Special Issue "Health Inequalities in Dementia Care"

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: 31 October 2021.

Special Issue Editors

Dr. Clarissa Giebel
E-Mail Website
Chief Guest Editor
Department of Primary Care & Mental Health, University of Liverpool, Liverpool L3 5DA, UK
Interests: dementia; health inequalities; everyday functioning; LMICs; service utilisation
Dr. Kerry Hanna
E-Mail Website
Assistant Guest Editor
Department of Primary Care & Mental Health, University of Liverpool, Liverpool L3 5DA, UK
Interests: neurological rehabilitation; acquired brain injury; health inequalities; vision impairment; neuro-ophthalmology

Special Issue Information

Dear Colleagues,

Over 50 million people worldwide are living with dementia, with numbers growing steadily. However, not everyone receives a diagnosis, and those with a diagnosis might struggle to access some types of support, ranging from peer support groups, day care centres, respite, and paid home care, to care homes. Burgeoning evidence suggests that people’s backgrounds are linked to what they can access. Some barriers to receiving a diagnosis or the right level of care at the right time might include ethnic background, socio-economic status, education, or where people live—in rural or urban regions. Moreover, there might be further inequalities when looking at low- and middle-income countries.

This Special Issue on “Health Inequalities in Dementia Care” welcomes submissions in this field, to cover the broad spectrum of inequalities. We are interested in qualitative and quantitative research and look forward to receiving a wide range of submissions.

Dr. Clarissa Giebel
Dr. Kerry Hanna
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All papers will be peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

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 semimonthly 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 2300 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
  • health inequalities
  • service utilisation
  • socio-economic status
  • rural
  • ethnicity
  • care

Published Papers (5 papers)

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Research

Article
Genetic and Environmental Contributors to Neurodegeneration: An Exploration of the Effects of Alcohol on Clinical Features of Huntington’s Disease Using the Enroll-HD Global Platform
Int. J. Environ. Res. Public Health 2021, 18(10), 5113; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18105113 - 12 May 2021
Viewed by 517
Abstract
Huntington’s disease (HD) is a neurodegenerative dementia with a well recognised genetic cause. Alcohol misuse is a major environmental factor relevant to numerous neurological presentations, including HD. We explored the effects of alcohol intake on clinical features of HD by means of data [...] Read more.
Huntington’s disease (HD) is a neurodegenerative dementia with a well recognised genetic cause. Alcohol misuse is a major environmental factor relevant to numerous neurological presentations, including HD. We explored the effects of alcohol intake on clinical features of HD by means of data from the Enroll-HD, which is a global registry study. A retrospective observational study making use of the Enroll-HD periodic dataset up to 2020 (in accordance with the Enroll-HD guidelines, encompassing 16,120 subjects with the HD gene (CAG expansion > 36), was carried out. This included 180 sites in 21 countries. The study looked at the association of alcohol use with the clinical presentation of HD, specifically looking into the age of first symptoms and HD severity. We also describe a specific case with manifest HD, a participant in the Enroll-HD study, whereby the patient’s obsessionality was central to her pattern of high alcohol intake and to her successful avoidance of alcohol thereafter. A record of past problems with high alcohol intake was more common in the group with manifest HD (9.0%, n = 1121) when compared with the pre-manifest carriers of the HD genetic abnormality (2.3%, n = 339). Age at onset of symptoms was not significantly influenced by current alcohol misuse, or past misuse. The severity of clinical impairments in HD was influenced by alcohol. Patients who reported high alcohol intake in the past had a statistically significant increase in motor impairments, by the Unified Huntington’s Disease Rating Scale total motor score (Kruskal–Wallis, post hoc Dunn’s, p < 0.001), and a significantly higher burden of psychiatric symptoms by the Problem Behaviours Assessment score (Kruskal–Wallis, post hoc Dunn’s, p < 0.01) compared with those not reporting high alcohol use. However, the past alcohol group did not have a lower Mini Mental State Examination score (Kruskal–Wallis, post hoc Dunn’s, p > 0.05) The first symptom of HD, as determined by the assessing clinician, was more likely to be psychiatric disturbance in patients currently misusing alcohol or those with prior history of alcohol misuse (55% and 31% respectively) when compared with controls (5%). Individual case experience, such as that presented in this study, shows that HD and alcohol, two major genetic and environmental contributors to neurodegeneration, interact in producing clinical problems. However, the complexities of these interactions are difficult to define, and may require larger studies dedicated to exploring the various factors in this interaction. Full article
(This article belongs to the Special Issue Health Inequalities in Dementia Care)
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Communication
Carer Empowerment Is Key to Reduce Dementia Care Inequalities in the Middle East
Int. J. Environ. Res. Public Health 2021, 18(8), 4378; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18084378 - 20 Apr 2021
Viewed by 622
Abstract
Dementia represents a significant problem in the Middle East. Sociocultural and political factors that shape conceptions of health and care tend to stifle research and the dissemination of knowledge throughout the Middle East. These socio-political challenges concerning engagement with individuals living with dementia [...] Read more.
Dementia represents a significant problem in the Middle East. Sociocultural and political factors that shape conceptions of health and care tend to stifle research and the dissemination of knowledge throughout the Middle East. These socio-political challenges concerning engagement with individuals living with dementia and their carers include language barriers, stigmatization, logistical constraints, lack of informal support outside of hospitals, and over-dependence on clinicians for dementia information. There is an urgent need in the Middle East to increase care and support for adults with dementia and their carers, enhance research efforts and improve the dissemination of information related to dementia in the region. One possible way to do so is to begin to promote a knowledge-based culture throughout the Middle East. This can be achieved by aligning traditional deterministic and spiritual perspectives of mental health with more Western, scientific, and evidence-based models. We suggest employing practical, multidimensional approaches to deal with the stated challenges, both at individual and societal levels. Doing so will improve knowledge of dementia and allow health and social care systems in the Middle East to begin to address a growing problem. Full article
(This article belongs to the Special Issue Health Inequalities in Dementia Care)
Article
The Integration of Psychosocial Care into National Dementia Strategies across Europe: Evidence from the Skills in DEmentia Care (SiDECar) Project
Int. J. Environ. Res. Public Health 2021, 18(7), 3422; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18073422 - 25 Mar 2021
Cited by 2 | Viewed by 1046
Abstract
There is evidence supporting the use of psychosocial interventions in dementia care. Due to the role of policy in clinical practice, the present study investigates whether and how the issue of psychosocial care and interventions has been addressed in the national dementia plans [...] Read more.
There is evidence supporting the use of psychosocial interventions in dementia care. Due to the role of policy in clinical practice, the present study investigates whether and how the issue of psychosocial care and interventions has been addressed in the national dementia plans and strategies across Europe. A total of 26 national documents were found. They were analyzed by content analysis to identify the main pillars associated with the topic of psychosocial care and interventions. Specifically, three categories emerged: (1) Treatment, (2) Education, and (3) Research. The first one was further divided into three subcategories: (1) Person-centred conceptual framework, (2) Psychosocial interventions, and (3) Health and social services networks. Overall, the topic of psychosocial care and interventions has been addressed in all the country policies. However, the amount of information provided differs across the documents, with only the category of ‘Treatment’ covering all of them. Furthermore, on the basis of the existing policies, how the provision of psychosocial care and interventions would be enabled, and how it would be assessed are not fully apparent yet. Findings highlight the importance of policies based on a comprehensive and well-integrated system of care, where the issue of psychosocial care and interventions is fully embedded. Full article
(This article belongs to the Special Issue Health Inequalities in Dementia Care)
Article
A National Memory Clinic Survey to Assess Provision for People from Diverse Ethnic Backgrounds in England and Wales
Int. J. Environ. Res. Public Health 2021, 18(4), 1456; https://doi.org/10.3390/ijerph18041456 - 04 Feb 2021
Viewed by 751
Abstract
English national guidelines regarding dementia assessment and management recommend consideration of cultural and linguistic diversity when assessing people with cognitive complaints. To date there has been no assessment of adherence to these guidelines. We aimed to assess whether current services provided in memory [...] Read more.
English national guidelines regarding dementia assessment and management recommend consideration of cultural and linguistic diversity when assessing people with cognitive complaints. To date there has been no assessment of adherence to these guidelines. We aimed to assess whether current services provided in memory assessment services (MAS) adhere to national policy, in their approach to the assessment and management of individuals with memory problems from minority ethnic backgrounds. We sent a survey to 213 memory services in England and Wales. Twenty MAS from seven regions responded to the survey. We found that 80% (16) provided translated resources, 70% (14) used cognitive assessment tools that are culturally sensitive and appropriate, and 65% (13) showed good use of sufficiently skilled and knowledgeable interpreters. Communication barriers, particularly language, were raised as a potential obstacle to diagnosing minority ethnic patients. Memory clinics appear to reflect national policy for the assessment and management of memory problems in minority ethnic patients. However, only a minority of services responded and they may be more engaged in considering these populations. We need wider knowledge of practice to explore how guidelines support healthcare professional’s assessment of patients from minority ethnic groups in memory service diagnostic procedures. Full article
(This article belongs to the Special Issue Health Inequalities in Dementia Care)
Article
Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic
Int. J. Environ. Res. Public Health 2021, 18(2), 686; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18020686 - 14 Jan 2021
Viewed by 1735
Abstract
Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia [...] Read more.
Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic. Full article
(This article belongs to the Special Issue Health Inequalities in Dementia Care)
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