This week is Dementia Awareness Week. This year the Alzheimer’s Society has changed it to Dementia Action Week to create change in communities as well as raising awareness and offering support. They are asking everyone across the UK to unite with them and take action. Whether big or small, actions can make everyday life better for people affected by dementia. Learn more about Dementia Action Week and follow the hashtag #DAW2018.

Carers Leeds enjoyed a week of action and as the week draws to a close, one of the brilliant carers we support got in touch with our Dementia Hub and asked us to share their story. Here it is.


Living with dementia is the term used for those who have been diagnosed with one or other of the forms of this cruel disease. But, in actual fact, the carers of these people are also “living with dementia” in that their lives are completely ruled by it. And it’s hard, and not just because of the things you find yourself having to do; when you say the words “in sickness and in health, for better or for worse” you have no conception of what you may be signing up for. You never dreamed that you would be dressing and undressing, showering or bathing, supervising toilet visits and cleaning up after the one you are marrying.

The really hard part of this though is seeing the person you love most in the world diminishing before your eyes. You become lonely because conversation died with the diagnosis. The once bright, clever, confident person you have known for so long is gone forever and in their place is someone who looks like them, feels like them when you share a cuddle but is no longer the person they were. As well as caring for them, you are mourning their loss. You look at them sometimes and weep bitter tears because, though you can see them, the one you have loved for years is no longer with you and never will be again. You still love them, as the old song from Oliver says, “when someone needs you, you love them so”, but somehow it’s in a different way.

Equally weird and somewhat scary, is having to make major decisions on your own. Decisions which previously were jointly made after discussing all the implications,

There is help out there, Carers Leeds, the many dementia cafes in the city, TeaCosy Café, Crossgates Good Neighbours and Garforth NET to name but a few and thank God for them too for, without them, life would be so much harder.


If you’re caring for someone with dementia or memory problems, get in touch with our specialist Dementia Hub for advice and support.