This week is learning disability week and the focus in on how people with learning disabilities are treated when they are in hospital.
People with learning disabilities are more likely to have health problems than the general population and they die younger. Consequently, they are admitted to hospital more often than other people, allowing for their age, and tend to stay longer. They have more admissions than others for conditions which can either be prevented or treated in the community without hospital admission being needed.
There are many reasons why people with learning disabilities have poorer health. Some arise from physical problems related to their learning disabilities. But this is only part of the story. They are also more likely than others to be exposed to poverty. They often have poorer diets and are more likely to be seriously overweight and do little physical activity. They may also lack the knowledge to identify physical signs or symptoms, such as unexpected lumps or bleeding, which would lead others to seek medical help.
Doctors or nurses may attribute reported symptoms to the person’s learning disability, thus overlooking evidence of important underlying illnesses. And in some cases investigations or treatments which would normally be provided for people without learning disabilities may be withheld.
Good healthcare for people with learning disabilities needs to make allowance for their specific additional needs. This is called making ‘Reasonable Adjustments’. The 2010 Equality Act requires organisations offering services to the public to make these to ensure that as far as possible people are not disadvantaged by their disabilities.
People with learning disabilities often need additional help communicating both about their health problem and about practical issues like knowing where and when to go for appointments. People need to consent to investigations or treatments. The Mental Capacity Act sets out the requirements for deciding if a person is able to understand why these are needed and how decisions should be made on their behalf if it is clear they are not.
Many healthcare situations raise particular issues for people with learning disabilities. The PHE learning disabilities observatory team produces a range of guidance on these. This week we updated our guidance on caring for dementia to incorporate new guidance from NICE about ageing and about mental illness in people with learning disabilities and new case studies. The new version also includes much more detail about how many people with learning disabilities suffer from dementia.
Age-related dementia of all types is more common at earlier ages in people with learning disabilities than in the rest of the population, about 13% in the 60 to 65 year old age group compared with 1% in the general population.
Across all over-60 age groups the prevalence was estimated at 2 to 3 times greater in people with learning disabilities, and people with Down’s syndrome are at particular risk of early onset Alzheimer’s disease.
Diagnosing dementia in people whose intellectual abilities are limited from the start can be hard. It is made easier if the likely need to do so is anticipated. This is important because depression and thyroid insufficiency, treatable conditions which can be confused with dementia, are also more common in people with learning disabilities. Early diagnosis is important to get the most benefit from anti-dementia medication.
And at a human level, people developing dementia need to understand what is happening to them and are likely to need help and advice in making plans about how and where they want to be cared for as they become less able. This is as true for people with learning disabilities as it is for anyone else. Health and social care staff looking after them need to be prepared for the particular challenges this involves.
Visit the PHE learning disabilities observatory team webpage for more on our series of reasonable adjustments guide on topics including cancer screening, constipation, swallowing difficulties, obesity and weight management, substance misuse, community pharmacy services and managing anxieties about needles.