DadsFTD

@AlzResearchUK @Channel4News “We” meaning who exactly? Were people with dementia involved in the making of this campaign?

Today we launched our new campaign film. Voiced by actor Olivia Colman, it features a story we urgently need to tell. Tune in to @Channel4News this evening to watch.

My blog today…just in case you didn’t see the letter I wrote to @AlStewartOBE via the @DailyMailUK @MailOnline whichmeamitoday.wordpress.com/2023/09/16/a-l…

Saw the advert released by Alzheimer’s Society. Wow. See not much has changed when it comes to language used in public awareness campaigns - “…devastation…” Was left feeling v sad and deflated after watching. Is that really the lasting effect they want the campaign to have??!

@WendyPMitchell Amazing!! Good luck Wendy! Have fun!! 🤩

Well my epic day has arrived! Today at 16.45 I’ll be jumping off the top of the Cheesegrater building. To say I’m excited is a total understatement 😂 whichmeamitoday.wordpress.com/2023/09/09/wac…

All pink haired and heading down to London ready for our epic challenge with @doryitsme and Rachel from @Innov_Dementia but via Essex as ive been invited to visit a day centre in Basildon for people with Young Onset Dementia

I attended a Cognitive Stimulation Group for people with dementia last week. They gave us musical bingo to play and one of the songs was Old MacDonald Had A Farm. I am not a child!

@sandy2209 We got dad a Koto simple music player and uploaded his personal playlist to it.Thought it would work really well but it kept on going walkabouts and ending up in cupboards and all sorts of places like so many of dad’s other possessions. Will try again though👍 as it is good

@FtdStories We’ve bought a DAB radio to put in mums room, carers are now getting into the habit of turning it on

2) He’s non verbal so he wouldn’t say that he wants to watch the cartoons. He also doesn’t express “yes” or “no” through non-verbal communication when asked questions.I just wonder why kids cartoons?Why not music or programmes not aimed at kids?Is it part of the infantilisation?

@bikerwise Yeah, that’s also my worry. I certainly feel the strain after even just a bit of time in his room with the cartoons on. It’s a real shame that tv is used so much for entertainment in care homes. When I go,I turn the volume down and change to music to give dad a bit of peace! :d

@FtdStories My husband wouldn't have coped. He very quickly got sensory overload.

@wendy_ENDALZ Yeah, feel like that could help. After dad was moved out of his own home, he stopped being interested in the tv. We would put music on for him. Feel like this is sth that benefits the staff working there more than dad. Tv is a quick easy and free way to provide entertainment

@FtdStories I had to let staff know what my mothers TV interests were ~ verbal and written reminders seemed to help as staff changed often.

1) Dad’s always been into music, his whole life, including post diagnosis. Recently whenever I visit him, he’s always got kids cartoons on in his room. He doesn’t work the tv himself and there’s never a remote in his room. So who decides that he wants to watch cartoons?

@bikerwise A lot of the kids cartoons on channels like CBeebies (in UK) are full of words though.They’re very colourful, fast speech, fast movement. Unless the programmes are for babies, kids programmes are very visually and audibly stimulating and are actually pretty draining after a while

@FtdStories Is it that deliberate or is it that they think cartoons aimed at children with limited/no speech will appeal to adults with limited/no speech? I recorded lots of podcasts for my husband. Took a long time to persuade them he could enjoy them without being able to talk about them.

Whenever I help dad eat his lunch, it’s always a lovely moment of connection between us. He looks at me, his face relaxed, sometimes with a slight smile and I smile back at him. To me he’s always Dad.

We’re still looking for an EMI dementia nursing care home in the Manchester area that will take dad. Proving very difficult. A lot of the ones we’ve approached just don’t think they can meet his needs. What are we supposed to do??

Had a nice time with Dad today. Fed him his lunch, and went for a short walk in the care home. He used to speed up and down the corridors and outside in the garden. He’s now very unsteady and weak on his feet. Obvious he’s not getting out of bed much now. Another change :(

Still no luck with finding a new home for Dad. Hopefully something will come up soon 🤞🤞

@WendyPMitchell @DailyMailUK @whartonswords @BloomsburyBooks @Innov_Dementia How wonderful! 🌸💛🦋 Brilliant awareness raising 🙌

Wow, double page spread in the @DailyMailUK with extracts from my new book @whartonswords @BloomsburyBooks @Innov_Dementia and no negative headlines 🙌⭐️

@JCelt Hi Jeanette, thanks for your kind words. Yeah, since the very beginning we’ve always found it hard if not impossible to find appropriate services for dad. As YOD (and FTD) numbers in the UK rise, a better provision of services will just have to be put in place.

@FtdStories I’m so very sorry you and your dad find yourselves in this situation. Past 2-3yrs have opened my eyes to the absolute lack of age related awareness & services for those living with young onset dementia. For their families too.

The Dementia Crisis team have assessed dad at his current care home and believe he needs to move to a nursing home 😢. Finding it very difficult to find EMI dementia nursing care for under 65s who will accept dad in the Manchester area.