Written by Active Minds on Tuesday the 8th of December 2015.
While Down’s Syndrome is extremely common – more than 40,000 people are currently living with the condition in the UK – many people are unaware of the causal links between Down’s Syndrome and dementia. In fact one in five people with Down’s Syndrome will develop dementia due to Alzheimer’s, thought to be caused by the amyloid gene contained in the extra copy of chromosome 21 found in Down Syndrome patients. While symptoms and diagnosis can be similar to that of other patients with dementia, there are some key differences; if you care for or have a loved one with Down’s Syndrome, here’s what you need to know.
Not only are those with Down’s Syndrome at higher risk of developing Alzheimer’s, they are also at risk of developing it at a much younger age. One in three people with DS who develop dementia do so in their fifties, with one in 50 developing the condition in their thirties.
Many dementia symptoms are the same for people with DS as they are for those without it; you may notice changes in behaviour or personality, as well as increased memory loss. However Down’s Syndrome patients have been found to be more prone to epilepsy, as well as to an earlier loss of basic physical skills.
Dementia in Down’s Syndrome patients can often go undetected as those with DS may have presented similar symptoms in the past (for example, short term memory loss is fairly common in those with DS already). Rather than specific symptoms, look out for marked overall changes in behaviour or deterioration in everyday skills. If you do notice any changes, make sure to contact your GP or learning disability care team as soon as possible. Since people with DS are at high risk of developing dementia, it can also be a good idea to make sure they are regularly assessed from the age of 30.
Caring for someone with both Down’s Syndrome and dementia comes with its own unique challenges. Firstly, although your loved one may find their diagnosis hard to understand, they still have the right to know what they are going through and so it is important to communicate this to them in a way with which they are comfortable. Try breaking down information into manageable pieces or using online resources specifically written to help those with learning difficulties. People with learning difficulties are often already used to communicating in different ways, so use communication aids and visual clues if this might be helpful.
Dementia activities can also be just as helpful for dementia patients with Down’s Syndrome as those without, while reminiscence activities can also be calming and reassuring.