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The recent World Health Organization (WHO) blueprint for dementia research and Lancet Commission on ending stigma and discrimination in mental health has identified a gap around dementia-related measures of stigma and discrimination that can be used in different cultural, language and regional contexts.
We aimed to characterise experiences of discrimination, and report initial psychometric properties of a new tool to capture these experiences, among a global sample of people living with dementia.
We analysed data from 704 people living with dementia who took part in a global survey from 33 different countries and territories. Psychometric properties were examined, including internal consistency and construct validity.
A total of 83% of participants reported discrimination in one or more areas of life, and this was similar across WHO Regions. The exploratory factor analysis factor loadings and scree plot supported a unidimensional structure for the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia). The instrument demonstrated excellent internal consistency, with most of the construct validity hypotheses being confirmed and qualitative responses demonstrating face validity.
Our analyses suggest that the DISCUS-Dementia performs well with a global sample of people living with dementia. This scale can be integrated into large-scale studies to understand factors associated with stigma and discrimination. It can also provide an opportunity for a structured discussion around stigma and discrimination experiences important to people living with dementia, as well as planning psychosocial services and initiatives to reduce stigma and discrimination.
A core element of the Strengthening Responses to Dementia in Developing Countries (STRiDE) programme was to generate novel data on the prevalence, cost and impact of dementia in low- and middle-income countries, to build better health policy. Indonesia and South Africa are two middle-income countries in need of such data.
To present the STRiDE methodology and generate estimates of dementia prevalence in Indonesia and South Africa.
We conducted community-based, single-phase, cross-sectional studies in Indonesia and South Africa, randomly sampling participants aged 65 years or older in each country. Dementia prevalence rates for each country were generated by using the 10/66 short schedule and applying its diagnostic algorithm. Weighted estimates were calculated with national sociodemographic data.
Data were collected between September and December 2021 in 2110 people in Indonesia and 408 people in South Africa. The adjusted weighted dementia prevalence was 27.9% (95% CI 25.2–28.9) in Indonesia and 12.5% (95% CI 9.5–16.0) in South Africa. Our results indicate that there could be >4.2 million people in Indonesia and >450 000 people in South Africa who have dementia. Only five participants (0.2%) in Indonesia and two (0.5%) in South Africa had been previously diagnosed with dementia.
Despite prevalence estimates being high, formal diagnosis rates of dementia were very low across both countries (<1%). Further STRiDE investigations will provide indications of the impact and costs of dementia in these countries, but our results provide evidence that dementia needs to be prioritised within national health and social care policy agendas.
To examine the costs and cost-effectiveness of mirtazapine compared to placebo over 12-week follow-up.
Economic evaluation in a double-blind randomized controlled trial of mirtazapine vs. placebo.
Community settings and care homes in 26 UK centers.
People with probable or possible Alzheimer’s disease and agitation.
Primary outcome included incremental cost of participants’ health and social care per 6-point difference in CMAI score at 12 weeks. Secondary cost-utility analyses examined participants’ and unpaid carers’ gain in quality-adjusted life years (derived from EQ-5D-5L, DEMQOL-Proxy-U, and DEMQOL-U) from the health and social care and societal perspectives.
One hundred and two participants were allocated to each group; 81 mirtazapine and 90 placebo participants completed a 12-week assessment (87 and 95, respectively, completed a 6-week assessment). Mirtazapine and placebo groups did not differ on mean CMAI scores or health and social care costs over the study period, before or after adjustment for center and living arrangement (independent living/care home). On the primary outcome, neither mirtazapine nor placebo could be considered a cost-effective strategy with a high level of confidence. Groups did not differ in terms of participant self- or proxy-rated or carer self-rated quality of life scores, health and social care or societal costs, before or after adjustment.
On cost-effectiveness grounds, the use of mirtazapine cannot be recommended for agitated behaviors in people living with dementia. Effective and cost-effective medications for agitation in dementia remain to be identified in cases where non-pharmacological strategies for managing agitation have been unsuccessful.
Stigma and discrimination in relation to dementia has a range of implications for people living with dementia and their families worldwide, including help-seeking, quality of life, social rejection and isolation. Few studies consider the perceptions and stigma towards dementia from multiple perspectives, such as people living with dementia, carers, general public and health-care workers. South Africa has limited evidence on the stigmatisation of people living with dementia, with responses to people living with dementia being driven by poor understanding of the condition, cultural beliefs about causes and social interaction problems associated with memory and cognitive impairment. This study explored the experiences of stigma among people living with dementia and their carers through understanding their own knowledge, attitudes and beliefs as well as those of the public and health-care workers. Qualitative data (N = 52) were collected across two provinces and in four languages (English, Afrikaans, Sesotho and isiZulu), with semi-structured interviews and focus groups with the following stakeholder groups: people living with dementia and their carers, the general public and health-care workers. Inductive thematic analysis generated themes across stakeholder groups. The study shows that people living with dementia and carers experienced high levels of internalised stigma, related to negative public attitudes, which were associated with high levels of isolation, health system unpreparedness and limited access to support. The study contributes to the evidence base needed in South Africa but also extends its relevance by contributing to a growing global evidence base on stigma and dementia in low- and middle-income contexts.
This study aimed to understand stigma in relation to people living with dementia in São Paulo, Brazil. A critical narrative inquiry methodology was used. Home-based semi-structured interviews were conducted between January and March 2020 with six people living with dementia and 15 family carers. Data analysis was conducted using inductive and deductive techniques. The latter was informed by Link and Phelan's sociological theory of stigma. We found that dementia was commonly viewed by people living with dementia as part of ageing and carers reported low levels of knowledge and awareness about the condition. To avoid negative reactions from people, people living with dementia managed the negative views of dementia by minimising and normalising the condition, by expressing their ability to live an active life, and by emphasising the positive impacts of dementia in their lives. Fear of negative reactions appeared to lead to a selective disclosure of their diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, as well as to understand and validate their own caring experiences, rather than to cause any harm. In doing so, however, carers ended up depersonalising and infantilising people living with dementia, underestimating their capacities, demanding ‘obedience’ and restricting the person's freedom. There is a need to increase awareness about dementia and to provide support and training on person-centred and ethical care for carers in Brazil.
Pakistan is a lower middle-income country, which to date has had very little research and policy making to address the challenge of dementia. This study aims to explore the perceptions of dementia in a group of Pakistani adults. A series of focus group discussions were completed during 2017 with men and women in two metropolitan centres in Pakistan (Lahore and Karachi) (N = 40). Two vignettes, depicting someone with mild dementia and someone with severe dementia, were used to facilitate discussions. An induction-led thematic analysis was completed. Five themes were identified, reflecting (a) dementia awareness, (b) responsibility, (c) barriers to health care, (d) identified support needs, and (e) religion. Most participants had little awareness and knowledge about dementia, commonly understood to be a disease of forgetting or just normal ageing. Thus, there is an urgent need of a nation-wide campaign to raise dementia awareness in Pakistan, though this needs to be accompanied by improved, accessible health and social care services.
Over 400,000 people live in care home settings in the UK. One way of understanding and improving the quality of care provided is by measuring and understanding the quality of life (QoL) of those living in care homes. This review aimed to identify and examine the psychometric properties including feasibility of use of dementia-specific QoL measures developed or validated for use in care settings.
Instruments were identified using four electronic databases (PubMed, PsycINFO, Web of Science, and CINAHL) and lateral search techniques. Searches were conducted in January 2017. Studies which reported on the development and/or validation of dementia specific QoL instruments for use in care settings written in English were eligible for inclusion. The methodological quality of the studies was assessed using the COSMIN checklist. Feasibility was assessed using a checklist developed specifically for the review.
Six hundred and sixteen articles were identified in the initial search. After de-duplication, screening and further lateral searches were performed, 25 studies reporting on 9 dementia-specific QoL instruments for use in care home settings were included in the review. Limited evidence was available on the psychometric properties of many instruments identified. Higher-quality instruments were not easily accessible or had low feasibility of use.
Few high-quality instruments of QoL validated for use in care home settings are readily or freely available. This review highlights the need to develop a well-validated measure of QoL for use within care homes that is also feasible and accessible.
Non-pharmacological interventions may have a role in both the prevention and slowing down of disease progression in Alzheimer's disease (AD). The role of exercise in disease prevention, for example, has been extensively evaluated in large epidemiological studies. Much less is known about the potential benefit of exercise in patients already diagnosed with AD. It was therefore the aim of this systematic review to assess the effectiveness of exercise in attenuating cognitive decline within AD.
A systematic review was conducted statistically accompanied by a meta-analysis. Publications between January 1991 and October 2012 were identified by searching the electronic databases PubMed, Science Direct, Web of Knowledge, and PsychINFO. Selected studies required AD patients to take part in an exercise-based randomized controlled trial (RCT) and have a cognitive outcome measure.
Six RCTs were identified that exclusively considered the effect of exercise in AD patients. Exercise generally had a positive effect on rate of cognitive decline in AD. A meta-analysis found that exercise interventions have a positive effect on global cognitive function, 0.75 (95% CI = 0.32–1.17).
From the six studies reviewed, the evidence suggests that exercise can have a positive effect on rate of cognitive decline in AD. However, the variation between study designs makes conclusions regarding the optimum intervention on cognitive outcome in AD difficult. Well-designed and powered RCTs are still needed to ascertain the efficacy of exercise in slowing down cognitive impairment in AD patients. However, a positive initial indication for exercise efficacy justifies such efforts.
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