Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children.

The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences.

Is delirium being detected in emergency?

OBJECTIVE: To report on the use of Delirium Care Pathways to screen for and recognise delirium by Aged Care Services in Emergency Teams (ASETs) at five metropolitan hospitals in New South Wales, Australia. Knowledge of delirium and the use of Delirium Care Pathways are vital to ensure that older people presenting with delirium receive best practice care. METHODS: An audit of 205 randomly selected medical records of clients over 65 years presenting to an ASET was conducted. RESULTS: Delirium was recorded in the medical records notes of four clients (2%). However, the auditors identified another 27 clients with symptoms of delirium. CONCLUSIONS: Delirium is still frequently undiagnosed and misdiagnosed in older people presenting to emergency departments. This indicates a need for further education and professional development for and by health-care practitioners. Only with greater awareness of delirium will the care and health outcomes of older adults presenting with delirium in acute care settings improve.

Protocol for REducing Anti-Psychotic use in residential care-Huntington Disease (REAP-HD): a pilot cluster randomised controlled trial of a multifaceted intervention for health professionals.

INTRODUCTION: Antipsychotics are commonly used for management of behavioural symptoms in dementia, among people in residential care. This continues to occur despite their modest effectiveness, potential harms including increased risk of death and stroke, and absence of detrimental effect when people with dementia were randomised to antipsychotic withdrawal. This study aims to test the hypothesis that the multifaceted REducing Anti-Psychotic use in residential care-Huntington Disease (REAP-HD) programme is more effective than standard staff education (SSE) in reducing antipsychotic use for people with HD in residential care facilities (RCF). METHODS AND ANALYSIS: this is a cluster randomised controlled trial with blinded outcome assessment. The study population is healthcare professionals looking after people with HD in individual RCF, in the state of New South Wales. Each RCF will be centrally randomised to the REAP-HD programme or the comparator, SSE. Blinded outcome assessment will be performed by examining drug charts and using the Neuropsychiatric Inventory-Q (NPI-Q). Primary outcome is the proportion of people with HD who have had a reduction in antipsychotic use 4 months after the intervention. Secondary outcome measures are (1) change in severity of behavioural symptoms, as measured by the NPI-Q at 4 months (to ensure antipsychotic reduction has not lead to worsening behavioural symptoms), and (2) proportion of people with HD who have had a reduction in antipsychotic dosage at 4 months for each strategy, compared to 4 months prior to enrolment (to capture the possibility that both arms reduced antipsychotic use). Analysis will be by Intention-To-Treat and take into account the clustering. Recruitment is ongoing, as of July 2014. ETHICS AND DISSEMINATION: This protocol has been approved by the Western Sydney Local Health District Human Research Ethics Committee, trial registration ACTRN12614000083695. Study results will be disseminated through peer-reviewed publication in an anonymous manner. TRIAL REGISTRATION NUMBER: ACTRN12614000083695, the Australian New Zealand Clinical Trials Registry.

Cultural differences are reflected in variables associated with carer burden in FTD: A comparison study between India and Australia / Diferenças culturais se refletem nas variáveis associadas à sobrecarga do cuidador em DFT: um estudo comparativo entre Índia e Austrália

ABSTRACT There is great need to understand variables behind carer burden, especially in FTD. Carer burden is a complex construct, and its factors are likely to vary depending on the type of dementia, carer characteristics and cultural background. Objective: The present study aimed to compare profiles and severity of carer burden, depression, anxiety and stress in carers of FTD patients in India in comparison to Australia; to investigate which carer variables are associated with carer burden in each country. Methods: Data of 138 participants (69 dyads of carers-patients) from India and Australia (India, n=31; Australia, n=38). Carer burden was assessed with the short Zarit Burden Inventory; carer depression, anxiety and stress were measured with the Depression, Anxiety and Stress-21. Dementia severity was determined with the Frontotemporal Dementia Rating Scale (FTD-FRS), and a range of demographic variables regarding the carer and patient were also obtained. Results: Overall, levels of carer burden were not significantly different across India and Australia, despite more hours delivering care and higher dementia severity in India. Variables associated with burden, however, differed between countries, with carer depression, anxiety and stress strongly associated with burden in India. By contrast, depression, stress, and dementia severity were associated with burden in Australia. Conclusion: This study demonstrated that variables associated with carer burden in FTD differ between cultures. Consequently, cultural considerations should be taken into account when planning for interventions to reduce burden. This study suggests that addressing carers' skills and coping mechanisms are likely to result in more efficacious outcomes than targeting patient symptoms alone.

RESUMO Há uma grande necessidade de se entender as variáveis por trás da sobrecarga do cuidador, especialmente em DFT. A sobrecarga é um construto complexo e os fatores provavelmente estão ligados ao tipo de demência, características do cuidador e origens culturais. Objetivo: O presente estudo objetivou comparar perfis e gravidade da sobrecarga, depressão, ansiedade e estresse nos cuidadores dos pacientes com DFT da Índia em comparação aos da Austrália; investigar que variáveis do cuidador estão associadas à sobrecarga em cada país. Métodos: Dados de 138 participantes (69 pares cuidadores-pacientes) da Índia e Austrália (Índia, n=31) e Austrália (n=38). A sobrecarga do cuidador foi avaliada através da versão curta do Inventário de Sobrecarga de Zarit; depressão, ansiedade e estresse do cuidador através com o Depression, Anxiety and Stress-21. A gravidade da demência foi determinada com a Frontotemporal Dementia Rating Scale (FTD-FRS), e uma gama de variáveis demográficas do cuidador e do paciente foram também obtidas. Resultados: De modo geral os níveis de sobrecarga do cuidador não foram significativamente diferentes entre Índia e Austrália, apesar do maior tempo despendido no cuidado e gravidade da demência na Índia. As variáveis associadas à sobrecarga, todavia, diferiram entre os países, com depressão do cuidador, ansiedade e estresse fortemente associados com sobrecarga na Índia. Em contraste, depressão, estresse e gravidade da demência foram associados à sobrecarga na Austrália. Conclusão: Este estudo demonstrou que variáveis associadas à sobrecarga do cuidador na DFT difere entre culturas. Consequentemente, aspectos culturais devem ser levados em consideração quando se planeja intervenções para redução da sobrecarga. Este estudo sugere que programas direcionados às habilidades e meios de se lidar com a situação dos cuidadores são provavelmente mais eficazes do que aqueles só aos sintomas do paciente.

Cultural differences are reflected in variables associated with carer burden in FTD: a comparison study between India and Australia.

There is great need to understand variables behind carer burden, especially in FTD. Carer burden is a complex construct, and its factors are likely to vary depending on the type of dementia, carer characteristics and cultural background. OBJECTIVE: The present study aimed to compare profiles and severity of carer burden, depression, anxiety and stress in carers of FTD patients in India in comparison to Australia; to investigate which carer variables are associated with carer burden in each country. METHODS: Data of 138 participants (69 dyads of carers-patients) from India and Australia (India, n=31; Australia, n=38). Carer burden was assessed with the short Zarit Burden Inventory; carer depression, anxiety and stress were measured with the Depression, Anxiety and Stress-21. Dementia severity was determined with the Frontotemporal Dementia Rating Scale (FTD-FRS), and a range of demographic variables regarding the carer and patient were also obtained. RESULTS: Overall, levels of carer burden were not significantly different across India and Australia, despite more hours delivering care and higher dementia severity in India. Variables associated with burden, however, differed between countries, with carer depression, anxiety and stress strongly associated with burden in India. By contrast, depression, stress, and dementia severity were associated with burden in Australia. CONCLUSION: This study demonstrated that variables associated with carer burden in FTD differ between cultures. Consequently, cultural considerations should be taken into account when planning for interventions to reduce burden. This study suggests that addressing carers' skills and coping mechanisms are likely to result in more efficacious outcomes than targeting patient symptoms alone.

Há uma grande necessidade de se entender as variáveis por trás da sobrecarga do cuidador, especialmente em DFT. A sobrecarga é um construto complexo e os fatores provavelmente estão ligados ao tipo de demência, características do cuidador e origens culturais. OBJETIVO: O presente estudo objetivou comparar perfis e gravidade da sobrecarga, depressão, ansiedade e estresse nos cuidadores dos pacientes com DFT da Índia em comparação aos da Austrália; investigar que variáveis do cuidador estão associadas à sobrecarga em cada país. MÉTODOS: Dados de 138 participantes (69 pares cuidadores-pacientes) da Índia e Austrália (Índia, n=31) e Austrália (n=38). A sobrecarga do cuidador foi avaliada através da versão curta do Inventário de Sobrecarga de Zarit; depressão, ansiedade e estresse do cuidador através com o Depression, Anxiety and Stress-21. A gravidade da demência foi determinada com a Frontotemporal Dementia Rating Scale (FTD-FRS), e uma gama de variáveis demográficas do cuidador e do paciente foram também obtidas. RESULTADOS: De modo geral os níveis de sobrecarga do cuidador não foram significativamente diferentes entre Índia e Austrália, apesar do maior tempo despendido no cuidado e gravidade da demência na Índia. As variáveis associadas à sobrecarga, todavia, diferiram entre os países, com depressão do cuidador, ansiedade e estresse fortemente associados com sobrecarga na Índia. Em contraste, depressão, estresse e gravidade da demência foram associados à sobrecarga na Austrália. CONCLUSÃO: Este estudo demonstrou que variáveis associadas à sobrecarga do cuidador na DFT difere entre culturas. Consequentemente, aspectos culturais devem ser levados em consideração quando se planeja intervenções para redução da sobrecarga. Este estudo sugere que programas direcionados às habilidades e meios de se lidar com a situação dos cuidadores são provavelmente mais eficazes do que aqueles só aos sintomas do paciente.