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| [[File:Ds-awarness-cover.jpg|center|frameless|851x851px]] | | <div class="editorbox"> '''Original Editor '''- [[User:Elizabeth Cachia|Elizabeth Cachia]], [[User:Shelly Dineen|Shelly Dineen]], [[User:James Egan|James Egan]], [[User:Alex James|Alex James]], [[User:Joe Nelmes|Joe Nelmes]] and [[User:David Serafini|David Serafini]] as part of the [[Current_and_Emerging_Roles_in_Physiotherapy_Practice|Queen Margaret University Project]] '''Top Contributors''' - {{Special:Contributors/{{FULLPAGENAME}}}}</div> |
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| == <u>Introduction</u> ==
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| Welcome to our information page! This resource is intended for families and carers of persons with Down syndrome (DS).
| | == Introduction== |
| | Down Syndrome (DS) is a genetic, chromosomal condition.<ref name=":32">National Down Syndrome Society. What is down syndrome. London: NDSS. https://www.ndss.org/about-down-syndrome/down-syndrome/ (accessed 09 March 2022).</ref> Chromosomes are structures found in every cell of the body that contain genetic material and are responsible for determining anything ranging from eye colour to height.<ref name=":33">National Human Genome Research Institute. Chromosome. Available from <nowiki>https://www.genome.gov/genetics-glossary/Chromosome</nowiki> (accessed 9 March 2022).</ref> Typically, each cell has 23 pairs of chromosomes.<ref name=":33" /> However, in individuals with Down syndrome, there is a full or partial extra copy of chromosome 21 in some, or all, cells.<ref name=":32" /> |
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| When a person has DS, it is common for family members to seek out information to better understand the unique challenges they may face and to prepare for the future. There is a large amount of information available regarding Down syndrome, which can be overwhelming and intimidating.
| | === Epidemiology === |
| | DS is the most commonly occurring chromosomal variance noted worldwide, with 1 in 1000 births resulting in a child with DS.<ref name=":32" /> <ref name=":34" /><ref>Windsperger K, Hoehl S. [https://www.frontiersin.org/articles/10.3389/fpsyt.2021.749046/full Development of Down Syndrome Research Over the Last Decades–What Healthcare and Education Professionals Need to Know]. Frontiers in Psychiatry. 2021 Dec 14;12:749046.</ref> In the UK alone, there are approximately 40,000 people living with Down Syndrome, and 750 are born each year with DS <ref name=":34">Learning Disability Today. Spotlight on: Down Syndrome. Available from https://www.learningdisabilitytoday.co.uk/spotlight-on-downs-syndrome (accessed 09 March 2022).</ref>. Birth rates are expected to stay the same, but the total population of persons with DS is expected to rise in the coming years. This is mainly due to medical advancements which have increased life expectancy from age 9 in 1929,<ref>Carr J, Collins S. [https://onlinelibrary.wiley.com/doi/10.1111/jar.12438 50 years with Down syndrome: A longitudinal study]. J Appl Res Intellect Disabil. 2018 Sep;31(5):743-750. </ref> to 60 years of age today.<ref>Zhu J, Hasle H, Correa A, Schendel D, Friedmant J, Olsen J, Ramussen S. Survival among people with down syndrome. Genetics in Medicine 2013;15:64-69. <nowiki>https://www.nature.com/articles/gim201293</nowiki> (accessed 12 March 2018). </ref> With this increase in the number and age of this population, there will be a larger demand on health services, such as physiotherapy, and increased challenges for families to overcome. |
| | == Signs and Symptoms == |
| | Though there are many similarities across the DS population, there is great variation in the syndrome. There are three types of DS: Trisomy 21 (95%), Translocation (3%-4%) and Mosaicism (1%).<ref>Pueschel SM, editor. A parent's guide to Down syndrome: Toward a brighter future. Brookes Pub; 2001.</ref> Whichever the type, persons with DS typically have poorer overall health at a young age and exhibit a greater loss of health, mobility, and increased secondary complications as they age compared to their non-DS counterparts.<ref>British Institute of Learning Disabilities. Supporting older people with learning disabilities. <nowiki>https://www.ndti.org.uk/uploads/files/9354_Supporting_Older_People_ST3.pdf</nowiki> (accessed 18 March 2018).</ref><ref>Cruzado D, Vargas, A. Improving adherence physical activity with a smartphone application based on adults with intellectual disabilities. BMC Public Health. 2013;13:1173. <nowiki>https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-13-1173</nowiki> (accessed 11 March 2018).</ref> As a result, persons with DS and their families frequently access a range of health services, including physiotherapy. |
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| The purpose of this educational resource is to consolidate and clarify the information found in current literature and provide families of persons with DS a comprehensive, easily understood learning tool that they can feel confident in consulting. This wiki further intends to educate families about what to expect throughout the lifespan of an individual with DS, ease concerns, and highlight the role of physiotherapy in the care and management of Down syndrome. After reading this page, it is the hope of the authors that readers will feel encouraged and confident, allowing the family to better manage and cope at home. We hope that families will be better able to understand when and how to seek professional guidance, should they require support.
| | === Physical Characteristics === |
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| == <u>Why is this Wiki Important?</u> ==
| | * Growth failure |
| DS is the most commonly occurring chromosomal variance noted world-wide<ref name=":0">National Down Syndrome Society. Down syndrome fact sheet. www.ndss.org/wp-content/uploads/2017/08/NDSS-Fact-Sheet-Language-Guide-2015.pdf (accessed 14 March 2018).</ref> , with 1 in 700 births resulting in a child with DS<ref>Cipriani G, Danti S, Carlesi C, Fiorino M. Aging with down syndrome: the dual diagnosis: alzheimer's disease and down syndrome. American Journal of Alzheimer's Disease and Other Dementias 2018. www.journals.sagepub.com/doi/pdf/10.1177/1533317518761093 (accessed 14 March 2018).</ref>. In the UK alone, there are over 41,000 people living with Down syndrome, and 750 new people born with DS each year <ref>Carr J, Collins S.. 50 years with down syndrome: a longitudinal study. Journal of Applied Research in Intellectual Disabilities 2018. <nowiki>https://www.ncbi.nlm.nih.gov/pubmed/29498451</nowiki> (accessed 14 March 2018).</ref>. Birth rates are expected to stay the same, but the total population of persons with DS is expected to rise in the coming years. This is mainly due to medical advancements which have increased the life expectancy of people with DS from age 9 in 1929, to 60 years of age today <ref>Zhu J, Hasle H, Correa A, Schendel D, Friedmant J, Olsen J, Ramussen S. Survival among people with down syndrome. Genetics in Medicine 2013;15:64-69. <nowiki>https://www.nature.com/articles/gim201293</nowiki> (accessed 12 March 2018). </ref>. With this increase in number and age of this population, there will be a larger demand on health services and increased challenges for families to overcome. Furthermore, persons with DS report having problems gaining access to health care<ref>Allerton L, Emerson E. British adults with chronic health conditions or impairments face significant barriers to accessing health services. Public Health 2012;126:920-927. https://www.ncbi.nlm.nih.gov/pubmed/22959282 (accessed 13 March 2018).</ref> with the main barrier being a lack of knowledge about available services<ref>National Health Service. Promoting access to healthcare for people with a learning disability. www.jpaget.nhs.uk/media/186386/promoting_access_to_healtcare_for_people_with_learning_disabilities_a_guide_for_frontline_staff.pdf (accessed 14 March 2018).</ref>.
| | * Hypotonia |
| | * Ligamentous laxity |
| | * Flat posterior aspect of the head |
| | * Broad flat face |
| | * Slanting eyes |
| | * Epicanthic eyefold |
| | * Short nose |
| | * Small and arched palate |
| | * Big wrinkled tongue |
| | * Dental anomalies |
| | * Short and broad hands |
| | * Special skin ridge patterns |
| | * Unilateral/bilateral absence of one rib |
| | * Congenital heart disease |
| | * Intestinal blockage |
| | * Enlarged colon |
| | * Umbilical hernia |
| | * Pelvis anomalies |
| | * Diminished muscle tone |
| | * Big toes widely spread |
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| This wiki is therefore a necessary educational tool for families to consult whenever they are looking for answers or reassurance. It will also identify what is to be expected over the lifespan of a person with DS and common misconceptions, as well as how families and individuals can best self-manage at home. Lastly, this resource will highlight potential complications and provide resources for family members should they require assistance.
| | === Medical conditions === |
| | DS is not a medical condition, but a common variation in the human form. There are, however, many medical conditions that people with DS frequently experience. These include: |
| | [[File:Medical conditions.png|thumb|224x224px]] |
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| == <u>Learning Journey</u> ==
| | * learning difficulties |
| It is the goal of the authors that after reading this page you will:[[File:Learning Outcomes Diagram Complete.jpg|center|frameless|850x850px]]
| | * poor cardiac health |
| | * [[Thyroid Gland|thyroid]] dysfunction |
| | * [[diabetes]] |
| | * [[obesity]] |
| | * digestive problems |
| | * low bone density |
| | * hearing and vision loss |
| | * [[dementia]] and [[Alzheimer's Disease|Alzheimer's]] Disease |
| | * [[depression]] |
| | * [[Leukemia|leukaemia]] <sup></sup> |
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| == <u>What is Down syndrome?</u> ==
| | * |
| Before we begin, we would like you to watch Ted talk given by Karen Gaffney, a person with Down syndrome. This video will address many contemporary thoughts surrounding DS and ensure you are in the correct mindset about DS while navigating our learning resource. This video provides an inspiring message of positivity that the authors hope to expand upon and pass on to you.{{#ev:youtube|HwxjoBQdn0s}}
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| === '''''The Basics''''' === | | == Developmental Milestones and Down Syndrome == |
| As mentioned above, DS is a chromosomal alteration. Chromosomes are structures found in every cell of our body that contain genetic material. Typically, each cell has 23 pairs of chromosomes, with half coming from each parent <ref>National Down Syndrome Society. What is down syndrome. London: NDSS. https://www.ndss.org/about-down-syndrome/down-syndrome/ (accessed 19 March 2018).</ref>. Down syndrome however, occurs when chromosome 21 has a full or partial extra copy in some, or all, of that individual’s cells. This triple copy is sometimes called trisomy 21 <ref>Newton R, Marder L, Puri S. Down syndrome: current perspectives. London: Mac Keith Press. https://ebookcentral.proquest.com/lib/qmu/detail.action?docID=3329189 (accessed18 March 2018).</ref>. The altered number of chromosomes leads to common physical features in the DS population, such as:
| | Children with [[Down Syndrome (Trisomy 21)|Down Syndrome]] (DS) will generally achieve the same basic motor skills necessary for everyday living and personal independence. However, it may be at a later age and with less refinement compared to those without DS.<ref>Kim H, Kim S, Kim J, Jeon H, Jung D. Motor and cognitive developmental profiles in children with down syndrome. Annals of Rehabilitation Medicine 2017;41:97-103. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344833/ (accessed 21 March 2018).</ref> Some adjusted milestones for DS are listed in the table below:[[File:Milestones DS.jpg|center|frameless|692x692px|link=https://www.physio-pedia.com/File:Milestones_DS.jpg]]It is common for children with DS to be delayed in reaching common milestones such as sitting independently, standing and walking. '''One of the contributing factors to the delay of these specific milestones is poor balance'''. Balance challenges often follow a child into their teen years and sometimes into adulthood.<ref>Georgescu M, Cernea M, Balan V. Postural control in down syndrome subjects. The European Proceedings of Social and Behavioural Sciences. www.futureacademy.org.uk/files/images/upload/ICPESK%202015%2035_333.pdf (accessed 17 March 2018).</ref> Impaired balance may also impact the development of other motor abilities and cognitive development. Being able to maintain balance allows for exploration, social interaction and overall freedom.<ref name=":4">Malak R, Kostiukow A, Wasielewska A, Mojs E, Samborski W. Delays in motor development in children with down syndrome. Medical Science Monitor 2015;21:1904-1910. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500597/ (accessed18 March 2018).</ref> |
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| [[File:DS features.jpg|center|frameless|460x460px|<ref>Kami T. Signs of Down Syndrome. 2008. [Picture]. www.womens-health-advice.com/photos/down-syndrome.html (accessed18 March 2018).</ref>]]
| | Some causes of balance difficulties are: |
| | * ligament laxity |
| | * low muscle tone |
| | * slow reaction times/speed of movement |
| | * differences in brain size: a smaller cerebellum impacts function, limits balance reflexes, and causes blurry vision when completing tasks at high speed. Other parts of the brain can also smaller, creating issues with voluntary activities, walking technique and coordination. |
| | * poor postural control<ref name=":4" /><ref>Costa A. An assessment of optokinetic nystagmus in persons with down syndrome. Experimental Brain Research 2011;8:110-121. https://www.sciencedaily.com/releases/2011/08/110824142850.htm (accessed17 March 2018).</ref><ref>Saied B, Hassan D, Reza B. Postural stability in children with down syndrome. Medicina Sportiva 2014;1:2299-2304. https://search.proquest.com/docview/1510494760/fulltextPDF/6606B032D8C04A9EPQ/1?accountid=12269 (accessed19 March 2018).</ref> |
| | '''Another contributing factor to delayed milestones and a common challenge for individuals with DS is decreased strength'''. |
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| DS itself is not a medical condition and is simply a common variation in the human form. However, there are many medical conditions that people with DS frequently experience. These include: | | During childhood, children with DS do not experience the same amount of muscle growth or strength increase as their peers without DS.<ref>Cowley P, Ploutz-Snyder L, Baynard T, Heffernan K, Jae S, Hsu S. Physical fitness predicts functional tasks in individuals with Down syndrome. Med Sci Sports Exercise 2010;42:388-393.</ref> Individuals with DS typically have 40-50% less strength.<ref>Mercer V, Stemmons V, Cynthia L. Hip abductor and knee extensor muscle strength of children with and without Down’s syndrome. Phys Ther 2001;1318-26.</ref> Decreased strength can impact activities of daily living, such as walking upstairs, getting out of a seat etc, but it can also lead to: |
| | * increased wear and tear on joints |
| | * higher risk of falls |
| | * elevated level of fatigue |
| | * delayed developmental milestones |
| | * increased risk of osteoporosis<ref name=":0">Merrick J, Ezra E, Josef B, Endel D, Steinberg D, Wientroub S. Musculoskeletal problems in Down syndrome. Israeli J Pediatr Orthop 2000;9:185-192.</ref> |
| | It can also contribute to reduced balance due to weakness of the stability muscles.<ref name=":0" /> |
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| * Learning difficulties
| | ''Optionally, learn more about [[Down Syndrome Developmental Milestones and Physical Activity]] on this page.'' |
| * Poor cardiac health
| | == Sensation == |
| * Thyroid disfunction
| | In addition to the other challenges facing people with DS, they can also experience sensory issues.<ref name=":17">BruniI M.. Fine motor skills for children with Down syndrome. 2nd ed. Bethesda: Woodbine House Inc., 2006.</ref> Being unable to process sensory information from the environment (i.e. sensory integration) can be both frustrating and challenging, and often leads to inappropriate behaviour as a response.<ref name=":29">Lashno M. Sensory integration: observations of children with Down syndrome and Autistic spectrum disorders. Disability Solutions 1999;3:31-35.</ref> When sensory feedback is limited, it can impact progress in other areas such as motor development.<ref name=":17" /> Sensory difficulties can impact a child’s behaviour and the way they interact with people and objects around them.<ref name=":29" /> |
| * Diabetes
| | [[File:Elizabeth Stick Men.jpg|center|frameless|615x615px|<ref>Scott R. Do you know me. 2015. [Picture]. <nowiki>https://psychprofessionals.com.au/sensory-processing-problem/</nowiki> (accessed 12 April 2018).</ref>]] |
| * Obesity
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| * Digestive problems
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| * Low bone density
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| * Hearing and Vision loss
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| * Dementia and Alzheimer’s disease
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| * Depression
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| * Leukaemia <ref>Mazeurek D, Wyka J. Down syndrome: genetic and nutritional aspects of accompanying disorders. Roczniki Panstwowego Zakladu Higieny 2015;66:189-194. https://www.ncbi.nlm.nih.gov/pubmed/26400113 (accessed 17 March 2018). </ref><ref name=":1" /><ref name=":2">Sacks B, Buckley S. What do we know about the movement abilities of children with down syndrome. Down Syndrome News and Updates 2003;2:131-141. https://library.down-syndrome.org/en-gb/news-update/02/4/movement-abilities-down-syndrome/ (accessed18 March 2018).</ref>
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| {| class="wikitable"
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| !'''STAY POSITIVE: Remember that every person is unique. These conditions are common in DS but are only possibilities, not inevitabilities.'''
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| |}
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| Though there are many similarities across the DS population, there is great variation in the syndrome. There are three types of DS, each with its own set of challenges and individual variation. The three types of DS are Trisomy 21, Translocation and Mosaicism. Further information on the differences between categories can be found <u>'''[http://dsaco.net/three-types/ here]'''</u><ref>Down Syndrome Limerick. Different types of down syndrome. https://www.downsyndromelimerick.ie/services/new-parents/types-of-down-syndrome (accessed 17 March 2018).</ref>.
| | == Mental Health and Emotional Wellbeing == |
| | It is not uncommon for individuals with DS to experience challenges with emotional behaviours and mental health. Children with DS may have difficulties with communication skills, problem-solving abilities, inattentiveness and hyperactive behaviours. Adolescents may be susceptible to social withdrawal, reduced coping skills, [[depression]], anxiety, obsessive-compulsive behaviours and [[Sleep Apnea|sleep difficulties]]. Adults with DS may have similar experiences as adolescents, with further complications of [[dementia]] and [[Alzheimer's Disease|Alzheimer's]] later in life <ref>Van Germeren-Oosterom H, Fekkes M, Buitendijk S, Mohangoo A, Bruil J, Van Wouwe J. Development, problem behaviour, and quality of life in a population based sample of eight-year-old children with Down syndrome. Plos One 2011;6:7. </ref>. |
| | == Physiotherapy Management and the Role of the Multidisciplinary Team == |
| | All members of the multidisciplinary team can play a major role in supporting individuals with DS by adopting a holistic approach to their diverse needs.<ref>CSP. What is physiotherapy. 2018. www.csp.org.uk/your-health/what-physiotherapy (accessed 14 April 2018).</ref> |
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| Whichever the type, persons with DS typically have poorer overall health at a young age and exhibit a greater loss of health, mobility, and increased secondary complications as they age when compared to their non-DS counterparts <ref>British Institute of Learning Disabilities. Supporting older people with learning disabilities. <nowiki>https://www.ndti.org.uk/uploads/files/9354_Supporting_Older_People_ST3.pdf</nowiki> (accessed 18 March 2018).</ref><ref>Cruzado D, Vargas, A. Improving adherence physical activity with a smartphone application based on adults with intellectual disabilities. BMC Public Health. 2013;13:1173. <nowiki>https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-13-1173</nowiki> (accessed 11 March 2018).</ref>. Physiotherapists are commonly consulted to educate individuals and their families as well as provide input on health promotion and long-term condition management <ref>CSP. Learning disabilities physiotherapy. Associated of Chartered Physiotherapists for People with Learning Disabilities. www.acppld.csp.org.uk/learning-disabilities-physiotherapy (accessed13 March 2018).</ref>. As treatment often requires ongoing maintenance, physiotherapists have become increasingly reliant on family members to support and implement home treatment plans in an attempt to encourage self-management <ref>Middleton J, Kitchen S. Factors affecting the involvement of day centre staff in the delivery of physiotherapy to adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 2008:21:227-235. www.onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2007.00396.x/epdf (accessed 11 March 2018).</ref>. Due to the variation in all people and across Down syndrome cases, no one physiotherapy intervention can be prescribed. Interventions are based on the individual’s physical and intellectual needs, as well as his or her personal strengths and limitations <ref name=":1">National Human Genome Research Institute. Learning about Down syndrome. https://www.genome.gov/19517824/learning-about-down-syndrome/ (accessed 16 March 2018). </ref>. Some of the common issues that physiotherapists will address are:
| | Physiotherapists provide tailored interventions to improve physical abilities, strength, and balance, while occupational therapists focus on enhancing daily living skills, fine motor control, and sensory processing. Speech and language therapists help individuals with DS develop effective communication skills and address feeding and swallowing challenges. Psychologists support emotional and cognitive well-being, helping individuals and their families cope with challenges and develop strategies for long-term success. |
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| * Delayed developmental milestones | | Effective physiotherapy management of DS typically involves a combination of sensory integration therapy, neurodevelopment treatment, perceptual-motor therapy and traditional strength and conditioning programmes.<ref name=":20">Down Syndrome Association. For Families and Carers. https://www.downs-syndrome.org.uk/for-families-and-carers/ (accessed 6 April 2018).</ref> Physiotherapists educate individuals and their families and provide input on health promotion and long-term condition management.<ref>CSP. Learning disabilities physiotherapy. Associated of Chartered Physiotherapists for People with Learning Disabilities. www.acppld.csp.org.uk/learning-disabilities-physiotherapy (accessed13 March 2018).</ref> Interventions are based on the individual’s physical and intellectual needs, as well as his or her personal strengths and limitations.<ref name=":1">National Human Genome Research Institute. Learning about Down syndrome. https://www.genome.gov/19517824/learning-about-down-syndrome/ (accessed 16 March 2018). </ref> Below are some examples of interventions for children with Down syndrome. |
| * Balance issues | | * Tummy time |
| * Decreased strength | | * [[Bobath Approach|Neurodevelopmental treatment (NDT)]] |
| * Reduced levels of physical activity | | * Sensory integration therapy (SIT) |
| * Issues with sensation and memory | | * Perceptual-motor therapy (PMT) |
| * Reduced mental health and emotional wellbeing | | * Two-wheeled bicycle training |
| | * [[Hippotherapy|Therapeutic horseback riding (hippotherapy)]] |
| | * Treadmill training |
| | * [[Balance Training|Balance training]] |
| | * [[Strength Training|Strength training]] |
| | * [[Physical Activity|Physical activity]] |
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| ----
| | As many treatments often require on-going maintenance, the team should encourage family members to support and implement home treatment plans in an attempt to encourage self-management.<ref>Middleton J, Kitchen S. Factors affecting the involvement of day centre staff in the delivery of physiotherapy to adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 2008:21:227-235. www.onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2007.00396.x/epdf (accessed 11 March 2018).</ref> By fostering strong communication among the team members and families, the multidisciplinary rehabilitation team can make a lasting impact on the lives of individuals with DS, helping them achieve their full potential and lead more independent lives. |
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| === '''''Developmental Milestones''''' ===
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| From the time a child is born, they are growing and learning. Each person develops at their own pace. However, some skills are expected to be mastered by a specific age. These are called developmental milestones. Milestones can be physical achievements, language related, or social accomplishments. As physiotherapists, we typically focus on motor skills<ref name=":2" />.
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| The ability to move is essential to human life and development. All children begin developing a wide range of movement skills, or motor skills, starting at birth. These motor skills are wide ranging and often broken down into the sub sections below:[[File:DS Motor Skills.png|center|frameless|623x623px]]
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| Motor skills are key for physical function, but also impact cognitive development.
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| * Reaching and grasping allows a child to explore the characteristics of objects in his or her physical world
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| * Sitting promotes the use of arms and hands for playing
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| * Walking allows a child to explore the world more effectively than crawling
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| * Independent movement increases opportunities for social interaction which promotes language learning<ref name=":0" /><ref name=":3">Layton T. Developmental Scale for Children with Down Syndrome. North Carolina: Extraordinary Learning Foundation. www.dsacc.org/downloads/parents/downsyndromedevelopmentalscale.pdf (accessed 20 March 2018). </ref>
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| Persons with DS will generally achieve all the same basic motor skills necessary for everyday living and personal independence, however it may be at a later age and with less refinement compared to those without DS<ref>Kim H, Kim S, Kim J, Jeon H, Jung D. Motor and cognitive developmental profiles in children with down syndrome. Annals of Rehabilitation Medicine 2017;41:97-103. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344833/ (accessed 21 March 2018). </ref>. Children with DS typically earn adequate skills for daily competence! Some adjusted milestones for DS are available below:
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| [[File:Milestones DS.jpg|center|frameless|692x692px|<ref>National Down Syndrome Society. Down Syndrome Developmental Milestones. 2009. [Picture]. https://www.ndss.org/resources/early-intervention/ (accessed 12 March 2018).</ref>]]
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| For more in depth developmental milestone charts, please see [http://www.healthforallchildren.com/wp-content/uploads/2013/04/A5-Downs-Instrucs-chartsfull-copy.pdf '''here''']<ref>Down Syndrome Medical Interest Group. PCHR insert for babies born with Down syndrome. Nottingham: Down Syndrome Medical Interest Group. www.healthforallchildren.com/wp-content/uploads/2013/04/A5-Downs-Instrucs-chartsfull-copy.pdf (accessed 21 March 2018). </ref>, and if you would like further description of milestones or to track your child’s progress at home, please see checklist provided [http://www.dsacc.org/downloads/parents/downsyndromedevelopmentalscale.pdf '''here''']<ref name=":3" />. While these milestones are generally agreed upon, studies targeting developmental milestones tend to only examine a small number of people. This makes the information less representative of the entire DS population. Also, researchers commonly compare people with DS to their non-DS counterparts of the same age. This is an invalid comparison, and it would be more correct to compare children with DS to non-DS individuals of the same mental age. Despite these limitations, the above listed milestones are widely used and considered accurate<ref>Frank K, Esbensen A. Fine motor and selfcare milestones for individuals with down syndrome using a retrospective chart review. Journal of Theoretical Social Psychology. 2015;89:719-729. https://onlinelibrary.wiley.com/doi/abs/10.1111/jir.12176 (accessed 20 March 2018). </ref>.
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| ==== '''''Physiotherapy for Developmental Milestones''''' ====
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| Physical characteristics of the child with DS such as low muscle tone, loose joints and decreased strength may limit the speed of mastery or alter the form of the developmental milestone. Persons with DS generally naturally overcome these challenges through perseverance.<ref name=":0" />.
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| The goal of physiotherapy is not to ‘speed up’ the rate of development. It is simply to facilitate the development of optimal movement patterns. Depending upon capabilities and adaptations made, physical compensations such as pain or inefficient walking patterns may occur. Physiotherapists are here to help with that! When considering motor skills in DS, the goal of a physiotherapist is to provide the building blocks to develop a solid physical foundation for movement and exercise in which your family member can build on for the rest of their life.
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| [[File:Building Blocks 3.jpg|center|frameless|493x493px]]
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| Physiotherapy sessions focusing on developmental milestones will be specifically tailored to your child’s current level of development. The physiotherapist will observe your child’s abilities and determine what skills should be learned next. As each person is different, skills will be taught in the way your child learns best. It is common for tasks to be broken into smaller parts and practiced using different methods based on individual learning styles and physical make up. A new idea developing in physiotherapy for persons with DS known as ‘tummy time’, discussed below, has also been shown to aid in timely achievement of motor skills Physiotherapists will often get family members involved with treatment. Practice at home is essential for mastery, and '''your''' participation is key. The physiotherapist will teach you how to:
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| * Use your child’s interests to encourage new skill development
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| * Build on already mastered skills
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| * Focus on what your child is willing to learn
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| * Practice often
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| * '''Be patient'''
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| {| class="wikitable"
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| !'''REMEMBER: When thinking about developmental milestones, the journey to get there may be different, but the destination is the same!'''
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| |}
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| === '''''Balance and Down Syndrome''''' ===
| |
| As mentioned above, it is common for children with DS to be delayed in reaching common milestones such as sitting independently, standing and walking. One of the contributing factors to the delay of these specific milestones is poor balance. It is well known that persons with DS are often considered ‘floppy’, ‘clumsy’, uncoordinated and have awkward movement patterns due to balance issues. These balance challenges often follow the child into their teen years and sometimes into adulthood<ref>Georgescu M, Cernea M, Balan V. Postural control in down syndrome subjects. The European Proceedings of Social and Behavioural Sciences. www.futureacademy.org.uk/files/images/upload/ICPESK%202015%2035_333.pdf (accessed 17 March 2018).</ref>. While impaired balance is difficult on its own, it may also impact development of other motor abilities and cognitive development. Being able to maintain balance allows for exploration, social interaction and overall freedom<ref name=":4">Malak R, Kostiukow A, Wasielewska A, Mojs E, Samborski W. Delays in motor development in children with down syndrome. Medical Science Monitor 2015;21:1904-1910. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500597/ (accessed18 March 2018).</ref>. This highlights the importance of addressing this issue.
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| {| class="wikitable"
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| |'''REMINDER: If you notice these qualities, do not worry. This is to be expected and can be improved upon with practice and patience!'''
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| |}
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| ==== '''''What is the Problem?''''' ====
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| * <u>Loose Ligaments</u>: Persons with DS have elastic/loose joints, allowing for a large range of movement. This may lead to joints being less stable and difficult to control, causing unbalanced behaviours.
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| * <u>Low Muscle Tone</u>: A symptom of DS is commonly a ‘floppy’ appearance, with little activity in the muscles at rest, impacting stationary balance. Floppiness does improve over time but can influence balance greatly in early years.
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| * <u>Slow Reaction Times/ Movement Times</u>: Persons with DS often are slower to react and move than their non-DS peers. This means that even if they are aware they are unsteady, they will take a longer time to react to this feeling, and once it is understood, their corrective movement will also be delayed. Both of these aspects add a challenge to balance.
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| * <u>Differences in Brain Size</u>: Persons with DS typically have smaller cerebellums, which is a part of the brain that contributes to the control of balance. The small size impacts its function, limiting balance reflexes, and causing blurry vision when completing tasks at high speed. Other parts of the brain are also smaller, creating issues with voluntary activities, walking technique and coordination.
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| * <u>Decreased Postural Control</u>: Typical posture in a person with DS is hunched over, with a rounded neck, which prevents the head and body from sitting over the pelvis. Posture is impacted by inaccurate messages being sent to the brain from the body’s sensory system. This leaves people with DS less capable of adapting or making anticipatory adjustments to changing environments<ref name=":4" /><ref>Costa A. An assessment of optokinetic nystagmus in persons with down syndrome. Experimental Brain Research 2011;8:110-121. https://www.sciencedaily.com/releases/2011/08/110824142850.htm (accessed17 March 2018).</ref><ref>Saied B, Hassan D, Reza B. Postural stability in children with down syndrome. Medicina Sportiva 2014;1:2299-2304. https://search.proquest.com/docview/1510494760/fulltextPDF/6606B032D8C04A9EPQ/1?accountid=12269 (accessed19 March 2018).</ref>.
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| ==== '''''Physiotherapy Interventions''''' ====
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| There are a wide range of physiotherapy interventions that can help your family member improve their balance. Some of them have been used for many years, while others are still developing and being introduced.
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| <u>'''Traditional'''</u>
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| Some commonly used interventions to improve balance in persons with DS are:
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| [[File:Yoga DS.jpg|right|frameless|498x498px|<ref>Clique Images. Yoga for Girls with Down syndrome. 2015. [Picture]. <nowiki>https://www.stocksy.com/1490017/yoga-for-girls-with-down-syndrome</nowiki> (accessed 21 March 2018).</ref>]]
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| * Stability Exercise (examples available '''[https://www.nhs.uk/Livewell/fitness/Pages/balance-exercises-for-older-people.aspx here]'''<ref>NHS. Balance Exercises. https://www.nhs.uk/Livewell/fitness/Pages/balance-exercises-for-older-people.aspx (accessed 20 March 2018).</ref>)
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| * Corrective positioning (examples available '''[https://www.youtube.com/watch?v=T6Mmv0-ShHU here]'''<ref>Down Syndrome Awareness. Our beautiful son with Down syndrome at Physical Therapy [Video]. 2011. https://www.youtube.com/watch?v=T6Mmv0-ShHU<nowiki/>(accessed 15 March 2018).</ref>)
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| * Stair climbing
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| * Yoga
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| * Hydrotherapy <ref>Gupta S, Rao B, Kumaran S. Effect of strength and balance training in children with down syndrome: a randomized control trial. Clinical Rehabilitation 2011;25:425-432. www.journals.sagepub.com/doi/pdf/10.1177/0269215510382929 (accessed 19 March 2018). </ref><ref name=":4" />
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| <u>'''Emerging'''</u>
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| Some new interventions being used to improve balance are:
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| * Hippotherapy
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| * Treadmill training
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| * Two-wheel bicycle training
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| * Tummy Time
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| * Perceptual-motor therapy
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| * Sensory integration training
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| These emerging physiotherapy techniques will all be discussed later!
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| ==== '''''What Can You Do to Help?''''' ====
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| # <u>Practice Makes Perfect</u>: As with everything in life, practice will improve performance. While it often takes more practice to improve performance of balance in a child with DS, it is possible to increase both speed and accuracy of movement.
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| # <u>Encourage Independent Movement</u>: When a person actively initiates a movement, the brain learns how to control the area being moved. This improves coordination and task performance.
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| # <u>Follow Individual Interests</u>: Your child is more likely to eagerly participate if the activity is one that is enjoyed. Try incorporating balance training into sports and games.
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| # <u>The Earlier the Better</u>: Starting balance practice early in a child’s life will allow for greater amount of learning time and increase muscle strength at a young age.
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| # <u>It’s Never Too Late</u>: Though it is harder to correct learned bad habits, practice at any time is helpful. It is never too late to start.
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| {| class="wikitable"
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| |'''FUN FACT: individuals with DS are more commonly visual learners. This means that they learn better by watching others or copying what they can see rather than responding to what is being said. Copy cat is a great game to help teach your child new tasks'''<ref>Welsh TN, Elliot D. The processing speed of visual and verbal movement information by adults with and without Down syndrome. Adapted Physical Activity Quarterly 2001;18:156-167.</ref>'''!'''
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| |}
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| === '''''Strength''''' ===
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| === '''''Reduced Levels of Physical Activity''''' ===
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| The evidence for physical activity levels in people with Down Syndrome is conflicting, with most depicting a highly sedentary lifestyle, where people with Down syndrome are not achieving the recommended guidelines for physical activity levels <ref name=":5">Esposito PE, MacDonald M, Hornyak JE, Ulrich DA. Physical activity patterns of youth with Down syndrome. Intellectual and developmental disabilities 2012 Apr;50(2):109-19.</ref><ref>Phillips AC, Holland AJ. Assessment of objectively measured physical activity levels in individuals with intellectual disabilities with and without Down's syndrome. PLoS One 2011 Dec 21;6(12):e28618.</ref>. As well as this, age related declines in physical activity levels have also been identified in the Down syndrome population <ref name=":5" /><ref>Shields N, Dodd KJ, Abblitt C. Do children with Down syndrome perform sufficient physical activity to maintain good health? A pilot study. Adapted Physical Activity Quarterly. 2009 Oct;26(4):307-20.</ref><ref name=":11">Buckley S. Increasing opportunities for physical activity. Down Syndrome Research and Practice 2007;12:18-19.</ref>), demonstrating that this is a lifelong issue that must be highlighted.
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| {| class="wikitable"
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| |[[File:Lightbulb DS.png|left|frameless|100x100px]]Did you know that the daily recommended levels of physical activity for children is at least 60 minutes of moderate to vigorous intensity activity. Similarly, adults should participate in at least 150 minutes of moderate aerobic activity each week, including at least two strength session in the week <ref name=":6">WHO | Physical Activity and Adults [Internet]. Who.int. 2011 [cited 9 April 2018]. Available from: <nowiki>http://www.who.int/dietphysicalactivity/factsheet_adults/en/</nowiki></ref><ref name=":12">WHO | Physical activity and young people [Internet]. Who.int. 2011 [cited 9 April 2018]. Available from: <nowiki>http://www.who.int/dietphysicalactivity/factsheet_young_people/en/</nowiki></ref>. Although people with Down syndrome may have decreased capacity for exercise compared to their peers without disability for lots of reasons, the guidelines clearly state that children with disabilities should meet the recommended guidelines or do as much physical activity as they are physically able to do<ref name=":9">Shields N, Blee F. Physical activity for children with Down syndrome. 2012.</ref>.
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| |}
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| Take a moment to consider how active your child has been over the past week. Do you think they are achieving their recommended daily activity levels? If yes, then great! However, if not, take the time now to try think of why this is happening. Are there specific reasons that you can identify from daily life which are stopping your child from being physically active?
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| Possible barriers which have previously been identified by parents as contributors to reduced participation in physical activity include behavioural characteristics of the individual with Down syndrome, alongside a lack of accessible programs and prioritisation of competing family responsibilities<ref name=":13">Barr M, Shields N. Identifying the barriers and facilitators to participation in physical activity for children with Down syndrome. Journal of Intellectual Disability Research. 2011 Nov 1;55(11):1020-33.</ref>.
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| ==== '''''What is the Problem?''''' ====
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| Individuals with Down syndrome have been found to have substantially higher rates of obesity compared to the general population<ref>Rimmer JH, Yamaki K, Davis BM, Wang E, Vogel LC. Peer reviewed: Obesity and overweight prevalence among adolescents with disabilities. Preventing chronic disease. 2011 Mar;8(2).</ref>. Often occurring early on in childhood, obesity was found to remain stable from childhood into adulthood, with slight increases after puberty<ref>Basil JS, Santoro SL, Martin LJ, Healy KW, Chini BA, Saal HM. Retrospective study of obesity in children with Down syndrome. The Journal of pediatrics. 2016 Jun 1;173:143-8.</ref>. Obesity, now recognized as a major health risk for people with Down syndrome<ref>Bull MJ. Health supervision for children with Down syndrome. 2011.</ref>, increases the chance for the development of other health problems such as diabetes, increased blood pressure, dyslipidaemia, early markers of cardiovascular disease, musculoskeletal disorders, breathing difficulties with worsening of sleep apnea and psychological effects including reduced quality of life<ref name=":6" /><ref name=":7">Artioli T. Understanding Obesity in Down’s Syndrome Children. Journal of Obesity and Metabolism. 2017 1: 101.</ref>.
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| The causes of obesity in the Down syndrome population can be divided into physiological causes and behavioural causes. Physiological causes may include conditions such as hypothyroidism, decreased metabolic rate, increased leptin levels (leptin is a hormone which helps regulate food intake by stimulating satiety), short stature and low levels of lean body mass<ref name=":7" />. Behavioural tendencies such as negativity and inattention behaviour may lead to becoming barriers that prevent important and necessary dietary and lifestyle changes to occur<ref name=":7" />.
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| [[File:Shelly Obesity Picture.png|center|frameless|519x519px]]
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| Aerobic fitness in both youth and adults with Down syndrome is reduced compared to their peers<ref>Mendonca GV, Pereira FD, Fernhall BO. Reduced exercise capacity in persons with Down syndrome: cause, effect, and management. Therapeutics and clinical risk management. 2010;6:601.</ref><ref name=":8">Baynard T, Pitetti KH, Guerra M, Unnithan VB, Fernhall B. Age-related changes in aerobic capacity in individuals with mental retardation: a 20-yr review. Medicine and science in sports and exercise. 2008 Nov;40(11):1984-9.</ref>, with studies finding adolescents and young adults with Down syndrome having comparable aerobic fitness to old adults (60years +) with no disabilities but with heart disease<ref name=":8" />. As well as aerobic abilities, reduced muscular strength and reduced bone mineral density levels by 26% compared to peers have been identified in the Down syndrome population<ref>Angelopoulou N, Matziari C, Tsimaras A, Sakadamis V, Mandroukas K. Bone mineral density nd muscle strength in young men with mental retardation. Calcified Tissue International 2000;66:176-180.</ref>.
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| ==== '''''How Can Being Physically Active Help?''''' ====
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| Overall, strong evidence suggests that regular and adequate physical activity can lead to numerous health benefits. Can you think of any? See how many you can come up with before you check out the picture below!
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| [[File:Shelly Physical Activity.png|center|frameless|590x590px]]
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| Physical activity participation has a really positive impact on people’s health, including the ability to improve cardiovascular, metabolic, musculoskeletal and psychosocial health profiles in people with Down syndrome<ref>Rowland T. Physical activity, fitness, and children. Physical activity and health. 2007:259-70.</ref>.
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| As previously acknowledged in the Developmental Milestones section of this Physiopedia Page, onset of independent walking in children with Down syndrome occurs roughly 1 year later in comparison to children with typical development<ref>Ulrich BD, Ulrich DA. Spontaneous leg movements of infants with Down syndrome and nondisabled infants. Child development. 1995 Dec 1;66(6):1844-55.</ref>. It is thought that perhaps low levels of physical activity during infancy may contribute to this<ref name=":10">Pitetti H, Baynard T, Agiovlasitis S. Children and adolescents with Down syndrome, physical fitness and physical activity. Journal of Sport and health Science 2013;2:47-57.</ref> as earlier walking onset has been observed in infants with Down syndrome who performed greater amounts of high intensity activity at ~ 1 year of age<ref>Lloyd M, Burghardt A, Ulrich DA, Angulo-Barroso R. Physical activity and walking onset in infants with Down syndrome. Adapted Physical Activity Quarterly. 2010 Jan;27(1):1-6.</ref>. Changes to physical activity levels in infants with Down syndrome has been suggested to be associated with their motor development, encouraging the importance of early interventions<ref name=":10" />.
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| Increased physical activity levels have been found to reduce body fat percentage in children with Down syndrome<ref>Ulrich DA, Burghardt AR, Lloyd M, Tiernan C, Hornyak JE. Physical activity benefits of learning to ride a two-wheel bicycle for children with Down syndrome: a randomized trial. Physical therapy. 2011 Oct 1;91(10):1463-77.</ref>. A year after learning to ride a two wheeled bicycle, a group of children with Down syndrome had on average, 6% less body fat and were more physically active then their control peers. Following a 12 week training programme consisting of 30 minute cardiovascular exercise (using stepper machines, stationary bikes, crosstrainers and treadmills) and 15 minutes of strength exercises, 3 times a week, adults with Down syndrome had significant improvements in their cardiovascular fitness and muscular strength, with some reductions in body weight<ref>Rimmer JH, Heller T, Wang E, Valerio I. Improvements in physical fitness in adults with Down syndrome. American Journal on Mental Retardation. 2004 Mar;109(2):165-74.</ref>. After completing a 12 week programme of either cardiovascular training 3 times a week or resistance training 3 times a week, young adults with Down syndrome experienced significant reductions in heart rates during the middle stages of max exercise testing, suggesting that the heart had become more efficient from being physically active<ref>Seron BB, Modesto EL, Stanganelli LC, Carvalho EM, Greguol M. Effects of aerobic and resistance training on the cardiorespiratory fitness of young people with Down Syndrome. Revista Brasileira de Cineantropometria & Desempenho Humano. 2017 Aug;19(4):385-94.</ref>. Benefits to psychosocial factors have also been experienced following physical activity participation in people with Down syndrome. Following 12 weeks of cardiovascular and resistance training, combined with health education, significant improvements in life satisfaction and attitudes towards physical activity as well as lower depression levels, were recorded<ref name=":15">Heller T, Hsieh K, Rimmer JH. Attitudinal and psychosocial outcomes of a fitness and health education program on adults with Down syndrome. American Journal on Mental Retardation. 2004 Mar;109(2):175-85.</ref>.
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| Alongside these health benefits, other reasons physical activity is so important for people with Down syndrome are it will help:
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| * Develop physical and social skills
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| * Establish a regular routine around being physically active, leading to better habits in the future
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| * Prevents secondary conditions associated with having Down syndrome including diabetes, osteoporosis and dementia<ref>Shields N. Getting Active: What Does it Mean for Children With Down Syndrome?. 2016.</ref>
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| From the evidence, it is clear that physical activity is integral to a person with Down syndrome’s health, fitness and wellbeing<ref name=":9" />.If you feel unsure about what kind of activities to encourage your child to take part in, or would like to know what kind of physical activity groups are out there, then hopefully this next section will provide you with some useful information!
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| ==== '''''Interventions to improve physical activity levels''''' ====
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| There are increasingly more opportunities and ways to help improve the physical activity levels of the person with Down syndrome in your life. Previous group interview sessions with parents have highlighted the need for information on physical activity interventions to be available to them, which should include a range of individual activities that would interest the child with Down syndrome and group activities for the family<ref name=":14">Menear K. Parents’ perceptions of health and physical activity needs of children with Down syndrome. Down Syndrome Research and Practice. 2007 Jul 30;12(1):60-8.</ref>. We hope that this section will achieve these goals.
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| According to the World Health Organisation, the recommended physical activity requirements for children as previously mentioned, is at least 60 minutes of moderate to vigorous intensity daily physical activity.
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| {| class="wikitable"
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| !
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| !Moderate Activity
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| !Vigorous Activity:
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| |-
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| |Aim
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| |Increase heart rate and breathing and cause a light sweat
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| |Make the heart and lungs work harder than moderate intensity activity
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| |-
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| |Example
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| * Brisk Walking
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| * Active Play
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| * Slow Bicycling
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| * Water aerobics
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| * Slow Dancing <ref name=":12" />
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| * Swimming
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| * Tennis
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| * Running
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| * Fast Bicycling
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| * Faster Dancing
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| * Hiking
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| |}
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| Evidence is also growing to support other fun and creative ways for your child to be physically active, including:
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| * Treadmill Training
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| * Two Wheeled Bicycle Riding
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| * Therapeutic Horseback Riding (Hippotherapy)
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| Structured accessible programs that make adaptations for children with DS have been identified as key to facilitating participation in physical activity<ref name=":13" />. As well as that, it has been recommended that introducing diverse and interesting physical activity programmes which avoid over complicated tasks, may be more enjoyable for people with Down syndrome<ref>Merzbach V, Gordon D. The benefits of exercise to a Down’s Syndrome population [Internet]. Intellectualdisability.info. 2015 [cited 8 April 2018]. Available from: <nowiki>http://www.intellectualdisability.info/physical-health/articles/the-benefits-of-exercise-to-a-downs-syndrome-population</nowiki></ref>.
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| ==== '''''Common Worries for Parents- Can You Relate?''''' ====
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| If you are worried and feel uncertain about anything you have read, don’t be, for you are not alone!
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| Some of the most common worries reported by parents of people with Down syndrome, surrounding a discussion on physical activity participation levels include:
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| * They fear that their child will not remain active in the future
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| * They want to help their child be more active however feel they don’t have enough time in the day as well as manage their other family needs
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| * They find it difficult to motivate their child to be physically active
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| * They want to help their child avoid obesity in later life but are unsure how
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| * They wish they provided earlier support and more opportunities to their child to learn sporting skills
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| * They feel they do not receive enough information to know how to make the best decisions on what activities are best for their child
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| * They worry about the cost of organised programs and not being able to afford keeping their child enrolled in them <ref name=":14" /><ref name=":11" />
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| ==== '''''What Can You Do to Help?''''' ====
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| <blockquote>“There may still be a need to raise expectations of what young people with Down syndrome can achieve among parents, professionals and the wider community”<ref name=":11" /></blockquote>One of the most important facilitators identified for improving physical activity participation levels of people with Down syndrome is the support and motivation they receive from their family and carers<ref name=":13" />. When interviewed, parents felt their child was more likely to be active when the physical activity was enjoyable and included being with friends or their siblings<ref name=":11" /><ref name=":14" />. Introducing physical activities into your child’s routine and encouraging a familiarity with them may also help facilitate improved participation<ref>Mahy J, Shields N, Taylor NF, Dodd KJ. Identifying facilitators and barriers to physical activity for adults with Down syndrome. Journal of Intellectual Disability Research. 2010 Sep 1;54(9):795-805.</ref>. Encouraging your child to keep an activity or exercise log and organising a routine check of it alongside providing motivation, has previously been a suggested as a helpful method to increase physical activity participation<ref name=":14" />.
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| Other tips to help encourage your child to be physically active include:
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| * Choose an activity that your child will enjoy or ask your child what activity THEY want to do
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| * Encourage childhood games that are traditional and active such as hop scoth, hide and seek, obstacle courses
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| * Use simple way to get your child to choose more physically active options in daily life such as walking to school (if feasible), taking the stairs option instead of the lift, walking your family dog
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| * Keep things simple; running, jumping, dancing are great physical activities to build your child’s fitness and there are no cost requirements, only for you to join in yourself and get fit too!!
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| * Give your child lots of positive and encouraging feedback <ref name=":9" />
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| === '''''Sensation and Memory''''' ===
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| People with Down syndrome can present with sensory delays as well delays in cognitive, physical, motor and social development<ref name=":17">BruniI M.. Fine motor skills for children with Down syndrome. 2nd ed. Bethesda: Woodbine House Inc., 2006.</ref>. Being unable to process sensory information from the environment can be both frustrating and challenging, often leading to inappropriate behaviour as a response<ref>Lashno M. Sensory integration: observations of children with Down syndrome and Autistic spectrum disorders. Disability Solutions 1999;3:31-35.</ref>. As humans, we also use sensory information to gain experience, learn and interact with the world. When sensory feedback is limited, it can impact progress in other areas such as motor development<ref name=":17" />.
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| Another challenge the brain can face for those with Down syndrome is Alzheimer’s which is the most common cause of dementia. These two terms are commonly used interchangeably but are in fact different diseases. Dementia typically involves symptoms including memory loss, difficulties with thinking, problem-solving and/or language and these occur due to damage to the brain such as that caused by Alzheimer’s.
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| As stated above, having Down syndrome does not mean you will get Alzheimer’s! Current estimates state that roughly 50% of people with Down syndrome will develop dementia due to Alzheimer’s as they age and symptoms only begin to show in the individuals 50s or 60s<ref>National Institute on Ageing. Alzheimer’s disease in people with Down syndrome. <nowiki>https://www.nia.nih.gov/health/alzheimers-disease-people-down-syndrome</nowiki> accessed 23 March 2018).</ref>.
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| There are lots of articles and pages discussing the link between Down syndrome and Alzheimer’s which can be tricky to understand and can often sound scary, especially to a parent or loved one of someone with Down syndrome. This link '''[http://www.ndss.org/wp-content/uploads/2017/11/Aging-and-Down-Syndrome.pdf here]'''<ref>National Down syndrome Society. Aging and Down syndrome: a health and well being guidebook. www.ndss.org/wp-content/uploads/2017/11/Aging-and-Down-Syndrome.pdf (accessed 5 April 2018).</ref> is a guidebook which covers the general process of ageing for persons with DS, including some information on Alzheimer’s (pgs 16-24) which you may find less intimidating but still informative!
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| ==== '''''What is the Problem?''''' ====
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| === '''''Mental Health and Emotional Wellbeing''''' ===
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| It is not uncommon for individuals with Down syndrome to experience challenges with emotional behaviours and mental health. Children with Down syndrome may have difficulties with communication skills, problem solving abilities, inattentiveness and hyperactive behaviours. Adolescents may be susceptible to social withdrawal, reduced coping skills, depression, anxiety, obsessive-compulsive behaviours and sleep difficulties. Adults wtih DS may have similar experiences as adolescents, with further complications of dementia later in life<ref>Van Germeren-Oosterom H, Fekkes M, Buitendijk S, Mohangoo A, Bruil J, Van Wouwe J. Development, problem behaviour, and quality of life in a population based sample of eight-year-old children with Down syndrome. Plos One 2011;6:7. </ref>.
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| Here are some more details to help you recognise the signs of different mental health conditions. After gaining a good understanding of these behaviours, you will be more familiar with approaches to assist your family member with Down syndrome to cope with these challenges in positive ways.
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| ==== '''''Depression''''' ====
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| Adolescents and adults, and sometimes children with Down syndrome may display depressive symptoms such as sadness, severe social withdrawal, or avoidance of activities that were previously enjoyable. These behaviours tend to be associated with an event that, to you, may seem like a normal life occurrence, but is perceived as a great stress to someone with Down syndrome. Such events may include the loss of a household pet, a friend or a sibling who moves away, an illness in the family, or the extended absence of a teacher. Individuals with Down syndrome can be particularly sensitive to changes in their environment and if they do not cope appropriately, this may cause significant psychological distress<ref>National Down Syndrome Society. Mental health issues and Down syndrome. <nowiki>https://www.ndss.org/resources/mental-health-issues-syndrome/</nowiki> (accessed 30 March 2018).</ref>. Challenges may arise including withdrawal from social and physical activities, which may prolong important development in these areas and impact quality of life. There are a variety of treatment options for depression, including counselling, identifying coping methods for stressful events, medications, and participation in exercise and enjoyable activities<ref name=":16">National Down Syndrome Association. For families and carers: depression. <nowiki>https://www.downs-syndrome.org.uk/for-families-and-carers/health-and-well-being/depression-2/</nowiki> (accessed 02 April 2018).</ref>.
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| ==== '''''Anxiety''''' ====
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| If your family member with Down syndrome experiences anxiety, they may display behaviours such as restlessness, panic, fidgeting or excessive worrying, which is often stimulated by transition to a new or unfamiliar situation or environment. For example, going from home to a different environment such as school, a disruption of a daily routine, or anticipation of a new event<ref>Evans D, Canavera K, Kleinpeter F, Maccubbin E, Taga K. The fears, phobias and anxieties of children with autism spectrum disorders and Down syndrome: comparisons with developmentally and chronologically age matched children. Child Psychiatry and Human Development 2005;36:3-26.</ref>. This may prove challenging when introducing new activities to individuals with DS so it is important to plan ahead and incorporate new activities gradually into a routine that they are happy with.
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| ==== '''''Routinised and Compulsive-like Behaviours''''' ====
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| Children and adults with Down syndrome have a tendency to follow familiar routines which may appear repetitive, compulsive or ritualistic<ref name=":0" />. They may insist on undergoing the same household routines, require situations to be ‘just right’ and participate in the same activities. These behaviours are often performed to avoid feelings of anxiety<ref>Glenn S, Cunningham C, Nananidou A, Prasher V, Glenholmes P. Routinised and compulsive-like behaviours in individuals with Down syndrome. Journal of Intellectual Disability Research 2015;59:1061-1070.</ref>. It is important to introduce physical and social activities early in life so they become part of your child’s routine and encourages achievement developmental milestones. From there, creating coping strategies and planning ahead will ease your child with Down syndrome into trying new activities as they get older.
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| ==== '''''Hyperactive and Inattentive Behaviours''''' ====
| |
| Children with Down syndrome may appear to be easily distracted, impulsive, frequently restless and on the go and they may have difficulty maintaining attention on tasks. This behaviour may persist into adulthood, however tends to diminish with age<ref>Selikowitz M. Down syndrome the facts. 2nd ed. Oxford: Oxford University Press, 1997. </ref>. It often causes a barrier to participation in physical activities due to non-compliance and the need for increased supervision<ref name=":13" />. There are medications which are said to reduce these behaviours, however they often trigger adverse side effects. Instead, it can be beneficial to channel this hyperactive energy into participating in activities that your child enjoys, or find an activity that provides a calming effect.
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| ==== '''''Physiotherapy Interventions''''' ====
| |
| Physical activity has demonstrated excellent benefits for the mental well-being of individuals with Down syndrome. The benefits include greater life satisfaction, reduced risk of depression, increased self-esteem, and improved social and behavioural skills<ref name=":15" /><ref name=":13" />. Any activity which promotes social interaction and friendship further enhances mental and emotional well-being. Some interventions may include:
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| * Therapeutic Horseback Riding (Hippotherapy)
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| * Two wheeled bicycle training
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| * Sensory integration training
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| * Perceptual-motor therapy
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| * Hydrotherapy
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| * Yoga
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| ==== '''''What Can You Do to Help?''''' ====
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| * Work with a professional that has experience with individuals with intellectual disabilities to develop a behaviour treatment plan. They can also refer you to interventions to address specific behaviours
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| * Take advantage of every opportunity you have to interact with others! While most people learn the majority of their social skills in school and work, people with Down syndrome can “make every contact count”. Whether it is in therapy, school, work or at home, the opportunity to learn is everywhere!
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| * Support groups and therapies are a fantastic way of hitting two bases at once; therapy and socialising.
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| * Develop a routine and stick to it. Try using visual schedules! This method uses pictures or books to help your family member prepare for upcoming events such as beginning a new school year, going to a friend’s party or moving into a new house.
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| * Plan for difficult situations. Try using social stories!
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| * Ensure to promote positive interactions and reduce the negative ones. Make time for fun every day!
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| * Always encourage positive behaviours and positive attitudes <ref name=":0" /><ref name=":16" /><ref>Stein D. Behaviour and Down syndrome: a practical guide for parents. Boston: Children’s Hospital Boston, 2002.</ref>
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| [[File:Mental Health Pic 1.png|center|frameless|633x633px]]
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| An example of a visual schedule. If you have time, you can sit down and make one together!
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| For further information on mental health and learning disabilities please click '''[https://www.rcpsych.ac.uk/pdf/Depression%20ld%20final.pdf here]'''<ref>NHS Leicestershire. Mental Health and Learning Disabilities. https://www.rcpsych.ac.uk/pdf/Depression%20ld%20final.pdf (accessed 25 March 2018).</ref>, and for tips on improving the mental health of people with learning disabilities please click '''[https://www.mentalhealth.org.uk/sites/default/files/feeling-down-report-2014.pdf here]'''<ref>Burke CK. Feeling down: improving the mental health of people with learning disabilities. https://www.mentalhealth.org.uk/sites/default/files/feeling-down-report-2014.pdf (accessed 4 April 2018).</ref>. Other useful links may be found at the end of this wiki.
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| == Common Myths Debunked ==
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| Before we begin, we would like you to watch this short video. This video will address many common misconceptions about DS and ensure you are in the correct mindset about DS while navigating our learning resource.{{#ev:youtube|AAPmGW-GDHA}}
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| == Conclusion ==
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| == Continued Learning ==
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| We realise that this resource was developed with a large emphasis on the role of physiotherapy in the management of Down syndrome. It is likely that you have other questions which have not been answered on this page. Below are links to external websites which we hope will aid in answering any lingering questions.
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| [https://www.aapos.org/terms/conditions/45 Down syndrome - Eye Problems]
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| [https://www.ndss.org/resources/sexuality/ Sexuality and Down syndrome]
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| [https://www.ndss.org/resources/speech-language-therapy/ The Role of Speech and Language Therapists in Down Syndrome]
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| [https://library.down-syndrome.org/en-us/research-practice/12/2/strategies-address-challenging-behaviour-young-down-syndrome/ Strategies to address challenging behaviour in young children with Down syndrome]
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| [http://dsagsl.org/wp-content/uploads/2014/04/Behavior-Guide-for-Down-Syndrome.pdf Behaviour and Down syndrome: A practical guide for parents]
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| [https://www.ndss.org/resources/managing-behavior/ Tips on Behavioural Managment]
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|
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|
| | == Resources == |
| | The following “Ted Talk” presented by Karen Gaffney, a person with Down Syndrome, explores numerous contemporary thoughts surrounding DS and challenges society's preconceptions of people with DS.{{#ev: youtube| HwxjoBQdn0s}} |
| == References == | | == References == |
|
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| see [[Adding References|adding references tutorial]].
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| <references /> | | <references /> |
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| == References for Videos ==
| | [[Category:Queen_Margaret_University_Project]] |
| BBC Three. Things people with down syndrome are tired of hearing [Video]. 2016. https://www.youtube.com/watch?v=AAPmGW-GDHA (accessed 16 March 2018).
| | [[Category:Paediatrics]] |
| | | [[Category:Down Syndrome - Trisomy 21]] |
| Tedx Talks. I have one more chromosome. So what? [Video]. 2015. https://www.youtube.com/watch?v=HwxjoBQdn0s (accessed 12 March 2018).
| | [[Category:Paediatrics - Conditions]] |
| | | [[Category:Non Communicable Diseases]] |
| [[Category:Queen_Margaret_University_Project]] [[Category:Projects]] | | [[Category:Conditions]] |
| | [[Category:Genetic Disorders]] |
| | [[Category:Course Pages]] |
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