RESUMO
PURPOSE: The Carer Assessment of medicaTion management guidanCe for people with dementia at Hospital discharge (CATCH) tool was developed to examine the carer's experiences of medication management guidance delivery at discharge. This study explored its factor structure, characterized carers' experiences at discharge, and identified predictors of carer preparedness to manage medications at discharge. METHODS: A cross-sectional survey of carers across Australia was distributed. Survey responses were analyzed descriptively, and exploratory factor and regression analyses were performed. RESULTS: A total of 185 survey responses were completed. Exploratory factor analysis revealed 2 factors in the CATCH tool: (1) shared and supported decision-making in medication management (16 items loading 0.47 to 0.93); 2) provision of medication management guidance that is easy to understand (4 items loading (0.48 to 0.82). Internal consistency was acceptable (Cronbach alpha >0.8). Almost 18% of participants stated that they were not included in decisions about medications for people with dementia. The carer reported that the measure of how guidance is provided was positively related to their confidence in the management of medications postdischarge and satisfaction ( P < 0.05 for both). CONCLUSIONS: The CATCH tool can give the patient and carer an opportunity to provide feedback on key elements of medication management guidance delivered at discharge.
Assuntos
Demência , Alta do Paciente , Humanos , Cuidadores , Conduta do Tratamento Medicamentoso , Assistência ao Convalescente , Estudos Transversais , Demência/tratamento farmacológico , HospitaisRESUMO
OBJECTIVES: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. METHOD: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. RESULTS: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. CONCLUSION: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.
RESUMO
INTRODUCTION: Long term opioids are commonly prescribed to manage pain. Dose reduction or discontinuation (deprescribing) can be challenging, even when the potential harms of continuation outweigh the perceived benefits. The Evidence-based clinical practice guideline for deprescribing opioid analgesics was developed using robust guideline development processes and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology, and contains deprescribing recommendations for adults prescribed opioids for pain. MAIN RECOMMENDATIONS: Eleven recommendations provide advice about when, how and for whom opioid deprescribing should be considered, while noting the need to consider each person's goals, values and preferences. The recommendations aim to achieve: implementation of a deprescribing plan at the point of opioid initiation; initiation of opioid deprescribing for persons with chronic non-cancer or chronic cancer-survivor pain if there is a lack of overall and clinically meaningful improvement in function, quality of life or pain, a lack of progress towards meeting agreed therapeutic goals, or the person is experiencing serious or intolerable opioid-related adverse effects; gradual and individualised deprescribing, with regular monitoring and review; consideration of opioid deprescribing for individuals at high risk of opioid-related harms; avoidance of opioid deprescribing for persons nearing the end of life unless clinically indicated; avoidance of opioid deprescribing for persons with a severe opioid use disorder, with the initiation of evidence-based care, such as medication-assisted treatment of opioid use disorder; and use of evidence-based co-interventions to facilitate deprescribing, including interdisciplinary, multidisciplinary or multimodal care. CHANGES IN MANAGEMENT AS A RESULT OF THESE GUIDELINES: To our knowledge, these are the first evidence-based guidelines for opioid deprescribing. The recommendations intend to facilitate safe and effective deprescribing to improve the quality of care for persons taking opioids for pain.
Assuntos
Dor Crônica , Desprescrições , Transtornos Relacionados ao Uso de Opioides , Adulto , Humanos , Analgésicos Opioides/efeitos adversos , Dor Crônica/tratamento farmacológico , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Qualidade de VidaRESUMO
OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.
Assuntos
Cuidadores , Demência , Humanos , Demência/diagnóstico , Estudos Transversais , Países Baixos , Reino UnidoRESUMO
OBJECTIVES: To examine factors contributing to delaying care home admission; and compare the rates of care home admission and cost consequence between two government subsidised programmes, Veterans' Affairs Community Nursing (VCN) and Home Care Package (HCP). METHODS: Our national, population-based retrospective cohort study and cost analysis used existing, de-identified veterans' claims databases (2010-19) and the Registry of Senior Australians Historical Cohort (2010-17), plus aggregate programme expenditure data. This involved 21,636 VCN clients (20,980 aged 65-100 years), and an age- and sex-matched HCP cohort (N = 20,980). RESULTS: Service factors associated with lower risk of care home admission in the VCN cohort were periodic (versus continuous) service delivery (HR 0.27 [95%CI, 0.24-0.31] for ≤18 months; HR 0.89 [95%CI, 0.84-0.95] for >18 months), and majority care delivered by registered nurses (versus personal care workers) (HR 0.86 [95%CI, 0.75-0.99] for ≤18 months; HR 0.91 [95%CI, 0.85-0.98] for >18 months). In the matched cohorts, the time to care home admission for VCN clients (median 28 months, IQR 14-42) was higher than for HCP clients (14, IQR 6-27). Within 5 years of service access, 57.6% (95%CI, 56.9-58.4) of HCP clients and 26.6% (95%CI, 26.0-27.2) of VCN clients had care home admission. The estimated cost saving for VCN recipients compared to HCP recipients over 5 years for relevant government providers was over A$1 billion. CONCLUSIONS: Compared to an HCP model, individuals receiving VCN services remained at home longer, with potentially significant cost savings. This new understanding suggests timely opportunity for many countries' efforts to enhance community-based care services.
Assuntos
Serviços de Assistência Domiciliar , Vida Independente , Humanos , Idoso , Estudos Retrospectivos , Austrália , Serviços de Saúde Comunitária , HospitalizaçãoRESUMO
BACKGROUND: Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support. METHODS: Webinars, a website, social and traditional media, and promotions through project partners were used to disseminate campaign messages to health and social care professionals (primary audience) and people with dementia and carers (secondary audience). The campaign ran between October 2021 and June 2022, with 3-months follow-up. The RE-AIM framework was used for process evaluation. Measurements included surveys and interviews, a log of activities (e.g. webinars, social media posts) and engagements (e.g. attendees, reactions to posts), and Google Analytics. RESULTS: There were 29,053 interactions with campaign activities. More than three-quarters of professionals (n = 63/81) thought webinars were very or extremely helpful. Professionals and people with dementia and carers reported that the website provided appropriate content, an approachable tone, and was easy to use. Following campaign engagement, professionals planned to (n = 77/80) or had modified (n = 29/44) how they communicated the diagnosis and/or provided post-diagnostic information and referrals. Qualitative data suggested that the campaign may have led to benefits for some people with dementia and carers. CONCLUSIONS: Forward with Dementia was successful in terms of reach, appropriateness, adoption and maintenance for professionals, however flow-through impacts on people with dementia are not clear. Targeted campaigns can potentially change health professionals' communication and support around chronic diseases such as dementia.
Assuntos
Demência , Comunicação em Saúde , Humanos , Austrália , Cuidadores , Apoio Social , Demência/diagnósticoRESUMO
INTRODUCTION: Previous meta-analyses have linked social connections and mild cognitive impairment, dementia, and mortality. However, these used aggregate data from North America and Europe and examined a limited number of social connection markers. METHODS: We used individual participant data (N = 39271, Mage = 70.67 (40-102), 58.86% female, Meducation = 8.43 years, Mfollow-up = 3.22 years) from 13 longitudinal ageing studies. A two-stage meta-analysis of Cox regression models examined the association between social connection markers with our primary outcomes. RESULTS: We found associations between good social connections structure and quality and lower risk of incident mild cognitive impairment (MCI); between social structure and function and lower risk of incident dementia and mortality. Only in Asian cohorts, being married/in a relationship was associated with reduced risk of dementia, and having a confidante was associated with reduced risk of dementia and mortality. DISCUSSION: Different aspects of social connections - structure, function, and quality - are associated with benefits for healthy aging internationally. HIGHLIGHTS: Social connection structure (being married/in a relationship, weekly community group engagement, weekly family/friend interactions) and quality (never lonely) were associated with lower risk of incident MCI. Social connection structure (monthly/weekly friend/family interactions) and function (having a confidante) were associated with lower risk of incident dementia. Social connection structure (living with others, yearly/monthly/weekly community group engagement) and function (having a confidante) were associated with lower risk of mortality. Evidence from 13 longitudinal cohort studies of ageing indicates that social connections are important targets for reducing risk of incident MCI, incident dementia, and mortality. Only in Asian cohorts, being married/in a relationship was associated with reduced risk of dementia, and having a confidante was associated with reduced risk of dementia and mortality.
Assuntos
Disfunção Cognitiva , Demência , Humanos , Feminino , Idoso , Masculino , Estudos Longitudinais , Demência/epidemiologia , Demência/psicologia , Estudos de Coortes , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/psicologia , Envelhecimento/psicologiaRESUMO
OBJECTIVES: Shared decision making is the process in which the person, their representative, and health care professional share information with each other, participate in the decision-making process, and agree on a course of action. At present, very little is known about shared decision making (SDM) in medication management from the perspective of long-term care facility residents. The objective of this study was to identify residents' beliefs, motivation, and aspects of the environment that facilitate or impede SDM. DESIGN: A qualitative study was conducted using face-to-face semi-structured interviews, and data analysis was carried out using a thematic approach. SETTING: Six long-term care facilities in Sydney, Australia. PARTICIPANTS: Thirty-one residents. RESULTS: Enablers to resident involvement in SDM were resident beliefs in exercising their right to take part in medication-related decisions, preference to maintain control over decisions, and motivation to raise concern about medication. Residents were not motivated to be involved in SDM if they believed they had no control over life circumstance, perceived that medications were necessary, or experienced no problems with their medications. Participation in SDM was hindered by limitations in opportunities for resident involvement, engagement with staff and primary care physician to discuss issues related to medications, and continuity of care with their regular physician. CONCLUSION: This study highlights that the residents' beliefs in control over decisions and concerns about medication are a significant function of the SDM process. It is important that residents are given the choice to take part in SDM, their beliefs and values regarding SDM are understood, and the culture of the care facility respects residents' right to participate in SDM.
Assuntos
Participação do Paciente , Médicos , Tomada de Decisões , Tomada de Decisão Compartilhada , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND: There are a range of treatment options for osteoarthritis (OA) of the knee and hip, each with a unique profile of risks and benefits. Patient decision aids can help incorporate patient preferences in treatment decision-making. The aim of this study was to develop and test the utility of a patient decision aid for OA that was developed using a multicriteria decision analytic framework. METHODS: People contemplating treatment for OA who had accessed the website myjointpain.org.au were invited to participate in the study by using the online patient decision aid. Two forms of the patient decision aid were created: A shorter form and a longer form, which allowed greater customization that was offered to respondents after they had completed the shorter form. Respondents also completed questions asking about their experience using the patient decision aid. RESULTS: A total of 625 self-selected respondents completed the short-form and 180 completed the long-form. Across both forms, serious side effects, pain and function were rated as the most important treatment outcomes. Most respondents (64%) who completed the longer form reported that using the tool was a positive experience, 38% reported that using the tool had changed their mind and 48% said that using the tool would improve the quality of their decision-making. CONCLUSIONS: Overall, the findings suggest that this patient decision aid may be of use to a substantial number of people in facilitating appropriate treatment decision-making. PATIENT OR PUBLIC CONTRIBUTION: Service users of myjointpain.org.au were involved through their participation in the study, and their feedback will guide the development of future iterations of the tool.
Assuntos
Osteoartrite do Joelho , Humanos , Osteoartrite do Joelho/terapia , Preferência do Paciente , Técnicas de Apoio para a DecisãoRESUMO
Concordant assessments of physical activity (PA) and related measures in cardiac rehabilitation (CR) is essential for exercise prescription. This study compared exercise measurement from an in-person walk test; wearable activity tracker; and self-report at CR entry, completion (8-weeks) and follow-up (16-weeks). Forty patients beginning CR completed the Six-Minute Walk Test (6MWT), Physical Activity Scale for the Elderly (PASE), and wore Fitbit-Flex for four consecutive days including two weekend days. The sample mean age was 66 years; 67% were male. Increased exercise capacity at CR completion and follow-up was detected by a 6MWT change in mean distance (39 m and 42 m; p = 0.01, respectively). Increased PA participation at CR completion was detected by Fitbit-Flex mean change in step counts (1794; p = 0.01). Relative changes for Fitbit-Flex step counts and a 6MWT were consistent with previous research, demonstrating Fitbit-Flex's potential as an outcome measure. With four days of data, Fitbit-Flex had acceptable ICC values in measuring step counts and MVPA minutes. Fitbit-Flex steps and 6MWT meters are more responsive to changes in PA patterns following exposure to a cardiac rehabilitation program than Fitbit-Flex or PASE-estimated moderate-vigorous PA (MVPA) minutes. Fitbit-Flex step counts provide a useful additional measure for assessing PA outside of the CR setting and accounts for day-to-day variations. Two weekend days and two weekdays are needed for Fitbit-Flex to estimate PA levels more precisely.
Assuntos
Reabilitação Cardíaca , Idoso , Exercício Físico , Terapia por Exercício , Monitores de Aptidão Física , Humanos , Masculino , Estudos ProspectivosRESUMO
The Alzheimer's Association International Conference held its sixth Satellite Symposium in Sydney, Australia in 2019, highlighting the leadership of Australian researchers in advancing the understanding of and treatment developments for Alzheimer's disease (AD) and other dementias. This leadership includes the Australian Imaging, Biomarker, and Lifestyle Flagship Study of Ageing (AIBL), which has fueled the identification and development of many biomarkers and novel therapeutics. Two multimodal lifestyle intervention studies have been launched in Australia; and Australian researchers have played leadership roles in other global studies in diverse populations. Australian researchers have also played an instrumental role in efforts to understand mechanisms underlying vascular contributions to cognitive impairment and dementia; and through the Women's Healthy Aging Project have elucidated hormonal and other factors that contribute to the increased risk of AD in women. Alleviating the behavioral and psychological symptoms of dementia has also been a strong research and clinical focus in Australia.
Assuntos
Envelhecimento/fisiologia , Doença de Alzheimer/epidemiologia , Pesquisa Biomédica , Progressão da Doença , Sintomas Prodrômicos , Doença de Alzheimer/diagnóstico , Doença de Alzheimer/tratamento farmacológico , Austrália/epidemiologia , Biomarcadores/sangue , Biomarcadores/líquido cefalorraquidiano , Biomarcadores/metabolismo , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/tratamento farmacológico , Humanos , Estilo de Vida , Tomografia por Emissão de PósitronsRESUMO
Many publications on dementia start by outlining the current estimated number of people with dementia and how that figure is going to double (in Western societies) or even quadruple (in developing countries) in the coming decades as a result of increasing life expectancy (in itself a good development). Dementia is therefore a huge challenge to society, both in terms of providing good care for persons living with dementia and their family caregivers, as well as in searching for curative solutions. Both these challenges are complex. Fortunately, recent research indicates primary prevention to be a promising additional strategy in the dementia quest. Now that epidemiological research robustly shows the link between lifestyle and risk of dementia, new challenges emerge, such as how to increase public awareness about brain health, how to develop and implement strategies to promote brain healthy lifestyles and how to avoid increasing health inequalities. Interdem, the pan-European network of researchers on Psychosocial Interventions in Dementia, strongly welcomes this new strategy and consequently established a taskforce on primary prevention. In this position paper, we outline what we see as main building blocks of primary prevention of dementia.
Assuntos
Demência , Cuidadores , Demência/epidemiologia , Demência/prevenção & controle , Humanos , Expectativa de Vida , Estilo de Vida , Prevenção PrimáriaRESUMO
BACKGROUND: With the introduction of consumer-directed care in the Australian community aged care sector, there are more opportunities for occupational therapists to provide evidence-based services that meet consumer needs. There is also an increasing requirement for health professionals to promote their interventions to consumers. Particularly for the implementation of new programs within organisations. However, occupational therapists have historically neglected widely promoting the role of occupational therapy services for older people. This study examines the perceptions of occupational therapists and their managers in promoting their service; the Care of People in their Environment (COPE) Program. METHODS: This study utilised a qualitative interpretative description; including 28 in-depth interviews. Purposeful sampling ensured a variety of occupational therapists from different health contexts. Thematic analysis captured key emergent themes related to promoting occupational therapy interventions and implementation. RESULTS: Many occupational therapists were apprehensive about promoting or selling their services and interventions. Greater levels of confidence in promoting the program were present when the program aligned with traditional models of service delivery and organisational processes. Occupational therapists described having limited opportunity to directly promote the program to consumers as community case managers were mostly the main contact at the organisation. There was limited consideration of promotion strategies and therefore limited enactment of strategies by organisations. Not-for-profit and non-government organisations recognise that the changed community aged care market provided new business opportunities. CONCLUSION: With changes in the Australian aged care system, occupational therapy has great opportunity to provide diverse, evidence-based interventions driven by the needs of consumers. Reframing the notion of 'selling', to empowering consumers to be more informed about their options, will allow occupational therapists to build confidence in their promotional skills. Promoting evidence-based programs will have positive outcomes for the visibility, professional identity and recognition of occupational therapy.
Assuntos
Terapia Ocupacional , Idoso , Austrália , Pessoal de Saúde , Humanos , Terapeutas OcupacionaisRESUMO
Objectives: To test feasibility and potential effects of the interdisciplinary Home-bAsed Reablement Program (I-HARP) that integrates evidence-based strategies and cognitive rehabilitation techniques into a dementia-specific, bio-behavioural-environmental intervention.Methods: A parallel-group randomised controlled pilot trial was conducted in Sydney, Australia, targeting community-dwelling people with amnestic mild cognitive impairment or mild/moderate stages of dementia and their carer (n = 18 dyads). I-HARP comprised: up to 12 home visits by registered nurse, occupational therapist, and psychologist, tailored to the individual client's needs;
Assuntos
Cognição
, Qualidade de Vida
, Austrália
, Proteínas de Transporte
, Citocinas
, Estudos de Viabilidade
, Humanos
, Projetos Piloto
RESUMO
OBJECTIVE: Without the current option of a dementia cure, there is an existing need to focus on rehabilitation intervention. This includes interventions that address language and communication impairment (LCI), found to be present early in most types of dementia. Assessment of LCI can occur in many contexts (e.g., speech pathology, neuropsychology, occupational therapy) and is a vital initial step in providing adequate support to people living with dementia and their families. However, no previous research has compared the psychometric properties and utility of currently available and suitable tools for this purpose. METHODS: Eighteen tools with the potential to assess language and communication in dementia were identified through a two-stage process, and a synthesis of evidence is provided. RESULTS: Three tools satisfied all selection criteria: the Arizona Battery for Communication Disorders of Dementia, the Sydney Language Battery, and the Addenbrooke's Cognitive Examination III. Main limitations of the 18 tools reviewed concern a lack of standardization, normative data, and criterion validity, as well as poor evidence of reliability of tools originally developed for non-neurodegenerative LCI (e.g., aphasia in the context of cerebrovascular accidents). Furthermore, no tool considers the perspectives of people with dementia regarding the impact of LCI on their daily lives. CONCLUSION: Further research is needed to improve reliability and validity of currently available tools for the linguistic assessment of people living with dementia. Importantly, a tool to assess early identification of language and communication difficulties and associated needs among people with dementia is warranted to facilitate timely management and support.
Assuntos
Comunicação , Demência/psicologia , Avaliação Geriátrica/estatística & dados numéricos , Idioma , Idoso , Avaliação Geriátrica/métodos , Humanos , PsicometriaRESUMO
BACKGROUND: Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement. OBJECTIVES: To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care. DESIGN: This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals. RESULTS: Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals' communication skills, timing of initiating conversations, relationship quality, and orientation to the future. CONCLUSION: This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves.
Assuntos
Serviços de Saúde Comunitária/tendências , Tomada de Decisões , Atenção à Saúde/tendências , Demência/terapia , Participação dos Interessados , Cuidadores , Serviços de Saúde Comunitária/métodos , Atenção à Saúde/métodos , Família , Pessoal de Saúde , Humanos , Vida IndependenteRESUMO
BACKGROUND: A major gap exists internationally in providing support to maintain functional and social independence of older people with dementia living at home. This project evaluates a model of care that integrates evidence-based strategies into a person-centred interdisciplinary rehabilitation package: Interdisciplinary Home-bAsed Reablement Program (I-HARP). Two central aims are: 1) to determine the effectiveness of I-HARP on functional independence, mobility, quality of life and depression among people with dementia, their home environmental safety, carer burden and quality of life, and I-HARP cost-effectiveness; and 2) to evaluate the processes, outcomes and influencing factors of the I-HARP implementation. METHODS: I-HARP is a 4-month model of care, integrated in community aged care services and hospital-based community geriatric services, and consists of: 1) 8-12 home visits, tailored to the individual client's needs, by an occupational therapist, registered nurse, and other allied health staff; 2) minor home modifications/assistive devices to the value of 60 years with mild to moderate dementia and his/her carer). During Phase I, I-HARP advisory group is established and training of I-HARP interventionists is completed, and the effectiveness of I-HARP is examined using a pragmatic RCT. Phase II, conducted concurrently with Phase I, focuses on the process evaluation of the I-HARP implementation using a realist approach. Semi-structured interviews with participants and focus groups with I-HARP interventionists and participating site managers will provide insights into the contexts, mechanisms and outcomes of I-HARP. DISCUSSION: I-HARP is being evaluated within the real-world systems of hospital-based and community-based aged care services in Australia. Future directions and strategies for reablement approaches to care for community dwelling people living with dementia, will be developed. The study will provide evidence to inform key stakeholders in their decision making and the use/delivery of the program, as well as influence future systems-thinking and changes for dementia care. TRIAL REGISTRATION: Australian New Zealand Clinical Trial Registry ACTR N12618000600246 (approved 18/04/2018).
Assuntos
Demência/epidemiologia , Demência/psicologia , Serviços de Assistência Domiciliar/tendências , Vida Independente/psicologia , Vida Independente/tendências , Idoso , Idoso de 80 Anos ou mais , Austrália/epidemiologia , Cuidadores/psicologia , Demência/terapia , Depressão/epidemiologia , Depressão/psicologia , Depressão/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Resultado do TratamentoRESUMO
The notion of social health (Huber et al., 2011) as applied to dementia care research was introduced to redress the balance of empirical studies that tended to focus on biomedical, cognitive, and functional status in dementia (Vernooij-Dassen and Jeon, 2016). The introduction of social health has followed the zeitgeist of campaigners for a better life for those living with dementia, with initiatives to improve the social images of dementia (Alzheimers.org, 2017). Examples from social research in dementia to examine friendships and the social environments of people with dementia exist (Medeiros et al., 2012), but introduction of the paradigm of social health in dementia (Vernooij-Dassen and Jeon, 2016) has harnessed a growing research agenda (de Vugt and Dröes, 2017). This paradigm provides an umbrella concept to study how social aspects influence the dynamic balance between opportunities and limitations in dementia. Social health goes beyond the neuropathology of dementia, to understand how people, their social networks and wider society with its norms, interact with the condition (Vernooij-Dassen and Jeon, 2016). It is not far removed from the ideas of Tom Kitwood, the pioneer of person-centered dementia care, who noted that "personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being" (Kitwood, 1997). The INTERDEM (Early detection and timely INTERvention in DEMentia, www.interdem.org) psychosocial research agenda aspired to improve knowledge about social inclusion and reciprocal relationships for people with dementia (Moniz-Cook et al., 2011). The concept of social health (Vernooij-Dassen and Jeon, 2016) with its dimensions for dementia research (Dröes et al., 2017) has begun to develop this knowledge-base.
Assuntos
Demência/psicologia , Rede Social , Apoio Social , Adaptação Psicológica , Pesquisa Biomédica/tendências , Doença Crônica/psicologia , Doença Crônica/terapia , Demência/terapia , Humanos , Qualidade de VidaRESUMO
ABSTRACTBackground:The vision for dementia-friendly communities is challenged by limited public awareness and stigma about dementia. The study aim was to elicit stakeholder priorities for the message content of an education program to improve dementia awareness among youth; specifically, what do children need to know about dementia? METHODS: A qualitative inquiry using interviews and focus groups was used. Purposive sampling achieved maximum variation in dementia experience and participant characteristics. Focus groups with Scouts in the community aged 9-12 years old (n = 22) used innovative techniques to explore children's attitudes towards people with dementia. Participants with personal experience of dementia were five people with early-stage dementia; 12 adult primary carers; four non-primary carers; and six grandchildren of a person with dementia. They were asked what is important for children to understand about dementia and what attitudes they may like an education program to confer. Content analysis was performed using NVivo10. RESULTS: Strong themes to emerge were that children need to know the whole truth about dementia; that individuals with dementia are "still people," that it is "not the fault" of the person with dementia; and that dementia is different and typically unpredictable for everyone. Discussions also indicated a need to educate children about ways to relate to a person with dementia, and to appreciate "positives" within a relationship. CONCLUSIONS: Children are our future citizens. Developing an education program for children with this message content may be fundamental to de-stigmatizing dementia and laying the foundation to dementia-friendly communities.
Assuntos
Atitude , Cuidadores , Demência/psicologia , Estigma Social , Criança , Demência/diagnóstico , Família , Feminino , Grupos Focais , Educação em Saúde , Humanos , Entrevistas como Assunto , Conhecimento , Masculino , Pesquisa QualitativaRESUMO
Dementia can interfere with the maintenance of social interactions. The ability to participate in social interactions is one of the elements that enables good social health (Hubert et al., 2011), and having dementia does not automatically eliminates the person's opportunity to have good social health (Vernooij-Dassen and Jeon, 2016). We highlighted in a previous study that people with dementia who did not know each other interacted spontaneously when they were in a stimulating social interaction setting (Mabire et al., 2016). However, a lack of activity and social interaction in nursing homes is still a widespread issue (Harper Ice, 2002). Stimulation of social interactions is rarely used as an intervention and social interactions are seldomly used as social health related outcomes.