Care tasks and impact of caring in primary family caregivers: a cross-sectional study from a nursing perspective

Applied Nursing Research 62 (2021) 151505 Available online 25 September 2021 0897-1897/© 2021 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Care tasks and impact of caring in primary family caregivers: A cross-sectional study from a nursing perspective Alba-Elena Martínez-Santos a , 1 , Noelia Vicho de la Fuente b , 1 , David Facal c , Lucía Vilanova- Trillo d , Manuel Gandoy-Crego a , Raquel Rodríguez-Gonz´ alez a , * a Department of Psychiatry, Radiology, Public Health, Nursing and Medicine, Faculty of Nursing, University of Santiago de Compostela, Santiago de Compostela, Spain b Nursing Department, Madrid Health Service, Madrid, Spain c Department of Developmental Psychology, Faculty of Psychology, University of Santiago de Compostela, Santiago de Compostela, Spain d Dermatology Department, University Hospital Complex of Pontevedra, Pontevedra, Spain ARTICLE INFO Keywords: Family caregivers Dementia Models Nursing Quality of life Health promotion ABSTRACT Background: Family caregivers of persons with dementia often experience a negative impact on their health. More studies based on nursing theories are needed to improve the provision of care. Aims: To describe the care provided by family caregivers of persons with dementia and the impact on their health, as well as to analyse how personal variables of caregivers are related to care tasks and their health impact. Methods: Multi-centric cross-sectional prospective study conducted on a sample of 423 primary family caregivers of persons with dementia from Spain. Data were collected through ICUB97-R questionnaire (January–April 2019), based on the fourteen needs of Virginia Henderson's Nursing Model. Data was analysed through one-way analysis of variance and Student's t-test. Results: The caregiver profile was a middle-aged married woman without higher education living with the cared person, predominantly her mother. The most frequently provided care corresponded to “nutrition” and “movement” needs. Lack of free time, modifications on leisure activities, reduced sleep or rest and disruption of family life emerged as the greatest repercussions on the caregiver's health. The age of the caregiver and time caring showed differences on impact of care and care tasks, respectively. Conclusion: The identification of the types of care provided, the health impact of caring and the variables affecting the family caregiver's vulnerability is essential to develop effective individualised nursing care plans, including health education interventions to improve the quality of life of both caregivers and persons cared for. 1. Background Global life expectancy is on the rise as 9.1% of the world's population is 65 or older. Spain is expected to become the second oldest country in the world by 2050. Currently, 19.6% of the population is over 64 years old. Galicia, located in the north-west of the country, is the third region where more elderly people are living (Abell´ an García et al., 2019; United Nations, 2019). As the population gets older, dependency levels grow due to the increase of chronic and degenerative diseases. The old-age dependency ratio worldwide stands at 15.9 and is more than twice that in Spain (ratio of 32.2). Dementias are one of the main causes of disability and dependency through the aging process. Although not inherent to aging, the probability of suffering from a degenerative dementia increases with age (United Nations, 2019; World Health Organization, 2017). It is estimated that around 50 million persons suffer from dementia, being Alzheimer's disease the most common among the elderly. This circumstance brings a high socio-economic burden, causing 28.8 million of disability-adjusted life years (Alzheimer's Disease International, 2019). Consequently, the World Health Organization launched a Global Action Plan in 2017 to improve the lives of individuals with dementia and their families, being a priority issue in public health (World Health Organization, 2017). Dementia syndromes are progressive brain diseases that progress * Corresponding author at: University of Santiago de Compostela, Faculty of Nursing, Avenida de Xo´ an XXIII s/n, Campus Norte, 15782 Santiago de Compostela, Spain. E-mail address: [email protected] (R. Rodríguez-Gonz´ alez). 1 Both authors contributed equally to this work. Contents lists available at ScienceDirect Applied Nursing Research journal homepage: www.elsevier.com/locate/apnr https://doi.org/10.1016/j.apnr.2021.151505 Received 30 July 2021; Received in revised form 31 August 2021; Accepted 22 September 2021 Applied Nursing Research 62 (2021) 151505 2 variably to a point of intense care. These are characterized by impairment in multiple cognitive functions with behavioural and psychological symptoms, among other manifestations. The deterioration of dementias is widespread, affecting physical, functional, affective, and social areas, and the level of dependency and the demand for care are aggravated by the progress of the disease (Gallagher-Thompson et al., 2020; World Health Organization, 2017). Given the ever-increasing relevance of support in daily activities, the figure of the caregiver becomes essential. In our context, care is mainly provided by family caregivers, who are relatives or close persons responsible for making decisions and satisfying needs. This type of care is defined by the absence of a written contract of employment and, in many cases, the absence of institutional support or specific training. The most common family caregiver profile described is usually a middleaged or even elderly female who is part of the nuclear family, has elementary studies and is of a medium or low socio-economic level (Martínez-Santos et al., 2021). The circumstances surrounding caregivers influence the care and condition of individuals with dementia, who, in turn, influence the health of caregivers. Frequently, caring has negative effects on the caregiver's physical and mental health, becoming a burden along with a deterioration of social and working life, especially in females (Martínez- Santos et al., 2021). This becomes particularly important when the behavioural and psychological symptoms of dementia are present, while Alzheimer's disease one of the pathologies which would most likely lead to burnout (Rodríguez-Gonz´ alez & Rodríguez-Míguez, 2020; Schumann, Alexopoulos, & Perneczky, 2019). Dementias have a high negative impact on multiple socio-economic areas, including country budgets and the family economy. In informal care, costs are borne by the individual's family environment but remain poorly visible to society. The family economy is impacted by both the expenses that come with satisfying the dependent's needs, as well as by job-related complications of the primary caregiver (such as doing parttime jobs or giving up work). Therefore, the economy as well as psychosocial aspects of the caregiver's life are affected, leading to a scarcity of primary health care support to the family in most contexts (Michalowsky et al., 2016; World Health Organization, 2017). In our context, Alzheimer's associations have helped to compensate for the lack of social and health resources through health education programmes, psychological counselling and social support groups. This could become relevant in cases where certain characteristics, such as age, economic level or degree of education could make caregivers more vulnerable. The nursing-based theoretical model that supports this research considers persons as an integral being with fourteen basic needs to be satisfied. Although caregiving consequences is a well-studied topic, this holistic perspective provides information of great importance for nursing research and practice. Thus, the use of nursing theories and concepts make it easier to develop interventions to improve people's quality of life and the provision of evidence-based nursing care (Potter, Perry, Stockert, & Hall, 2017). This is especially useful in Spain and other countries where the Henderson model is used to help persons to recover or maintain their independence by the meeting of their needs (Fuentelsaz Gallego et al., 2001). Based on the fourteen human needs of Virginia Henderson's nursing model of care, the aim of this research is to describe the care provided by family caregivers and the impact on their health. Furthermore, we aim to analyse how age, time caring and education level of the caregivers might be related to care tasks and their health impact. 2. Research methods 2.1. Design and setting This multi-centric cross-sectional prospective study was undertaken between January and April 2019. Participants were recruited using convenience sampling from 13 associations of family caregivers of persons with dementia (PwD) that are part of the Regional Federation of Alzheimer's and other dementias in Galicia, NW Spain. Inclusion criteria included: (1) to be 18 or more years old, (2) to be the primary family caregiver of a PwD, (3) to be part of one association pertaining to the Regional Federation, and (4) to have been caring for a minimum of five months. Caregivers receiving remuneration for care and those displaying difficulties in understanding the nature of the study or the questionnaire were excluded. A total of 423 questionnaires were considered valid after exclusion for being incomplete (n =28) or for not meeting inclusion criteria (n =3). 2.2. Data collection Data collection was carried out through a structured, voluntary, anonymous, and self-administered questionnaire (ICUB97-R). The ICUB97-R questionnaire was chosen to assess the intensity of care provided and the repercussions on family caregivers (Chirveches- P´ erez et al., 2014). This reduced version of the instrument is based on the fourteen needs of the well-known Virginia Henderson's Nursing Model, validated for Spanish population (Fuentelsaz Gallego et al., 2001). This questionnaire obtains information regarding the level of both care given and repercussions of that care, focusing on the caregivers' voice from a nursing perspective. Such approach aims to evaluate holistic health support priorities of different types of caregivers from a community-based clinical practice point of view. 2.3. Instrument ICUB97-R is composed of two parts. The first one explores the nature of the care tasks provided by the caregiver to a dependent relative, whereas the second evaluates the impact of caring on the family caregiver, both essential aspects for primary health care interventions as well as for prevention approaches. Both parts are in turn divided into three dimensions: physical, environmental, and psychosocial care provided (part 1, scoring range 0–35) and psychophysical, socio-economic, and emotional repercussions (part 2, scoring range 0–30). The questionnaire comprises 65 closed questions (yes/no) and respondents must mark the answers they feel identified with. In both cases a higher score indicates more items from each scale are present. All items assess human needs according to Virginia Henderson's Need Theory. Sociodemographic data designed ad hoc were requested to investigate details of the caregivers, including gender, age, cohabitation, family relationship and level of education, among others. 2.4. Ethical considerations The study protocol was approved by the regional Clinical Research Ethics Committee (Reference 2019/069) and by the Regional Federation of Alzheimer's and other dementias. Participants were informed about the purpose of the study, participation was voluntary, explicit consent was obtained, and all data were processed anonymously according to the current national and European regulations on data protection. 2.5. Data analysis Data were analysed using Statistical Package for the Social Sciences (SPSS) 25.0 for Mac (IBM Inc.). The frequencies of each item were recorded, and then the means of each dimension were calculated, scoring 1 if the answer was positive and 0 if negative. Subsequently, differences between groups were calculated by comparing these means. One-way analysis of variance (ANOVA) was conducted to evaluate differences in the two abbreviated ICUB97-R subscales for the age and time-care groups. Also, Student's t-test was carried out to examine differences in the two groups of education level. p values <0.05 were considered significant. A.-E. Martínez-Santos et al. Applied Nursing Research 62 (2021) 151505 3 3. Results 3.1. Patient characteristics The sample consisted of 423 primary family caregivers of a dependent PwD with an average age of 59.94 years (SD: 12.77) and mostly female (73.3%). The person being cared for was also mostly female (70.4%). The profile of the caregivers is shown in Table 1. 3.2. Care tasks and impact of caring The mean number of care tasks provided by family caregivers was 26.06 ±6.13 (minimum =2, maximum =32, scoring range 0–35). Table 2 shows the frequency distribution of item responses related to care tasks provided by the primary family caregiver (first part of the questionnaire). Most frequently provided care were those related to cooking and buying food, as well as accompanying the patient to health services, therefore corresponding to nutrition and movement needs, respectively. Regarding the repercussions of caring on the well-being and health of the caregiver, the mean number of items was 9.21 ±5.17(minimum =0, maximum =25, scoring range 0–30). Table 3 shows the frequency distribution of responses related to the impact of caring (second part of the questionnaire). Most frequently affected needs were play or participate in recreation and sleeps or rests less. Psychophysical and socioeconomic dimensions are strongly affected, with a reduction in resting time, fatigue, and anxiety-related symptoms as well as reporting a negative impact on the amount of free time, leisure activities and disruption of family life. In addition, below we show the differences on care tasks and impact of care based on sociodemographic characteristics. Table 1 Sociodemographic characteristics of primary family caregivers (N =423). N (%) Gender Female 310 (73.3) Male 113 (26.7) Age range (years) ≤45 49 (11.6) 46–64 218 (51.5) ≥65 156 (36.9) Civil status Married or living as a couple 319 (75.4) Lone (single, divorced, widow/widower) 104 (24.6) Higher education Yes 158 (37.3) No 265 (62.7) Employment situation Working 181 (42.8) Retired 177 (41.8) Unemployed 65 (15.4) Place of residence Urban 239 (56.5) Semiurban 108 (25.5) Rural 76 (18) Kinship relationship with the cared person Daughter/son (including in-law) 256 (60.5) Partner 130 (30.8) Other (sibling, granddaughter/grandson, others) 37 (8.7) Living with the cared person Yes 369 (87.2) No 54 (12.8) Time caring 5 months–1 year 33 (7.8) 1–3 years 111 (26.3) 3–5 years 103 (24.3) 5–10 years 116 (27.4) >10 years 60 (14.2) Table 2 Frequency distribution of item responses corresponding to the first part of the questionnaire (N =423). It is composed of three dimensions reflecting areas of care provided, each including specific needs according to Virginia Henderson's Need Theory. DIMENSION Type of care provided and needs Item N (%) PHYSICAL Dress and undress Eliminate body wastes Move and maintain desirable postures Keep the body clean and wellgroomed and protect the integument Accompanies the patient to health services 348 (82.3) Supervises the hygiene of the patient and the house 341 (80.6) Helps the patient to choose suitable clothing and footwear 280 (66.2) Cuts the patient's toenails 252 (59.5) Accompanies the patient to the bathroom 235 (55.5) Performs hair and/or foot hygiene 231 (54.6) Helps the patient to dress and undress 219 (51.7) Changes nappies 205 (48.4) Performs all the hygiene 194 (45.8) Dresses and undresses the patient 175 (41.3) Prevents skin injuries 170 (40.2) Helps the patient to roam around the house or from bed to the couch 163 (38.5) Performs mouth hygiene 147 (34.7) Heals skin injuries 142 (33.5) Gives medication or enemas to regulate bowel movements 93 (22) Performs postural changes 61 (14.4) Places the bedpan 25 (5.9) ENVIRONMENTAL Eat and drink adequately Breathe normally Avoid dangers Maintain body temperature Cooks food 368 (87) Buys food 357 (84.4) Adjusts the temperature of the house 342 (80.8) Adequates home conditions 272 (64.3) Gives medication 229 (54.1) Monitors body temperature 122 (28.8) Feeds the patient 118 (27.9) Prepares a special diet 103 (24.3) Gives medication to regulate temperature 33 (7.8) Helps or practices respiratory rehabilitation 11 (2.6) Feeds the patient by nasogastric tube 1 (0.2) PSYCHOSOCIAL Play or participate in recreation Worship according to one's faith Learn, discover, or satisfy curiosity Accompanies the patient for a walk 320 (75.6) Provides entertainment 298 (70.4) Makes it easier for the patient to live by his/her beliefs and values 279 (65.9) Provides resources to learn 207 (48.9) Makes it easier for the patient to do his/her hobbies 187 (44.2) Teaches the patient how to improve health and well-being 183 (43.2) Teaches the patient the management of his/her disease 82 (19.4) A.-E. Martínez-Santos et al. Applied Nursing Research 62 (2021) 151505 4 3.3. Effects of age, time caring and educational differences on care tasks and impact of care Differences in age group were only found in two dimensions of the second part of the scale measuring impact of care (see Table 4). Post-hoc comparison showed differences between the youngest group and the two other groups. Differences depending on the time spent caring were found for physical care and environmental care tasks (see Table 5). Post-hoc comparisons showed that the group which spent from five months to one year caring does fewer physical care tasks than those who spent a minimum of three years. Groups caring from five months to one year and from one to three years do fewer environmental care tasks than the rest. Analysing this part as a whole, the groups that spent from five months to one year and from one to three years do fewer care tasks than those who spent three to five and five to ten years. Nevertheless, no differences among groups were found regarding the impact of care. No significant differences were found between education level and the ICUB97-R dimensions (Table 6). 4. Discussion The study revealed that the profile of the family caregiver is that of a middle-aged daughter living with the person she cares for. This portrait agreed with data found in other studies previously conducted in the other regions in Spain (Ruisoto et al., 2020) and the general profile in Europe (European Union, 2018). Nevertheless, in areas of northern Europe the sociodemographic characteristics differ slightly in proportion and the female predominance is less marked (Bleijlevens et al., 2015; Hajek & K¨ onig, 2018). In this study, the most provided cares are aimed at supplementing instrumental activities of daily life (activities that take place every day to take care of yourself and your home), since they are the first affected with the onset of dementia. In the dimension “psychophysical care”, accompanying the dependent to health services and supervising hygiene were the most common tasks. Given the characteristics of the studied population, a high frequency of these activities was expected. The need for both cares seems associated to cognitive limitations of PwD rather than physical needs and are also frequently provided by family caregivers in other contexts such as palliative diseases (Fuentelsaz Gallego Table 3 Frequency distribution of item responses corresponding to the second part of the questionnaire (N =423). It is composed of three dimensions reflecting areas of repercussions of caring in caregivers, each including specific needs according to Virginia Henderson's Need Theory. DIMENSION Type of repercussion and needs Item N (%) PSYCHOPHYSICAL Avoid dangers Breathe normally Sleep and rest Sleeps or rests less 247 (58.4) Feels more tired 245 (57.9) Wakes up often 221 (52.2) Feels more nervous 213 (50.4) Feels powerless 196 (46.3) Feels irritated 181 (42.8) Feels anxious 181 (42.8) Has a feeling of shortness of breath 142 (33.6) Takes medication 102 (24.1) Is depressed 99 (23.4) Takes medication to sleep 77 (18.2) Feels disinterested in his/her environment 73 (17.3) Smokes more 43 (10.2) Takes self-protection measures 30 (7.1) Has started smoking 10 (2.4) SOCIO-ECONOMIC Play or participate in recreation Keep the body clean and wellgroomed and protect the integument Dress and undress Work with a sense of accomplishment Has less free time 325 (76.8) Has modified leisure activities 271 (64.1) Family life has been disrupted 221 (52.2) Has difficulty distributing her/ his time 192 (45.4) Spends less time on personal care 152 (35.9) Her/his economy has weakened 145 (34.3) Has adapted her/his work outside the home to take care of 84 (19.9) Has difficulties in promoting herself/himself in the workplace 71 (16.8) Works less time away from home 60 (14.2) Has difficulty dressing as she/ he used to 49 (11.6) Has quit her/his job 47 (11.1) EMOTIONAL Eliminate body wastes Worship according to one's faith Has alterations in the intestinal rhythm 123 (29.1) Has changed her/his beliefs and/or values 54 (12.8) Takes laxatives 23 (5.4) Has changes in her menstrual rhythm 19 (4.5) Table 4 Distribution of the care tasks and impact of care dimensions depending on the age group of the caregivers. Part Dimension ≤45 years (n = 49) 46–64 years (n = 218) ≥65 years (n = 156) Total (n = 423) F a Care tasks Physical 7.02 (4.11) 1–17 7.88 (4.08) 0–17 7.82 (4.24) 0–17 7.76 (4.14) 0–17 0.88 Environmental 4.45 (1.96) 1–10 4.67 (1.89) 0–10 4.61 (1.64) 1–9 4.62 (1.81) 0–10 0.32 Psychosocial 4.02 (1.97) 0–7 3.61 (1.81) 0–7 3.67 (1.96) 0–7 3.68 (1.88) 0–7 0.87 Total 15.49 (6.20) 4–30 16.16 (6.23) 2–32 16.10 (6.01) 2–29 16.06 (6.14) 2–32 0.241 Impact of care Psychophysical 5.28 (3.16) 0–12 4.61 (3.05) 0–13 5.11 (2.87) 0–12 4.87 (3.00) 0–13 1.82 Socioeconomic 4.51 (2.69) 0–10 3.98 (2.36) 0–10 3.38 (2.02) 0–10 3.82 (2.31) 0–10 5.62* Emotional 0.86 (0.96) 0–3 0.53 (0.79) 0–4 0.39 (0.69) 0–3 0.52 (0.79) 0–4 6.74* Total 10.65 (6.12) 1–25 9.12 (5.34) 0–24 8.88 (4.54) 0–22 9.21 (5.18) 0–25 2.260 Note: Results are shown as mean, standard deviation (in brackets), and range. Scoring ranges are 0–35 for care tasks and 0–30 for impact of care. a F (2,420). * p <0.01. A.-E. Martínez-Santos et al. Applied Nursing Research 62 (2021) 151505 5 et al., 2001; Velasco Ramírez, Grijalva, & Gonz´ alez Pedraza Avil´ es, 2015). Therefore, these are not difficulties exclusive to our sample, but rather one of the first areas that requires care after the appearance of a dependency. The most accomplished environmental cares were cooking, buying food, and adjusting the temperature of the home, as reported in other studies using ICUB97-R questionnaire (Chirveches-P´ erez et al., 2014; Velasco Ramírez, Grijalva, & Gonz´ alez Pedraza Avil´ es, 2015). As for the psychosocial dimension, accompanying walking and providing entertainment were the most performed activities by the family caregivers in our study, being less common in caregivers of other dependent patients (Bonacasa, Rosa, Camps, & Martínez-Rubio, 2019). In general, since needs of PwD and the care provided are related, the tasks less provided by family caregivers were more specific and those carried out in advanced stages of the disease or when complications occur, like feeding the patients by nasogastric tube or practicing respiratory rehabilitation with them. Previous studies underlined the most provided care by family caregivers in our study as predisposing factors to suffering burnout syndrome, such as performing practical tasks to supplement instrumental activities of daily living or supervising the PwD (Schumann, Alexopoulos, & Perneczky, 2019). Therefore, our results stress the need to provide assistance, counselling and health education to caregivers. Regarding repercussions, those of the psychological sphere were the most prevalent, being “sleeping and resting less” and “being more tired” the most common items expressed by our participants. Both the quality and quantity of sleep are largely affected in family caregivers of PwD, as reported by recent studies (Gao, Chapagain, & Scullin, 2019). In addition, the physical and mental overload of caring could result in altered physical and mental health, contributing to the appearance of diseases such as depression and anxiety (Avargues-Navarro et al., 2020; Gao, Chapagain, & Scullin, 2019) and increasing the chances of deteriorating the quality of care (Gao, Chapagain, & Scullin, 2019), making the situation more complex. In the socio-economic sphere, caregivers stated having less free time as well as having modified their leisure activities. In general, these are among the most affected areas in family caregivers, both of PwD and of another dependent populations, greatly contributing to the increase of the feeling of overload (Pudelewicz, Talarska, & Bączyk, 2019; Velasco Ramírez, Grijalva, & Gonz´ alez Pedraza Avil´ es, 2015). The more care the caregivers of PwD carry out, the more impact they suffer. As evidenced in interventions performed in this population, family caregivers experience a reduction in overload and distress when they receive help (Kales et al., 2018). Therefore, the impact of this activity being such, it is evident that intervening in care would reduce the impact on health, which would result in benefits for the family system. In terms of socio-economic and emotional spheres, the impact of caring on family caregivers in our sample decreases with age. Emotionally, suffering the fewest repercussions may be associated with resilience. As previous studies point out, this quality is greater with age and is a protective factor against the appearance of burnout syndrome (Ransmayr et al., 2018; Ruisoto et al., 2020). This relationship could be due to the moral obligation they feel because the dependent is a member of the family or a close friend (Avargues-Navarro et al., 2020). The social conception could also play an important role in this result, since older people may consider care as an obligation or a task for which they are intended, as opposed to younger caregivers who usually will not assume that role. It is also possible that this is influenced by the fact that the youngest caregivers have other types of life cycle obligations, such as childcare or job promotion, although women still remain the main caregivers in Europe (Avargues-Navarro et al., 2020; European Union, 2018). The differences found in the proportion of time spent caring for caregivers and the impact of care were not statistically significant, but there is a trend towards the increase of impact on caregivers' lives the more time they dedicate to care, especially in the emotional sphere. Our findings are in line with previous studies analysing the impact of caring on caregivers of PwD (Reed et al., 2020), whose increase would be in line with the care provided. Despite this, in the psychophysical and socio-economic sphere, a slight decrease in the repercussions is observed after ten years of care, which could be due to the fact that only the people who best cope with care persist in such tasks (Cheng, 2017). 4.1. Strengths & limitations The main strengths of this investigation include the large sample size, considering the characteristics of the population and the difficulty in accessing it, and the analysis of family care from the nursing point of view provided by the ICUB97-R questionnaire, enabling the Table 5 Distribution of the care tasks and impact of care dimensions depending on the time spent caring. Part Dimension 5 months to 1 year 1 to 3 years 3 to 5 years 5 to 10 years >10 years F a Care tasks Physical 5.56 (3.53) 6.42 (3.90) 8.32 (3.83) 8.92 (4.24) 8.20 (4.19) 8.71* Environmental 3.91 (1.67) 4.08 (1.64) 4.93 (1.76) 4.91 (2.07) 4.93 (2.07) 6.01* Psychosocial 3.72 (1.89) 3.67 (1.83) 3.89 (1.88) 3.47 (1.95) 3.70 (2.04) 0.68 Total 13.21 (6.05) 14.17 (5.51) 17.15 (5.68) 17.31 (6.22) 16.83 (6.49) 7.04* Impact of care Psychophysical 4.27 (2.99) 4.64 (3.00) 4.70 (2.94) 5.37 (3.05) 4.93 (2.99) 1.38 Socio-economic 3.67 (2.41) 3.76 (2.12) 4.07 (2.47) 3.89 (2.25) 3.47 (2.41) 0.72 Emotional 0.33 (0.65) 0.50 (0.76) 0.46 (0.78) 0.53 (0.75) 0.72 (0.98) 1.58 Total 8.27 (5.46) 8.92 (4.93) 9.22 (5.23) 9.79 (5.10) 9.12 (5.17) 0.57 Note: Results are shown as mean and standard deviation (in brackets). Scoring ranges are 0–35 for care tasks and 0–30 for impact of care. a F (4,418). * p <0.01. Table 6 Distribution of the care tasks and impact of care dimensions depending on the educational level of the caregivers. Part Dimension Higher education No higher education t a Care tasks Physical 7.54 (4.09) 0–17 7.88 (4.17) 0–17 0.81 Environmental 4.58 (1.87) 0–9 4.64 (1.76) 1–10 0.37 Psychosocial 3.80 (1.88) 0–7 3.61 (1.89) 0–7 −1.01 Total 6.29 (0.50) 2–32 6.06 (0.37) 2–31 0.35 Impact of care Psychophysical 4.84 (2.93) 0–12 4.88 (3.05) 0–13 0.12 Socioeconomic 4.03 (2.31) 0–10 3.70 (2.30) 0–10 −1.44 Emotional 0.51 (0.80) 0–3 0.52 (0.78) 0–4 0.23 Total 5.20 (0.41) 0–25 5.16 (0.32) 0–24 −0.54 Note: Results are shown as mean, standard deviation (in brackets), and range. Scoring ranges are 0–35 for care tasks and 0–30 for impact of care. a t(421). A.-E. Martínez-Santos et al. Applied Nursing Research 62 (2021) 151505 6 development of evidence-based interventions led by nurses. This research also has some limitations that need to be addressed. It was carried out in a single region of Spain, therefore similar studies in other areas of the country are needed to extend our conclusions. Secondly, all participants are members of associations, and ideally the situation of those who do not have the support of those associations should be also investigated. Finally, limitations from a non-probabilistic sampling and the exploratory nature of the data collected using this instrument should be considered. 5. Conclusions We present evidence about the profile of the caregivers of PwD in a particularly aging region of Spain, providing key information to develop evidence-based nursing care. The integrity of families undergoes considerable alterations with the onset of dependency, and nurses play a key role in reducing such an impact by instructing in care and self-care, as well as by supervising and assisting when necessary. The population analysed in this study belongs to the group of caregivers of PwD, but the literature has shown that their needs are largely similar regardless of the nature of the patient's dependency. The individualised analysis of families with dependents will allow for the identification of specific needs and training opportunities related to care tasks with room for counselling and health education interventions. This would increase the quality of care provided and reduce overload, benefiting both the caregiver and the person cared for. Negative repercussions on the psychological sphere were reported as the most prevalent by family caregivers, particularly those related to poor sleeping and greater tiredness. Since sustained physical and mental overload might contribute to the development of diseases, early identification and development of preventive interventions in these areas are priority objectives of nursing assistance. Nursing approaches aimed at supporting family caregivers should identify their specific contexts from a holistic perspective to design individualised and effective care plans that satisfy their needs. The need to design nurse-led prevention and intervention programs for family caregivers is evident. Future research should be focused on identifying the profile of caregivers in different contexts, as well as on analysing the effectiveness of interventions aimed at improving their quality of life and, therefore, also that of patients. This might provide evidence to develop practice guidelines that promote the delivery of high quality, evidence-based health care. Funding statement This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. CRediT authorship contribution statement Alba-Elena Martinez-Santos: Conceptualization, Investigation, Formal analysis, Writing – original draft, Validation. Noelia Vicho de la Fuente: Conceptualization, Investigation, Formal analysis, Writing – original draft, Validation. David Facal: Investigation, Formal analysis, Supervision, Writing – review & editing, Validation. Lucía Vilanova- Trillo: Investigation, Formal analysis, Supervision, Writing – review & editing, Validation. Manuel Gandoy-Crego: Investigation, Formal analysis, Supervision, Writing – review & editing, Validation. Raquel Rodríguez-Gonz´ alez: Conceptualization, Investigation, Formal analysis, Supervision, Writing – review & editing, Validation. Declaration of competing interest No conflict of interest has been declared by the authors. Acknowledgements We are grateful to Diego Lopez-Cao for his services in editing the manuscript. References Abell´ an García, A., Aceituno Nieto, P., P´ erez Díaz, J., Ramiro Fari˜ nas, D., Ayala García, A., & Pujol Rodríguez, R. (2019). A profile of the elderly in Spain, 2019. Basic statistical indicators. Informes Envejecimiento en red n◦22. 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