Resilience in caregivers of people with mild-to-moderate dementia: findings from the IDEAL cohort.

OBJECTIVES: A novel model of resilience was tested in caregivers of people with mild-to-moderate dementia and was extended to explore whether including self-efficacy, optimism, and self-esteem improved its predictive value. DESIGN: Cross-sectional. SETTING: Data from the IDEAL cohort were used. PARTICIPANTS: The study comprised 1222 caregivers of people with dementia. MEASUREMENTS: A composite resilience score was calculated from five measures. Multivariable regressions were used to investigate factors associated with resilience. RESULTS: Greater resilience was associated with being older, being male, and caregiving for older people with dementia. Greater resilience was also observed when people with dementia had fewer functional difficulties and/or fewer neuropsychiatric symptoms, there was a stronger dyadic relationship, and the caregiver had fewer social restrictions, less neuroticism, and greater perceived competence. Surprisingly, caregiver self-efficacy, optimism, and self-esteem were unrelated to resilience. CONCLUSION: Caregivers of people with mild-to-moderate dementia generally scored well for resilience. Resilience was associated with both the personal characteristics of caregivers and level of care need among people with dementia. Future work is needed to determine whether the caregivers in this cohort appeared resilient because the care recipients had relatively low care needs and consequently placed fewer demands on caregiver well-being than would be the case where dementia is more advanced.

Dyadic influences on awareness of condition in people with dementia: findings from the IDEAL cohort.

Introduction: The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed.

An Innovative Personalised Management Program for Older Adults with Parkinson's Disease: New Concepts and Future Directions.

INTRODUCTION: Parkinson's disease is a heterogeneous clinical syndrome. Parkinson's disease in older persons presents with a diverse array of clinical manifestations leading to unique care needs. This raises the need for the healthcare community to proactively address the care needs of older persons with Parkinson's disease. Though it is tempting to categorise different phenotypes of Parkinson's disease, a strong evidence based for the same is lacking. There is considerable literature describing the varying clinical manifestations in old age. This article aims to review the literature looking for strategies in personalising the management of an older person with Parkinson's disease.

The relationship between perceived functional difficulties and the ability to live well with mild-to-moderate dementia: Findings from the IDEAL programme.

OBJECTIVES: The objectives of the study are to investigate how different levels of functional ability relate to quality of life, well-being, and satisfaction with life, conceptualised as reflecting capability to "live well" in people with dementia. METHODS/DESIGN: Participants were 1496 people with mild-to-moderate dementia and 1188 informants who completed baseline assessments in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study. Total self-rated and informant-rated scores on the Functional Activities Questionnaire were split into six ability levels to monitor how poorer functioning impacts the ability to live well. We also investigated the potential influence of sociodemographic and diagnostic variables, depression, cognition, and carer stress. RESULTS: Multivariate multiple regression models found that people with dementia who had the greatest functional impairment according to self-ratings and informant ratings had poorer living well scores than those with the least functional impairment. Sociodemographic and diagnostic factors and cognition had little impact on effect sizes. For self-ratings, depression attenuated the relationship between functional ability and living well, whereas carer stress attenuated informant ratings. CONCLUSIONS: People with dementia with the least functional impairments had greater capability to live well than those with the most functional impairment. Even subtle perceived difficulties in functional ability had a detrimental effect on the ability of people with dementia to live well. Depression in people with dementia and carer stress in informants influenced these associations, and therefore, these factors should be routinely included in future research studies and clinical assessments.

Relationship between Mastery and Caregiving Competence in Protecting against Burden, Anxiety and Depression among Caregivers of Frail Older Adults.

OBJECTIVE: Studies suggest the protective effect of mastery and caregiving competence against psychological stressors of caregiving in the context of dementia, although the interplay between the two with caregiver outcomes is not well understood. This study examines the independent and moderating impact of mastery and caregiving competence on burden, anxiety and depression among caregivers of older adults with frailty-related care needs. DESIGN, SETTING AND PARTICIPANTS: This is a cross-sectional study of 274 older adults-family caregiver dyads from a hospital in Singapore. Mean ages of the older adults and their caregivers were 85 and 59 years respectively. MEASUREMENTS: We performed hierarchical linear regression models to examine the independent influence of mastery and caregiving competence on caregiver burden, anxiety and depression. We also examined the interaction effect between mastery and caregiving competence for each outcome. RESULTS: Mastery and caregiving competence were independently negatively associated with caregiver burden, anxiety and depression. Mastery explained more variance than caregiving competence and had a stronger correlation with all outcomes. There was a statistically significant interaction between mastery and caregiving competence for depression (interaction term beta=.14, p<0.01), but not burden and anxiety. High levels of mastery are associated with less depression. particularly among caregivers with below-average levels of caregiving competence. Likewise, high levels of caregiving competence are associated with less depression. particularly among caregivers with below-average levels of mastery. CONCLUSION: Our findings suggest potential benefits adressing targeted interventions for mastery and caregiving competence of caregivers to older adults as they independently influence caregiver outcomes and moderate each other's effect on depression. Mastery-based interventions should be incorporated into current caregiver training which traditionally has focused on caregiver competence alone.

A revised interview for deterioration in daily living activities in dementia reveals the relationship between social activities and well-being.

BACKGROUND: The ability to perform instrumental activities of daily living deteriorates early in dementia and affects people with dementia and their carers. However, little is known about individual instrumental activities of daily living impairments. This study therefore investigated instrumental activities of daily living deficits in mild dementia by exploring the relationship between instrumental activities of daily living initiative and performance and general cognition, people with dementia quality of life and carer stress. Moreover, this study explored the contribution of social instrumental activities of daily livings, which to date have received little or no attention. METHODS: Twenty carers were administered a revised Interview for Deterioration for Daily Living Activities in Dementia and measures of carer stress (General Health Questionnaire-12) and quality of life in dementia (Quality of Life in Alzheimer's Disease). The people with dementia completed measures of general cognition (Mini-Mental State Examination and Montreal Cognitive Assessment). Data were analysed using frequency and bivariate correlation analyses and basic thematic analysis was employed to the qualitative data on carer stress. RESULTS: Carer interviews showed that instrumental activities of daily living impairments were associated more with performance than with initiative deficits. Increased social isolation and reluctance to engage in hobbies were particularly stressful to carers and impacted negatively on the people with dementia quality of life, yet were not reported as critical in the qualitative assessment. CONCLUSIONS: This study shows that people with mild dementia are impaired to different degrees on their initiative and performance of instrumental activities of daily livings and that impairments relating to social activities particularly relate to well-being. The revised Interview for Deterioration for Daily Living Activities in Dementia with its social instrumental activities of daily livings can help shift the focus of interventions to address those activities that are frequently impaired in mild dementia and relate to people with dementia and carer well-being.

Caregiver distress in dementia in rural Victoria.

AIM: The aim of this study was to explore the levels of stress, anxiety and depression of informal carers caring for someone with dementia in a rural setting. METHODS: Carers of people with dementia were recruited to complete a survey that incorporated the Depression Anxiety Stress Scales (DASS) to measure carer emotional well-being. The survey also included the Neuropsychiatric Inventory Questionnaire (NPI-Q), which assesses the presence and severity of behavioural and psychological symptoms of dementia (BPSD) of care recipients and their effects on the carer. RESULTS: A total of 39 carers completed surveys. Almost half of the respondents reported levels of stress and depression in the moderate to severe range as measured on the DASS. BPSD exhibited by care recipients, such as agitation, anxiety, aggression and nocturnal disturbance, were associated with the level of stress reported by the carer as measured with the NPI-Q. CONCLUSION: Caring for care recipients who exhibit BPSD predisposes carers in rural areas to high levels of stress and depression. Regular, periodic screening of carers is required to detect abnormal levels of stress, depression and anxiety in order to enable timely introduction of interventions.

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.

Caregiver burden and psychoeducational interventions in Alzheimer's disease: a review.

BACKGROUND: Caring for a patient with Alzheimer's disease (AD) is associated with poor quality of life and deteriorating health for the caregiver. METHODS: This comprehensive review was performed to investigate the current literature on caregiver burden, factors affecting caregiver burden and the effectiveness of different types of intervention. RESULTS: Successful psychoeducational interventions for caregivers have included provision of information about AD, care planning, advice about patient management and the importance of self-care, skills training to aid patient management, stress management training, and problem-solving and decision-making guidance. CONCLUSION: Interventions that are individually tailored to the caregiver are particularly effective at reducing caregiver burden and should be further investigated. The use of effective pharmacological treatment for the improvement and/or stabilisation of AD symptoms in the patient is also likely to improve caregiver burden.

A Post-Discharge Service for Brain Injury Patients in Hong Kong / 中国康复医学杂志

To establish an affordable and easily accessible post-discharge telephone follow-up service for people with brain injuries and their caregivers,and thus to provide an evidence base for developing cost-effective continuous care,region-wide.Method:Thirty-five adult patients with brain injuries and 26 caregivers were recruited from Neurosurgical Unit at QueenMary Hospital in this study.Participants were administered a structured telephone interview at the fourth week post-discharge,and again at the twelfth week post-discharge.Patients and caregivers at risk of poor adjustment were referred for further medical consultation or psychological intervention.Patients' physical and cognitive functioning were investigated while both patients and caregivers' emotional functioning and perceived socialsupport were explored.Satisfaction of the current service provided was also examined.Result:Majority of patients reported significant improvement in physical condition.A sizable number of patientsexperienced cognitive difficulties and reported insufficient psychosocial support received following discharge fromhospital.Majority of caregivers reported compromising health,emotional and social functioning in caregiving.Bothpatients and caregivers reported satisfaction with the service with caregivers reported higher satisfaction.Conclusion:Findings from current study showed that both patients of brain injuries and caregivers benefited from the post-discharge telephone follow-up service.Both of them agreed that such service helped to identify peopleat risk of poor adjustment,provide timely advice and emotional support.Our findings also indicated that caregiving significantly impairs caregivers' physical,emotional,and social functioning,suggesting a need to offer them advice on care skills,role or living adjustments,and stress management.