The keys to life - Improving Quality of Life for People with Learning Disabilities
The new learning disability strategy in Scotland, following on from, and building on the principles and successes of The same as you?, the original review of service for people with a learning disability, published in 2000.
Appendix 4: Health needs
The following section is taken from The same as you? health report142 and looks specifically at those health needs which the literature presents as either occurring more often for people with learning disabilities or have the potential to add risk to the lives of people with learning disabilities.
Heart disease is reported as a leading cause of death amongst people with learning disabilities. As people with learning disabilities live longer and individuals experience changing lifestyles, it is expected coronary heart disease will become even more prevalent. Making healthy lifestyle choices can reduce the risk of cardiovascular disease; therefore it is paramount that access to health screening and health improvement initiatives are available. In addition to age and lifestyle choice, genetics also contribute, with around half of all people with Down's syndrome being affected by congenital heart defects.
When a person is overweight, this increases their risk of diabetes. There is a high level of obesity amongst persons with learning disabilities and this is likely to be associated with an increased risk of diabetes. There is also a reported link between diabetes and inactivity. Individuals who take certain types of medicines, such as some antipsychotic medicines can also be more at risk of having diabetes. There is no evidence of the prevalence of diabetes in the UK population of people with learning disabilities, although a study in the Netherlands has reported higher levels. This is an area requiring further research.
Respiratory disease is the leading cause of death for people with learning disabilities and is responsible for around half of all deaths among people with learning disabilities; these rates are much higher than for the general population. Pneumonia and aspiration are more common which may be linked to the prevalence of swallowing and eating problems and gastro-intestinal disease amongst people who have profound and multiple needs.
People with learning disabilities are less likely to die of lung cancer; this may be due to lower levels of smoking. However those people with learning disabilities who do smoke are twice as likely to have asthma. More than half of women with learning disabilities and asthma also have associated problems with obesity.
Cancer is one of the main causes of death amongst people with learning disabilities, although the general population are more likely to die of cancer than a person with learning disabilities. People with learning disabilities experience different types of cancers than the general population but, as people with learning disabilities are increasingly living longer this pattern is constantly changing. In particular, for people with learning disabilities there appears to be reduced rates of prostate, lung and urinary tract cancers which are prevalent in the general population, but an increased risk of tumours of the oesophagus, stomach and gallbladder.
Evidence also indicates that gastrointestinal cancer is more prevalent. People with learning disabilities are often affected by helicobacter pylori which is linked directly to stomach cancer, gastric ulcers and lymphomas.
People with Down's syndrome are at higher risk of leukaemia compared to the general population, especially during early childhood, whilst there is a reduced risk of solid tumours, including breast cancer. Evidence also highlights that there is an increased risk of myeloid leukaemia for people with Prader Wili syndrome.
People with learning disabilities have a higher risk of developing dementia compared to the general population, with a significantly increased risk for people with Down's syndrome and at a much earlier age. Life expectancy of people with Down's syndrome has increased significantly. The incidence and prevalence of Down's syndrome is not decreasing. As many individuals who experience dementia, people with learning disabilities may also display challenging behaviours and other health issues. People with Down's syndrome, who are at greater risk, are more likely to first experience symptoms in their mid to later life. The Scottish Government dementia strategy specifically highlights the increasing need of people who have learning disabilities and dementia and highlights that dementia care is a national priority for the government. The national care standards for dementia and the skills and knowledge framework for all people working with people with dementia is also applicable to individuals who have learning disabilities
People with learning disabilities are over twenty times more likely to have epilepsy than the general population and epilepsy is more prevalent amongst those with severe learning disabilities. Seizures can be complex and multiple in presentation which can significantly affect an individual's quality of life. Epilepsy can also be resistant to medication, leading to epilepsy being uncontrolled. Seizures can lead to injury and unexpected, sudden death.
Hearing and Vision
People with learning disabilities are more likely to have difficulties with hearing and vision than the general population. Visual impairment has been reported as up to 200 times more prevalent and around 40% of people who have learning disabilities have a hearing impairment. Many people will have a hearing impairment due to impacted ear wax, which is often easily corrected. Sensory impairments can be present at birth due to genetic causes or acquired through a life span due to environmental causes and aging.
People with Down's syndrome are more liable to develop vision and hearing loss. Sensory impairments are often not recognised by carers, therefore regular screening is required to detect any changes.
Many people with learning disabilities experience dental disease; with some reports suggesting that this affects one in three adults. This prevalence is higher for adults with Down's syndrome where dental disease can affect four out of five people. Dental health needs are often not met. Contributory factors to dental disease include anticholinergic medication and gastrointestinal reflux disorder. Dental health improvement strategies for individuals, family carers and paid care workers are of key importance to address dental disease.
People with learning disabilities may also experience physical disabilities. These can often be related to cerebral palsy as well as to severe or profound levels of learning disability. The prevalence of mobility problems increases with the age of the person. Decreased mobility can affect the individual's social functioning and wellbeing, as can secondary conditions like constipation, respiratory disease, osteoporosis and gastro-oesophageal reflux disease.
Evidence highlights that having a physical disabilities greatly increases the risk of death.
The term dysphagia is used to describe problems with swallowing, eating and drinking. This is often experienced by people with learning disabilities and in particular people with profound and multiple disabilities and cerebral palsy. It is reported that about 40% of individuals with dysphagia frequently have respiratory tract infections. Other conditions associated with dysphagia are choking, asphyxia, dehydration and poor nutritional state.
Gastro-oesophageal Reflux Disease (GORD)
GORD is the name given to a very common condition which happens when the acid in the stomach washes back into the bottom of the oesophagus (the tube leading from the mouth to the top of the stomach which carries food and fluids into the stomach when someone swallows). Common names for this condition would include 'heartburn' or 'dyspepsia'. This 'backwashing' of the acid is called 'reflux'. As a consequence, the lining of the oesophagus becomes chemically 'burnt' which can lead on to other problems.
A Dutch study evidences that up to 50% of people with learning disabilities with severe and profound needs experience GORD. GORD, although common, is often undiagnosed. Symptoms of GORD include pain leading to behaviours that challenge, sleep disruption, anaemia and increases the risk of oesophageal cancer compared to the general population. GORD is a treatable condition when identified.
Constipation is a common problem for many people with learning disabilities. A Dutch study identified 69% of people with moderate and severe learning disabilities living in an institution to be constipated. People who were non-ambulatory, had cerebral palsy, refused food, or who were taking antiepileptic drugs or prescriptions for other gastrointestinal disorders were more likely to experience constipation.
Studies have indicated that there is an increased prevalence of osteoporosis and lower bone density amongst people with learning disabilities than the general population. Reasons for this include lack of weight bearing activity, genetic factors leading to late puberty and early onset menopause, poor nutrition and being underweight. Osteoporosis is asymptomatic and may only present after injury causing a fracture.
People with Down's syndrome are more likely to experience hypothyroidism and its prevalence increases with age. An individual with untreated hypothyroidism will present with lethargy, general malaise and a decrease in their own abilities. Symptoms of thyroid disease can go undetected until a late stage and can impact on an individual's functioning. A simple blood test can detect the disease and annual screening is recommended for individuals with Down's syndrome. From 2011, annual screening for people who have Down's syndrome has become part of the General Medical Services Quality Outcome Framework for General Practitioners.
Accidents and Falls
Several studies state that there are high levels of accidents and injuries and in Denmark and Australia deaths from accidents in the learning disabled population is more common than the general population. Rationale for this could include individuals also experiencing epilepsy, mental ill health, medication use, sensory and neurological impairments and balance problems. Behaviours that challenge like self-injury, pica and destructive behaviours can be linked to injuries, therefore with robust risk assessment and management the morbidity from accidents and injuries could be greatly reduced.
Both children and adults with learning disabilities are more likely to experience mental ill-health than those without learning disabilities. There is an increased prevalence of psychiatric disorder for people with autism, ADHD or conduct disorders. Studies have reported that some people are three times more likely to have schizophrenia, experience depression and delirium.
Evidence suggests that prevalence rates for depression and anxiety are higher for people with Down's syndrome.
Email: Julie Crawford
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