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Physical and social environment in the occupational therapeutic intervention process for elderly with Alzheimer’s disease and their caregivers: a systematic review of the literature

Abstract

Introduction:

Alzheimer’s disease has a significant impact on patients and their families. The restriction on participation is understood in its totality only if considered the context and environment in which the activities happen. In occupational therapeutic intervention, the actions aimed to the environment have been effective in engaging the elderly in significant occupations.

Objective:

Analyze the intervention process directed to the physical and social environment of the elderly with Alzheimer’s disease.

Method:

A systematic review was conducted, in a 10-year period (2006-2015), in English, Portuguese, and Spanish. The Web of Science, MEDLINE / PubMed, CINAHL, PsycINFO®, LILACS, SciELO, OTSeeker, and PEDro databases were used as sources of information. The inclusion criteria were selected for deeper analysis: scientific publications related to Alzheimer’s disease in elderly with the participation of at least one occupational therapist as an author and that considered the environmental interventions, or to discuss occupational therapy in Alzheimer’s disease without restrictions on the stage of the disease.

Results:

A total of 141 articles were found, of which only 9 met the selection criteria. National and international studies have shown close association of these interventions with the patient’s functionality, humor and quality of life of the dyad, better sense of competence among caregivers, less burden of work, and better cost-effectiveness.

Conclusion:

Occupational therapy, through environmental modification and educational actions, promotes improvement in the quality of life of the dyad.

Keywords:
Occupational Therapy; Alzheimer Disease; Aged; Environment; Systematic Review

Resumo

Introdução:

A Doença de Alzheimer (DA) tem um impacto significativo sobre o idoso e seus familiares. A restrição na participação só é compreendida, em sua totalidade, se forem considerados o contexto e o ambiente em que as atividades acontecem. Na intervenção terapêutica ocupacional, as ações direcionadas ao ambiente têm se mostrado eficazes no engajamento do idoso em ocupações significativas.

Objetivo:

Analisar o processo de intervenção direcionado ao ambiente físico e social dos idosos com DA. Método: Foi realizada revisão sistemática da literatura por um período de 10 anos (2006 a 2015), nos idiomas inglês, português e espanhol. Optou-se pela busca nas seguintes fontes de informação: Web of Science, MEDLINE/PubMed, CINAHL, PsycINFO®, LILACS, SciELO, OTseeker e PEDro. Os critérios de inclusão adotados foram: publicações científicas relacionadas a DA em idosos, que abordem as intervenções ambientais e que tenham participação de terapeuta ocupacional na autoria, sem se restringir à fase da doença.

Resultados:

Foi localizado um total de 141 artigos, sendo que apenas nove atenderam aos critérios de seleção. Os estudos apresentaram estreita associação dessas intervenções com a funcionalidade do paciente, o humor e a qualidade de vida da díade, melhor senso de competência entre os cuidadores, menor sobrecarga de trabalho, além de melhor custo-efetividade.

Conclusão:

A terapia ocupacional, por meio de modificação ambiental e ações educativas, promove melhoria na qualidade de vida da díade.

Palavras-chave:
Terapia Ocupacional; Doença de Alzheimer; Idoso; Meio Ambiente; Revisão Sistemática

1 Introduction

Alzheimer’s disease and other related dementias affect the elderly in general and are considered a priority for public health since 2012 (DUTHEY, 2013DUTHEY, B. Background Paper 6.11: Alzheimer Disease and other Dementias. OMS, 2013.; WORLD..., 2012WORLD HEALTH ORGANIZATION - WHO. Dementia: a public health priority. Geneva: WHO, 2012.). In 2015, the World Health Organization has declared an estimated 47 million people worldwide with dementia (WORLD..., 2015WORLD HEALTH ORGANIZATION - WHO. World report on ageing and health. Genebra: WHO, 2015.) and studies point to the scenario of a prospective increase (BURLÁ et al., 2013BURLÁ, C. et al. Panorama prospectivo da demência no Brasil: um enfoque demográfico. Ciências e Saúde Coletiva, Rio de Janeiro, v. 18, n. 10, p. 2949-2956, 2013.; ALZHEIMER’S..., 2014ALZHEIMER’S DISEASE INTERNATIONAL. World Alzheimer Report 2014: dementia and risk reduction - an analysis of protective and modificable factors. London: ADI, 2014.).

For a long time, these people are under dependency of the health system and under the care of formal family or caregivers, as they present impairment in cognitive functions and/or neuropsychiatric alterations as characteristics, with impairment of independence and autonomy to perform the activities of their daily life (GITLIN; CORCORAN, 2005GITLIN, L. N.; CORCORAN, M. A. Occupational Therapy and dementia care. Bethesda: AOTA Press, 2005.; PADILLA, 2011aPADILLA, R. Efectiveness of Occupational Therapy services for people with Alzhmeimer’s disease and related dementias. The American Journal of Occupational Therapy, Bethesda, v. 65, n. 5, p. 487-489, 2011a.; SCHABER; LIEBERMAN, 2010SCHABER, P.; LIEBERMAN, L. Occupational Therapy practice guideline for adults with alzheimer’s disease and related disorders. Bethesda: AOTA Press, 2010.).

The activities performed in their routines should be understood within a context and environment. In the gerontology area, the environment is one of the factors that facilitate or limit the functionality of the elderly and their participation in occupations that are significant to them (CASSIANO, 2008CASSIANO, J. G. A contribuição da Terapia Ocupacional para a manutenção da capacidade funcional do idoso. In: DRUMOND, A. F.; REZENDE, M. B. (Org.). Intervenções da Terapia Ocupacional. Belo Horizonte: Editora UFMG, 2008. p. 139-158.; MARTINEZ; EMMEL, 2013MARTINEZ, L. B. A.; EMMEL, M. L. G. Elaboração de um roteiro para avaliação do ambiente e do mobiliário no domicílio de idosos. Revista de Terapia Ocupacional da Universidade de São Paulo, São Paulo, v. 24, n. 1, p. 18-27, 2013.).

In the occupational therapist’s understanding, occupational performance occurs within a physical and social environment, situated in a context. The physical environment includes constructed and natural aspects, and the objects in it, such as buildings, furniture, terrains, tools, and plants (BROWN, 2011BROWN, C. E. Modelos ecológicos na Terapia Ocupacional. In: CREPEAU, E. B.; COHN, B. A.; BOYT, S. Willard & Spackaman Terapia Ocupacional. Rio de Janeiro: Guanabara Koogan, 2011. p. 441-451.). On the other hand, the social environment is composed of interpersonal relationships - people with whom the individual has the closest contact (in the case of the elderly with Alzheimer’s disease: the primary caregiver, family and friends) - and also system relationships (political, legal, economic) that influence daily life (AMERICAN..., 2014AMERICAN OCCUPATIONAL THERAPY ASSOCIATION - AOTA. Occupational Therapy practice framework: domain and process. The American Journal of Occupational Therapy, Bethesda, v. 68, p. s1-s48, 2014. Supply 1.). In the approach to this elderly, environmental interventions include changes in the environment, education or training programs for the caregiver, and access to community resources (SCHABER; LIEBERMAN, 2010SCHABER, P.; LIEBERMAN, L. Occupational Therapy practice guideline for adults with alzheimer’s disease and related disorders. Bethesda: AOTA Press, 2010.).

As far as foreign and national publications are concerned, most of the scientific production related to Alzheimer’s disease is focused on research on the clinical aspects of the disease and focuses on diagnoses (RODRIGUES; GONTIJO, 2009RODRIGUES, M. P. B.; GONTIJO, D. T. Doença de Alzheimer: uma análise da produção científica publicada nos periódicos brasileiros no período de 2002 a 2007. Estudos Interdisciplinares do Envelhecimento, Porto Alegre, v. 14, n. 1, p. 25-43, 2009.). Studies aimed at non-pharmacological interventions - including the occupational therapeutic process - are still incipient in Brazil and have a higher quantitative value in other countries. These facts justify the production of systematic reviews. In this context, through this methodology, this article aims to contribute to the understanding about the process of occupational therapeutic intervention directed to the physical and social environment of the elderly with Alzheimer’s Disease (AD). The guiding question for the search for productions was: How do the environmental interventions promoted by occupational therapists have repercussions on the daily life of the elderly with AD?

2 Methods

It is a systematic review of the literature of the integrative type, since it selects and critically analyzes the existing products on a certain question investigated, and leads to the construction of a theoretical platform on the subject (MARCONI; LAKATOS, 2009MARCONI, M. A.; LAKATOS, E. M. Fundamentos de metodologia científica. São Paulo: Editora Atlas, 2009.; SOARES et al., 2014SOARES, C. B. et al. Revisão integrativa: conceitos e métodos utilizados na enfermagem. Revista Escola de Enfermagem da USP, São Paulo, v. 48, n. 2, p. 335-45, 2014.).

In this investigation, the national and international scientific productions were considered, evidencing the actions developed by the occupational therapist directed to the physical and social environments of the elderly with Alzheimer’s Disease. The time cut was 10 years (January 2006 to December 2015). The selected sources of information were Scopus, Web of Science, MEDLINE/PubMed (via National Library of Medicine), Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO®, Latin American and Caribbean Literature in Health Sciences (LILACS), Scientific Electronic Library on Line (SciELO), Occupational Therapy Systematic Evaluation of Evidence (OTseeker) and Physiotherapy Evidence Database (PEDro).

Regardless of the free access to the publications as inclusion criteria, the following articles were considered: 1) to address Alzheimer’s disease in the elderly; 2) to have occupational therapist participation in the authorship or that deal with occupational therapy; 3) to focus on environmental interventions; 4) to not be restricted to the particular stage of the disease; 5) to refer to the elderly with Alzheimer’s Disease, regardless of the time in which they are undergoing occupational therapy, and 6) to be in Portuguese, English or Spanish. These terms “Alzheimer’s Disease”, “environment” and “Occupational Therapy” were located in the title, abstract and/or keywords of the records found. Productions were excluded when: 1) addressed other interventions not directed to environments; 2) used the literature review as study design; 3) referred to the elderly with other types of dementia or other pathologies; 4) approached AD in people younger than 60 years old. Also, the abstracts of congresses, annals, editorials and previous notes were not included because, often, these items did not contain the complete work.

The Health Sciences Descriptors (DeCS) were consulted to define the search terms. The following descriptors were stipulated: “behavior”, “environment”, “caregivers” and “cognition”, combined with “Alzheimer’s Disease” and “Occupational Therapy” using the Boolean operators AND and OR. Expressions were also used in English and Spanish. The terms “cognition” and “behavior” were selected to identify articles that were focused on reducing cognitive function and/or neuropsychiatric disorders, respectively, and which could be the subject of environmental interventions. The constructed strategies and search expressions with results are presented in Table 1.

Table 1
Sources of information, search expressions and results of identified documents.

The identified papers were exported to the online EndNote® Web software for storage and organization, initiating the process of selecting the search corpus, which is presented in Figure 1.

Figure 1
Flow of the selection process. Source: The authors, 2016.

The total number of documents identified was 141. After the selected articles were reading in full, nine articles were selected for the research. There were 28 of the 132 excluded articles eliminated by the methodology used; 65 were publications that did not involve intervention in the environment; 30 did not focus on the elderly with AD and/or on OT’s performance; five articles did not include the pre-selected languages ​​and four did not refer to the full article.

Subsequently, a form was created to organize the results. They were then subjected to a thematic categorization process. The articles were analyzed considering the authorship, the year of publication, the journals used, the objectives of the studies, the methodological designs, the occupational therapy actions, the outcomes, the recommendations or the conclusions of the studies.

3 Results and Discussion

The research consists of nine articles that are characterized in Table 2, according to title, authorship, year of publication, study site and journal in which it was published.

Table 2
Occupational Therapeutic Interventions Targeting Environments.

Regarding the corpus of the research, there is a balance in the published years, with five articles (55.6%) coming from the first five years of the temporal cut (2006 to 2010) and four articles (44.4%) of the last five years. All publications had the occupational therapist (OT) in the main authorship. Only two publications are national (22.2%) and the rest come from North America (USA and Canada) as well as from countries in Europe and one from the United Kingdom.

The methodology adopted in the national articles hinders to compare these studies with the interventions carried out abroad since they are case studies. According to evidence levels and degrees of recommendation of evidence-based medicine adopted by Medeiros and Stein (2002MEDEIROS, L. R.; STEIN, A. Níveis de evidência e graus de recomendação da medicina baseada em evidências. Revista AMRIGS, Porto Alegre, v. 46, n. 1, p. 43-46, 2002.), the case studies do not generate outcomes that could affirm that the intervention adopted in the research can be generalized to the general population with the same health condition, because they contain a small number of participants. Thus, the generalization of the data is not recommended (MEDEIROS; STEIN, 2002MEDEIROS, L. R.; STEIN, A. Níveis de evidência e graus de recomendação da medicina baseada em evidências. Revista AMRIGS, Porto Alegre, v. 46, n. 1, p. 43-46, 2002.). In contrast, the types of international studies found in this review were conducted to generate better scientific evidence.

In this integrative review, three articles (studies 01, 06, 07) referred to the use of both environmental modifications and guidance to caregivers as resources for intervention. The remaining articles focus exclusively on environmental modifications (studies 02, 05 and 08) or for education/training programs for the caregiver (studies 03, 04 and 09). No publication was identified focused on access to community resources.

With focus on studies aimed at environmental modifications, three articles were of randomized clinical trial type (01, 02 and 07). This type of study design has a level 1 scientific evidence, that is, the recommendations for its use in clinical practice are strong (MEDEIROS; STEIN, 2002MEDEIROS, L. R.; STEIN, A. Níveis de evidência e graus de recomendação da medicina baseada em evidências. Revista AMRIGS, Porto Alegre, v. 46, n. 1, p. 43-46, 2002.).

The study by Graff et al. (2007GRAFF, M. J. L. et al. Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: a randomized controlled trial. Gerontological Society of America, Washington, v. 62, n. 9, p. 1002-1009, 2007.) (nº 01) shows strong evidence for the implementation of environmental modifications and a caregiver orientation program, with close association of these interventions with the patient’s functionality, mood, and quality of life, as well as a better sense of competence among caregivers.

Reductions in caregiver overload were also observed. Increased engagement in the daily activities of the elderly and reduced caregiving are also presented in other studies of lower level of scientific evidence (level 4 of scientific evidence) (at 06 and 08).

The same team of researchers, conducted by Graff in 2008GRAFF, M. J. L. et al. Community occupational therapy for older patients with dementia and their caregivers: cost effectiveness study. BMJ, London, v. 336, n. 7636, p. 134-138, 2008. (nº 02), evaluated the cost-effectiveness of the intervention groups that received the occupational therapy service (environmental modifications and education to caregivers) and compared them to the group without therapeutic intervention occupational (control). Costs for visits to doctors and hospitals were equivalent between the two groups, but costs with other services, such as social work, physical therapy, daycare and hospital admission were lower in the intervention group. The economic evaluation showed that the approach adopted was more cost-effective during the three months of evaluation, reinforcing the benefits of these interventions aimed at environments.

The case study proposed by Oliveira-Assis et al. (2010) (nº 05) uses the identification of the rooms of the house and the calendar as an environmental modification, so the patient can be orientated in time and space. After the intervention, the caregiver reports better temporal and spatial orientation, as well as the control of the aggressive behavior of the demented elderly. These strategies also contributed to the reduction of the caregiver’s overload.

The literature shows that changes in the environment (physical or social) occur when there is a need to reduce the cognitive demands to optimize the success in performing activities. As an example, kitchen drawers can be labeled to assist in the location of utensils (physical environment) or family members can give insights to the elderly with dementia and optimize the location of objects (social environment) (RADOMSKI; DAVIS, 2013RADOMSKI, M. V.; DAVIS, E. S. Otimização das capacidades cognitivas. In: RADOMSKI, M. V.; LATHAM, C. A. T. Terapia Ocupacional para disfunções físicas. São Paulo: Santos, 2013. p. 749- 773.).

The simple modifications in the home environment can contribute to increase the abilities of the elderly patients and reduce the occurrence of inappropriate behaviors, as well as to reduce the care provided by the caregiver and, consequently, to minimize the wear and overload of the family members (THINNES; PADILLA, 2011THINNES, A.; PADILLA, R. Effect of educational and supportive strategies on the ability of caregivers of people with dementia to maintain participation in that role. The American Journal of Occupational Therapy, Bethesda, v. 65, n. 5, p. 541-549, 2011.).

Also, simplifications of action steps, routines structuring and habit sequences can be made for a greater participation of the elderly in the task and to promote a sense of competence. In addition, there is the withdrawal of distractors (connected television, noisy environment) and the organization of space as other forms of modification that contribute to engagement in occupations.

In the systematic review carried out by Padilla (2011bPADILLA, R. Effectiveness of interventions designed to modify the activity demands of the occupations of self-care and leisure for people with Alzheimer’s disease and related dementias. The American Journal of Occupational Therapy, Bethesda, v. 65, n. 5, p. 523-530, 2011b.), the most effective compensatory strategies were visual cues, direction signs, designs and labels in cabinets. Some assistive technology products are also used to support the task complementation, but care is taken not to drastically modify the environment, so as not to cause confusion or agitation in the patient (PADILLA, 2011bPADILLA, R. Effectiveness of interventions designed to modify the activity demands of the occupations of self-care and leisure for people with Alzheimer’s disease and related dementias. The American Journal of Occupational Therapy, Bethesda, v. 65, n. 5, p. 523-530, 2011b.). In patients residing in long-term care facilities for the elderly, placing photos on the doors of the rooms - as a strategy for the patient to orient himself in space - has produced a decrease in anxiety and agitation (PADILLA, 2011cPADILLA, R. Efectiveness of enviroment-based interventions for people with Alzheimer’s disease and related dementias. The American Journal of Occupational Therapy, Bethesda, v. 65, n. 5, p. 514-522, 2011c.).

To determine what modifications are necessary for the elderly with Alzheimer’s disease, it is necessary for the professional to analyze the physical and social environment to identify what already exists in these areas and that can be used, as well as what needs to be created, to structure the dementing routine. In this sense, the aim is to promote, for a long time, autonomy and independence during the activities that are significant (ASSIS; ASSIS; CARDOSO, 2013ASSIS, M. G.; ASSIS, L. O.; CARDOSO, A. P. Reabilitação das atividades diárias. In: MALLOY-DINIZ, L. F.; FUENTES, D.; COSENZA, R.M . (Org.). Neuropsicologia do envelhecimento: uma abordagem multidimensional. Porto Alegre: Artmed, 2013. p. 360-377.).

With the evolution of the disease, the structure of the routine should be adjusted in the activities as well as in the schedules and frequencies, besides needing more changes in the external environment (ASSIS; ASSIS; CARDOSO, 2013ASSIS, M. G.; ASSIS, L. O.; CARDOSO, A. P. Reabilitação das atividades diárias. In: MALLOY-DINIZ, L. F.; FUENTES, D.; COSENZA, R.M . (Org.). Neuropsicologia do envelhecimento: uma abordagem multidimensional. Porto Alegre: Artmed, 2013. p. 360-377.). According to Anjos and Regolin (2012ANJOS, S. M.; REGOLIN, K. Tecnologia assistiva para cognição. In: ABRISQUETA-GOMEZ, J. Reabilitação neuropsicológica: abordagem interdisciplinar e modelos conceituais na prática clínica. Porto Alegre: Artmed, 2012. p. 223-229.), external aids used with patients are schedules, using cell phones, speed dialing on phones, timers, digital clocks, sound alarms, alarm clocks, notebooks, lists, reminders, calendars, pictures, pill boxes, electronic organizers, electronic voice devices, and computers.

These products seek to compensate for deficiencies and to achieve satisfactory performance in activities, and they are considered resources that are part of the so-called Assistive Technology for Cognition (ANJOS; REGOLIN, 2012ANJOS, S. M.; REGOLIN, K. Tecnologia assistiva para cognição. In: ABRISQUETA-GOMEZ, J. Reabilitação neuropsicológica: abordagem interdisciplinar e modelos conceituais na prática clínica. Porto Alegre: Artmed, 2012. p. 223-229.). The choice of what assistive product will be used should consider the socioeconomic conditions of the elderly, educational level, habits, motivation and cognitive ability (ASSIS; ASSIS; CARDOSO, 2013ASSIS, M. G.; ASSIS, L. O.; CARDOSO, A. P. Reabilitação das atividades diárias. In: MALLOY-DINIZ, L. F.; FUENTES, D.; COSENZA, R.M . (Org.). Neuropsicologia do envelhecimento: uma abordagem multidimensional. Porto Alegre: Artmed, 2013. p. 360-377.).

Anjos and Regolin (2012ANJOS, S. M.; REGOLIN, K. Tecnologia assistiva para cognição. In: ABRISQUETA-GOMEZ, J. Reabilitação neuropsicológica: abordagem interdisciplinar e modelos conceituais na prática clínica. Porto Alegre: Artmed, 2012. p. 223-229.) report that low and medium-technology products - cell phones, stopwatches, electronic address books - are highly accepted as they are easy to acquire and use and can be programmed to operate at predetermined times. However, there are limitations on the amount of information that can be stored. Because patients with Alzheimer’s disease may have difficulty initiating activities, the resources that have alarms would be more efficient.

Radomski and Davis (2013RADOMSKI, M. V.; DAVIS, E. S. Otimização das capacidades cognitivas. In: RADOMSKI, M. V.; LATHAM, C. A. T. Terapia Ocupacional para disfunções físicas. São Paulo: Santos, 2013. p. 749- 773.) reinforce that pre-programmable memory aid devices are more efficient for the task to be performed at the specified time compared to written lists or reminders, which do not tell the exact time to perform the activity. It is important to highlight that these strategies benefit the elderly who are in the early stages of dementia since they still have a residual capacity for new learning. Thus, competencies are acquired to deal with these compensatory strategies, preserving their function for longer and reducing the impact of dementia in the daily routine (SOARES; SOARES; CAIXETA, 2012SOARES, V. L. D.; SOARES, C. D.; CAIXETA, L. Reabilitação neuropsicológica da memória. In: CAIXETA, L. et al. Doença e Alzheimer. Porto Alegre: Artmed, 2012. p. 453-465.).

Even with several notes on the benefits of modifications in the environment and context, the study by Voigt-Radloff et al. (2011) (nº 07), which compares 10 occupational therapy sessions (environmental modifications, simplification of activities and orientation to caregivers) in elderly with Dutch AD with a consultation session for German elderly people, points to different results. In the consultancies made in Germany, the orientation folders elaborated in the Netherlands were used. Surprisingly, the study claims that receiving occupational therapy sessions does not result in greater benefits in the functioning of the elderly compared to the benefits achieved with the consulting sessions.

Measurement of the effectiveness of interventions in this clinical trial may be compromised since comparisons are made in different countries (the Netherlands and Germany), and the cultural issue must be considered and analyzed in greater depth to define the real benefits of the sessions occupational therapy and consulting services in each population.

Another essentially important approach is done in partnership with the people who are the most knowledgeable of the patient’s life: the relatives and caregivers of the elderly with AD. These people are seen as the “hidden patients” affected by Alzheimer’s disease, as they need help to manage the day-to-day stress arising from the production of care and the many challenges that arise daily (GITLIN; CORCORAN, 2005GITLIN, L. N.; CORCORAN, M. A. Occupational Therapy and dementia care. Bethesda: AOTA Press, 2005.). For interventions directed to the social environment, the objective of occupational therapy is to carry out actions that have a direct or indirect impact on the social relationships that are established by the elderly.

Professionals use educational and support strategies to caregivers and family so they can keep the elderly person with dementia in a successful interaction with their activities and with others (KATZ; BAUM, 2012KATZ, N.; BAUM, C. M. A importância da terapia ocupacional na reabilitação neuropsicológica. In: ABRISQUETA-GOMEZ, J. Reabilitação neuropsicológica: abordagem interdisciplinar e modelos conceituais na prática clínica. Porto Alegre: Artmed, 2012. p. 207-222.). This approach is essential for the maintenance of quality of life, insofar as it allows the elderly to stay longer in their family environment, with autonomy (SOARES; SOARES; CAIXETA, 2012SOARES, V. L. D.; SOARES, C. D.; CAIXETA, L. Reabilitação neuropsicológica da memória. In: CAIXETA, L. et al. Doença e Alzheimer. Porto Alegre: Artmed, 2012. p. 453-465.).

In their work, the occupational therapist encourages caregivers to systematically observe the behavior of the elderly and what concerns them in the functional capacity and safety (SOHLBERG; MATEER, 2010SOHLBERG, M. M.; MATEER, C. A. Reabilitação cognitiva: uma abordagem neuropsicológica integrada. São Paulo: Santos, 2010.). The professional will assist in the development of an efficient and simplified care plan, considering the demands of the activity and the level of care that the elderly need (GITLIN et al., 2005GITLIN, L. N. et al. Maintenance of effects of the home environmental skill-building program for family caregivers and individuals with Alzheimer’s disease and related disorders. Journal of Gerontology, Oklahoma, v. 60, n. 3, p. 368-374, 2005.). The caregiver should always be aware of the habits, values, cultural issues and styles of the elderly to seek the maximum of activities with autonomy and ensure the preservation of the patient’s identity (ASSIS; ASSIS; CARDOSO, 2013ASSIS, M. G.; ASSIS, L. O.; CARDOSO, A. P. Reabilitação das atividades diárias. In: MALLOY-DINIZ, L. F.; FUENTES, D.; COSENZA, R.M . (Org.). Neuropsicologia do envelhecimento: uma abordagem multidimensional. Porto Alegre: Artmed, 2013. p. 360-377.).

In this research, there are six articles in which interventions are focused on education or training programs for caregivers (01, 03, 04, 06, 07 and 09). Three studies are randomized clinical trial type, that is, level 1 of scientific evidence (studies 01, 07 and 09); a qualitative research (04); a case study (06) and an article with two types of methodological design, descriptive and cross-sectional qualitative (03).

The studies of Graff et al. (2007GRAFF, M. J. L. et al. Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: a randomized controlled trial. Gerontological Society of America, Washington, v. 62, n. 9, p. 1002-1009, 2007.) and Wenborn et al. (2013WENBORN, J. et al. Providing activity for people with dementia in care homes: A cluster randomised controlled trial. International Journal of Geriatric Psychiatry, Londres, v. 28, n. 12, p. 1296-1304, 2013.) (01 and 09) were targeted by informal caregivers of Dutch elderly people living in their homes and formal caregivers of different British asylum institutions respectively. The approach taken by occupational therapy in both studies was the sharing of knowledge and information so caregivers could better understand the development of the disease, learn about coping strategies in the face of behavioral problems of people with dementia and receive guidance on caring. The second study also added the individual sessions with the caregivers for practical classes, as well as an exercise book manual.

In the study by Wenborn et al. (2013WENBORN, J. et al. Providing activity for people with dementia in care homes: A cluster randomised controlled trial. International Journal of Geriatric Psychiatry, Londres, v. 28, n. 12, p. 1296-1304, 2013.), the orientation and training program, even with positive feedback from the participants, did not present evidence that the intervention had an effect on the increase of functionality for the elderly when compared to the control group. This may have been attributed to poor adherence of caregivers to the training program.

For those who performed the training, the reports of worsening of the quality of life of the elderly stand out. This perception seems to be linked to the greater awareness of caregivers about the disease and its impacts on the daily life of the elderly people. It is presumed that they become able to identify the evolution of the disease and the inadequacies in the institutions that can contribute to the worsening of the quality of life of the elderly with AD (WENBORN et al., 2013WENBORN, J. et al. Providing activity for people with dementia in care homes: A cluster randomised controlled trial. International Journal of Geriatric Psychiatry, Londres, v. 28, n. 12, p. 1296-1304, 2013.).

In the study 01, as previously reported, the intervention to the caregiver is associated with lower work overload, increased sense of competence to care, improvement of the quality of life of the dyad, besides the increase of the functionality of the elderly (GRAFF et al., 2007GRAFF, M. J. L. et al. Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: a randomized controlled trial. Gerontological Society of America, Washington, v. 62, n. 9, p. 1002-1009, 2007.).

These results diverge from the study by Cooke et al. (2001COOKE, D. D. et al. Psychossocial intervention for caregivers of people with dementia: a systematic review. Aging and Mental Health, Nottingham, v. 5, n. 2, p. 120-135, 2001.), who argue that there is little evidence that education and caregiver counseling can improve the well-being and quality of life of the dyad. However, in a current systematic review with meta-analysis performed by Marim et al. (2013MARIM, C. M. et al. Efetividade de programas de educação e suporte na redução da sobrecarga de cuidadores de idosos com demência: revisão sistemática. Revista Latino-Americana de Enfermagem, Ribeirão Preto, v. 21, p. 1-9, 2013. Número Especial.), the actions of education and support to the caregivers were shown to be effective in reducing overload compared with usual care.

Similar to the studies by Graff et al. (2007GRAFF, M. J. L. et al. Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: a randomized controlled trial. Gerontological Society of America, Washington, v. 62, n. 9, p. 1002-1009, 2007.), Wenborn et al. (2013WENBORN, J. et al. Providing activity for people with dementia in care homes: A cluster randomised controlled trial. International Journal of Geriatric Psychiatry, Londres, v. 28, n. 12, p. 1296-1304, 2013.) and Marim et al. (2013MARIM, C. M. et al. Efetividade de programas de educação e suporte na redução da sobrecarga de cuidadores de idosos com demência: revisão sistemática. Revista Latino-Americana de Enfermagem, Ribeirão Preto, v. 21, p. 1-9, 2013. Número Especial.), the systematic review by Thinnes and Padilla (2011THINNES, A.; PADILLA, R. Effect of educational and supportive strategies on the ability of caregivers of people with dementia to maintain participation in that role. The American Journal of Occupational Therapy, Bethesda, v. 65, n. 5, p. 541-549, 2011.) shows positive effects of the empowerment of caregivers on personal well-being, as well as on the lives of the elderly. In the study, supportive and educational strategies are related to protection against the onset of depression in caregivers. In this type of intervention, skills and competencies are also developed to prepare caregivers for coping with situations in which the elderly present behavioral changes. Caregivers are seen as the people who allow the elderly with AD to stay longer in their homes and community.

In the analysis of the productions of this systematic review, the scarcity of discussions about the influence of the qualification of caregivers to prolong the coexistence of the elderly in the family environment and delay institutionalization is highlighted. In the review study by Camacho et al. (2013CAMACHO, A. C. L. F. et al. Revisão integrativa sobre cuidados de enfermagem à pessoa com doença de Alzheimer e seus cuidadores. Journal of Research Fundamental Care on Line, Rio de Janeiro, v. 5, n. 3, p. 186-193, 2013.), institutionalization is considered as the last option taken by caregivers, when no alternative is presented and there is an intense overload of the caregiver or even the presence of depressive symptoms involved in this decision making.

Even if the inherent losses in the development of the disease change the patient’s perception of who he is, as well as the perception of the patient about the patient, being in the family environment contributes to the maintenance of the identity of the elderly and to the sense of belonging (DUARTE, 2004DUARTE, M. J. R. S. Cuidando e educando o cliente idoso na perspectiva da cidadania. In: SALDANHA, A. L.; CALDAS, C. P. (Org.). Saúde do idoso: a arte de cuidar. Rio de Janeiro: Interciência, 2004. p. 59-73.). However, long-term care institutions can provide an alternative support network for the care of elderly people with dementia, which leads us to deconstruct the idea that these places are forms of abandonment to the patient.

In this research, it was also possible to observe that the national and international literature, in general, is more directed to the perception of care from the negative point of view, since it is a continuous, arduous and often painful activity. In a different perspective, the qualitative research of Donovan and Corcoran (2010DONOVAN, M. L.; CORCORAN, M. A. Description of dementia caregivers uplifts and implications for Occupational Therapy. The American Journal of Occupational Therapy, Bethesda, v. 64, n. 4, p. 590-595, 2010.) (04) sought to capture positive attitudes of care adopted after the training program for caregivers of elderly people with AD, in moderate to severe stages.

It is known that, at this stage of the disease, care must be offered most of the time, since the elderly are dependent in almost all daily activities. Even so, strategies, such as organization of the home environment, structuring routines, continuous communication with the family and use of humor, appeared as adopted attitudes and that support a positive relationship between caregiver and elderly with AD (DONOVAN; CORCORAN, 2010DONOVAN, M. L.; CORCORAN, M. A. Description of dementia caregivers uplifts and implications for Occupational Therapy. The American Journal of Occupational Therapy, Bethesda, v. 64, n. 4, p. 590-595, 2010.).

Other behaviors aimed at self-care (healthy eating, physical activities or religious activities) appear as motivators to continue to perform the activity of caring, as well as contribute to the better perception of their well-being.

Finally, the research of Chiu et al. (2009CHIU, T. et al. Internet-based caregiver support for chinese canadians taking care of family member with Alzheimer Disease and related dementia. Canadian Journal on Aging, Ontario, v. 28, n. 4, p. 323-336, 2009.) (03), carried out with Chinese caregivers living in Canada, used an internet-based support program to guide and empower elderly people with AD. All interfaces were arranged in English and Mandarin to ensure the training of study participants.

In the evaluation of overload before the intervention, the caregivers presented moderate to high-stress levels and others were clinically depressive. In the intervention, younger caregivers joined the online program more than their older counterparts. On the other hand, the older ones had a better sense of competence to take care, compared to the younger ones. Caregiver overload decreased after the intervention (CHIU et al., 2009CHIU, T. et al. Internet-based caregiver support for chinese canadians taking care of family member with Alzheimer Disease and related dementia. Canadian Journal on Aging, Ontario, v. 28, n. 4, p. 323-336, 2009.).

In addition to the discussion about the use of technologies as a therapeutic resource, the notes that are presented on the cultural context of care are also relevant. As an example, it is the tradition of Chinese families to take care of their relatives. Thus, at some stage of life, relatives are expected to provide care to the elderly (CHIU et al., 2009CHIU, T. et al. Internet-based caregiver support for chinese canadians taking care of family member with Alzheimer Disease and related dementia. Canadian Journal on Aging, Ontario, v. 28, n. 4, p. 323-336, 2009.). Research participants realize that the view of caring for them is different from the Western view. Thus, even though the signs of overload are evident in this ongoing task, there is a positive perception of Chinese caregivers about the role they play.

The low adherence to the use of technology by an audience of older caregivers, evidenced in the study by Chiu and collaborators (2009CHIU, T. et al. Internet-based caregiver support for chinese canadians taking care of family member with Alzheimer Disease and related dementia. Canadian Journal on Aging, Ontario, v. 28, n. 4, p. 323-336, 2009.) (nº 03) is a subject that has recently been discussed in gerontechnology. In the study identified, the failure to remember how to use the technology or to believe that there is no need for this device to provide care were the reasons stated by caregivers for not incorporating the technology into their routines.

It is known that caregivers (composed mostly of female relatives) are also already in middle age or even in old age. Thus, it should be understood that these caregivers - born before the accentuated technological development of the 1990s - did not have, as children and young adults, access to the technologies available today. Their lifelong experiences have been shaped in technological environments that differ - and much - from today’s environments (TAVARES, 2015TAVARES, M. F. Trabalho e longevidade: como o novo regime demográfico vai mudar a gestão de pessoas e a organização do trabalho. Rio de Janeiro: Qualitymark, 2015.).

In this current scenario, learning to use the wide range of digital devices competently is a significant problem for older individuals trying to adapt to the new technological society (BIANCHETTI, 2008BIANCHETTI, L. Da chave de fenda ao laptop - tecnologia digital e as novas qualificações: desafios à educação. Florianópolis: Editora UFSC, 2008.). Thus, opting for the use of computers for the intervention, according to study nº 03 may have been a barrier to the effective training of caregivers.

Given the complexity of using technology, older people need access to technology training programs that consider the limitations of learning, respect for differences and age-related difficulties, so that there is “learning success” (LEE; CZAJA; SHARIT, 2006LEE, C. C.; CZAJA, S. J.; SHARIT, J. Training older workers for technology-based employment. Educational Gerontology, Connecticut, v. 35, n. 1, p. 15-31, 2006.).

In general, the analysis of publications that use environmental interventions highlights the absence of approach to the elderly in the advanced stage of the disease. This reality is also pointed out in the study of scoping review by Struckmeyer and Pickens (2016STRUCKMEYER, L. R.; PICKENS, N. D. Home modifications for people with Alzheimer’s disease: a scoping review. The American Journal of Occupational Therapy, Bethesda, v. 70, n. 1, p. 1-9, 2016.). The authors report that, at this stage, the cost of adapting and modifying the physical environment may not be appropriate to the family’s financial patterns.

Also, the fact that, at this stage, it is imperative to provide full-time care to this elderly person, due to the functional impairment already expected by the evolution of the disease. This creates a greater burden on caregivers. Thus, by the aforementioned factors, decisions for the institutionalization of the elderly begin to be discussed among family members.

4 Limitations of the Study and Recommendations

The limitations of this study occurred due to the methodological approach adopted. There is a restriction of the analysis for environmental interventions. Thus, comparisons of the effects of environmental interventions to other types of interventions, in the field of occupational therapy, could contribute to a better understanding of the different actions and their impact on the daily life of elderly people with Alzheimer’s Disease. There is also a need to expand knowledge about possible occupational therapeutic interventions, considering their effects for mechanisms of pharmacological action.

Regarding to the Brazilian scientific production of occupational therapy, studies of a higher level of scientific evidence are recommended to allow comparisons between the actions of the different countries, as well as favoring the consolidation of the field of production of national knowledge.

5 Conclusion

In the occupational therapeutic interventions directed to the physical environment, the current published experiences, in the researched databases, recommend the organization of the domestic spaces with visual cues and signs to reduce the cognitive demand and to structure the routine of the elderly with dementia. These resources promote, for a prolonged time, greater engagement of the elderly in activities that were routine.

In the interventions directed to the social environment, the educational and training programs of the caregivers of elderly people with Alzheimer’s disease stand out. The training facilitates a better understanding of the evolution of the disease, helping coping strategies to deal with the cognitive and behavioral changes of the sick person, and addressing guidelines to strengthen the affective bond of the dyad. Also, these interventions are associated with a lower workload of the caregiver, a better sense of competence among caregivers and a better perception about the quality of life.

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  • Funding Source

    No funding used.

Publication Dates

  • Publication in this collection
    Apr 2018

History

  • Received
    24 Dec 2016
  • Reviewed
    10 Oct 2017
  • Accepted
    08 Dec 2017
Universidade Federal de São Carlos, Departamento de Terapia Ocupacional Rodovia Washington Luis, Km 235, Caixa Postal 676, CEP: , 13565-905, São Carlos, SP - Brasil, Tel.: 55-16-3361-8749 - São Carlos - SP - Brazil
E-mail: cadto@ufscar.br