Dementia Action Week - how do you stay connected?

[SophieD]

Hi everyone!

Today marks the first day of Dementia Action Week and the theme this year is all about social inclusion: staying connected, increasing communication and reducing isolation.

To kick off Dementia Action Week, there's a few things we'd like to hear from you...

If you care for or have a loved one with dementia, what have you learnt about communicating with someone living with dementia?

If you have dementia, what can others do to help you stay connected?

We have a thread all about compassionate communication on the community which you can find here.

Alzheimer's Society have also released a video showing kids asking people with dementia profound and funny questions to challenge misconceptions and show that people with dementia, although they have struggles, are still themselves and all people need to do is ask.

Let us know your thoughts below

 

[karaokePete]

I’m now 3 years into caring for my wife and have learned a lot about how to communicate with her. As well as her mixed dementia, my wife needs a hearing aid in each ear.

The first things I noticed with my wife were that she couldn’t follow lists or complicated instructions. Things have to be done one at a time and baby step instructions given. Even with this, supervision is now usually required - or I have to perform actions on her behalf.

In my wife’s case, I always have to check that she has heard me.

Eye contact and vocal check is required to ensure that any communication has been heard, understood and taken on board. Vacant eyes tell me when I need to start again.

My wife soon forgot or ignored any notices placed around the home so I now use them for me, rather than her.

Information Systems, be they clocks, calendars, phones or computer equipment were soon lost on my wife so I never assume she will use any of them. This applies to any type of machine.

Basic speech is deteriorating with my wife so I have leaned to enjoy using my knowledge of her in the daily guessing game. Without this the daily conversations would quickly become angst ridden.

I never take communications emanating from my wife as accurate. I think carefully about the true meaning, or even if it’s just the dementia talking. Very important if one gets hurt too easily.

These are just a few thoughts and I may add to the thread as it develops.

 

[Bunpoots]

My experience caring for my dad was much the same as @karaokePete as dad’s abilities decreased so did his understanding. I found that giving dad too many instructions, or choices, confused him so by the end I was just giving one choice and if the answer was no then I’d give him another option.

Dad always did best with one-to-one communication. He went quiet in big family celebrations and couldn’t follow the conversation so soon lost interest.
But until the last few weeks of his life when he moved into the carehome he still enjoyed a bit of banter and had a quick wit on his good days.

 

[SophieD]

Thank you @karaokePete and @Bunpoots for sharing what you've learnt about communicating with someone with dementia. Both very insightful posts!

 

[Countryboy]

Hi SophieD well I'm back home from holiday in Majorca you may have read I couldn't get Travel Insurance nothing to do with dementia its because I have other medical problem but its when I mention I have Kidney Cancer , obviously couldn't say to much prior to going on holiday for home security reasons I have attached a pdf copy of my quote,

Re; Dementia Action Week although I was diagnosed with Alzheimers In November 1999 and now almost Twenty years fortunately I don't consider my dementia a problem however the Bureaucrats who think their experts who see the word dementia with their blinkers on they can't get through the tiny brains were Individuals as I said been in Majorica 11 days hired a car and drove 1150 km or roughly 720 miles no problems what so ever

May not be of much help but if the children were talking to me my response would be different and possibly it wouldn't realize I have dementia / FTD

cheers Tony

 

[SophieD]

Hi @Countryboy. I hope you enjoyed your holiday in Majorca. Happy to hear that you didn't encounter any problems when driving over there!

Thanks for sharing your thoughts on the Dementia Action Week video. Like you said, it's good to acknowledge that conversations with people with dementia won't be the same for everyone, and the most important thing is to encourage communication.

Thanks again, Tony

 

[Countryboy]

Hi Sophie thanks I made a Car Camera recording when I collected my Hire Car at Airport and recorded the 40 minute drive to the Hotel in Magaluf , the recording is me driving on opposite side of road etc and it's in case I need to challenge or go into battle with DVLA again my driving licence is up for renewal so gathering evidence in case I need to take DVLA to Court I just don't role over if they want to take it away they need to prove i'm incapable, and I do enjoy a good battle

had my B12 injection yesterday so i'm fighting fit now off to Hospital on Tuesday to have Skin Cancers Removed

Cheers Tony enjoy the week end