Vol. 13 nº 3 - Jul/Aug/Set de 2019
Original Article Pages 268 to 283
 

Effectiveness of day care in supporting family caregivers of people with dementia: a systematic review
Eficácia do centro dia no apoio a cuidadores familiares de pessoas com demência: uma revisão sistemática

Authors: Virgínia Lúcia Reis Maffioletti; Maria Alice Tourinho Baptista; Raquel Luiza Santos; Valeska Marinho Rodrigues; Marcia Cristina Nascimento Dourado

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Descriptors: day care, Alzheimer disease, caregiver, quality of life, psychological adaptation.
Descritores:
centro-dia, demência, doença de Alzheimer, cuidador, qualidade de vida, adaptação psicológica.

ABSTRACT:
Day care (DC) provides a break in daily care as a support strategy for family caregivers (FC) of people with dementia (PwD).
OBJECTIVE: to analyze the support strategies used by the DC for FC, their methodological and theoretical models, as well as the respective benefits for FC burden, coping strategies and quality of life.
METHODS: a systematic review following the Prisma methodology was performed on PubMed, PsycInfo, Scopus and SciELO electronic databases in August, 2018. The search keywords were "day care", "dementia" or Alzheimer disease, "caregiver", "quality of life" and "psychological adaptation". Results: twenty-one studies were included. No randomized controlled trials were found. The provision of education, counseling and support, access to information, the professionals' expertise and the quality of their relationship with DC users were highlighted by caregivers. Compared to standard programs centering on PwD, the integrated program focused on PwD and FC activities showed increased feelings of competence and self-confidence of FC to postpone institutionalization. Heterogeneity in the structure and organization of the DC programs, intervention strategies and theoretical basis was observed.
CONCLUSION: Integrated programs are a promising approach that addresses the needs and demands of PwD and their FC in a multidimensional manner.

RESUMO:
O centro-dia (CD) permite uma pausa no cuidado diário como estratégia de apoio aos cuidadores familiares (CF) das pessoas com demência (PcD).
OBJETIVO: analisar as estratégias de suporte aos CF oferecidas pelos CD, seus modelos metodológicos e teóricos, bem como os respectivos benefícios sobre sua sobrecarga, estratégias de enfrentamento e qualidade de vida.
MÉTODOS: uma revisão sistemática utilizando a metodologia Prisma foi realizada nos bancos de dados eletrônicos PubMed, PsycInfo, Scopus e SciELO em agosto, 2018. As palavras chave da pesquisa foram "centro dia", "demência" ou doença de Alzheimer, "cuidador", "qualidade de vida" e "adaptação psicológica". Resultados: vinte e um estudos foram incluídos. Não foram encontrados estudos randomizados. A oferta de educação, aconselhamento e apoio, o acesso a informações sobre a estrutura e o programa do CD, a expertise dos profissionais e a qualidade da relação destes com os usuários foram aspectos ressaltados pelos cuidadores. Comparados aos programas padrão centrados na PcD, estudos descrevendo o programa integrado, focado nas atividades para PcD e CF, mostraram um aumento no sentimento de competência e autoconfiança do CF e adiamento da institucionalização. Observou-se heterogeneidade na estrutura e organização dos programas de CD, nas estratégias de intervenção e nas bases teóricas.
CONCLUSÃO: programas integrados são uma abordagem promissora que atende às necessidades e demandas das PcD e seus CF de forma multidimensional.

By 2030, there is set to be an exponential increase in the costs of caring for people with dementia (PwD) worldwide that will burden social and health services, including long-term care systems.1,2 The informal care offered by the family represents a high economic cost, as it compromises the available time of the family caregiver (FC) for formal work, family and social activities.2,3 For families, the financial impact is significant, considering the costs of medical care, treatment, in addition to formal and informal care.3 Economic analysis takes into account the cost/benefit of informal care to provide policymakers with information guiding sustainable actions and care plans which support FC.2,3

In the last twenty years, day care (DC) has been studied as an important health technology in the configuration of support strategies for PwD and their FC.4-9 Proposed as a service model that provides a friendly environment and care for PwD, while the FC have a break that decreases their exposure to primary stressors, the DC seeks to reduce the burden of care4-9 and improve the quality of life of the dyad. Studies comparing different community-based temporary care strategies suggest that this care model is the most economical one.10

The complexity of the situation experienced by FC, in most cases, generates a burden that compromises their physical and psychological health, impacting their availability for care and can induce early institutionalization of PwD.11-13 Moreover, the FC burden is worsened by their physical limitations, psychological and psychosomatic complaints, emotional aspects such as anger, fear, guilt, depression,8,14,15 feelings of dissatisfaction with life and loneliness, doubts about their competence and the effectiveness of their coping strategies. The presence of secondary stressors, such as financial difficulties, the conciliation of care with other family and professional demands, social isolation,5,6 and lack of information on the course and prognosis of dementia, about care and management strategies, as well as the need to adapt to the environment, are also factors that may influence caregiver burden.7

Beneficial outcomes have been described for FC who participate in DC, such as decreased stress,14 depression,14 anger,15 more positive daily experiences,16 and overall improvement in health and well-being.5,8 Tretteteig et al.,7 in a recent integrative review, concluded that DC provide a sense of security and relief for FC, reduce burden and increase motivation for care. Vandepitte et al.,5 in a review on the effectiveness of temporary care in supporting FC, observed a decrease in the FC burden and behavioral problems of the PwD. However, DC attendance did not delay institutionalization. Fields et al.8 suggest that, given the diversity of service settings and the different models of support offered to caregivers, it is difficult to discern the benefits of reducing FC exposure to primary stressors of those associated with the specific interventions, such as psychosocial and psychoeducational interventions, or individual counseling. This lack of standardization of services makes research in this area a heterogeneous field, while also limits the interpretation of results and their replication.8,17 In addition, the caregiver approaches offered by DC,8 include psychosocial and psychoeducational interventions, individual counseling and occasional meetings, but most of the studies do not present the theoretical assumptions that underlie this type of technology.7,8

In view of this, the present review aims to analyze the intervention models for FC that make up the settings of the DC, considering their methodological and theoretical models, as well as the respective benefits for FC burden, coping strategies and quality of life.


METHODS

This systematic review used the methodology suggested by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)18 criteria. The search was performed according to the following PICOS:19

P caregivers of people with dementia;

I day care;

C caregivers assisted by outpatient programs, caregivers without interventions, patients and caregivers without interventions;

O stress, burden, quality of life, coping skills and postponement of institutionalization;

S cross-sectional, longitudinal, randomized, non-randomized and case-control studies.


The literature search was performed on August 2018, using PubMed, SciELO, PsycINFO and Scopus databases. Studies published from 1998 and 2017 were included. The search keywords included the following MeSH terms: "day care" [MeSH} or (care day) or (partial hospitalization) and "dementia" [MeSH] or Alzheimer disease [MeSH] or (Alzheimer's disease) or (Alzheimer type dementia) and "caregiver" [MeSH] or (family caregiver) or (carers) and "quality of life" [MeSH] or (Health related quality of life) and "adaptation, psychological" [MeSH] or (coping behavior) or (coping skills). A manual search was also performed by revising the reference of all papers selected. The inclusion criteria were: 1. cross-sectional or longitudinal studies, 2. randomized or nonrandomized, 3. with or without a control group, 4. studies on day care for people with dementia with caregiver outcomes, 5. reports written in English or Portuguese.

The exclusion criteria were: 1. Participants with other pathologies; 2. Other community or outpatient care settings; 3. Evaluation of specific therapeutics (medications, physical exercise, occupational therapy etc.); 4. Evaluation of instruments; 5. Literature reviews; 6. Other languages; 7. Studies without full text; 8. Outcomes focused on the PWD; 9. Books, dissertations and theses; 10. Public health policies and epidemiological studies.

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.


RESULTS

The initial database searches retrieved 587 articles; 82 were found on PsycINFO, 301 on Scopus, 202 were identified on PubMed and 2 on SciELO. All the authors reviewed the selected documents to reach a consensus.

After duplicates were removed (n=274), 299 studies not meeting inclusion criteria were excluded, and fourteen studies were selected for inclusion in this systematic review. Seven further studies were identified by manually searching the references in the selected articles. Twenty-one papers had been selected by the end of this search process (Figure 1). A flow diagram of the study selection process is depicted in Figure 1.


Figure 1. Flow of information through the different phases of the systematic review.



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 studies23,24,32,35,36,38 and a longitudinal phenomenological interpretative study37 were found. Of the six studies, two were longitudinal37,38 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 studies26,29,38,41 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 competence28,34 and freedom,35 strengthening of coping strategies,34 improved health status and greater psychological well-being23,24,30,41 were also reported. The FC exhibited significantly less distress over behavioral problems of the PwD26,40 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 support22,29,32,36 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 disease28,33 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 home22,40 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 model43,44 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.




DISCUSSION

Historically, the DC, as a strategy for supporting FC, was originally intended to offer a break in caregiving tasks, and to maintain or improve the health and quality of life of the PwD-FC dyad. This concept of service was inspired by studies on the burden and coping strategies of family caregivers and the impact on their quality of life.2-7,9 Currently, DC are also considered a fundamental community-based technology for health care, which aim to offer all interventions to promote health, prevent and treat, improve rehabilitation and long-term care.4-6,35

The need for support, together with the benefits outlined, has justified investment from different actors, such as governments, statutory, third sector organizations, health insurance and assistance, universities, private institutions and families.25,29,31-34,36,38,41,42 Logsdon et al.22 reported that DC is the least expensive alternative for providing rest, emotional and health support to PwD, when compared to a non-medical home health intervention, home care or home nursing care. Although there is some evidence of the effectiveness of DC, the heterogeneity in service settings, activity schedules and staff, do not allow solid cost-effectiveness conclusions.2,6,22,44 This factor also contributes to limitations in funding and availability of these programs.2,6,22,44

Quantitative approaches with controls to evaluate the impact of this care22,25,27,30,31,40,42 and qualitative studies, to ascertain the expectations, needs and beliefs32,35,39 and level of satisfaction36 of the FC were implemented. No randomized studies were found, and some studies questioned the validity of this type of design due to ethical concerns with the impact of non-access to treatment for the controls in the case of longitudinal studies.26,45

There was methodological heterogeneity in the characteristics of the FC samples and in the assessments used. This diversity hinders comparison among studies and their outcomes. For example, case studies with controls compared the days of DC treatment to the days when the PwD was cared for at home,23,24,27,30,31 FC of PwD users were compared to non-users,25,39 while others only interviewed FC of DC users.35,37,39 Despite the great diversity of methods, sample sizes, measuring instruments and interviews, most of the studies reported similar positive results with DC use.22-37,39-42 The same heterogeneity was also evident in the configuration of the intervention regarding three aspects: the structure and organization of the DC programs, the design, and the theoretical basis.

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.23-25,27,30,31,35,37,39,41Among 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 programs22,28,29,33,34,42 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.

Author contributions. All authors contributed significantly to, and approved, the content of this manuscript.

Acknowledgments. Marcia Cristina Nascimento Dourado is researcher 2 and received funding from the Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)


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Center for Alzheimer's Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, RJ, Brazil

This study was conducted at the Center for Alzheimer's Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, RJ, Brazil.

Virgínia Lúcia Reis Maffioletti
Av. Pasteur, 120/403 - Botafogo
22290-240 Rio de Janeiro RJ - Brazil
E-mail - vmaffioletti@hotmail.com

Disclosure: The authors report no conflicts of interest.

Received January 10, 2019
Accepted in final form July 01, 2019

 

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