Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 16 de 16
Filter
1.
BMC Geriatr ; 23(1): 515, 2023 08 24.
Article in English | MEDLINE | ID: mdl-37620780

ABSTRACT

BACKGROUND AND OBJECTIVES: The University of California, San Francisco Memory and Aging Center (UCSF-MAC) led the development and tested a collaborative care model delivered by lay care team navigators (CTNs) with support from a multidisciplinary team known as the Care Ecosystem (CE). We evaluated outcomes related to the feasibility of the CE in a non-academic healthcare system, including acceptability, adoption, and fidelity to the original UCSF model. RESEARCH DESIGN AND METHODS: The CE team at HealthPartners consisted of two CTNs, a social worker, an RN, a program coordinator, and a behavioral neurologist. Intake forms were developed to collect demographic, baseline, and annual data at one year related to dementia severity and caregiver status. Experience surveys were completed at 6 and 12 months by participating caregivers. All data was entered into REDCap. RESULTS: A total of 570 PWD-caregiver dyads were recruited into the CE: 53% PWDs female, average age 75.2 ± 9.43, 19% living within rural communities. Of the 173 dyads assessed at one year, 30% responded to the annual intake forms and 58% of responded to experience surveys. At one year, PWDs progressed in disease severity and functional impairment, although caregiver burden and mood remained unchanged. We observed a significant reduction in caregiver reported emotional challenges associated with caregiving, sleep problems, and obtaining caregiver help at one year. 86% of caregivers reported feeling supported by their CTN nearly always or quite frequently, and 88% rated the CTN as highly responsive to what was important to them. DISCUSSION AND IMPLICATIONS: The CE was feasible and well-received within a non-academic healthcare system.


Subject(s)
Delivery of Health Care, Integrated , Ecosystem , Aged , Aged, 80 and over , Female , Humans , Affect , Aging , Emotions , Male
2.
Pflege ; 36(3): 129-138, 2023 Jun.
Article in German | MEDLINE | ID: mdl-36269006

ABSTRACT

Care for family carers of people with dementia in municipal communities during the pandemic: A Qualitative Study Abstract: Background: The availability of support services for family carers of persons with dementia in the municipal community shows deficits due to the Corona pandemic and thus entails a change in the support of carers. Research question: The questions arise, what changes in the care of family carers of people with dementia do those affected perceive, how do actors from the municipal community experience the care situation during the pandemic and to what extent do the perceptions of the groups coincide or differ. Method: The database consists of town hall talks and focus groups from 13 municipal communities in Germany. Participants were family carers and actors from the municipal community. For data analysis, a qualitative content analysis was carried out. Result: Negative changes in the care of caregivers can be seen, for example, in the omission of care services or groups of relatives. Above all, actors perceived positive changes, such as advancing digitalization or increased neighborly help. The perception of changes in the care situation differs in several subcategories between carers and actors. Conclusion: Although large gaps in care have been created by the pandemic, emerging challenges also create new ways for support such as digital groups for family carers. In the future, opportunities need to be created to implement already developed interventions in such a way that the target group can make use of them.


Subject(s)
Caregivers , Dementia , Humans , Pandemics , Qualitative Research , Focus Groups
3.
J Med Internet Res ; 23(6): e25968, 2021 06 08.
Article in English | MEDLINE | ID: mdl-34100762

ABSTRACT

BACKGROUND: Caregivers of people with dementia find it extremely difficult to choose the best care method because of complex environments and the variable symptoms of dementia. To alleviate this care burden, interventions have been proposed that use computer- or web-based applications. For example, an automatic diagnosis of the condition can improve the well-being of both the person with dementia and the caregiver. Other interventions support the individual with dementia in living independently. OBJECTIVE: The aim of this study was to develop an ontology-based care knowledge management system for people with dementia that will provide caregivers with a care guide suited to the environment and to the individual patient's symptoms. This should also enable knowledge sharing among caregivers. METHODS: To build the care knowledge model, we reviewed existing ontologies that contain concepts and knowledge descriptions relating to the care of those with dementia, and we considered dementia care manuals. The basic concepts of the care ontology were confirmed by experts in Korea. To infer the different care methods required for the individual dementia patient, the reasoning rules as defined in Semantic Web Rule Languages and Prolog were utilized. The accuracy of the care knowledge in the ontological model and the usability of the proposed system were evaluated by using the Pellet reasoner and OntOlogy Pitfall Scanner!, and a survey and interviews were conducted with caregivers working in care centers in Korea. RESULTS: The care knowledge model contains six top-level concepts: care knowledge, task, assessment, person, environment, and medical knowledge. Based on this ontological model of dementia care, caregivers at a dementia care facility in Korea were able to access the care knowledge easily through a graphical user interface. The evaluation by the care experts showed that the system contained accurate care knowledge and a level of assessment comparable to normal assessment tools. CONCLUSIONS: In this study, we developed a care knowledge system that can provide caregivers with care guides suited to individuals with dementia. We anticipate that the system could reduce the workload of caregivers.


Subject(s)
Dementia , Knowledge Management , Caregivers , Dementia/therapy , Humans , Republic of Korea , Surveys and Questionnaires
4.
BMC Geriatr ; 20(1): 305, 2020 08 26.
Article in English | MEDLINE | ID: mdl-32847495

ABSTRACT

BACKGROUND: Globally, family members account for the main source of caregiving of persons with dementia living at home. Providing care to family members with dementia often has negative health consequences for caregivers such as stress, depression and low quality of life. Yet, formal support for family caregivers (FCs) is limited. Telehealth technology has the potential to provide health care and social support to FCs. This study aims to assess the effectiveness of providing support by healthcare professionals (HPs) through a mobile app in reducing stress, depressive symptoms and loneliness, and improving mental health and quality of life of FCs of persons with dementia. METHODS: Using a pragmatic intervention design, this study will use pre- and post-intervention assessment to evaluate the effectiveness of the proposed intervention in a sample of 78 FCs of persons with dementia (PWD). The intervention will be implemented by approximately 5 HPs specialized in dementia care based in the municipalities in Sweden. The main thrust of the intervention is to provide professional support, with help of an interactive mobile app, to family members in their caregiving role for PWDs. Qualitative interviews with HPs and FCs form the groundwork of the development of the mobile app. By using the app on smart phone or tablet, the FC, in groups of 8-10, will communicate with peers and a HP exchanging ideas on how to deal with PWD's behavioral and cognitive changes and get support. They will also be able to discuss stressful events and access mindfulness exercises focused on themselves. Quantitative data will be collected before and at three time points after the 8-week intervention to assess changes in the health outcomes of the FCs. In-depth interviews will be conducted after the intervention to capture the experiences of FCs and HPs regarding the ease of use and acceptability of the app. DISCUSSION: This tailor-made mobile app has the high potential to be a practical platform for supporting FCs to alleviate stress and improve mental health irrespective of distance to the nearest health care or social service center. TRIAL REGISTRATION: ISRCTN, ISRCTN46137262 . Registered 10 October 2019.


Subject(s)
Dementia , Mobile Applications , Caregivers , Dementia/therapy , Humans , Quality of Life , Sweden
5.
BMC Geriatr ; 19(1): 247, 2019 09 06.
Article in English | MEDLINE | ID: mdl-31492113

ABSTRACT

BACKGROUND: Mild cognitive impairment and mild dementia progressively compromise the ability of people to live independently and can have a negative impact on their quality of life. Within the current European Active and Assisted Living programme (AAL), project TV-AssistDem has been developed to deliver a TV-based platform service to support patients with mild cognitive impairment or mild dementia and provide relief to their caregivers. The application is intended to be used daily at home, mainly by the participants themselves, with the help of their informal caregivers. The aim of this study is to evaluate the effectiveness of TV-AssistDem to improve quality of life in people with mild cognitive impairment or mild dementia. METHODS: This is a 12-month European multicentre randomized controlled trial which will be performed in two countries: Spain and Romania. Two hundred and forty older adults will be recruited using identical inclusion/exclusion criteria. The primary outcome will be the change from baseline of TV-AssistDem on patient quality of life at 12 months. The secondary outcomes will be the changes from baseline of: 1) informal caregiver quality of life, 2) informal caregiver burden, 3) patient treatment adherence, 4) patient treatment compliance, 5) patient functional status, and 6) healthcare cost-effectiveness at 12 months. Patients in the intervention group will have access to an interactive platform which offers remote assistive services through a device connected to the television. The core services of the platform are: 1) Calendar and reminders, 2) Health monitoring and data transmission to a health server and 3) Videoconference; service-oriented applications are: 4) Cognitive stimulation; 5) Reminiscences; and 6) Patient and caregiver healthcare education. The analysis will be made following an intention-to-treat procedure. Linear and Generalized Mixed Model analysis will be performed. DISCUSSION: We hypothesize that the regular use of TV-AssistDem will result in an improvement in patient quality of life. The uniqueness of this home TV-based intervention lies on its widespread accessibility and its integrative approach to quality of life in people with mild cognitive impairment or mild dementia and their informal caregivers. However, several anticipated challenges will need to be faced: poor engagement and connectivity problems. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03653234 , Date of registration: 31 August 2018.


Subject(s)
Caregivers , Cognitive Dysfunction/therapy , Delivery of Health Care, Integrated/methods , Dementia/therapy , Telemedicine/methods , Television , Aged , Aged, 80 and over , Caregivers/psychology , Cognitive Behavioral Therapy/methods , Cognitive Dysfunction/epidemiology , Cognitive Dysfunction/psychology , Dementia/epidemiology , Dementia/psychology , Europe/epidemiology , Female , Follow-Up Studies , Humans , Male , Middle Aged , Quality of Life/psychology , Romania/epidemiology , Spain/epidemiology
6.
BMC Geriatr ; 18(1): 131, 2018 06 04.
Article in English | MEDLINE | ID: mdl-29866102

ABSTRACT

BACKGROUND: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. METHOD: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. RESULTS: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. CONCLUSION: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.


Subject(s)
Caregivers/psychology , Dementia/psychology , Focus Groups , Health Personnel/psychology , Health Services Accessibility , Social Workers/psychology , Aged , Aged, 80 and over , Dementia/epidemiology , Dementia/therapy , Europe/epidemiology , Female , Focus Groups/methods , Health Services Accessibility/trends , Humans , Male , Middle Aged
7.
Dementia (London) ; 22(7): 1392-1419, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37294955

ABSTRACT

BACKGROUND AND OBJECTIVES: Resilience - the ability to bounce back after a stressor - is a core component of successful family caregiving for people living with dementia. In this manuscript, we describe the preliminary empirical validation of a new behavioral framework developed from existing literature for assessing care partner resilience, CP-R, and propose its potential value for future research and clinical care. METHODS: We selected 27 dementia care partners who reported significant challenges prompted by a recent health crisis of their care recipient from three local university-affiliated hospitals in the United States. We conducted semi-structured interviews to elicit care partners' accounts of what they did to address those challenges that helped them recover during and after the crisis. Interviews were transcribed verbatim and analyzed using abductive thematic analysis. FINDINGS: When persons with dementia experienced health crises, care partners described various challenges in managing new and often complex health and care needs, navigating informal and formal care systems, balancing care responsibilities with other needs, and managing difficult emotions. We identified five resilience-related behavioral domains, including problem-response (problem-solving, -distancing, -accepting, and -observing), help-related (help-seeking, -receiving, and -disengaging), self-growth (self-care activities, spiritual-related activities, and developing and maintaining meaningful relationships), compassion-related (self-sacrifice and relational compassion behaviors), and learning-related (learning from others and reflecting). DISCUSSIONS AND IMPLICATIONS: Findings support and expand the multidimensional CP-R behavior framework for understanding dementia care partner resilience. CP-R could guide the systematic measurement of dementia care partners' resilience-related behaviors, support individual tailoring of behavioral care plans, and inform the development of resilience-enhancing interventions.


Subject(s)
Caregivers , Dementia , Humans , Caregivers/psychology , Dementia/therapy , Dementia/psychology , Empathy , Emotions
8.
Front Genet ; 14: 1039839, 2023.
Article in English | MEDLINE | ID: mdl-37434952

ABSTRACT

Current ethical debates on the use of artificial intelligence (AI) in healthcare treat AI as a product of technology in three ways. First, by assessing risks and potential benefits of currently developed AI-enabled products with ethical checklists; second, by proposing ex ante lists of ethical values seen as relevant for the design and development of assistive technology, and third, by promoting AI technology to use moral reasoning as part of the automation process. The dominance of these three perspectives in the discourse is demonstrated by a brief summary of the literature. Subsequently, we propose a fourth approach to AI, namely, as a methodological tool to assist ethical reflection. We provide a concept of an AI-simulation informed by three separate elements: 1) stochastic human behavior models based on behavioral data for simulating realistic settings, 2) qualitative empirical data on value statements regarding internal policy, and 3) visualization components that aid in understanding the impact of changes in these variables. The potential of this approach is to inform an interdisciplinary field about anticipated ethical challenges or ethical trade-offs in concrete settings and, hence, to spark a re-evaluation of design and implementation plans. This may be particularly useful for applications that deal with extremely complex values and behavior or with limitations on the communication resources of affected persons (e.g., persons with dementia care or for care of persons with cognitive impairment). Simulation does not replace ethical reflection but does allow for detailed, context-sensitive analysis during the design process and prior to implementation. Finally, we discuss the inherently quantitative methods of analysis afforded by stochastic simulations as well as the potential for ethical discussions and how simulations with AI can improve traditional forms of thought experiments and future-oriented technology assessment.

9.
Gerontologist ; 62(4): e265-e281, 2022 04 20.
Article in English | MEDLINE | ID: mdl-33367603

ABSTRACT

BACKGROUND AND OBJECTIVES: Caring for a person living with dementia requires resilience, the capacity to recover and grow from challenging situations. Despite the increasing interest in assessing and promoting resilience for dementia care partners, behaviors that indicate this attribute are not well known. The aim of this study was to synthesize the literature to identify resilience-related behaviors and develop a new framework for future validation and intervention research. RESEARCH DESIGN AND METHODS: We searched English-language peer-reviewed articles (January 1991-June 2019) reporting qualitative or quantitative descriptions of resilience-related behaviors among dementia care partners. Thematic analysis was used to categorize behaviors into domains, identify the relationships among them, and generate a thematic map. RESULTS: Sixteen articles were identified according to predefined inclusion criteria. Four domains emerged: (a) problem-response behaviors (problem-solving, problem-distancing); (b) self-growth behaviors (self-care activities, spiritual-related activities, and developing and maintaining meaningful social relationships); (c) help-related behaviors (help-seeking and help-receiving); and (d) learning-related behaviors (learning from others and reflection). Definitions of each domain, identification of corresponding behaviors, and formulation of Care Partner Resilience (CP-R) behavioral framework were informed by mixed research synthesis results and other relevant literature. DISCUSSION AND IMPLICATIONS: The CP-R framework emerged as a result of a new focus on identifying and cultivating strengths instead of evaluating strain and burden. It serves as a useful foundation for understanding the impact of specific behaviors on dementia care partner resilience. Once validated, this framework will inform the development of future measures, research, interventions, and policies for dementia care partners.


Subject(s)
Caregivers , Dementia , Dementia/therapy , Humans , Self Care
10.
Dementia (London) ; 21(4): 1120-1134, 2022 May.
Article in English | MEDLINE | ID: mdl-35300535

ABSTRACT

BACKGROUND: A majority of persons with dementia in Sweden live in their own homes and are often cared for by family members. Caring for a family member may be a positive experience. It may, however, also be a negative experience as symptoms like disturbing behavior and delusions may be difficult to encounter. The burden of being a family caregiver has been shown to affect the caregivers' quality of life. OBJECTIVE: To explore stakeholders' perspectives on a potential mobile application through which family caregivers could be supported by healthcare professionals in caring for a person with dementia living at home. METHOD: Eight individual interviews with family caregivers and a focus group with eight healthcare professionals specialized in dementia care were analyzed using content analysis method. RESULTS: The findings suggest that a mobile application can support family caregivers to meet their own needs in terms of finding structure in everyday life, how to get information and support in their own pace, and how to care for themselves. The findings also suggest the necessity of accessing relevant contact networks to be supported in the ability to care for a family member with dementia. CONCLUSION: Healthcare and social services mediated support provided through user-friendly mobile application has the potential to support family caregivers both in taking care of a person with dementia and caring for themselves. Moreover, it is important that the information provided to family caregivers is personalized according to the needs of the family caregivers as the family member's dementia advances.


Subject(s)
Dementia , Mobile Applications , Caregivers , Dementia/therapy , Health Personnel , Humans , Quality of Life
11.
Dementia (London) ; 21(8): 2601-2618, 2022 Nov.
Article in English | MEDLINE | ID: mdl-36151606

ABSTRACT

This mixed method sequential study reports focus group and pilot intervention findings that (1) explore the views of persons with dementia and their caregivers on using a self-directed advance care planning engagement workbook (Your Conversation Starter Kit) and (2) uncover the conditions that encouraged and hindered workbook use. In Phase 1, we conducted five focus groups consisting of 10 persons with dementia and eight family members/caregivers from two urban Canadian cities to explore overall impressions of the workbook and factors that might affect its use. In Phase 2, we empirically explored the factors identified in Phase 1 by distributing the workbook to 24 persons with dementia. The combined findings suggest that the workbook offers promise in supporting advance care planning engagement for persons with dementia in the early stages of their condition. Involving family/caregivers and clarifying some of the ranked questions might improve the workbook's use. Persons with dementia without familial support or those who have never contemplated advance care planning may require additional guidance prior to workbook distribution.


Subject(s)
Advance Care Planning , Dementia , Humans , Canada , Caregivers , Focus Groups
12.
Prim Health Care Res Dev ; 23: e10, 2022 02 18.
Article in English | MEDLINE | ID: mdl-35177149

ABSTRACT

BACKGROUND: Portugal has a Dementia Strategy that endorses care coordination in the community, but the strategy is not implemented despite there being a network of multidisciplinary primary care clinics that could support it. Recent research into barriers to dementia management in primary care has focused essentially on general practitioners' (GPs) factors and perspectives. A comprehensive triangulated view on the barriers to dementia management emphasising teamwork is missing. AIM: To explore the barriers to the implementation of the Portuguese Dementia Strategy by primary care teams, from the perspectives of service users and professionals. METHODS: Purposive sampling was used to recruit 10 GPs, 8 practice nurses, 4 social workers, 8 people with dementia and 10 family carers from 6 practices in different social contexts within the Lisbon metropolitan area. The analytical framework combined codes derived from the transcripts with codes from the available literature. Themes focused on the access to professionals/community services, care coordination within healthcare teams, and between health and community services. FINDINGS: Several system barriers were identified (undefined roles/coordination within teams, time constraints, insufficient signposting to community services) along with individual barriers (limited competence in dementia, unrecognised autonomy, limited views on social health and quality of life (QoL)), hindering users access to dementia services. CONCLUSION: Enhanced competence in dementia, and nurse-led systematic care of people with dementia and their carers, are necessary. They can be effective in improving the QoL in dementia, but only if associated with better community support.


Subject(s)
Dementia , Quality of Life , Caregivers , Dementia/therapy , Humans , Portugal , Primary Health Care
13.
Dementia (London) ; 20(6): 2057-2076, 2021 Aug.
Article in English | MEDLINE | ID: mdl-33371738

ABSTRACT

AIM: Community Occupational Therapy in Dementia (COTiD-UK) is a manualised intervention delivered to the person with dementia and their identified family carer primarily in their own home. The focus is on enabling both the person with dementia and their family carer to engage in personally meaningful activities. This qualitative study examines the experiences of people with mild to moderate dementia, their family carers and occupational therapists, of taking part in the COTiD-UK intervention. METHOD: A purposive sample of 22 pairs of people with dementia and a family carer and seven occupational therapists took part in semi-structured interviews that were audio recorded, transcribed and inductively analysed using thematic analysis. FINDINGS: Themes from the occupational therapist interviews relate to the COTiD-UK intervention philosophy and content, aspects of delivering it in practice and thinking ahead to it becoming usual practice. Themes from the pair interviews relate to the focus of COTiD-UK sessions on meaningful occupation and working together and a sense of being able to plan to live well with dementia in the short- and longer-term as a result of the intervention. CONCLUSION: This person-centred occupation-focussed intervention was highly valued by people with dementia and their family carers and the occupational therapists delivering it.


Subject(s)
Dementia , Occupational Therapy , Caregivers , Dementia/therapy , Humans , Occupational Therapists , Qualitative Research , United Kingdom
14.
J Multidiscip Healthc ; 13: 1947-1955, 2020.
Article in English | MEDLINE | ID: mdl-33364776

ABSTRACT

BACKGROUND: Dementia care is one of the most rapidly growing areas in health care. Despite this, relatively little is known about the experiences of persons with dementia in relation to quality of care. OBJECTIVE: The aim of this study was to describe how persons with dementia in nursing homes experience the quality of care. DESIGN: A cross-sectional design was used. SETTING AND PARTICIPANTS: The study was conducted in a nursing home in Norway. A total of 33 persons with dementia participated. RESULTS: Respondents' mean age was 86.7 years. More than 80% reported their health as bad/neither good nor bad. Concerning their satisfaction with staying in the nursing home, two in ten were satisfied. Nearly half answered that they received or sometimes received good help and support when anxious. More than 50% reported that they only sometimes received or never received good help and support when they felt lonely. The majority perceived that the nurses came/or sometimes came when needed (79%) and that the nurses had time/sometimes had time to talk with them (73%). CONCLUSION: This study reveals that the voice of persons with dementia must be listened to, in order to increase the quality of care in nursing homes. The challenge concerning how living in nursing homes can be more satisfying must be addressed by leaders and nurses in nursing homes, as well as researchers. Special attention must be paid to anxiety, loneliness, and going outdoors.

15.
Dementia (London) ; 12(6): 734-50, 2013 Nov.
Article in English | MEDLINE | ID: mdl-24337637

ABSTRACT

The safe self management of medicines will be affected by the presence of dementia. A qualitative study using grounded theory was undertaken by a community nursing organisation in Melbourne, Australia, in order to develop a strength-based and person-centred approach to the assessment of medication ability. The perspectives of the person with dementia and their carers were explored to see if there were any significant differences in their medication management experiences when compared to those of older adults without dementia and their carers. People with dementia are able to sustain self management of their medicines using established routines and strategies. As cognitive changes affect short-term memory, external strategies and task allocation to family members are introduced by the individual to support their continuing independence. The family member assumed the carer role as their concern for medication safety increased, but this role engendered stress and a burden that was unacknowledged by the health professional.


Subject(s)
Adaptation, Psychological , Attitude of Health Personnel , Caregivers/psychology , Dementia/psychology , Family/psychology , Dementia/drug therapy , Humans , Qualitative Research , Self Administration , Self Care , Victoria
16.
Belo Horizonte; s.n; 2023. 103 p. ilus, tab.
Thesis in Portuguese | LILACS | ID: biblio-1438120

ABSTRACT

Introdução: Estima-se que a prevalência de sintomas ansiosos em cuidadores familiares de pessoas com demência é igual ou maior do que a prevalência de sintomas depressivos, embora a ansiedade tenha sido pouco explorada na literatura voltada para este público. Estudos têm demonstrado que a Terapia de Aceitação e Compromisso (ACT) pode ser utilizada com cuidadores familiares, com efeitos positivos sobre sintomas ansiosos. Entretanto, a ACT ainda não foi avaliada no formato em grupo e tampouco em países em desenvolvimento para este público. Objetivos: O trabalho foi subdividido em dois estudos. O objetivo do Estudo 1 foi revisar a literatura através de uma meta-análise e avaliar quantitativamente a eficácia da ACT em grupo, presencialmente, nos sintomas de ansiedade e depressão de adultos com 18 anos ou mais. O objetivo do Estudo 2 foi adaptar e avaliar os efeitos da ACT, em grupo, nos sintomas de ansiedade de cuidadores familiares de pessoas com demência. Método: No Estudo 1, quatro bases de dados foram pesquisadas em agosto/2018 e uma busca atualizada foi realizada em novembro/2021. Foram incluídos 48 estudos clínicos randomizados (3292 participantes: ansiedade = 34 ECRs; depressão = 40 ECRs). O Estudo 2, é um estudo exploratório randomizado, realizado em um único centro, não-cego. Cinquenta e sete cuidadores familiares de pessoas com demência foram randomizados para o grupo intervenção (n = 29) ou lista de espera (n = 28). O grupo intervenção participou de oito sessões de ACT em grupo, realizadas por vídeo conferência, semanalmente. Os participantes responderam aos questionários de avaliação de ansiedade, depressão, flexibilidade psicológica, qualidade de vida e sobrecarga, em três momentos diferentes: semanas 0, 9 e 20. Análises de regressão múltipla foram realizadas para comparar os escores dos participantes do grupo intervenção e controle, na semana 9 e 20. Os escores da linha de base foram usados como controle nas análises de intenção de tratamento (ITT) e dos participantes que participaram em pelo menos seis sessões de intervenção. Resultados: No Estudo 1 o tamanho de efeito para sintomas ansiosos foi de médio a grande (g=0,52, p < 0,001; 95% IC=0,30 ­ 0,73), já o tamanho de efeito para sintomas depressivos foi de pequeno a médio (g=0,47, p < 0,001; 95% IC=0,31 ­ 0,64). A amostra do Estudo 2 foi composta em sua maioria mulheres, de baixo a médio nível socioeconômico, com uma idade média de 52 anos e mediana de escolaridade de 15 anos. Participantes do grupo intervenção apresentaram pontuações mais baixas para sintomas de ansiedade e depressão, comparados com participantes do grupo controle. Este resultado foi encontrado nas semanas 9 e 20, tanto na análise de ITT, quanto na análise daqueles que completaram seis sessões ou mais. Apenas os participantes que participaram de pelo menos seis sessões, apresentaram redução da sobrecarga nas semanas 9 e 20, além de apresentarem melhora na qualidade de vida na semana 9. Os resultados não indicaram efeitos da intervenção na flexibilidade psicológica. Conclusão: Este estudo oferece evidências a favor da utilização da ACT em grupo, com familiares de pessoas com demência, auxiliando na redução dos sintomas ansiosos e depressivos.


Background: The prevalence of anxiety symptoms is estimated to be equal to or higher than the prevalence of depressive symptoms in family carers of people with dementia. However, anxiety is currently somehow neglected in the carer literature. Previous studies demonstrated that Acceptance and Commitment Therapy (ACT) is effective for treating anxiety symptoms in family carers of people with dementia, but the vast majority of these studies were conducted in developed countries. Objectives: The thesis was divided into two studies. Study 1 was a meta-analysis which aimed to quantitatively examine the efficacy of group-based ACT, delivered face-to-face, on anxiety and depressive symptoms in adults aged 18 or older. The Study 2 adapted and investigated the effectiveness of an ACT group intervention on the anxiety symptoms in Brazilian family carers of people with dementia. Method: In Study 1, four electronic databases were searched in August, 2018 and an update search was conducted in November, 2021. Forty-eight randomised controlled trials (RCTs) were included in this review (3292 participants: anxiety = 34 RCTs, depression = 40 RCTs). Study 2 was a single-centre, unblinded, double-arm exploratory randomised trial. Fifty-seven family carers of people with dementia presenting with mild to severe anxiety symptoms were randomised to the intervention group (n = 29) or waiting list group (n = 28). The intervention group received eight weekly sessions of group ACT, delivered through videoconference. Participants completed the measure of anxiety and depressive symptoms, caregiver burden, psychological flexibility and quality of life at Weeks 0, 9 and 20. Multiple linear regression analyses were performed to evaluate whether there was a significant difference in scores between the intervention and control groups, at weeks 9 and 20, while controlling for the baseline scores using both intention-to-treat (ITT) and completers data analyses. Results: In Study 1 the overall effect size for anxiety symptoms was medium-to-large (g = 0.52, p < 0.001; 95% CI =0.30­0.73), while the overall effect size was small-to-medium for depressive symptoms (g = 0.47, p < 0.001; 95% CI = 0.31­0.64). In Study 2 Participants were mostly women, from low- to middle-income socioeconomic levels, with a mean age of 52 years and median education of 15 years. Participants in the intervention group had lower scores of anxiety and depression symptoms compared to participants in the control condition at weeks 9 and 20 in both the ITT and completer analyses. Only participants who attended six or more sessions (i.e., completer sample) demonstrated reduced caregiver burden at both follow-up points. The completer sample also showed improvement in quality of life at week 9. The results did not show any effect of the intervention on psychological flexibility. Conclusion: This study provides evidence supporting the use of group ACT, delivered through videoconference, with family carers of people with dementia to help them cope better with anxiety and depressive symptoms.


Subject(s)
Psychotherapy, Group , Caregivers/psychology , Acceptance and Commitment Therapy , Anxiety , Quality of Life , Academic Dissertation , Depression , Teletherapy
SELECTION OF CITATIONS
SEARCH DETAIL