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1.
Front Public Health ; 11: 1227748, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37808976

RESUMO

Objectives: The motor disability due to stroke compromises the autonomy of patients and caregivers. To support autonomy and other personal and social needs, trustworthy, multifunctional, adaptive, and interactive assistive devices represent optimal solutions. To fulfill this aim, an artificial intelligence system named MAIA would aim to interpret users' intentions and translate them into actions performed by assistive devices. Analyzing their perspectives is essential to develop the MAIA system operating in harmony with patients' and caregivers' needs as much as possible. Methods: Post-stroke patients and caregivers were interviewed to explore the impact of motor disability on their lives, previous experiences with assistive technologies, opinions, and attitudes about MAIA and their needs. Interview transcripts were analyzed using inductive thematic analysis. Results: Sixteen interviews were conducted with 12 post-stroke patients and four caregivers. Three themes emerged: (1) Needs to be satisfied, (2) MAIA technology acceptance, and (3) Perceived trustfulness. Overall, patients are seeking rehabilitative technology, contrary to caregivers needing assistive technology to help them daily. An easy-to-use and ergonomic technology is preferable. However, a few participants trust a system based on artificial intelligence. Conclusion: An interactive artificial intelligence technology could help post-stroke patients and their caregivers to restore motor autonomy. The insights from participants to develop the system depends on their motor ability and the role of patients or caregiver. Although technology grows exponentially, more efforts are needed to strengthen people's trust in advanced technology.


Assuntos
Pessoas com Deficiência , Transtornos Motores , Acidente Vascular Cerebral , Humanos , Cuidadores , Inteligência Artificial , Qualidade de Vida
2.
J Clin Med ; 12(8)2023 Apr 19.
Artigo em Inglês | MEDLINE | ID: mdl-37109297

RESUMO

Acquired motor limits can be provoked by neurological lesions. Independently of the aetiologies, the lesions require patients to develop new coping strategies and adapt to the changed motor functionalities. In all of these occasions, what is defined as an assistive technology (AT) may represent a promising solution. The present work is a systematic review of the scientific AT-related literature published in the PubMed, Cinahl, and Psychinfo databases up to September 2022. This review was undertaken to summarise how the acceptance of AT is assessed in people with motor deficits due to neurological lesions. We review papers that (1) dealt with adults (≥18 years old) with motor deficits due to spinal cord or acquired brain injuries and (2) concerned user acceptance of hard AT. A total of 615 studies emerged, and 18 articles were reviewed according to the criteria. The constructs used to assess users' acceptance mainly entail people's satisfaction, ease of use, safety and comfort. Moreover, the acceptance constructs varied as a function of participants' injury severity. Despite the heterogeneity, acceptability was mainly ascertained through pilot and usability studies in laboratory settings. Furthermore, ad-hoc questionnaires and qualitative methods were preferred to unstandardized protocols of measurement. This review highlights the way in which people living with acquired motor limits greatly appreciate ATs. On the other hand, methodological heterogeneity indicates that evaluation protocols should be systematized and finely tuned.

3.
Br J Psychol ; 114(3): 678-709, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36942850

RESUMO

Imitation development was studied in a cross-sectional design involving 174 primary-school children (aged 6-10), focusing on the effect of actions' complexity and error analysis to infer the underlying cognitive processes. Participants had to imitate the model's actions as if they were in front of a mirror ('specularly'). Complexity varied across three levels: movements of a single limb; arm and leg of the same body side; or arm and leg of opposite body sides. While the overall error rate decreased with age, this was not true of all error categories. The rate of 'side' errors (using a limb of the wrong body side) paradoxically increased with age (from 9 years). However, with increasing age, the error rate also became less sensitive to the complexity of the action. This pattern is consistent with the hypothesis that older children have the working memory (WM) resources and the body knowledge necessary to imitate 'anatomically', which leads to additional side errors. Younger children might be paradoxically free from such interference because their WM and/or body knowledge are insufficient for anatomical imitation. Yet, their limited WM resources would prevent them from successfully managing the conflict between spatial codes involved in complex actions (e.g. moving the left arm and the right leg). We also found evidence that action side and content might be stored in separate short-term memory (STM) systems: increasing the number of sides to be encoded only affected side retrieval, but not content retrieval; symmetrically, increasing the content (number of movements) of the action only affected content retrieval, but not side retrieval. In conclusion, results suggest that anatomical imitation might interfere with specular imitation at age 9 and that STM storages for side and content of actions are separate.


Assuntos
Comportamento Imitativo , Movimento , Humanos , Criança , Adolescente , Estudos Transversais , Memória de Curto Prazo
4.
Am J Clin Oncol ; 46(1): 36-42, 2023 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-36562693

RESUMO

INTRODUCTION: Breast cancer is the leading cause of cancer death in women worldwide. Recently, the focus of research has shifted from psychiatric, psychological, and social consequences on the woman who gets sick from breast cancer to the impact on the couple. Indeed, the psychosocial perspective has developed the construct of the Quality of Relationship (QoR) that affects the quality of life of both members of the dyad. OBJECTIVE: The aim of this study was to extend knowledge in this field by identifying and analyzing what dimensions of QoR may impact couples' psychosocial adjustment to breast cancer and related treatments. PATIENTS AND METHODS: Semistructured interviews explored couples' experiences of breast cancer diagnosis and treatment. Transcripts were analyzed using inductive thematic analysis. RESULTS: Twelve couples were interviewed. Results showed how the dimensions of psychosocial support, dyadic coping, communication, and intimacy are associated and define the construct of QoR, thus affecting the couples' adjustment to breast cancer diagnosis and to the disease pathway. CONCLUSION: Assessment procedures of couple functioning since and after diagnosis could increase the appropriateness and benefits of integrating existing clinical practice in oncological settings.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/terapia , Neoplasias da Mama/psicologia , Qualidade de Vida , Adaptação Psicológica , Comunicação , Relações Interpessoais , Cônjuges/psicologia
5.
Aging Ment Health ; 27(3): 512-520, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-35333142

RESUMO

OBJECTIVES: The COVID-19 pandemic and public health measures caused serious consequences for several population cohorts, including people with dementia in care homes and their families. The aim of this study was to explore the impact of COVID-19 on care home residents with dementia as experienced by family carers in Italy. Specifically, strategies implemented to overcome the pandemic's constraints, their influence upon care, and consequences for everyday life of residents with dementia and carers were investigated. METHODS: Semi-structured interviews explored participants' experiences of the pandemic, its restrictions and the services' status during lockdown. Transcripts were analysed via thematic analysis. RESULTS: 26 family carers were interviewed. Three themes emerged: (1) COVID-19 restrictions negatively affected both residents with dementia and family carers, (2) Changing policies in care homes during COVID-19, and (3) Technology use in care homes during COVID-19. COVID-19 restrictions severely affected care home residents with dementia, disrupted their daily living, and accelerated their cognitive decline. Consequently carers' emotional burdens increased. Care home response strategies (safe visiting and digital solutions) were critical, though they were not enough to compensate for the lack of close in-person contacts. CONCLUSIONS: Mixed evidence emerged about the feasibility of care home strategies and their associated benefits. To meet arising needs and possible future pandemic waves, there is a need for updated health strategies. These should prioritise a continuity of therapeutic activities and minimize negative effects on residents' quality of life, whilst incorporating feasible and accessible digital solutions to provide remote communication and psychological support for family carers.


Assuntos
COVID-19 , Demência , Humanos , Cuidadores/psicologia , Qualidade de Vida , Pandemias , Demência/terapia , Demência/psicologia , Controle de Doenças Transmissíveis
6.
Artigo em Inglês | MEDLINE | ID: mdl-36005276

RESUMO

OBJECTIVES: Considering the adverse outcomes of COVID-19, it is essential to provide adequate support and care for people with dementia and informal carers. Technology can reduce the distress associated with social distancing rules and the decreased access to in-person services. This study aimed to explore the use of technology and its perceived effects across different settings and countries. METHODS: The sample was composed of 127 informal carers and 15 people with dementia from the UK, Italy, Australia and Poland. Semi-structured interviews explored participants' experiences of using technology and their perceived effects. Transcripts were analysed by researchers in each country using an inductive approach. RESULTS: Three overarching themes were developed: (1) Technology kept us alive during COVID-19; (2) Remote care was anything but easy; (3) Perceived technology limitations. Many similarities emerged between countries supporting the role of technology for being socially engaged, having a routine, and staying active. However, the benefits of technology for health and psychosocial care were more limited. Across countries, barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments. Help and supervision from carers were also necessary and sometimes perceived as an additional burden. CONCLUSIONS: Technology can effectively reduce the shrinking world that may be amplified by the pandemic, thus preserving people with dementia's social skills and maintaining family connections. However, for more extensive and well-adapted use of technology in dementia care, actions should be taken to overcome the barriers to the access and use of technology by older and vulnerable people globally.


Assuntos
COVID-19 , Demência , Cuidadores/psicologia , Demência/psicologia , Humanos , Itália , Tecnologia
8.
PLoS One ; 17(4): e0266702, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35404951

RESUMO

BACKGROUND: Acquired brain injury and spinal cord injury are leading causes of severe motor disabilities impacting a person's autonomy and social life. Enhancing neurological recovery driven by neurogenesis and neuronal plasticity could represent future solutions; however, at present, recovery of activities employing assistive technologies integrating artificial intelligence is worthy of examining. MAIA (Multifunctional, adaptive, and interactive AI system for Acting in multiple contexts) is a human-centered AI aiming to allow end-users to control assistive devices naturally and efficiently by using continuous bidirectional exchanges among multiple sensorimotor information. METHODS: Aimed at exploring the acceptability of MAIA, semi-structured interviews (both individual interviews and focus groups) are used to prompt possible end-users (both patients and caregivers) to express their opinions about expected functionalities, outfits, and the services that MAIA should embed, once developed, to fit end-users needs. DISCUSSION: End-user indications are expected to interest MAIA technical, health-related, and setting components. Moreover, psycho-social issues are expected to align with the technology acceptance model. In particular, they are likely to involve intrinsic motivational and extrinsic social aspects, aspects concerning the usefulness of the MAIA system, and the related ease to use. At last, we expect individual factors to impact MAIA: gender, fragility levels, psychological aspects involved in the mental representation of body image, personal endurance, and tolerance toward AT-related burden might be the aspects end-users rise in evaluating the MAIA project.


Assuntos
Tecnologia Assistiva , Traumatismos da Medula Espinal , Acidente Vascular Cerebral , Inteligência Artificial , Encéfalo , Humanos
9.
Health Soc Care Community ; 30(5): e3128-e3137, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35188317

RESUMO

The COVID-19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social restrictions. The aim of this study was to investigate the experiences of COVID-19 among community-dwelling people with dementia and their informal carers in Italy. Specifically, we focused on access to community-based services and adopted solutions to provide support and care during exceptional times. Informal carers, caring for someone with dementia and attending community-based services in Italy, participated in remote semi-structured interviews between October and November 2020. Participants were asked about the effects of social isolation and closure of in-person services on their daily lives as well as the challenges of dementia care. Transcripts were analysed using inductive thematic analysis. 22 informal carers were interviewed. Three themes emerged: (1) Disruptions to people with dementia's lives and health; (2) COVID-19 as an additional stressor for carers; and (3) New ways of caring for people with dementia during COVID-19. Face-to-face social care and social support services were suddenly interrupted and restrictions on social distancing were introduced, thus leading to people with dementia's impaired health and increased behavioural and psychological symptoms. Not only the amount but also the intensity of care increased, with no chance of respite for informal carers. Overall remote activities provided participants with emotional and social benefits, while allowing the continuity of relationships with services staff and users and of care. However, according to carers, a combination of virtual and face-to-face activities could better counterbalance the multiple adverse outcomes of COVID-19. Public health measures should be designed carefully to consider the safety needs and the physical, psychological and social needs of people with dementia. Within a holistic care approach, social care services need to be enabled better to guarantee high-quality care even during pandemic times.


Assuntos
COVID-19 , Demência , COVID-19/epidemiologia , Cuidadores/psicologia , Serviços de Saúde Comunitária , Demência/epidemiologia , Demência/psicologia , Demência/terapia , Humanos , Pandemias
10.
Br J Psychol ; 113(3): 758-776, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35181883

RESUMO

The way human bodies are represented is central in everyday activities. The cognitive system must combine internal, visceral, and somatosensory, signals to external, visually driven information generated from the spatial placement of others' bodies and the own body in the space. However, how different body representations covertly interact among them when observing human body parts is still unclear. Therefore, we investigated the implicit processing of body parts by manipulating either the body part stimuli' posture (conditions a and b) or the participants' response body posture (conditions c, d, and e) in healthy participants (N = 70) using a spatial compatibility task called Sidedness task. The task requires participants to judge the colour of a circle superimposed on a task-irrelevant body part picture. Responses are facilitated when the spatial side of the responding hand corresponds to the spatial code generated by the hand stimulus's position with respect to a body of reference. Results showed that the observation of the task-irrelevant body parts oriented participants' attention and facilitated responses that were spatial compatible with the spatial position such body parts have within a configural representation of the body structure (i.e., Body Structural Representation) in all the five experimental conditions. Notably, the body part stimuli were mentally attached to the body according to the most comfortable and less awkward postures, following the anatomo-physiological constraints. Moreover, the pattern of the results was not influenced by manipulating the participants' response postures, suggesting that the automatic and implicit coding of the body part stimuli does not rely on proprioceptive information about one's body (i.e., Body Schema). We propose that the human body's morphometry knowledge is enriched by biomechanical and anatomo-physiological information about the real body movement possibilities. Moreover, we discuss the importance of the automatic orienting of attention based on the sidedness within the context of imitational learning.


Assuntos
Imagem Corporal , Corpo Humano , Humanos , Movimento/fisiologia , Postura , Propriocepção/fisiologia
11.
BMC Geriatr ; 22(1): 116, 2022 02 11.
Artigo em Inglês | MEDLINE | ID: mdl-35148712

RESUMO

BACKGROUND: Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. METHODS: Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. RESULTS: Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. CONCLUSIONS: The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.


Assuntos
COVID-19 , Demência , Cuidadores , Demência/diagnóstico , Demência/epidemiologia , Demência/terapia , Humanos , Pandemias , SARS-CoV-2
12.
Palliat Med ; 36(1): 142-151, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34596445

RESUMO

BACKGROUND: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. AIM: To determine the consistency with which the Surprise Question is used. DESIGN: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]-100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. SETTING/PARTICIPANTS: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. RESULTS: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). CONCLUSIONS: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Estudos Transversais , Humanos , Atenção Primária à Saúde , Prognóstico
13.
Aging Ment Health ; 26(11): 2243-2251, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-34842004

RESUMO

OBJECTIVES: Although young-onset dementia (YOD) affects the whole family system, this population is still under-represented in literature, and no progress in care provision has been made. Hence, additional evidence is necessary to understand how family and social relationships are affected by YOD and care challenges, as to provide recommendations for clinical practice and service improvement from a family perspective. METHOD: Family carers were recruited via one memory clinic and the local Alzheimer's Associations in Italy. Semi-structured interviews explored their experiences with YOD, the impact of the condition on their lives, family and social relationships, and the support and care they received. Transcripts were coded by three researchers and analysed using inductive thematic analysis. RESULTS: Thirty-eight interviews were conducted with 26 spouses and 12 adult children. Three themes emerged: 1) Problems around diagnosis, 2) Lack of post-diagnostic support, and 3) Living with YOD as a family. Overall, problems occurred across the dementia pathway. Without appropriate support, it was difficult for families to adjust to living with YOD and to the associated changes in family roles and relationships. CONCLUSIONS: Since optimal care depends on good family relationships, better support for families in the adaptation to condition would likely benefit patient care while ensuring social inclusion and health equity for vulnerable groups.


Assuntos
Demência , Humanos , Demência/terapia , Demência/diagnóstico , Cônjuges , Cuidadores , Filhos Adultos , Itália
14.
Artigo em Inglês | MEDLINE | ID: mdl-34299738

RESUMO

Most studies have been concerned with the experiences and needs of women with breast cancer and spouses/partners separately. In this review, the relationship dynamics that characterize the couple's experience of breast cancer treatment were investigated. Findings will inform both researchers and professionals in the area of oncology. A systematic literature search was performed in CINAHL, PsychINFO, MEDLINE, Scopus and Web of Science. A checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Seventeen studies were included, and the synthesis of the literature revealed five domains that characterized the dyadic process: dyadic coping strategies, psychosocial support, communication, the couple's sexual life and spirituality. The included studies provide the basis for knowledge and awareness about the experience of couples with cancer, the specific dimensions enacted during the breast cancer treatment path and the type of responses that are associated with a positive couple's adjustment to the disease.


Assuntos
Neoplasias da Mama , Adaptação Psicológica , Comunicação , Feminino , Humanos , Comportamento Sexual , Cônjuges
15.
Artigo em Inglês | MEDLINE | ID: mdl-34299994

RESUMO

It has been shown that exercise positively affects cognitive abilities, such as frontal functions and long-term memory processes. We tried to understand whether different exercises (i.e., an open-skill activity, a team game, vs. a closed-skill activity, a circuit) might specifically influence different short-term-memory (STM) subsystems of working memory. We examined the effect of a single bout of open- and closed-skill exercises on three STM tasks (i.e., verbal, visuo-spatial, and motor) in children attending the 3rd and 4th classes at primary school. One group was tested before and after (T0 and T1) an Italian class (control group), one group before and after 30-min exercise on a circuit, and one group before and after 30-min of a team game. The control group presented no improvement. The open-skill activity improved short-term memory performance in all the participants at T1 (p < 0.001 for children attending the 3rd class, and p = 0.007 for children attending the 4th class). In contrast, closed-skill activity improved short-term memory performance in older children (those attending the 4th class; p = 0.046) at T1. Importantly, this finding was found in a school setting and might have ecological validity. Therefore, the exercise protocol here used might help to structure specific training activities for both normal children and those with learning deficits to positively improve short-term memory abilities.


Assuntos
Exercício Físico , Memória de Curto Prazo , Criança , Cognição , Terapia por Exercício , Humanos , Aprendizagem
16.
Artigo em Inglês | MEDLINE | ID: mdl-34070091

RESUMO

To program proper reactions, athletes must anticipate opponents' actions on the basis of previous visuomotor experience. In particular, such abilities seem to rely on processing others' intentions to act. We adopted a new approach based on an attentional spatial compatibility paradigm to investigate how elite volleyball players elaborate both spatial and motor information at upper-limb posture presentation. Forty-two participants (18 volleyball players and 17 nonathlete controls assigned to Experiments 1 a and b, and eight basketball players assigned to Experiment 2) were tested to study their ability to process the intentions to act conveyed by hands and extract motor primitives (i.e., significant components of body movements). Analysis looked for a spatial compatibility effect between direction of the spike action (correspondence factor) and response side for both palm and back of the hand (view factor). We demonstrated that volleyball players encoded spatial sport-related indices from bodily information and showed preparatory motor activation according to the direction of the implied spike actions for the palm view (Experiment 1; hand simulating a cross-court spike, p = 0.013, and a down-the-line spike, p = 0.026) but both nonathlete controls (Experiment 1; both p < 0.05) and other sports athletes (basketball players, Experiment 2; p = 0.34, only cross-court spike) did not. Results confirm that elite players' supremacy lies in the predictive abilities of coding elementary motor primitives for their sport discipline.


Assuntos
Basquetebol , Voleibol , Atletas , Cognição , Gestos , Humanos
17.
Front Psychol ; 12: 644587, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33841281

RESUMO

Objectives: Technology can assist and support both people with dementia (PWD) and caregivers. Recently, technology has begun to embed remote components. Timely with respect to the pandemic, the present work reviews the most recent literature on technology in dementia contexts together with the newest studies about technological support published until October 2020. The final aim is to provide a synthesis of the timeliest evidence upon which clinical and non-clinical decision-makers can rely to make choices about technology in the case of further pandemic waves. Methods: A review of reviews was performed alongside a review of the studies run during the first pandemic wave. PsycInfo, CINAHL, and PubMed-online were the databases inspected for relevant papers published from January 2010. Results: The search identified 420 articles, 30 of which were reviews and nine of which were new studies meeting the inclusion criteria. Studies were first sorted according to the target population, then summarized thematically in a narrative synthesis. The studies targeting technologies for PWD were categorized as follows: monitoring and security purposes, sustaining daily life, and therapeutic interventions. Each category showed potential benefits. Differently, the interventions for caregivers were classified as informative, psycho-education programs, psychosocial-supportive, therapeutic, and cognitive/physical training. Benefits to mental health, skills learning, and social aspects emerged. Conclusions: The evidence shows that technology is well-accepted and can support PWD and caregivers to bypass physical and environmental problems both during regular times and during future pandemic waves. Nevertheless, the lack of a common methodological background is revealed by this analysis. Further and more standardized research is necessary to improve the implementation of technologies in everyday life while respecting the necessary personalization.

18.
Dementia (London) ; 20(8): 2725-2745, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33896232

RESUMO

Young onset dementia has become a growing challenge in national healthcare systems. Concerns about the situation have already been expressed; however, they mostly report the views of services end-users. Aimed at finding out useful further improvement, interviews documenting the working experiences of professionals addressing healthcare services to people with young onset dementia (YOD) were analysed qualitatively. The interviews resulted in four themes and twelve categories. The themes regarded services' complexity and responsiveness, the levels of education and knowledge on YOD, the impact that serving people with YOD reflects on staff working experience and quality of life, and a series of proposals aimed at improving services by giving people with YOD and families the provision of care they deserve. Although some of the themes recapped the ones reported in the previous literature, the mixture of internally and externally driven instances represented in the themes depict the complexity of care delivery in the services. Findings are discussed in the light of a pragmatical framework capable of suggesting what changes services should implement to be timely responsive.


Assuntos
Demência , Qualidade de Vida , Idade de Início , Atenção à Saúde , Demência/terapia , Pessoal de Saúde , Humanos
19.
Artigo em Inglês | MEDLINE | ID: mdl-33806158

RESUMO

There is evidence supporting the use of psychosocial interventions in dementia care. Due to the role of policy in clinical practice, the present study investigates whether and how the issue of psychosocial care and interventions has been addressed in the national dementia plans and strategies across Europe. A total of 26 national documents were found. They were analyzed by content analysis to identify the main pillars associated with the topic of psychosocial care and interventions. Specifically, three categories emerged: (1) Treatment, (2) Education, and (3) Research. The first one was further divided into three subcategories: (1) Person-centred conceptual framework, (2) Psychosocial interventions, and (3) Health and social services networks. Overall, the topic of psychosocial care and interventions has been addressed in all the country policies. However, the amount of information provided differs across the documents, with only the category of 'Treatment' covering all of them. Furthermore, on the basis of the existing policies, how the provision of psychosocial care and interventions would be enabled, and how it would be assessed are not fully apparent yet. Findings highlight the importance of policies based on a comprehensive and well-integrated system of care, where the issue of psychosocial care and interventions is fully embedded.


Assuntos
Demência , Reabilitação Psiquiátrica , Cuidadores , Demência/terapia , Europa (Continente) , Humanos , Serviço Social
20.
Int J Geriatr Psychiatry ; 36(7): 975-992, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33826166

RESUMO

OBJECTIVES: Most studies have been concerned with the experiences and needs of spouses/partners and adult children of people with dementia. In this review, children and young people's lived experience of parental dementia was investigated. Findings will inform both researchers and professionals in the area of dementia care. DESIGN: A systematic literature search was performed in CINAHL, PsychINFO, PubMed, Scopus, and Web of Science. A rigorous screening process was followed, and a checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Narrative synthesis of the selected articles was carried out. RESULTS: Twenty-one studies were included and a synthesis of the literature revealed six themes. The first theme concerned the difficulties in dealing with the diagnosis which was often preceded by a long period characterized by uncertainty, confusion, family distress, and conflicts. The second theme discussed changes in family relationships in terms of the role of children and young people in supporting both parents and keeping family together. The third theme described the impact of caring on children and young people who struggled to balance caring tasks and developmental needs. The fourth theme showed consequences on children and young people's personal lives in terms of education/career and life planning. The fifth theme illustrated main adaptation models and coping strategies. The last theme discussed the need for appropriate support and services based on a "whole family" approach. CONCLUSIONS: The included studies provide the basis for knowledge and awareness about the experience of children and young people with a parent with dementia and the specific needs of support for this population.


Assuntos
Demência , Pais , Adaptação Psicológica , Adolescente , Humanos , Pesquisa Qualitativa
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