrument used to identify probable patients with generalised anxiety disorder. For the Spanish version, a Cronbach's alpha coefficient of 0.93 was obtained. Considering the 10‐point cut‐off, sensitivity values of 83.8% and specificity of 93.4% were found (García‐Campayo et al., 2010).

Data collection

The survey could be completed online between November 27, 2020, and January 19, 2021. Before the beginning of the research, ethical approval from the institutional review board of the National Reference Centre for Alzheimer's and Dementia Care was obtained.

Analysis of data

Data analysis was carried out with the statistical software R. The answers to the survey questions were analysed with descriptive statistics. T‐tests for related samples were performed to compare the use of social support services in T1 and in T2 (number of hours of use of each service) and McNemar's test was used to compare the number of people who did not use any social support service at both time points.

To assess the number of cases of anxiety and depression, the cut‐off points of PHQ‐9 and GAD‐7 were used to categorise the participants as with or without depression or anxiety.

To try to determine the influence of the survey variables on the anxiety and depression levels of the sample, a multivariate multiple regression model was developed. The variables included in the model were change in social support services, sex, age, employment status, cohabitation situation and relationship.

RESULTS

Demographic characteristics

A total of 229 participants answered the survey, anonymously and voluntarily. After reviewing compliance with the inclusion criteria, formal caregivers (n = 13) were excluded. Due to the low number of PLWD that responded to the survey (n = 1), it was decided not to analyse the data from this group. The final sample consisted of 215 people, current or former caregivers of PLWD. Of this sample, 80.93% were women. The mean age of the group was 53.20 (SD = 11.64).

The demographic characteristics of the sample are shown in Table 1. Two subsets of data were created to perform some analyses: current caregivers (n = 161) and former caregivers (n = 54). Of the current caregivers, 80.12% were women and the mean age was 53.40 (SD = 11.53). 65% lived with a PLWD. Of the former caregivers, 83.33% were women and the mean age of the group was 52.63 years (SD = 12.06).

TABLE 1

Demographic characteristics of the sample

	Total sample (N = 215)	Current caregivers (n = 161)	Former caregivers (n = 54)
Age
Mean (SD)	53.20 (11.64)	53.40 (11.53)	52.63 (12.06)
Rank	20–90	20–85	26–90
Gender (%)
Women	174 (80.93)	129 (80.12)	45 (83.33)
Males	41 (19.07)	32 (19.88)	9 (16.67)
Academic level (%)
Without degree	6 (2.79)	5 (3.11)	1 (1.85)
Primary studies	27 (12.56)	22 (13.66)	5 (9.26)
Secondary studies	57 (26.51)	42 (26.09)	15 (27.78)
Higher education	118 (54.88)	87 (54.04)	31 (57.41)
Others	7 (3.26)	5 (3.10)	2 (3.70)
Employment situation (%)
Active	132 (61.40)	100 (62.11)	32 (56.26)
Unemployed	41 (19.07)	29 (18.01)	12 (22.22)
Retired	39 (18.13)	30 (18.64)	9 (16.67)
Student	3 (1.40)	2 (1.24)	1 (1.85)
Cohabitation situation (%)
Living with a PLWD	105 (48.84)	105 (65.21)	0 (0)
Living with others, no PLWD	86 (40)	44 (27.32)	42 (77.78)
Living alone	24 (11.16)	13 (8.07)	12 (22.22)
Relationship (%)
Spouse/partner	32 (14.88)	28 (17.40)	4 (7.41)
Child	140 (65.12)	118 (73.29)	22 (40.74)
Sibling	4 (1.86)	4 (2.48)	0 (0.00)
Grandchild	9 (4.19)	4 (2.48)	5 (9.26)
Other	30 (13.95)	7 (4.35)	23 (42.59)

Information on COVID‐19 and prevention guidelines

Most of the sample considered they had good information about COVID‐19 and its prevention guidelines. Of the 215 people surveyed, 61% said they feel fully or fairly informed about COVID‐19 and almost 80% have full or sufficient information regarding the measures to prevent contagion. Only 2% felt completely uninformed about the disease and only one person stated that they did not know the indicated preventive guidelines.

Regarding the prevention guidelines, the participants stated that they had no difficulties when putting them into practice. Around 90% of the total sample considered the use of the mask and frequent hand washing easy, being somewhat more complicated to maintain social distance but equally easy to comply with (71%). In the same way, they affirmed to have a correct fulfilment of the prevention guidelines. About 84% always or almost always comply with frequent hand washing. Around 87% said they always or almost always wear a mask and 69% always or almost always comply with social distance.

Concerning the perception of caregivers regarding the difficulties posed by PLWD in complying with prevention guidelines, current caregivers did encounter difficulties for PLWD to adhere to prevention guidelines. The most difficult guideline for PLWD to understand and meet was social distance. Of the 161 current caregivers surveyed, 57% considered that keeping social distance was a difficult guideline to understand for PLWD, never or almost never complying with it in 40% of cases, followed by the use of a mask and frequent hand washing, around 40% considered that it was difficult to understand, but with a more acceptable compliance (around 60% stated that they always or almost always comply with it, 20% sometimes and in around 20% never or almost never). Furthermore, the majority of caregivers (69%) agreed that compliance with guidelines makes care work somewhat more challenging.

Fear of contagion

In general, the respondents showed a moderate fear of contagion of COVID‐19 (33% somewhat and 30% quite). The current caregivers showed significant fear both of their family member being infected (86% said they were quite or very afraid) and of they themselves would infect their family member (around 80%).

Social support services

The analysis of the use of social support services was carried out only with the group of current caregivers (n = 161). The number of people using each of the services before the pandemic (T1) and at the time of answering the survey (T2) is shown in Table 2.

TABLE 2

Social support services utilisation in T1 and T2

Social support service type	n in T1 (%)	n in T2 (%)
Day/night centre	80 (49.69)	59 (36.65)
Clinical treatments	31 (19.25)	28 (17.39)
Home‐delivered meal	8 (4.97)	10 (6.21)
Support groups	7 (4.35)	1 (0.62)
Sociocultural activities	29 (18.01)	8 (4.97)
Home assistance services	32 (19.86)	37 (22.98)
Telecare	22 (13.66)	22 (13.66)
Residential centre	6 (3.73)	6 (3.73)
None	23 (14.29)	38 (23.60)

Note: The cumulative percentages exceed 100% because some people use more than one social support service.

The most used social support services before the pandemic were day centres, followed by home help services, clinical treatments and socio‐cultural activities. About 14.29% of the people who responded to the survey did not use any service before the pandemic (T1), a proportion that increased significantly to 23.6% in T2, the change being significant, χ 2 = 13.067, p = 0.000 (Figure 1).

FIGURE 1

Change in social support services utilisation

Around 55% of the people who responded to the survey reported a change in their use of social support services during confinement, whilst the remaining 45% kept it the same as before the pandemic. The mean weekly hours of access to social support services were 19.88 (SD = 21.72) before the pandemic and 16.04 (SD = 19.62) at the time of responding to the survey. The difference between both moments was significant, t(160) = 3.047, p = 0.003.

As can be seen, during the COVID‐19 pandemic, the use of day centres and socio‐cultural activities decreased mainly, as well as participation in mutual aid groups. Clinical treatments also decreased. On the contrary, an increase in the use of help services and home‐delivered meal was observed. However, the t tests showed that the only significant variations in the use of social support services were in the use of day centres and sociocultural activities (Table 3).

TABLE 3

T‐tests for the difference in number of hours

Social support service type	Average T1	Average T2	df	Difference of means	95% confidence interval		t	p
					Upper L	Lower L
Day/night centre	23.148	17.636	83	5.512	1.961	9.063	3.088	0.003
Clinical treatments	4.941	3.882	33	1.059	−0.930	3.047	1.083	0.287
Home‐delivered meals	14.022	16.866	44	−2.844	−6.626	0.937	−1.516	0.137
Support groups	13.727	0.454	10	13.273	−6.911	33.456	1.465	0.174
Sociocultural activities	3.857	1.028	34	2.829	1.387	4.270	3.987	0.000
Others	7.083	7.000	23	0.083	−6.782	6.949	0.025	0.980

Impact on social and health services

Regarding the impact of COVID‐19 on services, most of the sample considered that there was a significant increase in the difficulty of accessing social services and especially the health system. About 70% considered that the difficulty of access to social services had increased a lot or quite a lot, being 38% of the sample dissatisfied with the answer given to their needs. Along the same lines, 86% considered that the difficulty of access to the health system had increased a lot or quite a lot, being 48% dissatisfied with the answer received.

Impact on family

Regarding the impact of COVID‐19 on the family, approximately half of those surveyed responded that they had not had changes in their family economic situation, whilst the other half reported a worsening in it. Only two people claimed to have improved it.

Regarding the family relationships of the respondents, they remained unchanged or worsened to some extent. Unsurprisingly, study participants reported a significant decrease in contact with loved ones and participation in leisure activities.

Most of those surveyed said they had seen increased overload since the start of the pandemic. Around 47% considered that their overload had increased a lot and 35% that it had increased to some extent.

Psychological measures

Depression

The mean score on the PHQ‐9 scale is below the cut‐off point for major depression (Table 4). However, 41% have PHQ‐9 scores consistent with clinical criteria for depression. Similar scores are obtained in the two subsets of the sample, current caregivers (42%) and former caregivers (41%), who did not differ significantly, t(92.565) = 0.276, p = 0.784.

TABLE 4

Scores of depression and anxiety in current and former caregivers

	Sample total (N = 215)	Current caregivers (n = 161)	Former caregivers (n = 54)
Depression (PHQ‐9)
Mean (SD)	9.20 (6.20)	9.26 (6.25)	9.00 (6.13)
Anxiety (GAD‐7)
Mean (SD)	8.87 (5.46)	9.07 (5.40)	8.28 (5.21)

Regarding the distribution of the sample according to the severity of the symptoms, 26% of the total sample did not present depressive symptoms (0–4), 32% presented mild symptoms (5–9), 20% had symptoms moderate (10–14), 14% moderately severe symptoms (15–19) and 7% severe symptoms (20–27).

Anxiety

The average score of the sample on the GAD‐7 is below the cut‐off point for clinical scores (Table 4). Of the total sample, 47% have scores compatible with the clinical criteria for anxiety on the GAD‐7 scale. Current and former caregivers obtained similar scores (48% and 44% respectively), without finding a significant difference between them, t(96.138) = 0.956, p = 0.341.

Multiple linear regression

Two multiple regressions were carried out to try to determine the influence of the variables collected in the survey (change in social support services, sex, age, employment status, cohabitation situation and relationship) on the levels of anxiety and depression of the sample of current caregivers. The correlation analysis prior to the regression did not show a relationship between the variation in the number of hours of use of social support services (hours in T2 − hours in T1) with depression (p = 0.733) or with anxiety (p = 0.571) of current caregivers.

In relation to the depression score, the only variable that obtained significant values was employment status, specifically being active at work (p = 0.049); however, the regression model was not significant, R 2 = 0.088, F(10, 150) = 1.450, p = 0.164. In the case of anxiety, the only variables that were significantly associated were sex (p = 0.040) and age (p = 0.020), but the regression model was not significant either, R 2 = 0.029, F(10, 150) = 1.477, p = 0.153. These results indicate that the variables included in the model do not explain the variation in anxiety and depression scores of current caregivers.

DISCUSSION

Along the lines of the study by Giebel et al. (2021), the main objective of this study was to explore the impact at the social and health level that the COVID‐19 pandemic and the consequent confinement measures could be having on the family caregivers of PLWD. The results show that the pandemic and the confinement measures have had a negative impact on the caregivers, who find it difficult to comply with the prevention measures by the PLWD, their access to social support services as well as the informal social support and experienced a high level of perceived overload, anxiety and depression. The main difference with Giebel et al. (2021), besides differences in the context and timing, was the inclusion of the analysis of self‐care and the difficulties that people with dementia and their caregivers may have experienced in its application.

The final sample of the study was of current or former caregivers of PLWD, whose sociodemographic characteristics coincide with that described in other studies on the profile of the caregiver (Navarro Ramos, 2016) regarding gender, age and kinship, being mostly daughters of middle age, but they differ with respect to academic level and employment status, being more frequently women with higher education and in active employment.

The results indicate that the majority of caregivers of PLWD consider they have good information regarding COVID‐19 and its prevention guidelines, stating that they have no difficulty in putting them into practice. This aspect is relevant since satisfaction with the information received about the pandemic is considered a protective factor for mental health (Brooks et al., 2020; Rodríguez Rey et al., 2021). In contrast and confirming what is anticipated by other authors (Brown et al., 2020; Mok et al., 2020; Wang, Li, et al., 2020), highlight the difficulties that PLWD are having to understand preventive guidelines, especially the need to maintain social distance. Compliance with these guidelines by the PLWD is still acceptable, but most caregivers consider that it makes the care work difficult, feeling an increase in the perceived overload and describing an intense fear both of their family member being infected and of they themselves would infect the PLWD. This increase in the perceived burden of caregivers coincides with other studies (Altieri & Santangelo, 2021; Azevedo et al., 2021; Tsapanou et al., 2021) and it is assumed that it is a consequence of the increase in care tasks, the loss routines and lack of support services (Greenberg et al., 2020).

Since the beginning of the COVID‐19 pandemic, there has been a change in the use of social support services, with a significant decrease in the use of day centres by PLWD, as well as a decrease in the participation of caregivers in mutual aid groups and other clinical treatments. PLWD care was already a challenge in itself before the pandemic and the use of these social services was a fundamental support. Interventions generally offered in social support services such as self‐help groups and day centres have shown a significant effect on burden, depression and subjective well‐being of family caregivers (Gallagher‐Thompson & Coon, 2007; Mittelman et al., 2006; Walter & Pinquart, 2020), as well as on the symptoms of PLWD and the delay in its institutionalisation (McDermott et al., 2019; Olazarán et al., 2010). Giebel et al. (2021) found in their study that the lack of access to formal social support services due to the pandemic contributed to a poorer quality of life and an increase in anxiety in PLWD, caregivers and older adults throughout the United Kingdom. It is also relevant to note that most caregivers perceive a significant increase in the difficulty of accessing social services and the health system since the beginning of the pandemic and that half of the cases report a worsening in their economic situation. Other studies have also shown that family caregivers of PLWD have felt frustration as a consequence of the lack of institutional support (Carcavilla et al., 2021).

Together with the change in the use of formal social support services, it should be considered the effect that the pandemic is also having on informal social support. This study highlights the significant decrease in caregivers' contact with loved ones and the negative effect that the pandemic may have had on family relationships. The impact of loneliness and lack of social support on the physical and mental well‐being of older people is well known (Park et al., 2020), with negative consequences for both PLWD (Balouch et al., 2019) and their caregivers (Kovaleva et al., 2018), for whom social support is a protective variable of their well‐being (Cheng et al., 2013; Pinquart & Sörensen, 2007; Zhong et al., 2020).

This study found that the levels of anxiety and depression of caregivers during the pandemic are much higher than those obtained in similar studies with the general population (Valiente et al., 2020; Wang, Li, et al., 2020), and higher than those obtained in caregivers of PLWD outside the context of pandemic and confinement (Sallim et al., 2015). This result is consistent with other studies which found that caregivers of PLWD have experienced a worsening of their mental health during the pandemic and confinement (Altieri & Santangelo, 2021; Carcavilla et al., 2021) and demonstrates the vulnerability of caregivers of PLWD. This negative effect on anxiety and depression is associated with the lack of informal social support (Zhong et al., 2020) and the loss of social support services (Giebel et al., 2021), however, in this study, no significant relationship between the loss of hours of social support services and the anxiety or depression scores of current caregivers was found. Surprisingly, no significant differences between current and former caregivers regarding anxiety and depression levels were found, a result that contradicts other studies (Giebel et al., 2021). It is possible that these differences are due to variations in context or cultural differences between the two countries, which may modulate the impact of caregiving on variables such as stress (Knight & Kim, 2005). Therefore, it can be hypothesised that being or having been a family caregiver of PLWD in Spain is a risk factor for the development of mental health disorders. The vast majority of studies on caregivers of PLWD focus on evaluating the stage of care, with less evidence of the emotional process that occurs after the death of the family member. Nevertheless, some studies highlight the risk of developing pathological grief and the importance of developing programs and skills that help caregivers cope with the loss of their loved one (Piccini et al., 2012). The results of the study confirm the vulnerability of past caregivers.

Amongst the strengths of this study, the use of validated instruments to measure the level of depression and anxiety of the participants stands out, as well as having been able to gather a relatively large sample of caregivers, with representation from the entire national territory. However, a bias was found regarding the educational level of the participants, the majority having a high academic level, which is probably related to the need to be accustomed with the use of new technologies to complete the survey. The same reason most likely explains why PLWD's participation was almost nil. Another limitation of this study refers to the lack of a longitudinal design that would allow more rigorous estimation of the changes that occurred during the pandemic and confinement and the temporal evolution. Finally, we could not have indicators of the type or stage of dementia in which PLWD were nor did we collect information regarding the type of support that caregivers would have liked to have during the pandemic.

CONCLUSION

The psychological impact that the pandemic is having on the entire population is indisputable, but it is important to emphasise the vulnerability of PLWD and their caregivers as particularly affected groups. Caring for a PLWD was already a challenge before the pandemic, a complex task that involves managing high levels of uncertainty and stress and that can affect the physical and psychological health of caregivers. At present, caregivers of PLWD have to face this task with fewer social support services. It is necessary to adapt social support services and design intervention and prevention strategies that guarantee quality care to the needs of the PLWD and their caregivers and that minimise the psychosocial consequences that the pandemic and confinement measures may have on them. The use of information and communication technologies to provide online services has been accelerated in this situation and seems one of the most appropriate options (Cuffaro et al., 2020; Goodman‐Casanova et al., 2020).

AUTHOR CONTRIBUTIONS

Raquel García Santelesforo: Conceptualisation (equal); Methodology (equal); Writing—original draft preparation (equal); Writing—review and editing (equal). Teresa Rodríguez del Rey: Conceptualisation (equal); Methodology (equal); Data curation (lead); Formal analysis (lead); Writing—original draft preparation (equal); Writing—review and editing (equal). Enrique Pérez Sáez: Conceptualisation (equal); Methodology (equal); Data curation (supporting); Formal analysis (supporting); Writing—original draft preparation (equal); Writing—review and editing (equal). Beatriz Peláez Hernández: Data curation (supporting); Resources (lead).

FUNDING INFORMATION

This research has not received specific funding from any public or private agency.

CONFLICT OF INTEREST

The authors have no conflict of interest to declare.