Caregivers’ Perceptions of Family Quality of Life of Individuals with Developmental Disabilities Comorbid with Dementia: A Pilot Study

Christina N. MARSACK-TOPOLEWSKI
Preethy S. SAMUEL

Eastern Michigan University, School of Social Work
Department of Health Care Sciences, Eugene Applebaum College of Pharmacy and Health Sciences, Detroit, Michigan, USA
E-mail: ctopole1@emich.edu
Received: 17-October-2020
Revised: 16-November-2020
Accepted: 20-November-2020
Online first: 21-November-2020

Abstract

Introduction: Although individuals with intellectual/ developmental disabilities (I/DD) are living longer than in the past, they also are exposed to age-related changes in health and well-being. They are prone to acquire dementia that often manifests earlier and more frequently than in the general population. However, there is sparse knowledge on the daily challenges that affect the quality of life of the individuals with I/DD and comorbid dementia and their family caregivers.

Aim: This pilot study examined strengths and challenges of individuals with dual diagnoses of I/DD and dementia using the family quality of life (FQOL) framework.

Method: Cross-sectional data was gathered from a convenience sample of family caregivers using a web-based electronic survey.

Objectives: This study aims to identify the common and differential elements of the DLD (SLI) and LD through a quantitative and qualitative analysis.

Results: The variables of interest in this study were the levels of importance and satisfaction attributed to the nine FQOL domains, and overall FQOL. The mean level of importance was higher than the associated ratings of satisfaction in eight of the nine domains, with an overall importance mean of 4.15 and satisfaction mean of 3.28. Analysis of the open-ended comments indicated that the negative impact of social isolation, compound caregiving, and dynamically changing caregiving needs on overall FQOL was balanced by participants’ values and beliefs.

Results: A statistical analysis (Student’s t test) was conducted in order to compare the children in LD and DLD groups. The data obtained from this analysis along with LSA indicate that the language skills differ between the two groups in the following aspects: lexical, pragmatic, semantic, syntactic, morphological and phonological. Significant differences (p < .05) occur for the start of speech therapy age, phonological disorder, passive vocabulary and language psychological age. Results for active vocabulary did not indicate a statistical difference between LD and DLD children.

Implication for practice: The discrepancies in the FQOL domains pertaining to formal and informal services and social supports elucidate a need to empower families with high caregiving needs through research, practice and policy.

Conclusion Providers should be cognizant of the needs of individuals with I/DD and dementia comorbid, as well as the needs of their family caregivers.

Key words: Aging families, Caregiving, Dementia, Developmental Disability, Family quality of life, Intellectual Disability

Citation: Marsack-Topolewski, N. C., Samuel, S. P. Caregivers’ Perceptions of Family Quality of Life of Individuals with Developmental Disabilities Comorbid with Dementia: A Pilot StudyJournal for ReAttach Therapy and Developmental Diversities, 2020 Dec 25; 3(2): 56-70. https://doi.org/10.26407/2020jrtdd.1.38

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Specific Language Impairment and Language Delay: an Analysis of Developmental Language Disorder Characteristics in a Group of Romanian Children

Ovidiu CRISTIAN TUDOREAN
Alois GHERGUT

Faculty of Psychology and Educational Sciences “Alexandru Ioan Cuza”
University of Iaşi, Iaşi, Romania
E-mail: cristi.tudorean@gmail.com
Received: 31-August-2020
Revised: 29-October-2020
Accepted: 08-November-2020
Online first: 09-November-2020

Abstract

Introduction: Although specific language impairment (SLI) or developmental language disorder (DLD) and language delay (LD) are fairly well documented language disorders, the specificity for Romanian children has not been clearly highlighted.

Methods: EF were measured with the Behaviour Rating Inventory of Executive Functions (BRIEF), and social and academic competences were measured with the Social Skills Rating System (SSRS). The sample for this study consisted of 44 adolescents with mild intellectual disability aged 15-18 years old (mean age 16.7 years, SD- 1.4).

Objectives: This study aims to identify the common and differential elements of the DLD (SLI) and LD through a quantitative and qualitative analysis.

Methods: We considered two groups of children: one diagnosed with DLD (n = 67) and another with LD (n = 57), aged 3 to 12 years (M age = 5 years 8 months). Tests for establishing the language psychological age and the active and passive vocabulary, recording the phonetic inventory and language sample analysis (LSA) for qualitative observations were used as analysis tools. These instruments proved to be useful in establishing the specificity of each disorder and formulating the prognosis.

Results: A statistical analysis (Student’s t test) was conducted in order to compare the children in LD and DLD groups. The data obtained from this analysis along with LSA indicate that the language skills differ between the two groups in the following aspects: lexical, pragmatic, semantic, syntactic, morphological and phonological. Significant differences (p < .05) occur for the start of speech therapy age, phonological disorder, passive vocabulary and language psychological age. Results for active vocabulary did not indicate a statistical difference between LD and DLD children.

Conclusions: The characteristics of DLD and LD were noted in this study. These language disorders have specific markers, which imply differentiated measures, from the diagnosis phase to the construction of the remediation plan. The study is a prospective one, this issue being the subject for further exhaustive approaches.

Key words: specific language impairment, developmental language disorder, language delay, phonetic inventory, language psychological age, expressive and receptive vocabulary

Citation: Cristian Tudorean, O., Ghergut, A. Specific Language Impairment and Language Delay: an Analysis of Developmental Language Disorder Characteristics in a Group of Romanian Children. Journal for ReAttach Therapy and Developmental Diversities, 2020 Dec 25; 3(2): 40-55. https://doi.org/10.26407/2020jrtdd.1.37

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Immune, Autonomic, and Endocrine Dysregulation in Autism and Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders Versus Unaffected Controls

Emily L. Casanova1,
Julia L. Sharp2,
Stephen M. Edelson3,
Desmond P. Kelly1, 4,
Estate M. Sokhadze1,
Manuel F. Casanova1, 4

1Department of Biomedical Sciences, University of South Carolina
School of Medicine Greenville, South Carolina, USA
2Department of Statistics, Colorado State University, Fort Collins, Colorado, USA
3Autism Research Institute (ARI), San Diego, California, USA
4Department of Pediatrics, Greenville Health System Children’s Hospital, Greenville, South Carolina, USA
E-mail: casanove@greenvillemed.sc.edu
Received: 1-October-2019
Revised: 23-October-2019
Accepted: 30-October-2019
Online first: 31-October-2019

Abstract

Background: A growing body of literature suggests etiological overlap between Ehlers-Danlos syndrome (EDS)/hypermobility spectrum disorders (HSD) and some cases of autism, although this relationship is poorly delineated. In addition, immune, autonomic, and endocrine dysregulation are reported in both conditions and may be relevant to their respective etiologies.

Aims: To study symptom overlap in these two comorbid spectrum conditions.

Methods and Procedures: We surveyed 702 adults aged 25+ years on a variety of EDS/HSD-related health topics, comparing individuals with EDS/HSD, autism, and unaffected controls.

Outcomes and Results: The autism group reported similar though less severe symptomology as the EDS/HSD group, especially in areas of immune/autonomic/endocrine dysregulation, connective tissue abnormalities (i.e., skin, bruising/bleeding), and chronic pain. EDS/HSD mothers with autistic children reported more immune symptoms than EDS/HSD mothers without, suggesting the maternal immune system could play a heritable role in these conditions (p = 0.0119).

Conclusions and Implications: These data suggest that EDS/HSD and autism share aspects of immune/autonomic/endocrine dysregulation, pain, and some tissue fragility, which is typically more severe in the former. This overlap, as well as documented comorbidity, suggests some forms of autism may be hereditary connective tissue disorders (HCTD).

Key words: hereditary connective tissue disorders, immune system, collagen, dysautonomia, mast cell activation disorders

Citation: Casanova, E. L., Sharp, J. L., Edelson, S. M., Kelly, D. P., Sokhadze, E. M., Casanova, M. F. Immune, Autonomic, and Endocrine Dysregulation in Autism and Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders Versus Unaffected Controls. Journal for ReAttach Therapy and Developmental Diversities. https://doi.org/10.26407/2019jrtdd.1.20

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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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