For those living with Down Syndrome, the sad reality is that you've got a 50% chance of developing dementia at or around the age of 50.  Whilst this is a stark statistic, it is made all the worse due to the lack of care provision in the UK for those who have this combination of young onset dementia and Down Syndrome.  

My sister is one such individual and whilst we have eventually managed to find her a specialist provider who can and will meet her needs, we know how incredibly lucky we have been.  For us the 'battle for Liz' has been a success but she is just one individual and there are so many more who need the level of care she's now receiving, and it simply isn't there.

This is a national issue and one which needs real focus if we are to provide the right care for this group of people - most of whom cannot speak up for themselves.  Please join me in shouting out the need for change!  Sign the petition, talk to your MP, rattle cages.  Folk like my sister need people shouting out for them, they are silenced by their own circumstances.

Some facts and figures:

• 1 in 2 with Down syndrome will develop young onset dementia/dementia
• Data capture is poor, many councils have no idea how many people fall into my sister's category and are therefore unable to establish what provision is needed
• People with Down Syndrome are living longer, so there's more of them needing this specialist care