Background
Dementia is one of the most challenging age-related illnesses, not only for those who have been diagnosed with dementia but also for their family caregivers and healthcare professionals [
1]. During the course of dementia, the need for assistance in the activities of daily living (ADL) increases, and the burden of continuous care and an extensive need for support falls on both family caregivers and social and health care service providers [
2]. In the last decade, there has been a trend towards increased attention to day care facilities as an important part of community services [
3]. Day care centres (DCC) offer both an activity programme for the service users and a respite service for the family caregivers [
4‐
7]. The term ‘respite care’ is used to cover a range of services that can occur in the home [
8], in a DCC, or in a residential setting [
9].
The caregiver’s role and burden is well known and includes physical, psychological, social, and financial aspects [
10,
11]. The term ‘caregiver burden’ is often used to describe this phenomenon, and it can be defined as “the degree to which a carer’s emotional or physical health, social life or financial status have suffered as a result of caring for their relative”[
12]. Caregiver burden increases the risk of depression and anxiety disorder [
13‐
17], and informal caregivers of people with dementia living at home experience care as more burdensome compared to informal caregivers of recently institutionalized people with dementia [
18].
The caregiver burden can be associated with two main dimensions, the characteristics of the patient and the characteristics of the caregiver.
Patient characteristics include the behavioural or psychological, disease-related, and socio-demographic factors related to the patient [
19]. The
caregiver’s characteristics (socio-demographic and psychological factors) influence their experience of caregiving. Female gender and cohabitation with the patient are associated with a larger burden, as are poor psychological health and poor religious coping skills [
19].
Even though the majority of research has focused on burden and other negative aspects of family caregiving, positive aspects have been presented [
20,
21], including a sense of meaning, a sense of self-efficacy, satisfaction, a feeling of accomplishment, and improved wellbeing and quality of relationships [
22]. These positive experiences can help sustain family members in their work as caregivers [
21].
DCCs providing a respite and support service have the potential to give family caregivers relief, reduce caregiver burden, and increase their motivation for their role as a caregiver [
3,
7,
23]. These benefits can be summarized under four headings. 1) DCCs
facilitate separation time, thereby giving family caregivers time that can be used for undisturbed work [
8,
24,
25], rest, or other pursuits [
6,
9,
25]. 2) DCCs seem to
reduce behavioural problems and the need for assistance with ADL, but research on these effects is largely undocumented and tentative [
6,
26,
27]. 3)
DCCs may reduce care demands, stress, and depression as well as increase wellbeing [
9,
28‐
30], but the results from previous research conflicts with this [
5,
27]. Some studies indicate decreased symptoms of depression in caregivers when the person with dementia attends a DCC [
9,
28], but other studies find no significant effect on wellbeing [
25,
27]. 4) DCCs increase
motivation for care and postponement of the need for residential care as they offer information and support regarding dementia-related topics, with the intention to reduce care-related stress [
5,
8,
11,
25,
28,
31,
32]. Support for family caregivers aims to develop knowledge and skills in dementia care and prevent the risk of early institutional placement [
11,
33].
Previous research indicates that DCCs can reduce the caregiver burden [
34] and help family caregivers to cope with demands [
5,
8,
27,
28,
35,
36]; however, current knowledge is tentative and inconsistent, and more research is recommended [
7]. The aim of our study is to provide an extended understanding of the situation of the family caregiver and examine to what extent DCCs can meet their need for support and respite.
Methods
This study has a qualitative descriptive design [
37,
38]. In-depth interviews with family caregivers of people with dementia attending a DCC were used to explore their situation and the influence of the DCC on their needs for support and respite. To attain an extended understanding of their situation, we searched for family caregivers reflecting a variety of genders, ages and relationships with the person with dementia. In the in-depth interviews, the participations were given the opportunity to share detailed descriptions of their everyday life experiences, giving the researcher access to the world of their life [
39]. These descriptions of lived experience can provide us with an extended understanding of the influence of DCCs on the family caregivers’ experience of relief and support.
The participants were recruited from the research project ‘
Effects and costs of a day care centre programme designed for people with dementia – a 24 month controlled study’ (ECOD) [
40]. The ECOD study has a quasi-experimental design including a group of day care users and their closest family caregivers (intervention group) and a comparison group of people with dementia, with no access to day care, and their caregivers. The ECOD study is funded by unrestricted grants from the Research Council of Norway and has been accepted by the Regional Committee in Ethics in Medical Research of South-East Norway.
The criteria for the inclusion of participants in the present study were that they are family caregivers to a person with dementia attending a DCC designed for people with dementia and, furthermore, that they have face-to-face contact with this person a minimum of once a week. Additionally, the sample of participants was chosen to represent both genders, a variety in age and different relationships to the person with dementia (spouses, children/children-in-law, living together with the person or not). There were no exclusion criteria. The participants gave written, informed consent to take part in the study at the time they were recruited.
Seventeen individual semi-structured interviews were carried out in March and April 2015. A stratified sample for qualitative interviews based on gender, age, relationship to the person with dementia, and cohabitation was chosen from the participants in the ECOD study (see Table
1). The variations in the characteristics of the participants represented different needs and settings, and thus, there was diversity in the data collected. The participants were connected to six DCCs located in rural districts and cities.
Table 1
Characteristics of the participants and the persons with dementia
1. Son | 52 | No | No | Father | Very mild | 74 |
2. Daughter | 56 | No | No | Mother | Mild | 77 |
3. Wife | 74 | Yes | No | Husband | Mild | 77 |
4. Daughter | 59 | No | No | Mother | Very mild | 80 |
5. Daughter-in-law | 47 | No | No | Mother-in-law | Mild | 82 |
6. Son | 47 | No | Yes | Mother | Mild | 80 |
7. Wife | 79 | Yes | No | Husband | Moderate | 83 |
8. Son | 46 | No | Yes | Mother | Very mild | 76 |
9. Wife | 77 | Yes | No | Husband | Mild | 87 |
10. Wife | 72 | Yes | No | Husband | Moderate | 81 |
11. Wife | 86 | Yes | No | Husband | Mild | 92 |
12. Daughter | 58 | No | No | Mother | Mild | 81 |
13. Husband | 76 | Yes | No | Wife | Mild | 74 |
14. Daughter | 70 | No | No | Mother | Mild | 96 |
15. Daughter | 65 | No | No | Mother | Moderate | 87 |
16. Husband | 77 | Yes | No | Wife | Mild | 72 |
17. Wife | 74 | Yes | No | Husband | Mild | 79 |
There were 17 family caregivers who participated in the study, and they were recruited by the leaders of the DCCs. These participants had attended a DCC with activities designed for persons with dementia for approximately 2 - 18 months, 2 - 5 days a week. The interviews were made face-to-face at the DCC (n = 4), by Skype (n = 2), or in the participant’s home (n = 11). The interviews lasted for 30 - 90 minutes.
Based on the aims of the study, research findings, and national political documents, the interview guide (Table
2) was arranged using open themes that invited the participants to describe their situation and experiences with the DCC.
Table 2
The interview guide
1. Introduction - relationship | Please tell me about your situation after NN got dementia? In what way does the dementia disease affect your daily life? In what way does the dementia disease influence your relationship? |
2. Day care - in the beginning | How did you experience the process ahead of DCC attendance and the first days and weeks? |
3. A typical day | Can you describe a typical day when NN is attending the DCC (before, during and after)? |
4. Day care as a support and respite service | To what extent and in what way do you experience the DCC to be a respite service for you as a family caregiver? |
5. The content and quality of the DCCs | What are your experiences with the content and quality of the DCC? Are there some elements of the DCC service that are more important than others for you? |
6. Summary questions | DCCs are considered to postpone the need for residential care. What do you think about that? What do you think about the future? In summary, what does the DCC represent for you? |
The data analysis was performed using systematic text condensation [
37,
38], according to the following four steps: 1) Total impression – from chaos to
themes
. The whole text was read through several times to get an overview of the total content and to identify the overall themes to be further analysed. Three themes describing how the family caregivers experienced their complex caring roles and four themes related to how the day care centre influenced this role were identified. 2) Identifying and sorting
meaning units – from themes to codes, with the codes being a text fragment containing some information about the identified themes of interest. 3) Condensation – from code to meaning, where the data were reduced to a decontextualized selection of meaning units and sorted as
thematic code groups across the individual participants. In this step, we went back to the transcript of interviews seeking meaningful quotations describing the content of the codes. The quotations demonstrate both similarities and differences in how the family caregivers experience their role and how the DCC influence theirs. Differences in role, gender and age are presented in the summary of results. Initially, the first author performed this process, while further discussions and reorganization occurred in collaboration with the co-authors. The Nvivo qualitative data analysis program was used. 4) Synthesizing the codes into descriptions and concepts [
38].
Discussion
Participants described many elements of their situation that resulted in a rich and powerful resource for understanding how DCCs influence their role as caregivers. The findings are presented by utilizing the major themes: (a) Respite and shared responsibility, (b) Day care attendance and the influence on the relationship between the family caregiver and the person with dementia, (c) Limited opening hours - consequences for the caregiver’s social life, (d) Quality through an individualized programme and cooperation with caregivers, and (e) Does DCC attendance postpone the need for nursing home placement?
Respite and shared responsibility
Day care relieves family caregivers by meeting the person with dementia’s needs for social community, nutrition, physical activity, and structure and variety in everyday life. This experience of relief was independent of the relationship to the person (i.e., spouse or children), gender, and whether they lived in the same household. The results from previous research shows that day care provides family caregivers with a feeling of shared responsibility, in the sense that someone is able to take responsibility for the person with dementia if the family caregivers should become ill or die. If this happens, then the caregivers feel safe that the staff at the DCC know the person with dementia’s situation and condition and can give that information to other relevant health units in the municipality [
7]. The present study shows that DCCs additionally provide the families with a sense of shared responsibility and relief while they are still active in their caregiving role.
The caregiver’s responsibility leads to a feeling of commitment. Previous research shows that female caregivers find themselves tied into the care situation to a larger extent than do men [
41]. Our study shows that men and women and spouses and children all feel the need to be on their guard, adapting themselves to the needs of the person with dementia all the time, as it feels difficult to leave them alone. The DCC gives the relatives valuable respite from the experience of being tied down, but because of the limited opening hours and days, this service cannot fully meet the person with dementia’s needs if the relatives are unable to provide care for various reasons. In these situations, the person with dementia would need help from other family members, more frequently home-based services or residential care.
The increased need to handle practical tasks can be a physical burden for family caregivers, especially those in poor health. Many of these caregivers do all the cooking and cleaning, and they take care of the laundry. These tasks are to be taken care of in addition to, or instead of, receiving public or private practical assistance. Attendance at a DCC makes these daily responsibilities less demanding for family caregivers as they can carry out the necessary practical tasks without being disturbed. Bowel incontinence of the person with dementia was described as a great burden that could trigger the need for nursing home placement. We may assume that family caregivers would like to use more of the separation time to rest and take part in pleasant activities if they were relieved from the large amount of practical tasks with which they are often saddled. Individualized and tailored arrangements and flexibility in assistance with practical tasks at home can likely improve the caregiver’s situation.
This study revealed important information about the complexity of the family caregiver role according to the challenging relationship, new tasks and the added responsibility for meeting the needs of the person with dementia. Family caregivers felt that the DCC definitely gave respite and a feeling of shared responsibility for the caring tasks, although there were some limitations, which will be further discussed below.
Influence of day care attendance on the relationship between the family caregiver and the person with dementia
The fact that the caregivers’ basic need for rest is met gives them new energy and more patience to handle relational challenges. The mental burden that comes with caring for a spouse with dementia can be associated with losing a sense of community with the partner [
42], and this was confirmed by the participants in our study. Additionally, the study reveals that children also experience this kind of loss. However, day care provides new impulses and gives the people with dementia more to talk about. A person with dementia cannot always remember their experiences at day care, and so the caregivers ask for information about what is occurring at day care so that they can use it in conversations. Information from the staff shared in a notebook, by SMS, or mail can facilitate daily chats.
The family caregivers experienced fewer conflicts and less nagging when the person with dementia participated in the DCC. That change led to increased wellbeing and a higher quality of the relationship with the person with dementia. A good relationship increases the probability of a positive and meaningful experience in the role of caregiver. Knowledge about dementia can lead to a new understanding and more empathy for the person with dementia and hence increased acceptance of their caring role [
43]. Maintaining or building a good relationship between the caregiver and the person with dementia might have a positive impact on the role of the caregiver. Previous research reveals that caregiving tasks that are experienced as meaningful can be a potential buffer against caregiver burden and influence the caregiver’s mental health positively [
44]. The experience of a good relationship increases the likelihood of the caregiver valuing the person with dementia more and not focusing mainly on the problems. Furthermore, caregivers who experience a high degree of mutuality in the relation tolerate staying in the caregiving role longer than do caregivers who experience low levels of mutuality [
45]. Thus, being a caregiver might fill a need for meaning in life, which can motivate and empower people to handle even the most difficult situations. According to Logo-therapy (Frankl, 1963), shifting the focus away from our own needs to concentrate on satisfying others is health-promoting and can make life more meaningful [
46,
47]. The DCC’s contribution to a better relationship and a deeper understanding of the situation between the family caregivers and the person with dementia can strengthen the caregivers’ ability to care and reduce the caregiver burden.
Limited opening hours - consequences for the caregiver’s social life
This study reveals that limited opening hours at the DCCs influence the caregiver’s potential to have a social life. Short and fixed opening hours and the lack of service during public holidays and vacations give relatives limited opportunities for an active social life, especially in the evenings. The need for flexible opening hours, as expressed by the family caregivers, confirms previous research that showed that flexible opening hours and programmes are important for the DCCs to provide respite [
31,
36,
48]. Social stress is one of the factors affecting the burden on the family caregiver [
10,
12]. Therefore, helping families to address their need for ‘social capital’ (contact that gives access to social, emotional, and practical support) has a positive impact on the caregiver burden [
49]. To meet these needs, DCCs should be open during holidays and weekends, and opening hours should be longer and more flexible.
Quality through an individualized programme and cooperation with caregivers
Some family caregivers reported that the DCC programme was not adjusted to the person's background and functional level and that the person with dementia felt uncomfortable. The caregivers felt guilty, and the situation increased their feeling of burden. Staff knowledge about the person’s identity and the possibility of individualized care had an influence on the family’s feeling of respite. Previous research describes that the quality and expertise of dementia care, shown by tailored day programmes and activities for the person with dementia, give the person social support and activities, which enhance coping [
3‐
5].
In contrast to previous research showing the need for information and support for family caregivers to be offered by the DCC, the caregivers in our study received this type of information at classes for family caregivers; these classes were provided through a support and educational programme organized by the municipalities [
50]. Those who attended these classes had lower expectations of education and support from the DCC than had emerged in previous research [
7]. A few of the participants were offered individual support and structured meetings with the DCC staff, and they found this service very useful. In these meetings, caregivers received information about the DCC programme and individualized care, and this information made them confident of the quality of the service. Only a few caregivers had been offered individual meetings, but many of them expressed a need for this. As many families have limited or no daily contact with the DCC staff, individual meetings are important for cooperation, the exchange of information, and support. Additionally, such meetings gave the caregiver the opportunity to share important information with the staff about the person with dementia. Hence, regular meetings with family caregivers to exchange information and experiences should be given high priority.
Does DCC attendance postpone the need for nursing home placement?
Some of the family caregivers stated that the DCC, combined with their own running care, surprisingly postponed the need for nursing home placement. It should be noted that a premise for this statement is the need for the family caregiver to be relatively healthy in addition to the functional level of the person with dementia, especially with relation to hygiene. Many of the family caregivers in the study were convinced that the person with dementia was unable to live on their own, even with the availability of more home-based public care. To postpone nursing home placement, daily support from family caregivers is crucial in addition to support from the DCCs.
Summary of implications
To summarize the implications of the findings in this study, the following aspects are important. The family caregivers feel responsible for the person with dementia’s need for nutrition, physical activity and social stimulation. To share this responsibility with the DCC gives them relief that presupposed individual adaptation of the service. Therefore, meeting these needs should be a high priority in DCCs.
Day care seems to have a positive influence on the relationship between family caregivers and the person with dementia; it provides family caregivers with more energy and patience, reduces behavioural challenges and provides the family caregiver and the person with dementia with positive topics of conversation. Information about content and schedules at the DCC will help family caregivers in their daily conversation with the person with dementia.
According to this study, DCCs might contribute to the postponement of nursing home placement. However, this result depends on flexible opening hours, high quality of the DCC programme and regular cooperation with family caregivers.
Methodological considerations
The aim of this study was to provide an enhanced understanding of the impact on family caregivers of DCCs designed for persons with dementia. The in-depth semi-structured interviews provided a rich source of material with personal descriptions related to the aim of this study. The participants represented a diversity of genders, ages, and caregiver roles (spouses, children, living together or separately). Moreover, the sample represented caregivers of people with various degrees of dementia and with different numbers of hours and days at the DCCs, which is a strength of the current study. There were only two participants still working (both sons), which resulted in limited information about job-related issues. There are also other limitations of this study. Only one interview was made with each participant, and hence, there was no possibility to study the researchers’ interpretations of the data or for the participants to add further information. The data were originally collected to explore the influence of DCC on family caregivers and not to focus on describing their situation generally. Other limitations due to sampling techniques may influence the external validity, and, because of this, the results cannot be generalized to other groups of caregivers. However, the results can elucidate the needs of similar groups of family caregivers, their situations, and how their needs for support and respite can be met.
Conclusion
The current study supports findings from previous studies describing caregiver burden and the need for caregiver support. Our findings add an extended understanding to how DCCs designed for persons with dementia can offer relief and support for family caregivers and increase their ability to meet the needs of the person with dementia on a day-to-day basis. This study reveals a possible positive impact of DCCs on the relationship between the family caregiver and the person with dementia and the possibility to postpone the need for nursing home placement.
Future research should focus on how the person with dementia experiences day care attendance and further explore how DCCs influence the relationship between the person with dementia and their family caregiver.
Acknowledgements
We wish to thank all who made this study possible, especially the family caregivers.