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Impact of oral conditions of children/adolescents with Down syndrome on their families' quality of life

Aims: To assess the impact of oral conditions among children/adolescents with Down syndrome (DS) on the Oral Health-related Quality of Life (OHRQoL) of their families in comparison with a group without DS. Methods and Results: Families of 144 children/adolescents with DS aged 4-18 years were compared with families of individuals without DS. Dental caries experience (DMFT/dmft), clinical consequences of untreated dental caries (PUFA/pufa), gingival bleeding (GBI), visible plaque (VPI), and malocclusion were evaluated.

Tue, 01/31/2023 - 08:14

Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome

Objective: There are many challenges to health, functioning, and participation for children with Down syndrome; yet, the quality-of-life (QOL) domains important for this group have never been clearly articulated. This study investigated parental observations to identify QOL domains in children with Down syndrome and determined whether domains differed between children and adolescents.

Mon, 01/16/2023 - 14:06

Parent-mediated interventions for promoting communication and language development in young children with Down syndrome

Background: Communication and language development are areas of particular weakness for young children with Down syndrome. Caregivers' interaction with children influences language development, so many early interventions involve training parents how best to respond to their children and provide appropriate language stimulation. Thus, these interventions are mediated through parents, who in turn are trained and coached in the implementation of interventions by clinicians.

Mon, 01/16/2023 - 12:12

Sleep problems in adults with Down syndrome and their family carers

Background: Sleep disturbance is common and can have harmful psychological and physical effects. While sleep problems in children with Down syndrome (DS) have received a reasonable amount of attention, very little has been written about this topic in adults with DS.; Method: The present study consisted of an online survey completed by 100 family carers of adults with DS.; Results: High rates of sleep problems of different types were reported in the adults with DS comparable to those found in children with DS in previous research.

Tue, 07/02/2019 - 14:56

Adaptation and resilience in families of individuals with Down syndrome living in Ireland

Accessible Summary: This study describes an Irish‐based study that examined how families of children with Down syndrome living in Ireland adapt to their child’s diagnosis. We found that good family communication and family hardiness have a positive affect on how families adapt. Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child’s diagnosis. Abstract: Background: Down syndrome is a genetic condition that affects people of all races, nationalities and socioeconomic status.

Fri, 05/24/2019 - 10:23

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia.

Thu, 07/05/2018 - 07:11

Prevalence, disability and need in adults with severe learning disability

Evidence from a variety of sources suggests that there has been an increase of around 1% per annum in the prevalence of learning disability (LD) in adults over the last 35 years, due mainly to increases in survival. This trend is likely to continue for at least another ten years. Ninety‐six percent of adults notified to the Leicestershire LD register have an estimated IQ below 50 or need supervision every day to remain safe. Three‐quarters have additional significant disabilities including behaviour problems, psychological symptoms, physical dependencies or epilepsy.

Thu, 07/20/2017 - 15:18

Critical issues for service planners and providers of care for people with Down's syndrome and dementia

The role of service planners and providers of care is one that cannot be understated while considering the future needs of people with Down's syndrome and dementia. This discussion paper raises critical issues that need to be addressed along with suggestions as to how they may be met with.

Thu, 07/20/2017 - 15:15

Down's Syndrome and Dementia: A Resource for Carers and Support Staff

The article reviews the book "Down's Syndrome and Dementia: A Resource for Carers and Support Staff," by Karen Dodd, Vicky Turk, and Michelle Christmas.

Thu, 07/20/2017 - 15:10

Special Needs: Caring for the Older Adult with Down Syndrome

Over the last 30 years, the life expectancy of people with Down syndrome has increased dramatically. Significant medical advances have allowed affected persons to be seen more in the hospital setting, making it imperative that nurses understand their health care needs in order to provide positive health outcomes.

Thu, 07/20/2017 - 15:08