People with Down syndrome are now living longer, with a life expectancy nearing a normal lifespan of 50 – 60+ years. There is a misconception that people with Down syndrome age prematurely, as there is no firm evidence to support this. It is understood that all people who lead busy and active lives age more slowly.
People with Down syndrome in the 50-60 age bracket show the same typical ageing pattern as the general population – a decline in memory, vision, hearing and motor function. After the age of 60, there is usually deterioration in vision, hearing and skin. Other health problems that are more common in older people with Down syndrome are chronic respiratory conditions, arthritis, epilepsy, diabetes and hypothyroidism.
At this time, there are still a lot of older people with Down syndrome who live at home with their parents (and therefore leading the lifestyles of people much older than themselves). Sometimes this is for practical reasons such as the adult taking on a caring role within the home. Often, the reason is that there was never a right time for the person to move away from home.
For people who have remained at home they may experience a sense of loss at having to leave the family home – this will be even more stressful if they have never spent any time away from home.
Inevitably, these adults will experience bereavement and will require a lot of support to come to terms with their loss. Preparation work with the individual and their family is extremely important. Although it is very upsetting for all involved, some information about death and consideration about what the person will do afterwards; will help when the time comes. If parents are involved they can help to put any fears that their son or daughter may have to rest. Decisions about the adult’s future home and care needs can be arranged and finances put in order.
When adults with Down syndrome have had the opportunity to make plans about what will happen once their parent is not there, they feel much more secure. Individuals who are not given this opportunity say that they are ‘confused’ and ‘terrified’ about what the future holds for them.
As life expectancy has increased, the link between Down syndrome and dementia has emerged. Research has shown that nearly all adults with Down syndrome have Senileplaques and neurofibrillary tangles in their brains, which are similar to those seen in Alzheimer’s type dementia.
Although most people with Down syndrome have this neuropathology, only 50% will go on to develop dementia – the reason for this is not yet known. Diagnosis is difficult because there can be numerous other medical reasons why a person with Down syndrome may show some of the signs of dementia (i.e. confusion, withdrawal, disorientation, irritation); possible factors being hypothyroidism, deteriorating vision, depression.
In the general population, memory changes are the first outward sign that a person may have dementia – in many cases the person themselves is aware that something isn’t right. For most people with Down syndrome, the first signs are changes in behaviour – for example, a normally placid person gradually becomes more and more angry and aggressive.
Changes due to dementia are likely to take place over a period of time with carers becoming gradually aware that something is going on. When changes occur over a short period, it is likely to be a physical problem that can be treated.
Dementia progresses much more rapidly in people with Down syndrome than in the general population. Early diagnosis is very important so that people are given the opportunity to try current medication and treatment. Modern medication can slow the progress of dementia but it works best if it is prescribed in the initial stages.
When dementia is confirmed, it is better if the person is not automatically removed from their living environment. Gradually adapting the place to meet the needs of the person works the best until the very last stages of dementia when specialised nursing care may be necessary.