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Dementia Care: Voices from Under-Represented Groups

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Health Care Sciences & Services".

Deadline for manuscript submissions: closed (30 June 2023) | Viewed by 4431

Special Issue Editors


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Guest Editor
Department of Geriatrics, University of Lille, 59000 Lille, France
Interests: cognitive decline in older people

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Guest Editor
Memory and Neuropsychiatric Clinic (CMYN), Neurology Department, University of Chile, Santiago 8330014, Chile
Interests: dementia; neuropsychiatry; memory; brain; neurodegeneration

Special Issue Information

Dear Colleagues,

Dementia is a global health concern. In 2020, 55 million people were recorded as living with dementia, and these figures are expected to reach 139 million by 2050. 

In 2012, WHO recommended the development of a Dementia Plan to face this challenge.  Thus far, however, only 32 countries have dedicated dementia plans. In consideration of the huge demographic, socio-economic, cultural and health care organizations between countries, strategies to provide care for dementia are developing worldwide. 

Currently, 60% of people with dementia live in low- and middle-income countries (LMIC) and this is estimated to reach 71% by 2050. Most LMIC face great challenges in providing adequate diagnosis, care and support for people with dementia and their families. These challenges include limited public knowledge about dementia symptoms, diagnostic stigma and low diagnostic rates, as well as financial constraints concomitant with demands from other major social and public health problems. and lack of research funding. 

Without or with dementia plans or specific public policies, many countries have adopted different strategies or facilities for dementia. These facilities are implemented at different socioeconomic and political levels and in different areas of the healthcare system. 

There is a lack of evidence of health or social facilities for dementia and public policies for dementia of LMIC or economy in transition. 

Even in countries with an established dementia care plan, some minority groups are often neglected. For example, migrants are particularly vulnerable to dementia due to the psychological trauma of displacement and their social isolation in a new country. Most of them might have low literacy, brain injuries, limited knowledge of dementia symptoms and internalized diagnostic stigma from their original countries. However, only 25% of the national plans explicitly mentioned this group. Another striking example is that of people with intellectual disabilities. Despite their increased risk of early onset dementia, particularly in people with Down syndrome, the literature regarding the efficacy of post-diagnostic support remains poor, and guidelines are lacking.  

In this Special Issue, we would like to give a voice to those groups who are neglected in the usual national care plan and research. 

We call for papers on dementia care (from prevention to treatment, from clinical care to epidemiological or economic analysis) in LMICs and in minority groups in all countries.

Dr. Yaohua Chen
Prof. Dr. Andrea Slachevsky
Guest Editors

Manuscript Submission Information

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Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • dementia
  • care plan
  • prevention
  • risk factors
  • lMIC
  • equity
  • underrepresented populations
  • intellectual disabilities
  • migrants
  • public policies

Published Papers (2 papers)

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Research

14 pages, 738 KiB  
Article
Impact of COVID-19 Pandemic on Caregivers of People with an Intellectual Disability, in Comparison to Carers of Those with Other Disabilities and with Mental Health Issues: A Multicountry Study
by Andrew Wormald, Eimear McGlinchey, Maureen D’Eath, Iracema Leroi, Brian Lawlor, Philip McCallion, Mary McCarron, Roger O’Sullivan and Yaohua Chen
Int. J. Environ. Res. Public Health 2023, 20(4), 3256; https://doi.org/10.3390/ijerph20043256 - 13 Feb 2023
Cited by 5 | Viewed by 2378
Abstract
Carers supporting people with an intellectual disability often rely on others to manage the burden of care. This research aims to compare the differences between carer groups and understand the predictors of loneliness changes and burden for carers of people with an intellectual [...] Read more.
Carers supporting people with an intellectual disability often rely on others to manage the burden of care. This research aims to compare the differences between carer groups and understand the predictors of loneliness changes and burden for carers of people with an intellectual disability. Data from the international CLIC study were analysed. In total, 3930 carers responded from four groups; people who care for those with mental health difficulties (n = 491), dementia (n = 1888), physical disabilities (n = 1147), and Intellectual disabilities (n = 404). Cross tabulation and the chi-squared test were used to compare group compositions and binary logistic regression to model predictors within the intellectual disability group. A total of 65% of those caring for people with an intellectual disability experienced increased burden, and 35% of carers of people with an intellectual disability and another condition experienced more severe loneliness. Becoming severely lonely was predicted by feeling burdened by caring (AOR, 15.89) and worsening mental health (AOR, 2.13) Feeling burden was predicted by being aged between 35 and 44 (AOR, 4.24), poor mental health (AOR, 3.51), and feelings of severe loneliness prior to the pandemic (AOR, 2.45). These findings demonstrate that those who were already struggling with caring experienced the greatest difficulties during the COVID-19 lockdowns. Full article
(This article belongs to the Special Issue Dementia Care: Voices from Under-Represented Groups)
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12 pages, 514 KiB  
Article
Behavioral and Psychological Symptoms of Dementia: Prevalence, Symptom Severity, and Caregiver Distress in South-Western Uganda—A Quantitative Cross-Sectional Study
by Ronald Kamoga, Vincent Mubangizi, Judith Owokuhaisa, Moses Muwanguzi, Sylivia Natakunda and Godfrey Zari Rukundo
Int. J. Environ. Res. Public Health 2023, 20(3), 2336; https://doi.org/10.3390/ijerph20032336 - 28 Jan 2023
Cited by 1 | Viewed by 1736
Abstract
The purpose of the study was to investigate behavioral and psychological symptoms (BPSD) prevalence, severity, and distress experienced by caregivers of people living with dementia (PLWD). A cross-sectional, population-based study was conducted in a rural area in southwestern Uganda. A Neuropsychiatric Inventory Questionnaire [...] Read more.
The purpose of the study was to investigate behavioral and psychological symptoms (BPSD) prevalence, severity, and distress experienced by caregivers of people living with dementia (PLWD). A cross-sectional, population-based study was conducted in a rural area in southwestern Uganda. A Neuropsychiatric Inventory Questionnaire (NPI-Q) was used to determine the presence of BPSD as perceived by caregivers of PLWD. We carried out both descriptive and inferential data analysis. A total of 175 caregivers of PLWD were enrolled in this study. Among PLWD, 99% had presented BPSD in the past month. Hallucinations (75%) and dysphoria/depression (81%) were the two BPSD that occurred most frequently. Most participants (70%) stated that PLWD experienced hallucinations of significant severity. Aberrant motor activity was reported by 60% of the participants as the type of BPSD that caused severe distress. There was a high positive correlation (0.82) between the total severity score and total distress scores. Interventions aimed at addressing dysphoria and hallucinations may be essential for the reduction of caregiver distress. These findings point to the need for promoting early screening for BPSDs and the provision of support to caregivers. Full article
(This article belongs to the Special Issue Dementia Care: Voices from Under-Represented Groups)
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