Health and wellbeing
As recently as the 1950s, life expectancy for people with Down syndrome was as low as 15 years of age. In recent times, progress in medical and social sciences has very much improved the health and the quality of life enjoyed by people with Down syndrome. In Australia today, most people with Down syndrome will enjoy a long, happy and healthy life.
There are some common health issues and some more serious medical conditions that are more likely to occur in people with Down syndrome than in other people. People with Down syndrome often have lowered general immunity compared to the general population. This means that they may be more susceptible to infections and common illnesses, especially in early childhood. However, a diagnosis of Down syndrome does not mean that someone cannot have a healthy life. Some people with Down syndrome are very fit and healthy, while others experience a range of health issues.
Regular health checks may be required for specific issues. Living a healthy lifestyle is important, including keeping fit and getting regular exercise.
Even with a healthy diet, there can be a tendency for both children and adults with Down syndrome to become overweight. An active lifestyle with plenty of physical activity helps to counterbalance this tendency and encourages general health and fitness.
A small percentage of people with Down syndrome will require a high level of living support. This may be because of complex health issues or a greater degree of intellectual disability.
The most important influence on early development is daily interaction and activities within the family.
Frequently Asked Questions on conventional and alternative therapies Back to top
When the state and territory Down syndrome associations were established over thirty years ago, one of their key functions was to locate what little relevant information about Down syndrome was available and to disseminate it amongst parents. Today’s parents face the opposite problem – the advent of the web has allowed parents to access a vast array of information. But quality, validity and relevance vary enormously and parents are confronted with the enormous task of attempting to sift through to find the information that is most useful. There are also companies and organisations hoping to exploit vulnerable parents for commercial gain. The role of Down Syndrome Australia and the state and territory associations is increasingly to filter the information available to identify the most useful, relevant, accurate, up to date resources. This includes trying to establish an evidence base for claims made and warning parents of predatory companies and organisations.
Currently most parents will search the Internet for information after being told their child has Down syndrome. The Internet can be a powerful tool but it can also be incredibly overwhelming. It is full of different types of therapies that claim to assist and improve, and sometimes there are claims to "cure" children with Down syndrome. There are blogs, forums and websites with competing and contradictory claims and trying to find reliable, consistent information can seem impossible.
Parents should feel able to confidently make their own decisions about the best therapies for their child and their family. Down Syndrome Australia has put together the following frequently asked questions (FAQ) resource to help you understand the range of conventional and alternative therapies and assist you in assessing and choosing therapies for your child.
- What are ‘conventional therapies’?
- What are ‘alternative therapies’?
- How do we obtain evidence that a therapy works?
- How can we use the information generated by current clinical trials?
- How do we check whether a particular therapist or therapy is legitimate?
- How can we determine if the therapy is right for us?
- How do we keep informed about the latest medical and therapeutic advances?
1. What are ‘conventional therapies’? Back to top
Conventional therapies are those that are used by health and allied health professionals that have shown improved outcomes for people with Down syndrome by extensive scientific testing with measurable results. For example, many studies have shown that the following therapies or practices can improve the quality of life for people with Down syndrome:
- Living a life of inclusion within families and society rather than life in an institutional setting;
- Participation in an early childhood intervention program involving regular physiotherapy, occupational therapy and speech therapy;
- Regular oversight by a health professional such as a paediatrician, to monitor and treat any health problems as they arise; and
- A healthy lifestyle including a well-balanced diet and exercise.
These therapies are promoted and recommended because they have been rigorously demonstrated, scientifically, to have positive outcomes. That is, they are ‘evidence-based’.
- They are generally low cost or subsidised by the government.
- They are often easily incorporated into the daily routines of families; and
- They are generally available to families across the country
2. What are ‘alternative therapies?’ Back to top
Alternative therapies are therapies that are outside of conventional medical and allied health practice. While there may be many anecdotal reports about various types of therapy, the benefits are usually not supported by rigorous scientific testing. The following is a list of popular alternative therapies but is not an exhaustive list:
- Intensive nutritional supplementation
- Therapies based on psychomotor patterning
- NAETS - Nambudripad's Allergy Elimination Techniques
- Cranial osteopathy
3. How do we obtain evidence that the therapy works? Back to top
The gold standard in testing both the safety and the efficacy of any therapy is a large, randomised, double blind controlled study, known as RCT. This requires there to be a control group who are not receiving the therapy being tested, so that outcomes can be compared. If a therapy claims to be supported by scientific evidence, the factors to consider are:
- Adequate sample size;
- Duration of study;
- Adequacy of control group;
- Independence of the experimenters;
- Repeatable results; and
- Human trials
Many alternative therapies include claims that they are of benefit to children with Down syndrome; however it is important to check whether there is any evidence that shows that the long-term outcomes for the children having the therapy / treatment are beyond the typical range. Claims supported only by ‘before and after’ photographs can be particularly deceptive.
You may like to consider asking questions about the lack of published peer reviewed research – especially when claims of many years’ experience (sometimes over 30 years of treatment) have been made. It is usual practice for therapists to publish evidence to back up their claims. This is how the widely available therapies came to be ‘conventional’. Be aware of the range of techniques used to counteract this deficiency but note that the bottom line is that the claims remain unproven.
Some therapies move beyond physical manipulation towards chemical treatments. In these cases, we draw your attention to a statement supported by most of the leading Down syndrome researchers in the world. This statement needs to be taken seriously http://www.down-syndrome.org/statements/2106/
4. How can we use the information generated by current clinical trials? Back to top
There is currently a great deal of research underway regarding improvement of cognitive ability in people with Down syndrome, including a clinical trial in Australia. This research is adhering strictly to the RCT method, to ensure that their findings are evidence-based and provide reliable data on the safety of the treatment, as well as whether there are real benefits regarding cognitive ability. The results won’t be known for at least a couple of years. Until the trial is complete and results are published, it is not safe for non-participants in the study to adopt the treatment. In the past, studies have been terminated early when adverse effects were observed. In the meantime, consider carefully whether a therapy you are considering is both safe and effective, based on real evidence.
5. How do we check whether a particular therapist or therapy is legitimate? Back to top
a. What is the background or experience of the practitioner/developer?
You may like to think about who is selling the product or service to you. Some investigation on the training and background of the practitioner may be helpful. Is the practitioner a registered member of a professional body that has a requirement for continuing professional education? Is the practitioner a member of a recognised industry oversight body that includes a complaint process? Have any adverse claims about the product/service or practitioner been made and is the basis of those claims of concern?
b. Is the therapy responsible for noticed improvement?
Children with Down syndrome learn and develop new skills whether they are undertaking a particular therapy or not. If a child is on multiple therapies at the same time, it can be very difficult to attribute improvement to a particular intervention when it may be simply natural development.
Research does show that children with strong parent-child engagement have better developmental outcomes. Therefore therapies that require a high level of engagement – doing lots of things together – may be getting benefits from that engagement, rather than actual therapeutic benefit.
c. Is the motivation behind the therapy genuinely helpful?
Sometimes parents feel external pressure for their child to reach certain milestones by a specific time. Ask yourself whether the therapy is designed to help the child or help the parent cope with negative social stereotypes about Down syndrome by "fixing" certain characteristics. Consider the benefit for the child that comes when their family loves them for who they are.
6. How can we determine if the therapy is right for us? Back to top
a. How much does it cost? How much time does it involve? Is it local and accessible?
One thing that proponents of certain therapies often don't mention is what they had to sacrifice in order to pursue it. Does the therapy cost more money than you have or more time than you can afford? Does it come at the expense of other important things to the family or other family relationships? Weigh up potential sacrifices with potential benefits. Is it worth reaching a milestone a few months earlier if you have to re-mortgage your house or put strain on a marriage to achieve it? We advise you to tread cautiously, particularly when high costs are involved.
b. Is guilt used as motivation?
Parental guilt is not new and it can be heightened when parenting a child with a disability. It can feel as though you should always be doing more for your child with Down syndrome.
Although we all want the best for our kids, sometimes we lose sight of the fact that a child's development can come from many sources such as spending time in a variety of stimulating places or having meaningful interactions with other people. There are great opportunities for growth and development in our everyday activities as well as the more structured, formal therapies.
Many therapies trade on parental hope (especially parents of very young children), and some even imply that only families that ‘really’ love their person with Down syndrome undertake their programs. It is important to not be overcome by guilt at this point, but to again check whether there is evidence that the long-term outcomes of the therapy are beyond the normal range for people with Down syndrome.
7. How do we keep informed about the latest medical and therapeutic advances? Back to top
Down Syndrome Australia works hard to stay across advances in medicine and therapeutic interventions that improve the lives of people with Down syndrome. We have robust internal practices to ensure that the research we support is evidence based. The state and territory associations form a national information community that keeps families informed and up-to-date. The degree of scrutiny of new therapies leaves us very confident that if a therapy currently viewed as ‘alternative’ showed evidence of significant advantages, the global Down syndrome community would ensure they became ‘conventional’ very quickly.
It goes without saying that all parents of children with Down syndrome want the best for their loved ones. Down Syndrome Australia encourages all families considering any therapy for their child to conduct your own research, looking at all aspects, positive and negative to help make up your mind. Do not rely on promotional material, or anecdotal evidence alone.
Please feel welcome to contact your state or territory association to talk through these questions or others you may have.
The National Disability Insurance Scheme also has a helpful document on the seven key principles of Early Childhood intervention.
This document (PDF) elaborates on the seven key principles identified by an expert group, listing the concepts underlying the brief statements. Each principle also has descriptive statements illustrating what the principle should “look like” in practice. There are also descriptions of what it “doesn’t look like” because too often those practices are still being used.
These additional links may also be helpful: