Experiences of caregivers of people with dementia in Indonesia: A focus group study.

BACKGROUND: Many people with dementia are reliant on family caregivers to provide daily care to maintain quality of life and dignity. As a result, caregivers can experience increased burden, poorer health outcomes and increased stigma. To date, the experiences of caregivers of people with dementia has not been explored within an Indonesian context. AIMS: This study aims to understand the experience of caregivers of people with dementia in Indonesia and better understanding of the stigma associated with dementia. MATERIALS AND METHODS: This qualitative study is embedded within the Strengthening Responses to Dementia in Developing Countries project. Focus Group Discussions were held with dementia caregivers residing in Jakarta, Indonesia. Inductive thematic analysis was used to analyse the transcripts. RESULTS: Nineteen caregivers of people with dementia participated in the Focus Group Discussions. Themes identified included: (1) Understanding of dementia, (2) Reaction to care, and (3) Seeking a diagnosis. DISCUSSION: A perceived lack of understanding about dementia amongst the caregivers, ultimately shaped caregivers experience of care. This included negative reactions to care leading to internalised stigma (e.g., fear and shame). Misconceptions that dementia was due to spiritual and mystical reasons were particularly stigmatising. CONCLUSION: In Indonesia, families are providing care to people with dementia in an environment in which there is a lack of understanding that can lead to misdiagnosis, feelings of fear and shame. Efforts to raise address stigma and misunderstanding among the general public and healthcare professionals could be of particular value to support people with dementia and reduce the fear and shame that they can experience.

Factors associated with odour identification in older Indonesian and white Australian adults.

BACKGROUND AND AIMS: Among older adults, olfactory dysfunction is associated with cognitive impairment, lower quality of life, and increased mortality. While age is a risk factor for olfactory dysfunction, other risk factors are less well understood, and may vary between ethno-regional groups. This study investigated how associations between odour identification (OI) and various risk factors, as well as cognition and language ability, differed or were similar in two distinct ethno-regional groups of older adults. METHODS: This cross-sectional study used data from two cohorts: 470 Indonesians (aged 67.4 ± 7.4 years) and 819 white Australians (aged 78.7 ± 4.8 years). Univariate and multivariate analyses explored whether OI test scores were associated with age, sex, education, cholesterol levels, apolipoprotein E ε4 status, smoking, diabetes, hypertension and depression scale scores, or with Mini-Mental State Examination (MMSE) and language test performance. RESULTS: Univariate analyses identified some factors associated with OI scores in both Indonesians and white Australians, including older age and smoking with lower scores, and MMSE and language test performance with higher scores. Multivariate analyses yielded different and mutually exclusive patterns of associations in the two ethno-regional groups, with language test scores significantly associated with higher OI scores in Indonesians, and age, being male, smoking, having diabetes and higher depression scale scores significantly associated with lower OI scores in white Australians. CONCLUSION: Ethno-regional differences may need consideration in the attempt to fully understand associations between OI and negative outcomes like dementia and mortality, and interventions for olfactory dysfunction might need to be tailored to specific ethno-regional groups. However, the difference in mean age between cohorts is a limitation of this study, and future studies should aim to compare populations with similar age distributions.

Sleep symptoms in syndromes of frontotemporal dementia and Alzheimer's disease: A proof-of-principle behavioural study.

Sleep disruption is a key clinical issue in the dementias but the sleep phenotypes of these diseases remain poorly characterised. Here we addressed this issue in a proof-of-principle study of 67 patients representing major syndromes of frontotemporal dementia (FTD) and Alzheimer's disease (AD), in relation to 25 healthy older individuals. We collected reports on clinically-relevant sleep characteristics - time spent overnight in bed, sleep quality, excessive daytime somnolence and disruptive sleep events. Difficulty falling or staying asleep at night and excessive daytime somnolence were significantly more frequently reported for patients with both FTD and AD than healthy controls. On average, patients with FTD and AD retired earlier and patients with AD spent significantly longer in bed overnight than did healthy controls. Excessive daytime somnolence was significantly more frequent in the FTD group than the AD group; AD syndromic subgroups showed similar sleep symptom profiles while FTD subgroups showed more variable profiles. Sleep disturbance is a significant clinical issue in major FTD and AD variant syndromes and may be even more salient in FTD than AD. These preliminary findings warrant further systematic investigation with electrophysiological and neuroanatomical correlation in major proteinopathies.