Physiotherapy and Down Syndrome Observation

Newton, Puri and Marder (2015) state Down syndrome (DS) is not classed as a medical condition, but happens when an individual has a full or partial extra copy of chromosome 21. This surplus of genetic material causes the development of an individual to differ from the majority of the population having 23 pairs of chromosomes, often resulting in a display of certain characteristics commonly associated with those who have DS, such as learning disabilities (National Down Syndrome Society, 2019). DS is the most common chromosomal disorder with approximately 6000 births in the United States each year, and has only one associated specific risk factor; a higher maternal age (Rasmussen, Whitehead, Collier, & Frías, 2008). Since parents are postponing family until later in life frequency of this condition is set to further increase. Furthermore, the individuals themselves are also experiencing increased longevity in common with the general population, which brings with it all the usual ageing considerations, such as Alzheimer’s disease (AD) that is a syndrome which presents with numerous co-morbidities (Alzheimer's Research UK, 2018).

These factors combine to create increased demand for social and clinical care. As a result, it is a growing field of research that will noticeably inform the way this condition is managed in the future (National Down Syndrome Society, 2019). When AD affects those under 65 years of age, it is referred to as early onset dementia (Alzheimer's Research UK, 2018). In Mr Brown’s case, this early onset dementia coupled with mild learning disabilities has resulted in mobility and swallow changes, meaning the assessment and management will require a multidisciplinary team (MDT) approach to give Mr Brown the best care available (Taylor, Shewbridge, Harris, & Green, 2013). There are many paths to consider, the following paper will aim to critically evaluate different approaches with the intention of concluding the most favourable plan, for both the mental and physical health of Mr Brown.

It was not until 1970, when the Education Act specified that children with mental disabilities were able to take part in general education allowing them to build the skills necessary to help within everyday life with the prospect of finding a job (UK Legislation, 1970). Naturally societal attitudes have since changed and those with intellectual disabilities are now accepted, resulting in more effort being applied to the understanding and ways of helping those with DS. This means that from Mr Brown’s current situation, a physiotherapist should understand it is highly likely that the MDT would need to be involved, specifically comprising of an occupational therapist (OT) and speech and language therapist (SALT). This case would need to be approached as a team, with struggles of chew and swallow being lead by a member of the SALT team, of which the physiotherapist may need to refer to if they are the first point of call (Pring, Flood, Dodd & Joffe, 2012). Additionally, a referral to an OT may be necessary depending on the level of mobility deterioration and progression of early onset dementia, as they may need to modify the environment through implementing special equipment such as a commode in the bathroom or hand rail on the staircase presumably if living in a house to promote independent living where possible (Norris, 2018).

The main role of the physiotherapist would be to address the deterioration in mobility, which can potentially lead to decreased activities of daily living (ADL’s) leading to mobility issues, eventually increasing the level of dependency (Barnhart & Connolly, 2007). The multitude of benefits associated with exercise is well known and somewhat popular in today’s society, but it has also been shown to be a key element in reducing or delaying the symptoms of early onset dementia by not only delaying brain tissue loss, but stimulating new cell growth through increased bloody flow (Fjellman-Wiklund et al. 2016). From this, we can deduce that an exercise plan completed at a community centre or local gym, or home exercise programme could be essential for Mr Brown. A study conducted by Shields, Taylor, & Dodd (2008) comprising of 20 participants, explores the effects of a progressive resistance training programme on the physical function of adults with DS, in addition to any improvements of muscle function. The type of analysis used was a randomised control trial (RCT), which is considered to be the highest form of clinical trial, significantly minimising the chance of selection bias, further ensuring a fair result (Berry, 2017). The study consisted of both an intervention and control group, whilst the intervention group completed two resistance sessions per week comprising of three lower body and three upper body exercises for a total of 10 weeks, the control group were to go about their normal activities (Shields et al. 2008). There were positive findings in terms of upper body muscle strength and endurance, resulting in improved functional task ability when tested with a shelf stacking outcome measure, which would be beneficial in Mr Brown’s case to maintain his capability when partaking in his manual recycling job.

Despite these positive results, Mr Brown would also highly benefit from an increase in lower limb strength to ensure his ability to catch the bus to work, alongside being able to complete a full day of work was still achievable, but no significant changes in lower limb muscle strength were reported. Although the training programme used was standardised from the American College of Sports Medicine (ACSM), this result could be affected by the small sample size preventing certain findings from being deduced and if a larger sample size were to be used this specific outcome could potentially change (Faber & Fonseca, 2014). In addition, if the length of study and amount of sessions per week were increased, the participants may have shown a progression of lower limb changes.

In contrast, Tsimaras and Fotiadou (2004) found that based on a 12 week exercise programme consisting of both strength and cardiovascular endurance, the intervention group demonstrated significant improvements in both lower and upper limb strength. Sessions occurred three times per week, proving that with both an increased study length alongside increased intensity, improvements can be achieved. Nonetheless, this study was based on a younger age group than Mr Brown and so the results may not be specifically transferable (Berry, 2017). However, the results successfully state that implementing some sort of resistance exercise plan does in fact lead to muscle improvements, something that could be applied to Mr Brown’s routine.

Overall, the original study by Shields et al. (2008) was able to highlight that a group fitness programme in a gymnasium ensured multiple benefits in both strength and functional results for adults with DS, and although no withdrawals were made, motivation and enjoyment levels were not mentioned. Therefore, although conducted in a group based environment involving a social aspect, this type of exercise plan could still be considered somewhat uninteresting, and for individuals like Mr Brown with early onset dementia, both depression and lack of engagement can be common symptoms (Alzheimer's Research UK, 2018). Likewise, depending on what resources are available for this gentleman, a gym environment may not be accessible, a point which would require discussions with the social worker or community physiotherapist (Ali et al. 2013). Fortunately, there are other more engaging activities out there to aid in mobility, a key theme highlighted within a study conducted by Mahy, Shields, Taylor, & Dodd (2010) is the importance of creating a fun environment, making the activities enjoyable and engaging for individuals with DS, because Mr Brown’s mental health is just as important as his physical health.

Mahy et al. (2010) conducted semi-structured interviews to gain further knowledge into the reason individuals with DS do or do not take part in physical activity. In addition to preferring a fun endeavour, it was also stated that implementing the activity into the patients daily life encouraged participation due to becoming routine (Mahy et al. 2010). Explaining that if a patient expected certain activities to occur each week, they would automatically attend out of familiarity, ensuring attendance and therefore development. However, one negative point from this may be if an individual does not particularly enjoy this exercise but attends regardless due to routine, is that what is best for the patient? Nonetheless, implementing exercise/activity into the daily routine of Mr Brown, with the addition of being fun, may be the best option to ensure engagement and progression of mobility that will hopefully counteract the progression of his newly diagnosed symptoms (Molony, Kolanowski, Haitsma, & Rooney, 2018). Additionally, this may prove a better strategy than a traditional home exercise plan because if there is no one to prompt Mr Brown to complete this, it would have to be questioned on whether or not he would remember to complete it himself (Lindelöf et al. 2017).

Since Mr Brown currently lives in a small residential home with part time staffing, these staff members may be able to provide some level of support if a group activity environment could be implemented with the help of the physiotherapist. Discussions would need to be made between the physiotherapist and the wider support team/social services to come to the best decision for the patient, and may involve a change in residence depending on the level of deterioration. A change of accommodation may be appropriate due to the risk factors involved in the reduced chewing and swallowing, not exclusively because of potential problems with exercise participation for mobility (Taylor et al. 2013). When deciding the next step in terms of whether or not Mr Brown should be moved into a home with more staff members available, the mental capacity act would need to be applied (Down Syndrome Association, 2019). The mental capacity act is important as it will help ensure Mr Brown is supported to make his own decision or for the decision to be in his best interest if necessary (Dimond, 2016). There may also be the decision to investigate any necessary changes with patient medication, for which the physiotherapist would have to refer to pharmaceuticals. There is substantial progress being made in dementia medication, alongside the possibility of discontinuing certain medication as symptoms develop with complications of comorbidities (Shankar & Ram, 2017). This change in medication may be an additional factor to help maintain Mr Brown’s current mental and physical activity level.

Although focused on sarcopenia progression, Najafi, Kooshyar, Mazloom & Azhari (2018) further emphasise that implementing fun and regular activities led to an increase in elderly mobility and a reduction in falls, something that may be essential as Mr Brown ages. Falls prevention is an important aspect for many older individuals, and although Mr Brown is only 52 years old, the average lifespan for people with DS is between 50 and 60 years and therefore puts him in the elderly bracket (Down Syndrome Association, 2019). Unfortunately, Najafi et al. (2018) did not delve into specific details of what they considered to be fun activities other than walking, but Milligan, Gatrell, & Bingley (2004) & Han, Park, & Ahn (2018) on the other hand, were able to specify that activities such as gardening have shown significant positive effects on both mental and physical health. Both of these studies were able to highlight that it is not necessary for an individual to partake in a structured exercise routine in order to see positive physical changes, and that communal activities such as gardening can have a great overall effect. Although the journal by Gatrell et al. (2004) was conducted some years ago, the validity of the research stands as the same positive results were found 14 years later through Han et al. (2018). Though Han et al. (2018) conducted their study based in South Korea, the results are still generalizable to the UK population as both are considered first world countries.

When conducting research into fun group activities in DS individuals there appears to be a significant gap in the research, and with the increase prevalence of elderly DS individuals there requires more research to be done. Groups such as Cycling UK have emerged who become involved with adults who have learning disabilities, allowing them to take part in a range of activities such as cycling, bowling, dancing and the gym, all of which would be beneficial to both the mental and physical health of patients such as Mr Brown (Lakin, 2014). Reminiscence therapy or group activity has also emerged, stating to be better than non-structured activities, often leading to a high level of wellbeing (Brooker & Duce, 2000).

Generally, there still appears to be barriers present in terms of elderly DS activities and it is often highlighted that there may be a lack of knowledge in terms of what services are out there to help improve problems such as declined mobility or physical fitness (Ali et al. 2013). From the evidence presented throughout this paper, the direction in which recent exploration is going suggests implementing a more holistic pathway for patients in these situations, taking into account both mental and physical health. The importance of health professionals working together to achieve the best available plan for a person centred approach is extremely high, and must also take into account the desires of the individuals themselves, acting as one team (Molony et al. 2018).