Toward a Research Agenda on the Impact of Dementia upon Carers of Adults with Intellectual Disability

Matthew P. JANICKI1,
Nancy S. JOKENIN2,
Christina MARSACK-TOPOLEWSKI3,
Seth M. KELLER4
1University of Illinois at Chicago, USA
2University of Northern British Columbia,
Prince George, BC, Canada
3 Eastern Michigan University, Ypsilanti, MI USA
4 American Academy of Developmental Medicine
and Dentisty, Lumberton, NJ, USA
E-mail: mjanicki@uic.edu
Received: 25-June-2019
Revised: 12-July-2019
Accepted: 15-July-2019
Online first: 17-July-2019

Abstract

The World Health Organization’s report, Dementia: A Public Health Priority, noted that the number of people affected by dementia will continue to increase and called for nations to address the impact of dementia upon their populations. This included considering the impact on carers providing for adults with intellectual disability affected by Alzheimer’s disease and related dementias. Within the context of the USA’s dementia plan, a national group has advocated that the needs and interests of adults with dementia and their carers be taken into account when dementia-related research is undertaken. In preparation for the second national summit on caregiving and dementia to be held in the USA in 2020, this article describes an effort undertaken by this national group to identify needed research related to carers of adults with intellectual disability. The group identified three focal areas for the summit to consider: the effect of behavioral and psychological symptoms of dementia on carers, challenges for carers of adults with intellectual disability when dementia becomes evident, and barriers that carers face when accessing supports. A list of recommended topics to be researched is provided.

Key words: Alzheimer’s disease, carers, dementia, Down syndrome, intellectual disability, national plans

Citation: Janicki, M.P., Jokenin, N.S., Marsack Topolewski, C., Keller, S.M. Toward a Research Agenda on the Impact of Dementia upon Carers of Adults with Intellectual Disability. Journal for ReAttach Therapy and Developmental Diversities https://doi.org/10.26407/2019jrtdd.1.18

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HEALTH CONDITION IN PERSONS WITH AUTISM SPECTRUM DISORDERS

Vladimir TRAJKOVSKI
Institute of Special Education and Rehabilitation,
Faculty of Philosophy, University “Ss. Cyril and Methodius,
1000 Skopje, Republic of Macedonia
E-mail: vladotra@fzf.ukim.edu.mk
Received: 20-October-2018
Revised: 23-December-2018
Accepted: 25-December-2018
Online first 29-December-2018

Abstract

Introduction: Autism Spectrum Disorders (ASD) are behaviourally defined syndromes where the etiology and pathophysiology are not very well understood. If the child has been diagnosed with autism, parents already face special behavioural challenges. What makes ASD even more difficult, are the many other medical health issues that often arise in this population.
The purpose of this article is to summarise the latest understanding of autism’s commonly associated physical and mental health conditions.

Methods: An analysis of relevant literature, sources from the internet and published literature, personal experience and observations of the author.

Recent findings: Autism is a disorder of the whole body. It is often in co-morbidity with: epilepsy, gastrointestinal disorders, neuro-inflammation and immunological disorders, asthma, eczema, sleep disturbances, eating and feeding disorders, food allergies, attention deficit and hyperactivity disorder (ADHD), headaches, anxiety disorders, bipolar disorder, depression, schizophrenia, obsessive-compulsive disorder, Fragile X syndrome, intellectual disability, nonverbal learning disorder, motor clumsiness, Tourette syndrome, sensory problems, tuberous sclerosis, oxidative stress, acquired mitochondrial dysfunction and metabolic abnormalities. Many of the issues outlined here can overlap each other.

Conclusions:Improved understanding of the underlying pathology of ASD and associated conditions, and the development of a common purpose across multiple treating sites, can improve the consistent and coordinated healthcare of children with autism. There is need for the development of improved strategies for delivering effective health education and healthcare to this large population. Improving the ability of these persons to lead relatively independent lives has a great economic impact.

Key words: autism spectrum disorders, health, condition, medical disorders

Citation: Trajkovski, V. Health Condition in Persons with Autism Spectrum Disorders. Journal for ReAttach Therapy and Developmental Diversities. https://doi.org/10.26407/2018jrtdd.1.12

Copyright ©2018 Trajkovski, V. This is an open-access article distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0)

Corresponding address:
Vladimir TRAJKOVSKI
Institute of Special Education and Rehabilitation,
Faculty of Philosophy, University “Ss. Cyril and Methodius,
Blvd. Goce Delchev 9A, 1000 Skopje, Republic of Macedonia
E-mail: vladotra@fzf.ukim.edu.mk

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SEXUAL HEALTH ISSUES IN WOMEN WITH INTELLECTUAL DISABILITIES PRELIMINARY ANALYSIS OF THE PROBLEM

Monica PARCHOMIUK
Univeristy of Maria Curie-Sklodowska in
Lublin, Poland
E-mail: mparchomiuk@o2.pl
Received: 06-September-2018
Revised: 30-September-2018
Accepted: 05-October-2018
Online first 06-October-2018

Abstract

Introduction: Women with intellectual disability have a low level of competencies that would allow them to better manage their sexuality; consequently, they have a low level of control over their own health.

Objectives: The article describes the results of author’s own research into selected aspects of sexual health of women with intellectual disability (ID). The focus has been on issues such as menstruation, health and gynecological care, pharmacologization, contraception, STDs, and menopause.

Methods: The research was conducted with 11 women using structured interviews.

Results: Results suggest that these women have a low level of competencies to manage and control health problems in an optimal way. Their behavior is determined by people from their living environment to a large extent. Women with ID report various abnormalities in the course of developmental phenomena and in their own health, indicating potentially serious diseases and disorders.

Conclusion:Women with intellectual disability require lifelong support in meeting their health needs. Such support should be provided by institutions of care, health and social assistance.

Key words: sexual health, intellectual disability, gynecological care, contraception, STD

Citation: Parchomiuk, M. Sexual Health Issues in Women with Intellectual Disabilities Preliminary Analysis of the Problem. Journal for ReAttach Therapy and Developmental Diversities. https://doi.org/10.26407/2018jrtdd.1.9

Copyright ©2018 Parchomiuk, M. This is an open-access article distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0)

Corresponding address:
Monika PARCHOMIUK
Faculty of Pedagogy and Psychology,
Univeristy of Maria Curie-Sklodowska in Lublin, Narutowicza
E-mail: mparchomiuk@o2.pl

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