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1.
N Z Med J ; 133(1522): 18-29, 2020 09 25.
Artigo em Inglês | MEDLINE | ID: mdl-32994613

RESUMO

AIMS: To evaluate how New Zealand newsprint media shapes discourse about dementia through its framing of the causes, effects and solutions, and who bears responsibility for the disease. METHODS: Using New Zealand's three largest daily newspapers, we examined i) the coverage of dementia between 2012-2016, ii) the framing of causes and effects of dementia, and iii) the most frequent associations of causes and effects of dementia. We integrated the findings to assess the moral evaluation of dementia in New Zealand newsprint media. RESULTS: Of the 361 articles extracted all presented effects of dementia, 35% discussed causes and 7% mentioned solutions for dementia. Medical causes dominated over health behavioural and societal causes, and effects were mostly the negative impact on the individual, family and society. Modifiable medical causes were more likely to be associated with adverse outcomes for society whereas non-modifiable medical causes were more likely to be associated with adverse outcomes for the individual and/or their family. CONCLUSIONS: Between 2012-16 New Zealand newsprint media largely portrayed dementia from a 'powerless victim' frame. Further research is required to assess whether, since 2016, there has been a shift towards media framing of dementia as potentially preventable and a social justice issue.


Assuntos
Demência/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Meios de Comunicação de Massa , Opinião Pública , Humanos , Princípios Morais , Nova Zelândia , Estigma Social
2.
Pflege ; 33(5): 309-317, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32996861

RESUMO

Immediate reactions of people with dementia to individualized music - Analysis of behavioral observations in a nursing home Abstract. Background: Due to the increasing prevalence of dementia, there is an urgent need for effective non-pharmacological interventions to improve the quality of life of people with dementia (PwD) and to relieve their carers. Studies show evidence for the benefits of individualized music. However, the immediate reactions to individualized music have not yet been adequately investigated. AIM: The research objective of the study was the investigation of the immediate effects of an individualized music intervention in a nursing home using a newly developed systematic behavioral observation rating scale. METHODS: In 153 behavioral observations of 20 PwD, 32 different experiences and behaviors pertaining to 11 categories such as emotional and motor changes which indicate immediate reactions to listening to music were rated. RESULTS: Participants showed significantly more positive reactions (e. g. joy or relaxation) and less negative reactions immediately after listening to the music compared to before. Moreover, in the course of listening to music, participants showed significantly more positive reactions, most often smiles, movements to music, attentive listening, relaxation and general vigilance / interest / social contact. CONCLUSIONS: The systematic behavioral observation rating scale proved to be a suitable method for rating the experiences and behaviors of people with dementia. Listening to individualized music seems to be a helpful intervention for PwD in institutional care settings.


Assuntos
Demência/psicologia , Demência/terapia , Musicoterapia/métodos , Idoso , Técnicas de Observação do Comportamento , Humanos , Casas de Saúde , Resultado do Tratamento
3.
Actas esp. psiquiatr ; 48(4): 169-180, jul.-ago. 2020. tab, graf
Artigo em Espanhol | IBECS | ID: ibc-193805

RESUMO

OBJETIVO: Realizar un meta-análisis actualizado de estudios prospectivos que evalúen la asociación entre la depresión y el riesgo de demencia. METODOLOGÍA: Se realizó una búsqueda bibliográfica en Pubmed para identificar estudios publicados desde enero de 2014 hasta marzo del 2019. Se seleccionaron estudios prospectivos con seguimiento mínimo de 1 año; evaluación de la depresión y ausencia de demencia y deterioro cognitivo leve (DCL) al inicio del estudio. Calculamos el riesgo relativo combinado (RR) mediante un modelo de efectos aleatorios, y la fracción de demencia poblacional atribuible (FAP) a la depresión. RESULTADOS: Ocho cohortes fueron incluidas. Obtuvimos una asociación estadísticamente significativa entre la depresión y el riesgo de demencia, con un RR global de 1,63 (IC 95%: 1,30-2,04), y una FAP de 9,0% (IC 95%: 4,5%-14,1%). CONCLUSIONES: La depresión se asocia con un aumento de riesgo de demencia en este meta-análisis


BACKGROUND. Our primary aim was to conduct an up-date meta-analysis of prospective studies investigating the association between depression and dementia risk. METHODS: We searched Pubmed database to identify all relevant papers published from January 2014 to March 2019. Prospective studies with a minimum follow-up period of 1 year, baseline depression assessment, absence of dementia or mild cognitive impairment at baseline were selected. We calculated pooled relative risks (RR), with a random effect model, as well as compute population attributable fraction (PAF) of dementia due to depression. RESULTS. Eight cohorts were included. A statistically significant association between depression and dementia risk, with a pooled RR of 1.63 (95% CI: 1.30-2.04), and a PAF of 9.0% (95% CI: 4.5%-14.1%), were found. CONCLUSIONS: Depression is associated with an increased risk of dementia in this meta-analysis


Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Idoso , Depressão/psicologia , Demência/psicologia , Estudos Prospectivos , Fatores de Risco
4.
Medicine (Baltimore) ; 99(31): e21412, 2020 Jul 31.
Artigo em Inglês | MEDLINE | ID: mdl-32756140

RESUMO

We examine the relationship between dementia and psychiatric disorder diagnoses among long-term care residents in nursing homes across the state of Rhode Island (RI), USA.Observational clinical study.Two hundred fifty-five residents with and without the diagnosis of dementia were included in this study.Prevalence analysis was used to elucidate information on psychiatric disorders in the overall cohort, and among residents with dementia. Questions from the quality of life questionnaire (EQ-5D-3L) that provides information on self-care, anxiety/depression, and resident's view of how healthy they are, were used to evaluate their association with dementia and psychiatric disorders. A logistic regression analysis was conducted to understand the relationship between dementia and mental illness diagnoses in long-term care facilities. Finally, a subgroup logistic regression analysis was performed for residents with Alzheimer disease.65.1% of all residents suffered from at least 1 psychiatric disorder. Anxiety was the most common diagnosis (36.5%), followed by depression (28.6%), and insomnia (14.9%). There was a positive and statistically significant association between any mental illness diagnosis and dementia (adjusted OR: 3.73; 95% CI: 1.34-10.41). Bipolar disorder and insomnia were negatively and statistically significantly associated with dementia (adjusted OR: 0.17; 95% CI: 0.03-0.89 AND adjusted OR: 0.39; 95% CI: 0.16-0.96 respectively). Age and COPD were also statistically associated with dementia (adjusted OR: 1.07; 95% CI: 1.03-1.11 AND adjusted OR: 0.28, 95% CI: 0.12-0.66). Alzheimer disease was positively and significantly associated with the diagnosis of any mental illness (adjusted OR: 3.77; 95% CI: 1.17-12.20).We studied the relationship between dementia and diagnoses of psychiatric disorders present in long-term care residents. We found that residents with a diagnosis of dementia were more likely to suffer from at least 1 psychiatric disorder. Further work is needed to establish the neuropathophysiological relationship between psychiatric disorders and dementia.


Assuntos
Demência/psicologia , Transtorno Depressivo/psicologia , Assistência de Longa Duração , Idoso , Idoso de 80 Anos ou mais , Demência/complicações , Transtorno Depressivo/complicações , Feminino , Humanos , Masculino , Psicometria , Rhode Island , Inquéritos e Questionários
7.
Cochrane Database Syst Rev ; 8: CD010515, 2020 08 17.
Artigo em Inglês | MEDLINE | ID: mdl-32786083

RESUMO

BACKGROUND: People with dementia living in the community, that is in their own homes, are often not engaged in meaningful activities. Activities tailored to their individual interests and preferences might be one approach to improve quality of life and reduce challenging behaviour. OBJECTIVES: To assess the effects of personally tailored activities on psychosocial outcomes for people with dementia living in the community and their caregivers. To describe the components of the interventions. To describe conditions which enhance the effectiveness of personally tailored activities in this setting. SEARCH METHODS: We searched ALOIS: the Cochrane Dementia and Cognitive Improvement Group's Specialized Register on 11 September 2019 using the terms: activity OR activities OR occupation* OR "psychosocial intervention" OR "non-pharmacological intervention" OR "personally-tailored" OR "individually-tailored" OR individual OR meaning OR involvement OR engagement OR occupational OR personhood OR "person-centred" OR identity OR Montessori OR community OR ambulatory OR "home care" OR "geriatric day hospital" OR "day care" OR "behavioural and psychological symptoms of dementia" OR "BPSD" OR "neuropsychiatric symptoms" OR "challenging behaviour" OR "quality of life" OR depression. ALOIS contains records of clinical trials identified from monthly searches of a number of major healthcare databases, numerous trial registries and grey literature sources. SELECTION CRITERIA: We included randomised controlled trials and quasi-experimental trials including a control group offering personally tailored activities. All interventions comprised an assessment of the participant's present or past interests in, or preferences for, particular activities for all participants as a basis for an individual activity plan. We did not include interventions offering a single activity (e.g. music or reminiscence) or activities that were not tailored to the individual's interests or preferences. Control groups received usual care or an active control intervention. DATA COLLECTION AND ANALYSIS: Two review authors independently checked the articles for inclusion, extracted data, and assessed the methodological quality of all included studies. We assessed the risk of selection bias, performance bias, attrition bias, and detection bias. In case of missing information, we contacted the study authors. MAIN RESULTS: We included five randomised controlled trials (four parallel-group studies and one cross-over study), in which a total of 262 participants completed the studies. The number of participants ranged from 30 to 160. The mean age of the participants ranged from 71 to 83 years, and mean Mini-Mental State Examination (MMSE) scores ranged from 11 to 24. One study enrolled predominantly male veterans; in the other studies the proportion of female participants ranged from 40% to 60%. Informal caregivers were mainly spouses. In four studies family caregivers were trained to deliver personally tailored activities based on an individual assessment of interests and preferences of the people with dementia, and in one study such activities were offered directly to the participants. The selection of activities was performed with different methods. Two studies compared personally tailored activities with an attention control group, and three studies with usual care. Duration of follow-up ranged from two weeks to four months. We found low-certainty evidence indicating that personally tailored activities may reduce challenging behaviour (standardised mean difference (SMD) -0.44, 95% confidence interval (CI) -0.77 to -0.10; I2 = 44%; 4 studies; 305 participants) and may slightly improve quality of life (based on the rating of family caregivers). For the secondary outcomes depression (two studies), affect (one study), passivity (one study), and engagement (two studies), we found low-certainty evidence that personally tailored activities may have little or no effect. We found low-certainty evidence that personally tailored activities may slightly improve caregiver distress (two studies) and may have little or no effect on caregiver burden (MD -0.62, 95% CI -3.08 to 1.83; I2 = 0%; 3 studies; 246 participants), caregivers' quality of life, and caregiver depression. None of the studies assessed adverse effects, and no information about adverse effects was reported in any study. AUTHORS' CONCLUSIONS: Offering personally tailored activities to people with dementia living in the community may be one approach for reducing challenging behaviour and may also slightly improve the quality of life of people with dementia. Given the low certainty of the evidence, these results should be interpreted with caution. For depression and affect of people with dementia, as well as caregivers' quality of life and burden, we found no clear benefits of personally tailored activities.


Assuntos
Demência/reabilitação , Vida Independente , Preferência do Paciente , Qualidade de Vida , Participação Social , Idoso , Idoso de 80 Anos ou mais , Cuidadores/educação , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Demência/psicologia , Depressão/reabilitação , Feminino , Humanos , Masculino , Testes de Estado Mental e Demência/estatística & dados numéricos , Comportamento Problema/psicologia , Angústia Psicológica , Ensaios Clínicos Controlados Aleatórios como Assunto , Cônjuges/educação , Cônjuges/psicologia , Resultado do Tratamento
8.
Geriatr Gerontol Int ; 20(10): 956-960, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32770648

RESUMO

AIM: The dementia supporter training program is conducted by community general support centers (CGSCs) to raise dementia awareness. Convenience stores are widespread throughout Japan, and they play an important role in the daily lives of older adults. We examined whether participation of convenience stores in the program promotes cooperation between the stores and CGSCs. METHODS: Using data from a nationwide survey, we conducted a longitudinal observational study. Participation of stores in the program and cooperation with CGSC were measured. The proportion of cooperation with CGSCs in 2017 and 2018 were compared between stores that had already participated in the program in 2016 (participation group) and those that did not (non-participation group). RESULTS: Of the 14 884 stores, 542 stores participated in the program in 2016. In 2017 and 2018, 8.1% and 7.2% of the participation group cooperated with CGSCs, while 3.2% and 4.0% of the non-participation group did. CONCLUSIONS: Dementia supporter training programs could be an opportunity to promote cooperation between convenience stores and CGSCs to support older adults. Geriatr Gerontol Int 2020; 20: 956-960.


Assuntos
Comércio , Demência/psicologia , Educação em Saúde , Parcerias Público-Privadas , Idoso , Assistência à Saúde , Humanos , Vida Independente , Japão , Estudos Longitudinais , Inquéritos e Questionários
9.
PLoS One ; 15(8): e0237677, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32817648

RESUMO

BACKGROUND: The present study investigated the factor structure of positive aspects of caregiving (PAC) scale among primary informal caregivers providing care to persons with dementia (PWD) in Singapore. METHODS: 282 primary informal caregivers of PWD were recruited from the Institute of Mental Health, and Changi General Hospital and administered the 9-item PAC scale. A confirmatory factor analyses (CFA) was conducted to test the model fit of the 9-item PAC proposed by the scale developer and multiple linear regression was used to investigate the significant socio-demographic correlates. RESULTS: CFA showed that the 2-factor structure including 'Self-Affirmation' and 'Outlook on Life' had an acceptable model fit. After controlling for confounding variables, Malay caregivers were associated with higher scores on PAC and 'Self-Affirmation' compared to caregivers of other ethnicities. Caregivers with Secondary or below education level had higher PAC and 'Outlook on Life' scores. Caregivers who had received formal training scored higher in PAC, 'Self-Affirmation' and 'Outlook on Life'. DISCUSSION: The present study confirmed that the 2-factor structure of the 9-item PAC was suitable for informal caregivers of PWD in Singapore. The findings have important implications for locally available interventions to enhance caregiver's psychological well-being and reduce burden of care.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Demência/epidemiologia , Psicometria , Adulto , Idoso , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Demência/psicologia , Feminino , Humanos , Modelos Lineares , Masculino , Saúde Mental , Pessoa de Meia-Idade , Análise Multivariada , Qualidade de Vida , Singapura , Inquéritos e Questionários
10.
PLoS One ; 15(7): e0235534, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32609745

RESUMO

INTRODUCTION: Alzheimer's disease and related dementias (ADRD) and mild cognitive impairment (MCI) are often under-recognized in the community. MCI/ADRD screening could offer benefits such as early treatment, research participation, lifestyle modification, and advanced care planning. To date, there are no clear guidelines regarding the benefits vs. harms of dementia screening or whether a dementia screening program could be successful. METHODS: A community-based study was conducted to evaluate an MCI/ADRD screening program and determine what older adults would do with the information. Measures of cognition, physical health, functionality, and mood were collected. Participants met with a health professional, were given screening results with recommendations, and then contacted 60 days later to determine what was done with the results. Logistic regression models were used to build predictive models. RESULTS: Participants (n = 288) had a mean age of 71.5±8.3y, mean education of 13.3±4.8y, and were 70% female, 67% White, 26% African American, and 48% Hispanic. After 60 days, 75% of participants were re-contacted; 54% shared results with family, 33% shared results with health care providers (HCPs), and 52% initiated behavioral change. Among participants sharing results with HCPs, 51% reported HCPs did not follow-up on the results, and 18% that HCPs did not show any interest in the screening visit or its results. Predictors of sharing results with HCPs were elevated hemoglobin A1C (OR = 1.85;95%CI:1.19-2.88), uncontrolled hypertension (OR = 2.73;95%CI:1.09-6.83), and mobility issues (OR = 2.43;95%CI: 1.93-5.54). Participant behavioral changes included lifestyle modification (58%), social engagement (10%), cognitive stimulation (5%), and advanced care planning (4%). The most significant predictors of sharing with family were better overall mental health (OR = 0.19; 95%CI: 0.06-0.59) and better physical function (OR = 0.38; 95%CI: 0.17-0.81). DISCUSSION: MCI/ADRD screening was well-received by a diverse community sample. Participants showed interest in sharing the results with their family and HCPs and many attempted behavioral change. While HCPs did not always act on screening results, 25% ordered further testing and evaluation. Efforts need to be directed toward (1) increasing self-efficacy of older adults to discuss screening results with their HCPs, and (2) educating HCPs on the value of early detection of MCI/ADRD. Community dementia screening programs can increase MCI/ADRD detection and improve patient-centered outcomes and medical decision-making.


Assuntos
Demência/diagnóstico , Programas de Rastreamento/psicologia , Afeto , Idoso , Idoso de 80 Anos ou mais , Cognição , Estudos Transversais , Demência/fisiopatologia , Demência/psicologia , Demografia , Feminino , Humanos , Masculino , Programas de Rastreamento/estatística & dados numéricos , Pessoa de Meia-Idade , Cooperação do Paciente/estatística & dados numéricos , Características de Residência/estatística & dados numéricos
13.
Value Health ; 23(6): 760-767, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32540234

RESUMO

OBJECTIVES: To assess the acceptability and validity of the 3 levels of the EQ-5D (EQ-5D-3L) compared with the Quality of Life in Alzheimer's Diseases (QoL-AD) in patients living with dementia. METHODS: The analysis was based on 560 dyads of persons with dementia and their caregivers of the multicenter observational study of dementia care networks in Germany (DemNet-D). Health-related quality of life was assessed by face-to-face interviews using the EQ-5D-3L (self-rating) and the QoL-AD (self- and proxy-rating). The number of missing values, the score ranges (observed vs possible range) and the floor and ceiling effects were used to assess the acceptability. We used one-way analyses of variance and multivariate linear regression models to evaluate the discriminative ability. The convergent validity was assessed using Spearman's correlation coefficient (rs) and multivariate regression models. RESULTS: The EQ-5D index had a higher response rate (89% vs 84%) and a comparable floor (>1%) but a higher ceiling effect (18% vs >1%) compared with the QoL-AD. Both measures can significantly differentiate between different stages of general health, instrumental activities of daily living, and depression. The EQ-5D index and the visual analog scale self-rating scores strongly correlated with the QoL-AD self-rating (rs = 0.644 and 0.553, respectively) but not with the proxy-rating score (rs = 0.314 and rs = 0.170, respectively), which was confirmed by multivariate regression analyses. CONCLUSION: The results satisfy acceptability, discriminative ability, and convergent validity for moderately cognitively and functionally impaired patients living with dementia. The EQ-5D-3L performed comparably with the QoL-AD, and could, therefore, be used in economic evaluations in dementia. The differences between self- and proxy-ratings should be evaluated and considered in the interpretation of health-related quality of life scores.


Assuntos
Doença de Alzheimer/psicologia , Cuidadores/psicologia , Demência/psicologia , Qualidade de Vida , Inquéritos e Questionários , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Depressão/epidemiologia , Feminino , Alemanha , Humanos , Masculino , Medidas de Resultados Relatados pelo Paciente , Reprodutibilidade dos Testes
15.
J Alzheimers Dis ; 76(1): 33-40, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32538856

RESUMO

BACKGROUND: Fundació ACE is a non-profit organization providing care based on a holistic model to persons with cognitive disorders and their families for 25 years in Barcelona, Spain. Delivering care to this vulnerable population amidst the COVID-19 pandemic has represented a major challenge to our institution. OBJECTIVE: To share our experience in adapting our model of care to the new situation to ensure continuity of care. METHODS: We detail the sequence of events and the actions taken within Fundació ACE to swiftly adapt our face-to-face model of care to one based on telemedicine consultations. We characterize individuals under follow-up by the Memory Unit from 2017 to 2019 and compare the number of weekly visits in 2020 performed before and after the lockdown was imposed. RESULTS: The total number of individuals being actively followed by Fundació ACE Memory Unit grew from 6,928 in 2017 to 8,147 in 2019. Among those newly diagnosed in 2019, most patients had mild cognitive impairment or mild dementia (42% and 25%, respectively). Weekly visits dropped by 60% following the suspension of face-to-face activity. However, by April 24 we were able to perform 78% of the visits we averaged in the weeks before confinement began. DISCUSSION: We have shown that Fundació ACE model of care has been able to successfully adapt to a health and social critical situation as COVID-19 pandemic. Overall, we were able to guarantee the continuity of care while preserving the safety of patients, families, and professionals. We also seized the opportunity to improve our model of care.


Assuntos
Betacoronavirus , Infecções por Coronavirus/terapia , Demência/terapia , Saúde Holística , Assistência Centrada no Paciente/métodos , Pneumonia Viral/terapia , Telemedicina/métodos , Idoso , Idoso de 80 Anos ou mais , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/psicologia , Demência/epidemiologia , Demência/psicologia , Feminino , Seguimentos , Saúde Holística/tendências , Humanos , Masculino , Pandemias , Assistência Centrada no Paciente/tendências , Pneumonia Viral/epidemiologia , Pneumonia Viral/psicologia , Espanha/epidemiologia , Telemedicina/tendências
16.
Psychol Trauma ; 12(S1): S220-S221, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32584105

RESUMO

Restrictions related to the 2019 novel coronavirus (COVID-19) pose unique and significant challenges for community-dwelling caregivers and people with dementia, including disrupted routines, a lack of structure, decreased access to respite care, and new or worsening safety issues related to interpersonal violence and hygiene. In addition to identifying issues confronting caregivers, the authors also describe possible ways to address some of these pressing concerns. (PsycInfo Database Record (c) 2020 APA, all rights reserved).


Assuntos
Cuidadores/psicologia , Infecções por Coronavirus , Demência/enfermagem , Demência/psicologia , Vida Independente/psicologia , Controle de Infecções , Pandemias , Pneumonia Viral , Adulto , Idoso , Idoso de 80 Anos ou mais , Humanos , Solidão/psicologia , Pessoa de Meia-Idade , Cuidados Intermitentes , Isolamento Social/psicologia
17.
Medicine (Baltimore) ; 99(21): e20225, 2020 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-32481294

RESUMO

We examined the process of obtaining informed consent (IC) for clinical research purposes in long-term care facilities (LTCFs) in Rhode Island (RI), USA. We assessed factors that were associated with resident ability to consent, such as Brief Interview for Mental Status scores. We used a self-administered questionnaire to further understand the effect of LTCF staff evaluation of ability to consent on residents' autonomy and control over their medical decision making.Observational clinical studyLong-term care setting.LTCF personnel provided us with residents' names, as well as their professional assessment of resident ability to consent. We used Brief Interview for Mental Status (BIMS) scores to assess the cognitive capacity of all residents to assess, and compare it to the assessment provided by LTCF personnel. A logistic regression analysis was performed to determine the relationship between LTCF assessment of resident ability to consent and BIMS score or confirmed diagnosis of dementia as seen from residents' medical charts. A self-administered questionnaire was filled out by the personnel of 10 LTCFs across RI, USA.LTCF personnel in 9 out of 10 recruited facilities reported that their assessment of resident ability to consent was based on subjective assessment of the resident as alert and oriented. There was a statistically significant relationship between the LTCF assessment of resident ability to consent and previously diagnosed dementia (OR: 0.211, 95% CI 0.107-0.415). Therefore, as BIMS scores increased, the likelihood that the resident would be deemed able to consent by LTCF personnel also increased. Furthermore, there was a statistically significant relationship between LTCF assessment of resident ability to consent and BIMS scores (OR: 1.430, 95% CI 1.274-1.605).There is no standard on obtaining IC for research studies conducted in LTCFs. We recommend that standardizing the process of obtaining IC in LTCFs can enhance the ability to perform research with LTCF residents.


Assuntos
Protocolos Clínicos/normas , Demência/diagnóstico , Consentimento Livre e Esclarecido/normas , Assistência de Longa Duração/ética , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisão Clínica/métodos , Demência/psicologia , Feminino , Humanos , Assistência de Longa Duração/psicologia , Assistência de Longa Duração/estatística & dados numéricos , Masculino , Testes de Estado Mental e Demência/normas , Pessoa de Meia-Idade , Rhode Island/epidemiologia , Inquéritos e Questionários
18.
Health Qual Life Outcomes ; 18(1): 178, 2020 Jun 11.
Artigo em Inglês | MEDLINE | ID: mdl-32527264

RESUMO

BACKGROUND: Assessing the cost-effectiveness of interventions for people with dementia, based on cost per quality-adjusted life years (QALYs) gained, requires that the measures used to derive QALYs are preference-based whilst also being valid, feasible to use, comprehensible and acceptable for people with dementia. The aim of this study was to assess the content and face validity of six preference-based measures (PBMs) within the context of dementia. METHODS: Qualitative focus groups and interviews were conducted with community-dwelling individuals with mild dementia and carers of people with dementia. After exploring participants' understanding of 'quality of life' (QoL), six PBMs were assessed for content and face validity: two measures assessing health-related QoL (EQ-5D-5L and AQoL-8D); two covering broader aspects of capability wellbeing and social care-related QoL (ICECAP-O and ASCOT); and two dementia-specific QoL measures (DEMQOL-U and AD-5D). A random mix of one health-related QoL measure, one wellbeing measure, and one dementia-specific measure was explored in each session. All sessions were audiotaped and transcribed verbatim. Data were analysed thematically. RESULTS: Nine individuals with mild dementia and 17 carers of people with dementia participated across 4 focus groups and 10 interviews. Participants perceived 9 broad QoL domains as relevant to them: Activity, Autonomy, Cognition, Communication, Coping, Emotions, End-of-Life, Physical Functioning, and Relationships. These domains had limited overlap with the content of the six PBMs. Assessment of face validity was summarized into eight themes: (1) ambiguous questions, (2) double -barrelled questions, (3) difficult/abstract questions, (4) judgemental/confronting questions, (5) lack of relevance and comprehensiveness, (6) response options, (7) layout/format and (8) proxy-response. There was no clear preference for one of the six measures explored; participants identified advantages and disadvantages across all measures. Although particularly designed for individuals with dementia, dementia-specific QoL measures were not always favoured over non-specific measures. CONCLUSION: Given the shortcomings of PBMs identified in this study, further empirical comparative analyses are necessary to guide the selection of PBMs for future dementia research.


Assuntos
Demência/psicologia , Qualidade de Vida/psicologia , Anos de Vida Ajustados por Qualidade de Vida , Inquéritos e Questionários/normas , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Demência/classificação , Emoções , Feminino , Grupos Focais , Humanos , Vida Independente/psicologia , Vida Independente/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Preferência do Paciente , Pesquisa Qualitativa , Reprodutibilidade dos Testes
20.
PLoS One ; 15(5): e0233450, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32437455

RESUMO

Quality of dementia care improves with a personalized approach to aged care, and knowledge of the disease process and unique care needs of residents with dementia. A personalized model of care can have a significant impact on the overall organizational culture in aged care homes. However, the dimensions of personalized aged care relating to dementia often remain under-managed. We aim to explore the factors that shape the dimensions of personalized dementia care in rural nursing homes using qualitative data of a mixed-method 'Harmony in the Bush' dementia study. The study participants included clinical managers, registered nurses, enrolled nurses and care workers from five rural aged care homes in Queensland and South Australia. One hundred and four staff participated in 65 semi-structured interviews and 20 focus groups at three phases: post-intervention, one-month follow-up and three-months follow-up. A multidimensional model of nursing home care quality developed by Rantz et al. (1998) was used in data coding and analysis of the factors. Three key themes including seven dimensions emerged from the findings: resident and family [resident and family centeredness, and assessment and care planning]; staff [staff education and training, staff-resident interaction and work-life balance]; and organization [leadership and organizational culture, and physical environment and safety]. A lack of consideration of family members views by management and staff, together with poorly integrated, holistic care plan, limited resources and absence of ongoing education for staff, resulted in an ineffective implementation of personalized dementia care. Understanding the dimensions and associated factors may assist in interpreting the multidimensional aspects of personalized approach in dementia care. Staff training on person-centered approach, assessment and plan, and building relationships among and between staff and residents are essential to improve the quality of care residents receive.


Assuntos
Demência/psicologia , Instituição de Longa Permanência para Idosos , Casas de Saúde , Qualidade de Vida/psicologia , Idoso , Atitude do Pessoal de Saúde , Austrália , Demência/enfermagem , Família , Feminino , Grupos Focais , Pessoal de Saúde , Humanos , Masculino , Cultura Organizacional , Medicina de Precisão , Qualidade da Assistência à Saúde
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