The face of dementia

Hi everyone,

I think nearly everyone in the world would know someone or have met someone who is suffering from some form of dementia.  As nurses, we know more then most how much dementia affects a person.  If you want a bit of a refresher on dementia, different types and treatment, then follow the link here to the Alzheimer’s Australia website.  A few quick random and interesting facts before I tell you guys a bit of a story

·      342,000 + Aussies live with dementia

·      1 person is diagnosed with dementia in Australia every 6 minutes (scary!)

·      1.2 million people are involved in the care of someone with dementia

·      It is the second leading cause of death in Australia

·      Worldwide, 44 million people have dementia

Anyway, I want to tell you all a bit about my grandfather.  He is in his 90’s, a fit man who rides an exercise bike everyday and when I last saw him was literally running down a hallway in a race (and winning!).  He also has dementia.  It can be so sad to see anyone suffering from dementia, but seeing him so physically fit for his age with a diagnosis of dementia, it is devastating. 

My grandfather has lived in a small country town all his life and when my grandmother died a few years ago, his worsening symptoms of dementia were exposed.  He was unable to care for himself at home and that’s when my mother, aunts and uncles made the tough choice to admit him into the local hostel.  At this point, my grandfather was aware of what was happening and that this would be his new home. 

He continued to be very active living in the hostel, regular walks not only around the hostel grounds but also the town, and he was looking after a vegetable patch as big as my apartment!  However, his dementia was becoming worse and he was displaying more memory losses, some confusion and continued to lose more of ability to perform his everyday tasks.  He also began to leave the hostel at times without notifying anyone. 

Because of this, the hostel made the choice to lock down the module he was living in with 5 other residents.  As his family, we were very unhappy with this decision as we knew the man they were locking in would feel trapped and know that another part of his freedom had been lost and that this would have negative consequences on his health.  At this point, the family decided to look elsewhere for dementia specific care for my grandfather. 

His symptoms intensified within a short period of time and he began to display some personality changes while his memory got worse and worse.  A spot came up in a dementia specific nursing home which we jumped upon and my grandfather was moved again, his 2nd move in 5 years after spending his whole life in literally 5 different homes including his childhood home. 

He has now been in the nursing home for a few months, the personality changes seem to be settling and they are reducing some of his medications.  The sad thing is that he knows that he is confused at times and this upsets him.  He also just wants to go home, but he doesn’t know where home is which is just horrible. 

This has been a pretty full on experience for my family.  My family is full of people who work in the health care system, and still we have found this to be a struggle, so it made me wonder how people go with similar events with no experience of the health care system. 

My mum said to me not long after they shifted my grandfather into the new hospital that she worried that she had done the wrong thing and questioned if we should of left him at the old place and not uprooted him.  I think that’s the hardest thing, how do we know if we have done the right thing by him?

When someone loses their insight and their ability to make their own decisions but thinks that they still are in control… How can we make this easier for their carers?  All my grandfather wants to do is go back to his home near the local golf course and live there, he thinks that he can, we know that its dangerous and that he can’t, who is right?  Is there a right? 

I guess the point of this post is for us as nurses to think about a few things.  One is to emphasize with the family of the individual with dementia and include them in the care of their loved ones.  Another is to not stereotype people with dementia.  My grandfather has dementia, but he can still sit down and have a logical conversation about the price of cattle.  And I guess the last one is to make sure we are providing support to the person with dementia and their carers, and helping them know what other supports are out there such as groups, education sessions for carers and even telephone support hotlines. 

So look at your patient with dementia, even if you are seeing them for something totally irrelevant to their dementia such as a fracture, look at them and care for their dementia as well as their acute needs, it’s a co-morbidity that we can’t afford to neglect. 

And a big thank you to the wonderful nurses looking after my grandfather, you do an amazing job and my family and I are so grateful for your care and compassion. 

Thanks for taking the time to read this, I know it’s a long post, but its an important one!  If anyone is wanting more information or after some support for themselves or someone else being affected by dementia I've popped some links below, I've also recently posted an article on the Ausmed Blog about dementia which you can find here:

Alzheimers Australia

Better Health Channel  

Dementia Care Australia 

Australian Government: My Aged Care 

Australian Government: Ageing and Aged Care

Ozcare: Dementia Support