Jean

My husband was diagnosed 4 years ago with Alzheimer’s as a result of my noticing speech repetition patterns developing over a period of a few months. There are some excellent services available to people suffering from this dreadful disease but I feel that there are some areas which need addressing urgently especially in the light of the burgeoning number of cases diagnosed each year.

I live on the NSW Central Coast and we are extremely fortunate to have the services of an excellent Dementia Care Coordinator who not only runs the Living With Memory Loss programme but also provides assistance and support for carers. The Carelink initiative is also a fantastic service – one of which I had need to use two years ago when I broke my leg. It gave me peace of mind that my husband was being well cared for at home until he could be placed into respite care.

I am full of praise for such programmes whilst the patients are still able to be cared for at home, but I do feel that the system requires an overhaul for the latter stages of the disease. This will become more evident as the numbers of people affected by Alzheimer’s increases over the next four decades.

Graham’s condition deteriorated rapidly and he was admitted to Gosford Hospital with suspected delirium. His behaviour became aggressive and, on occasions, he was violent towards myself and hospital staff – this was completely out of character. I was told that because of this he could not be moved into a care facility, although I was advised later that this was not the case, and he was kept in the hospital as it was no longer safe to have him at home. Graham occupied an acute care bed for nearly eight weeks and, because of his behaviour, he had to be ‘specialled’ around the clock. The financial cost of this must have been enormous but more importantly it meant that such a long term stay meant that a valuable hospital bed was denied to more appropriate patients.

There has to be a rethink on the care of patients such as my husband to allow them to be in a better environment, but also to free up that acute care bed and all the nursing and medical staff.

Eventually he was moved, albeit briefly and with considerable difficulty, to a high level aged care facility but, unfortunately, Graham succumbed to the ravages of this awful disease and pneumonia on 11 June 2011. Technically, therefore, I am no longer a carer but, as you can imagine after 36 years spent with a loving and caring man, this is a subject very near to my heart. The system is clearly unable to cope with the number of patients diagnosed with Alzheimer’s disease now, and it is imperative that the infrastructure is in place to care for the huge increase of sufferers by the middle of this century.

The time to act is now.