Quality of life - Ageing and Down syndrome

Brown, Roy I.; Taylor, Jane H. M.; Matthews, Brian

doi:10.3104/case-studies.101

Cited by 32 publications

(45 citation statements)

References 8 publications

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“…Over the past century, average life span for individuals with DS has risen from 9 years in 1900 to over 50 years in 2000 [40], increasing the risk for ageing-related diseases such as osteoporosis. In addition to an increased life expectancy, individuals with DS exhibit reductions in BMD associated with hypotonia, as well as nutritional and hormone deficiencies [41], suggesting that these individuals may be more susceptible to osteoporosis.…”

Section: Discussionmentioning

confidence: 99%

Disruption of bone development and homeostasis by trisomy in Ts65Dn Down syndrome mice

Blazek¹,

Gaddy²,

Meyer³

et al. 2011

Bone

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Down syndrome (DS) is a genetic disorder resulting from trisomy 21 that causes cognitive impairment, low muscle tone and craniofacial alterations. Morphometric studies of the craniofacial and appendicular skeleton in individuals with DS suggest that bone development and homeostasis are affected by trisomy. The Ts65Dn mouse model has three copies of approximately half the genes found on human chromosome 21 and exhibits craniofacial skeletal and size differences similar to those observed in humans with DS. We hypothesized that Ts65Dn and euploid mice have distinct differences in bone development and homeostasis influencing both the craniofacial and appendicular skeletal phenotypes. Quantitative assessment of structural and mechanical properties of the femur in Ts65Dn and control mice at 6 and 16 weeks of age revealed significant deficiencies in trabecular and cortical bone architecture, bone mineral density, bone formation, and bone strength in trisomic bone. Furthermore, bone mineral density and dynamic dentin formation rate of the skull and incisor, respectively, were also reduced in Ts65Dn mice, demonstrating that trisomy significantly affects both the craniofacial and appendicular skeleton.

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Section: Discussionmentioning

confidence: 99%

Disruption of bone development and homeostasis by trisomy in Ts65Dn Down syndrome mice

Blazek¹,

Gaddy²,

Meyer³

et al. 2011

Bone

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“…Brown (1998) devoted his work to identifying individualised factors that affect the quality of life of people with ID, and in particular DS. His pilot qualitative research examined the quality of life of people with DS aged 45-70 years (Brown et al 2001). Using a questionnaire, life experience and perceptions were explored, including personal views on the ageing process.…”

Section: Introductionmentioning

confidence: 99%

Needs and challenges of daily life for people with Down syndrome residing in the city of Rome, Italy

Bértoli

Biasini²,

Calignano³

et al. 2011

J intellect Disabil Res

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BackgroundPopulation-based surveys on the quality of life of people with Down syndrome (DS) are difficult to perform because of ethical and legal policies regarding privacy and confidential information, but they are essential for service planning. Little is known about the sample size and variability of quality of life of people with DS living in the city of Rome, which has a population of 2.7 million inhabitants. The aim of the present study is to explore the needs and challenges in health, social integration and daily life, of people with DS living in Rome.MethodologyA cross-sectional, census-based survey was conducted in 2006. All family doctors (3016 in total) of the National Health Service were involved by the Statistical Bureau of the Municipality of Rome. As per the census, every resident citizen is registered with a family doctor and every person with disabilities is coded. Associations for Down Syndrome encouraged their members to participate in the research. Questionnaires were completed by families of people with DS, in accordance with privacy laws.FindingsAn initial survey, conducted via a letter and a telephone contact with family doctors, identified 884 people with DS residing in the city of Rome. Data on the medical and social conditions of 518 people with DS, ranging in age from 0 to 64 years, were collected. Some 88% of these were living with their original family; 82.1% had one or more siblings, and 19.5% had lost one or both parents. A full 100% of children with DS were enrolled in the public school system. This ensures that they are fully occupied and entirely integrated in society. After secondary school there is a lack of opportunities. Thus, only 10% of adults were working with a regular contract. A mere 42.2% of people with DS aged 25–30 were involved in some form of regular activity (although not always on a daily basis). After the age of 30, the percentage of people demonstrating decline in function increased sharply, while disability-related support decreased. In other words, as people with DS age, daily life evolves increasingly around the home, with only occasional outdoor activities.ConclusionThe health, employment and social needs of the majority of people with DS in the city of Rome are not being met. The findings of this study underscore the urgent need for more comprehensive inclusion in society of adults with DS and for the provision of support services to create an enabling environment for inclusion. Because of the variability of performance among individuals with DS, there is a need to create more case-specific options in terms of work, living arrangements, social networking and medical services. Schooling and social inclusion in childhood alone do not guarantee a satisfactory quality of life in adulthood. It is argued herewith that policy of inclusion and support should extend over the entire lifetime of people with DS.

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“…Entretanto, as tarefas atribuídas ao cuidador, muitas vezes sem a orientação adequada e sem o suporte das instituições de saúde e das redes sociais, a alteração das rotinas e o tempo despendido no cuidado podem interferir diretamente nos aspectos de sua vida pessoal, familiar e social e, por conseguinte, gerar impactos na QV (4,(6)(7)(8)(9)25,26) . As pesquisas apontam a presença de estresse como um fator importante relacionado a toda essa situação, manifestado de formas e em intensidades diversas, nos diferentes membros componentes da família, inclusive naqueles que apresentam o acometimento (1)(2)(3)(4)(26)(27) .…”

Section: Revisão Da Bibliografiaunclassified

A Qualidade De Vida Dos Cuidadores De Crianças Portadoras De Síndrome De Down Que Frequentam a Fisioterapia

Carvalho¹,

Ferreira²,

Costa³

2018

PIC

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Crianças que nascem com Síndrome de Down se desenvolvem de forma mais lenta, ou seja, necessitam de cuidados maiores, a família que vive junto com a criança acaba tendo uma qualidade de vida afetada, mesmo não sendo o cuidador direto daquela criança, pois a mãe é quem apresenta a figura que desempenha maior o cuidado pela criança. A Fisioterapia pode colaborar especificamente para o desenvolvimento motor, ajudando-a se movimentar de maneira correta e no fortalecimento físico para as crianças e aos cuidadores pode oferecer melhora na qualidade de vida. O estudo apresenta uma pesquisa com intervenção fisioterápica com auriculoterapia em cuidadores de crianças portadoras de Síndrome de Down, que frequentavam a Associação de Pais e Amigos dos Excepcionais em Brasília e de forma aleatória nas dependências do UNICEUB. O objetivo foi avaliar a intervenção da Fisioterapia através da auriculoterapia na qualidade de vida. A Fisioterapia pode agir de diversas maneiras nestes casos, tanto no cuidador como na criança com Síndrome de Down, para alivio de dores e consequentemente mudando a qualidade de vida, para os cuidadores. A amostra foi dividida em dois grupos, grupo de crianças que frequentam a Fisioterapia e o grupo de crianças que não frequentam a Fisioterapia. Foi feito um levantamento sobre as condições de vida e dor, através de questionário próprio e o Questionário SF36. Posteriormente foi aplicado auriculoterapia nos cuidadores direcionado para as queixas relatadas nos questionários. A auriculoterapia exerceu uma influência positiva, nos dois grupos, tanto no grupo de crianças que frequentam a Fisioterapia, quanto nogrupo crianças que não frequentam a Fisioterapia. Os cuidadores das crianças que não frequentam a fisioterapia obtiveram melhores resultados. Foi possível perceber que há melhora na qualidade de vida dos cuidadores através da aplicação da auriculoterapia com uso de sementes de mostarda

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Quality of life - Ageing and Down syndrome

Cited by 32 publications

References 8 publications

Disruption of bone development and homeostasis by trisomy in Ts65Dn Down syndrome mice

Disruption of bone development and homeostasis by trisomy in Ts65Dn Down syndrome mice

Needs and challenges of daily life for people with Down syndrome residing in the city of Rome, Italy

A Qualidade De Vida Dos Cuidadores De Crianças Portadoras De Síndrome De Down Que Frequentam a Fisioterapia

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