Study selection

The articles were evaluated using the quality score metrics proposed by the Mixed Methods Assessment (MMAT),^20,21 a tool for the qualitative evaluation of empirical studies that used qualitative, quantitative or mixed methods. The MMAT establishes corresponding criteria for each research method and scores are rated from 1 to 4, considering the description of each stage of method implementation, using descriptors such as *, **, ***, and ****.

Two authors (VLRM and MCND) screened titles and abstracts to identify eligible papers. We excluded all studies that clearly did not meet all inclusion criteria or that met at least one of the exclusion criteria. Subsequently, two authors (VLRM and MATB) independently reviewed the full publications of the remaining papers and held consensus meetings to discuss any disagreement and to reach a consensus about inclusion. When necessary, a third co-author of this paper (RLS) clarified study eligibility.

The articles were reviewed considering the research procedures and the configuration of DC, the program, its objectives, therapeutic proposals and theoretical basis.

Methodological aspects

Place. Ten out of the twenty-one studies were conducted in the USA,^22-31 three in the Netherlands,^32-34 one in Norway,³⁵ one in Norway and Scotland,³⁶ one in Iceland,³⁷ one in Hong Kong,³⁸ one in Australia,³⁹ one in Italy,⁴⁰ one in Sweden⁴¹ and one in Germany.⁴² No articles on DC in Latin America were found.

Sample. Nineteen studies included FC of both genders, ^{22-24,26,28-42} predominantly women, while two included females only,^25,27 Regarding the type of FC relationship with the PwD, fifteen studies included spouses, children and others,^{22-24,26,28,31-39,41} two included only wives and daughters,^25,27 whereas four studies did not specify the kinship.^29,30,40,42 All articles reported that people were diagnosed with dementia, without specifying the causes.

Study design. No randomized controlled trials were found. Six descriptive qualitative studies^{23,24,32,35,36,38} and a longitudinal phenomenological interpretative study³⁷ were found. Of the six studies, two were longitudinal^37,38 and four cross-sectional.^23,24,32,35 These studies collected reports from caregivers to understand their needs for support and respite, and the role of Day Care in improving the relationship of care, health status and quality of life of the dyad. Ten non-randomized quantitative longitudinal studies with control-group design ^{22,25,27,28,30,31,33,34,40,42} and four descriptive quantitative studies^26,29,38,41 were also found. Seven articles evaluated a group of DC user's caregivers comparing them with non-users' family control groups.^{22,25,27,30,31,40,42} Three articles evaluated a group of DC user's caregivers that participated in a special family support program in association with the care provided to PwD via integrated approaches, while control group caregivers participated in the care offered by a standard DC setting which offered activities to PwD only.^28,33,34

Caregivers' outcomes. In the study by de Jong et al.,³² the needs and expectations expressed by the FC regarding the assistance offered by the DC emphasized the importance given to the provision of education, counseling and support, access to information about the structure and program of the DC, as well as the professionals' expertise and the quality of their relationship with users. Phillipson et al.³⁹ found that the opportunity to learn care strategies through the observation of professionals and the opportunity to engage in other daily and social tasks were valued by caregivers. These aspects contributed to a more positive perception of DC among FC users than non-users.

Seventeen studies observed a reduction in time spent on care activities and in exposure to primary stressors,^{22-26,28-31,33-36,38-41} reduced feelings of burden,^{22,25,30,31,33,40,41} worry,^25,38,41 anger,^23-25,31 affective fluctuation and depression,^22-25,31 psychological/psychosomatic complaints,^24,33,41 and loneliness.²⁹ Increased feelings of competence^28,34 and freedom,³⁵ strengthening of coping strategies,³⁴ improved health status and greater psychological well-being^23,24,30,41 were also reported. The FC exhibited significantly less distress over behavioral problems of the PwD^26,40 and less stress associated with their own non-fulfilment of life expectations.^35,40 Having a break increased the positive experiences and free time to stay with other family members or friends,^23,24,35,39 increased morale²⁹ and social activity,⁴¹ and benefited the relationship between the dyad³⁶ and easier cooperation.³⁵

Mossello et al.⁴⁰ found no significant between-group difference in depressive symptoms change. Similarly, Zank et al.⁴² found no differences in well-being or burden on standard measures, but, in a semi-structured interview, FC reported substantial positive change promoted by the use of DC.

Kwork et al.³⁸ reported that PwD did not improve their capacity for self-care and mobility. Higgins et al.²⁹ reported that FC observed no changes in their own quality of life or that of PwD, and reported worsening of cognitive function and behavioral symptoms among PwD.

The observation of improvement in self-esteem and well-being, quality of life and health status, associated with increased social stimulation of the PwD resulted in a secondary benefit for FC health and quality of life.^{24,27,28,36-42} FC also reported that participating in the DC promoted a sense of kinship²⁷ and maintained the PwD cognitively,^26,36,38,39 functionally and physically active.³⁸ There were also improvements in behavior and sleep changes in the PwD immediately after the use of DC,²⁶ and lower use of psychotropic drugs.⁴⁰

A delay in institutionalization was associated with improved health of the dyad and in their quality of relationships.^{27,28,33,34,39} Cho et al.²⁷ observed that, for the wives, DC helped in accepting the possibility of separation, especially in the presence of behavioral problems.

Gústafsdóttir³⁷ observed that the DC reinforced family ties, crucial to continue home care, and contributed to the contentment of life of the whole family.

The last benefit of the DC for the FC was the sharing of care with professionals, the information exchange and reflection on the case, and proposing care strategies.^32,35,38,39 DC helped FC to develop a different perspective on the illness, as well as on its course, allowing a more respectful relationship regarding the individuality of the PwD.³⁷

The three articles that studied the benefits of an integrated approach compared to standard care offered to PwD only, observed a significant decrease in FC suffering over PwD behavioral problems,^28,33,34 increased feelings of competence, self-confidence and coping strategies to avoid problem situations and postponement of PwD institutionalization.^28,33,34 The families enrolled in the program used more DC than families receiving standard care.²⁸ Nevertheless, it was not effective for reducing the determinants of feeling of burden.^33,34

The characteristics of the selected studies are shown in Table 1.

Configuration of day care

Sources of subsidy. Different sources of subsidy for DC were reported. Rokstad et al.³⁶ stated that in Norway, when a DC is considered a health care service for the PwD, it is regulated and subsidized by the municipalities. If it is defined as a respite for the FC there is a subsidized payment for attendance. In Scotland, the DC is provided by statutory, private, and third sector organizations and regulated by the Care Inspectorate. The Dutch skilled DC facilities are part of the nursing home organization, and are subsidized and legislated by the government.^32-34 In Germany, these services are paid for by health insurance, care insurance, patients, or social welfare.⁴² In New Jersey (USA), the statewide network of adult DC is provided in part by the Department of Health and Senior Services for FC with low and moderate income.^26,31 One study was financed by the U.S. Administration on Aging Alzheimer's Disease Demonstration Grants to States funds and state matching funds.²² Three studies were conducted in DC funded by private sector and third sector or self-funded partnerships without subsidies or legislation by the government.^29,38,41 Eleven articles did not state whether the DC was funded by an institution or whether it was paid for by the users.^{23,24,27,28,30,35,37,39,40}

Structure. Twelve articles provided no information about the structure of the DC.^{23-25,27,28,30,35-39,41} Nine studies presented information on the regimen of use of the DC, which varied from one to five times a week and from 4 to 8 hours daily.^{22,26,29,31-34,40,42} Regarding the competence of the team, only six studies reported having a multi-professional staff,^{22,28,32,36,40,42} which included social assistants,²² nurses,^22,28,40,42 occupational therapist and speech therapist,²² physiotherapist and geriatrician,⁴⁰ Director of center, family service provider, activities specialist,²⁸ and three reported having the participation of volunteers.^29,36,42

Program. Eleven studies did not describe the activities offered.^{23-25,27,28,30,31,35,37,39,41} Two studies reported recreational activities, social interaction and meals.^36,40 In addition to these activities, seven studies also included psychosocial activities, activities of daily living, cognitive stimulation, physical and psychomotor activity, and music therapy.^{22,26,29,32,33,34,38,42}

Twelve articles made no mention of whether the DC offered caregiver support programs.^{23-27,30-32,35,36,39,41} Caregivers were supported by designated case managers in one study,³⁸ informal counseling was provided in another,⁴⁰ two studies offered educational program for caregivers,^29,42 and one offered caregiver support groups.³⁷ Logsdon et al.²² described the Memory Care and Wellness Services (MCWS) program. This program provides specialized activities and exercise for PwD. The FC are involved in planning care for PWD and receive support and information, including referral services.

Drões et al.^33,34 evaluated whether an integrated program offered to the dyad would positively influence some potential determinants of burden. In the program, the PwD participated in social activities, recreation and rehabilitation. Simultaneously, the FC received emotional and social support based on a psychosocial diagnosis. The program included ten educational groups, a biweekly support group. PwD and FC participated in a weekly counseling meeting and a monthly meeting with all staff in which they discussed possible adjustments to the treatment program.

Gitlin et al.²⁸ studied Adult Day Services Plus (ADS Plus), a special support program for FC focused on user needs. FC were interviewed at the beginning of treatment, after three months and at one year. The FC received advice, information and educational materials through periodic personal contact or by telephone. At the same time, the PwD regularly participated in the DC program of activities.

Objectives and therapeutic proposals. The DC proposes to offer significant activities,^36,41 a safe environment, as well as social, emotional and health support^22,29,32,36 for the PwD. Some programs offer rehabilitation care,³² recreational activities,^36,40 and motor and cognitive stimulation.^{26,28,32-34,36,38,42} They propose to improve their coping strategies³⁶ and quality of life,^36,38 maintain cognitive functioning, physical ability, functional capacity.^{26,28,32-34,36,38,42} behavioral status, nutritional status.³⁸ as well as promote a sense of kinship²⁹ and well-being.⁴² The DC programs also serve as a respite service for FC.^{22,33,34,36,40} The program objectives are to alleviate FC stress and burden,^40,42 improve their knowledge about the disease^28,33 and sense of competence related to the caregiving tasks,³³ to give them emotional and social support,^28,33,41 offer counseling,²⁸ facilitate continued care at home^22,40 and postpone the need for institutionalization.^36,41

Theoretical basis. Only four studies reported the theoretical basis of the support program offered to FC. Drões et al.^33,34 cited the Meeting Centres Support Program (MCSP), with a theoretical framework based on the adaptation coping model^43,44 and the model of determinants of experienced burden. The models consider negative social circumstances as determinants of burden. Gitlin et al.²⁸ stated that the ADS Plus was based on the Pearlin et al.⁴⁶ stress process model. The program targets the primary stressors of caregiving: behavior problems of the PwD and the physical, mental, and social health of the FC. The approach was used to support positive intrapsychic factors (such as the perception of competence and rewards of caregiving), as well as to introduce positive coping strategies (such as problem solving) in order to mediate objective stressors of caregiving. Zank et al.⁴² only reported that the DC units studied offered a rehabilitation program based on clinical experience and gerontological knowledge.

The structure, objectives and theoretical basis of the DC are depicted in Table 2.

Structure and organization

Attendance frequency varied from one to five times a week and the number of hours from four to eight hours per day.^{22,26,29-34,40,41} This variability possibly influences the results presented in the studies. Research on the needs and expectations of FC has identified an important demand for flexibility of the DC in relation to available days and times, and the possibility of a regular or intermittent frequency,^{7,9,28,32,35,36,39} numbering among the factors determining users' level of satisfaction. These aspects involve accommodating possible changes in the daily needs and schedules of FC. This flexibility has a considerable influence on the levels of burden and quality of life of the dyad.^{3,9,28,32,35,36,39}

Intervention design

The diversity of the intervention designs impacts the results of the studies.³⁵ Some studies did not describe the activities offered, mainly because they aimed to investigate the benefit of the break from care for the FC.^{23-25,27,30,31,35,37,39,41}Among the programs described, some offered activities for PwD only,^26,32,36 while others included activities for the dyad.^{22,28,29,33,34,37,38,40-42}

The two approaches, including the caregivers in the service or otherwise, identified different protocols of activities aimed at PwD. Programs of recreational activities with an emphasis on socialization and well-being,^36,40 and others that included both motor and cognitive stimulation plus rehabilitation.^{26,28,32-34,36,38,42} The results showed that the provision of physical, cognitive and social stimuli positively impacted well-being and health in general, sleep quality, functioning and cognitive readiness, even in participants with reduced cognitive capacity.^{26,35,36,38,40,42} These studies reinforce the premise that lack of activity contributes to the emergence of PwD neuropsychiatric symptoms.^46-50 Conversely, a multimodal program of cognitive and physical rehabilitation can improve socialization mood and also reduce caregiver burden.^46-50

The results concerning the impact of activities on behavioral changes were contradictory. Zarit et al.²⁶ and Mossello et al.⁴⁰ observed a significant reduction in behavioral changes, leading to an improvement in sleep in users on days of DC use,²⁶ along with a reduction in the prescription of psychotropic drugs, when compared with non-users of DC.⁴⁰ Kwok et al.,³⁸ on the other hand, observed no improvement. These disparities may be related to methodological differences and to intervention time. In any case, the improvements observed reduced the impact of primary stressors on FC and, as a secondary result, burden was reduced.^36,38,39 In turn, the certainty that the PwD would be protected in a friendly environment, involved in meaningful and stimulating activities, and would receive personalized attention adapted to their interests and levels of functionality, were relevant aspects for FC confidence in the service.^32,35,36,39 Notably, the high degree of heterogeneity precluded analysis of the effect size of the studies.

Different approaches to FC were observed. In one study, the DC program offered informal counselling,⁴⁰ but the model was not described. In some programs, the FC were only marginally involved in care.^28,34,42 In others, the program included support interventions,^{22,28,29,33,34,37,38} such as educational programs^{22,28,29,33,34,42} and support groups,^{22,28,33,34,37} both with the aim of improving FC sense of competence regarding the caregiving tasks. Some programs also offered social activities, such as parties and trips, during which the FC had the opportunity to interact in a fun way with their family member.^33,34,37 In some services, the FC were supported by case managers or had regular meetings with staff.^22,28,37,38 In such cases, FC, along with staff, analyzed needs, and developed a care plan to be implemented both at home and at the DC.^{22,28,33,34,38} Treatment follow-up occurred through face-to-face meetings or by telephone contact, in which FC expressed their observations, concerns and needs, received counseling and were informed about referral services.^{22,28,33,34,37,38} The way in which DC met the need for flexibility, support, information and sharing of responsibilities was positively highlighted by FC.^{22,28,32-36,42} The studies suggested that this integrative approach better addresses the different needs of FC.^28,33,34 However, these results cannot be considered conclusive since they are similar to those observed in other non-integrative approaches. In addition, the heterogeneity observed in DC approaches hinders characterization of a gold standard for this kind of intervention.

Theoretical basis

With regard to theoretical background, the adaptation coping model adopted by the MCS was briefly described in the two articles by Drões et al.^33,34 This model provides a framework for explaining behavioral problems in PwD, based on the principle that people constantly strive for balance when confronted with changes in their existence.^43,44 The socioenvironmental, material and determinant factors of the disease are believed to interfere in the subjective evaluation of the PwD about their condition. Consequently, given the imbalance generated by the disease, the person has to carry out cognitive, social and emotional adaptive tasks. This adaptation implies a learning process and depends on the quality of interaction with the environment.^43,44 Therefore, the dyad are assisted in this complex process of adaptation that includes learning to deal with limitations and dependence, maintaining and establishing social relations, dealing with environmental aspects and prescribed treatments, preserving an emotional balance, a positive self-image and preparing for an uncertain future.^43,44 This theory offers an understanding of the PwD response to the illness and guides a stimulation program that facilitates the adaptive process and support that helps the FC understand the condition of the family member and to reflect on more effective care strategies. However, by focusing only on the aspects related to primary stressors, it disregards possible secondary stressors that interfere with the care relationship and contribute to the feeling of burden. The focus is on understanding the PwD experience, the consequences of the illness, and possible coping strategies.

The stress process model of Pearlin et al.⁴⁵ was cited by Gitlin et al.²⁸ as the theoretical basis of ADS Plus. Firstly, this theory considers the difficulties and problems anchored directly in care as primary stressors. Secondly, the socioeconomic conditions, conflicts and tensions resulting from working, family relationships and social life, or intrapsychic tensions associated with the personality or decrease in the caregiver's self-concept were considered secondary stressors.⁴⁵ From this perspective, coping and social support can potentially influence multiple aspects throughout the stress process.⁴⁵ This theory offers a theoretical scope that allows a diagnosis and understanding of the situation of the FC, and proposes specific intervention strategies to support and improve the resources and conditions of care. The focus of the intervention was centered on FC experience and their resources for care.

The person-centered approach was cited as the recommended theoretical axis to guide the care model of the DC.³⁶ This theory entails a theoretical principle underlying the different psychosocial models as it shifts the focus of the disease to the PwD and the way in which they experience their condition.

These approaches are offered as theoretical references for care delivery and are part of the set of psychosocial models used in the field of Psychogeriatrics.⁴⁴ In this field, the theories articulate three fundamental axes: the focus on the sick person and their experience, the focus on the caregiver and their experience, besides understanding of the disease and its consequences.⁴⁴ The approaches seek to understand the multidimensional aspects that contribute to the condition of the PwD and FC, considering their needs, suffering, resources, coping strategies and the impact of illness on the family relationship. The theories analyzed are not exclusive, as each focuses on fundamental aspects for the provision of dementia care. The development of further DC should include a theoretical framework in order to enable more consistent intervention.

Limitations

The possible influence of socioeconomic and cultural differences between the samples studied calls for caution in the interpretation of results. Likewise, the lack of standardization in the configuration of DC hampers comparison of results. In addition. the conception of DC as a rest service, restricts the understanding of its therapeutic role as a treatment and rehabilitation device for PwD, and a source of guidance and support for FC.

Most of the studies failed to describe the strategies of interaction, support and guidance for FC, and did not explain the theoretical framework that conceptually defines the services model and its therapeutic goals. The lack of a detailed description limits the interpretation of the congruence of results in relation to objectives proposed and intervention programs.

In conclusion, The reduction in daily exposure of the FC to primary stressors promoted a rest period and contributed to the continuity of the family living together with the PwD, delaying institutionalization. The DC appears to be a promising technology for reducing FC burden, thereby improving their health and quality of life.

Integrated programs that cater for the needs of the PwD and their FC represent a promising approach that meets their needs and demands in a multidimensional manner. The DC is a technology that aims to promote health, prevent disease and also provide treatment through interventions that minimize burden and enable long-term care. However, there is a lack of integrative approaches that articulate the contribution of different complementary theories and guide comprehensive and cost-effective intervention programs.