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What I hope will be a mini adventure………

So I ended yesterdays blog telling you about my possible mini adventure to the Isle of Lewis …..the lovely Philly Hare has taken up residence there for 3 months and invited me to stay…..well I’ve always wanted to go to the Scottish Isles, so I couldn’t miss an opportunity like this…..

It meant a later than normal arrival in Edinburgh but I’d booked a hotel where I stayed at last time I went there near the centre so hopefully the people of Edinburgh will be smiley and help me find my way…….

I had a change in Doncaster and then an hours wait 🙄….must have missed that point when I was booking it, so I went for a trundle round the indoor  shops, warmer in there than the cold platform, finding a lovely message on a pillar as I entered …

I knew if I got lost that someone would point me back in the right direction. I rely so much on the kindness of strangers, but only ever ask a smiley face….My train wasn’t until 17.10 and once I got back to the station, it was dark so no lovely piccies of the views of the Northumbrian coast….hopefully I’ll get them on the way back…

Instead, all I could see as we trundled along were street lights, car lights and inside the hopefully snug houses of all we passed….I often pass the time wandering about the stories behind the houses; are they happy, are they sad, is life treating them well or is there trauma involved. No one knows…..

I’d been exhausted after finishing the Induction talk in the afternoon so this didn’t bode well for the 5 hour journey.   It’s also difficult trundling in the dark as strange shadows appear at the window, making it difficult to differentiate from what’s inside and what’s outside. The cities are lovely as everything is lit up and sparkly showing the evening activity, but the rest is a tad difficult. So I spend my time playing solitaire, typing and averting my eyes away from the window….

As we neared Edinburgh I began looking at my paperwork, getting my instructions out and shock horror , realised I was booked into a different hotel than I had in mind😳🙈 I quickly began to check and recheck, but no, I would have headed to a different hotel if I hadn’t checked 🤦‍♀️…..I began finding another map and trying to work out the way…..goodness knows what had put the other one in my head….good job I always go through things as we near the destination…..but it just scrambled my brain especially at that time in an evening…🙄

It was gone 8.15 pm when we pulled into Edinburgh. My sunflower lanyard had got me the help I needed as a guard came to help me off and point me in the right direction. They’d kept coming by and asking if I was ok, so it was well worth wearing it..

I found my new hotel quite easily following instructions with Google Maps…it was wet and windy with very few people venturing out onto the streets. I walked in, gave my name, only to be met with…..”

”are you sure it’s this one….?”🙈

well no, I wasn’t but “This is the central one isn’t it?

“Mmmm but there’s 2 central ones”………🤐🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯

Turns out I was in the one I thought originally all along…🙈🤯

My poor brain just wanted to explode but I put that off for the moment as I ventured back outside into the cold, wind and raina and trundled the short 5 minute walk to the ‘other’ Central….I was quite pleased really as the staff there were much smilier than the Mr Grumpy I’d just left..she booked me a taxi to the airport for the following morning and I collapsed into my room, not even having a cuppa tea before snuggling down…

I sooo hope the plane isn’t cancelled tomorrow after all this! As the noise of the wind played hide and seek in the vents of the hotel and howled around the nighttime streets outside my window, it prevented the sleep I so desperately needed to sink into my body…..

you may be saying ….why would I put myself though all this stress? Well adventures  don’t come easy, and after all, what’s the alternative? No adventures? Sat at home alone with dementia? I don’t think so…I don’t much care for his company…

Find out tomorrow if I got to fly…….

My first appearance before an Ethics board…….

So Friday was Friday 13th …….. would it be an unlucky day for our project looking for ethics approval?

I’ve never seen what goes on at an ethics board meeting before. So many researchers fear them and they often seem to over protect or underestimate people with dementia, so I was expecting an interesting experience…….research studies have to receive ethics approval to make sure those taking part are safe.

It had started off a sunny day but the grey skies soon descended and fitted my mood for the day….no matter what you thought of the result of the election, we mustn’t let it divide the country. People made their mind up for whatever reason they thought best & now we have to stop all the divisions and hatred that exists. Sadly I can’t feel anger anymore or I’d be ranting and raging, all I can do is let my eyes leak ‘til they’re empty……and so I was glad I had something to fill the space on Friday, but knew that if the panel upset me, I’d just cry and that might or might not work in my favour! 🙄

The taxi driver was a smiley soul but we trundled to the station in silence, conversation all spent for the day. The first train to Hull was on time and I got my cuppa tea before the train to Leeds, which was delayed of course…..

The sky was undecided as we trundle past the Humber…

The train was crowed with festive fun as people with suitcases struggled to find a spot for them to rest and groups raucously brought out clinks of booze and food for the journey …..and exchanged terrible jokes 🙈 as this was a lunch time trundle so very different passengers travelling alongside ….the volume of noise too much for me to decipher punchlines or conversations so I looked out of the window and went into my own world instead…..the peaking sun hiding the torrential rain falling in the distance

We were meeting the committee in the Queens Hotel, next to the station in Leeds and Mark Wilberforce and Louise Newbould, from York Uni we’re meeting me there for lunch ahead of the time so we could talk tactics 🙄. Their project is called HOPES – Helping older people to engage with social care….it’s looking at people with dementia but also people with mental health needs….it’s a really big issue that we don’t address at the mo.

NHS committees are used to to medical trials and medical trials can cause a lot of harm so they tend to be cautious but they are getting used to more qualitative social research than previously. They used to medical researchers ‘Doing’ things to people, so now they’re having to understand risk in a different way. Ethics committees are all about interpreting harm very widely so e.g in our sort of project over probing questions, or overlong interviews……

Ethics committees are volunteers so only get expenses which surprised me hugely….the fact that there’s 3 of us turned up shows we’re keen on ethics…..I promised Mark, I would be polite and wouldn’t mention the fact that I just wanted to see what they were up to 🤣😂

It was mine and Louises first ethics committee….Louise very nervous, me very excited 🤣

In the first part of our study we want to talk to people with dementia and those with a mental illness who were having trouble with care visits into the home and accepting they need help and the reasons why they might refuse help. So having trouble receiving it and accepting it…. Sometimes Home Care staff will dismiss people who reject home help due to the circumstances at the time – it’s easier to move onto the next person, such is the restraints on their time. They may be rushed, the care staff may not know how to interact or how to cope with the situation… can we train staff better to understand how to perform Home Care?.

The biggest thing I learnt was we can’t control the venue where ethics decide to hold the meetings. The Queens hotel was a real challenge for me with crazy flooring once more, mirrored lifts and little signage so our able enablers really need to help us with those difficulties. I should have taken piccies to show but I was concentrating on getting from A to B 😳. There was also noise coming from every direction, with Christmas parties and people walking past so hard not to get distracted…

After lunch we headed up to sit outside the Headmasters office (that’s really what it felt like 😂)and just wait to be called……Mark and Louise were nervous, but then all researchers are nervous of ethics, especially NHS ethics…..Mark whipped a tie out to look the part……the research is their baby and timelines are tight, so ethics delays can make or break their project.

We chatted to the 2 chappies also waiting but thankfully their appointment was for 3pm and ours 2.30. They were researching medication in children’s hospitals and the processes…….and were from Manchester ……so had a longer journey than us………it was nice chatting to different researchers in a different field  and it turned out Louise knew one of them as her and Mark had both worked at Manchester …..small world syndrome……

The committe were running very late but a very smiley friendly room greeted us.

I asked at the beginning if they would mind if I typed……and explained why, with the help of Mark.

We introduced ourselves. There were loads of them, probably 10 or 12, which surprised me and the room felt very cramped and full – good job they had smiley faces. One of them was the Chair and another one was in charge of asking us questions.

They started by saying  how they loved our application, how they were please I’d attended and that Mark and Louise had involved me, Maria Helena, who also has later dementia and her husband David.

They asked me the first question 😱about the length of the questionnaire, which took me by surprise as I wasn’t expecting any questions to be directed at me, but that was a nice surprise.……our  questionaire is due to take an hour. They asked if this was too long for people with dementia. I said how flexibility will be key, how each individual is different; how the individuals capacity and the type of day we’re having would influence the process.  I turned to Mark, hoping that was the right answer, as I think them asking me took us all by surprise!!

They involved me in the questioning so much which surprised me hugely. But it meant I had to stop typing to concentrate in case they snuck another one in 🙄😳…..we were finished in record time apparently as they only had 3 or 4 questions and it meant that Mark, at the end, told me to mention Dementia Enquirers 😇….and how people with dementia could well be in the hot seat up and down the country and I would feed back about their smiley faces…….

We were all very happy and very pleased when we came out. It was a happy end to the week but then, needless to say, it went downhill as I entered Leeds station… train was delayed and then in the blink of an eye, it was cancelled 🙈……we were told to go to Selby and wait for a connection there. The train we were sent to had just 2 carriages and was one of the oldest trains on the planet and was rammed like sardines when I got there. I squeezed on and a smiley face allowed me to have his seat. More sardines arrived and just squashed onto the train even more.

Once we got to Selby, there were more delays, another sardine train arrived and we joined the squash on that one. Another smiley face gave up their seat for me, so very grateful for those people. A Twitter pal posted this on Twitter to me…very apt with the travel trauma I’ve had lately…

I finally arrived home, very tired after a roller coaster of emotions day………tomorrow’s another day and me thinks a chilled weekend is in order………but a great introduction to the world of ethics committees …..



Twitter poem revisited……

So another reblog today …I only wrote this in March this year but it could have been written anytime since I joined the wonderful world of Twitter…..I call it my silent world of conversation, where my fingers can do the talking…..

Oh twitter, oh twitter
I do love you so
You allow me to witter
No matter how slow

The kindness of friends met
Thru this bright blue bird
Has brought such happiness
To voices once unheard

Yes, like in any world
Evil lurks all round
Trying to sadden our days

But so rarely found

So my silent world of company
I hope you realise why
You’re so important in my day
Even when my brain won’t play……

No rest for the wicked………

So I’m typing this on Monday at silly o’clock  after I’ve arrived back from Italy, Sunday night…..🙄……now most people would have booked themselves a rest the day after, and I would have done, except… was Minds and Voices…..AND we had new people arriving for the first time, so how could I miss it…….Tuesday I will snuggle…

Arriving back from Italy has proved to be a tad scary as Italy had become normal…I’d gone over my normal 3 days away and leapt into 5, so I wasn’t quite sure what to expect I had to make a new normal. Whether it was the same normal, I don’t know as I don’t remember what the old normal looked like😔

Once I turned the key into the lock I soon realised that if I thought about things too much I got more confused, so I decided to go with whatever my body did…..I’d already looked at my shower the previous night and wondered what I did, but in the morning ‘I just did’ and it seemed to work…..overthinking is bad 😂 I’d spied my bottle of diet tonic on the kitchen side and realised I hadn’t drunk that while away ….so that was why I’d had such bad night cramps while away and last night….the quinine in the topic has been my rememdy for years. Quinine tablets give me hallucinations, so tonic has always been the solution, but I’d forgotten……but now back in my routine again…..

Sarah had booked me a taxi in Italy and I’d set my reminder so knew that was all done. It was a new unfamiliar man who drove up, I only know that, as he didn’t seem to know me. As we trundled along the dark damp road, he asked me where I was going. I told him York, but I’d come back from Italy last night…..and then began the familiar sowing of seeds about dementia……he told me of his mum and a programme he’d watched and we chatted happily until we reached our destination……sowing seeds in one person at a time is time consuming but one is better than none……

Damian was picking me up at the station so I tapped away on my iPad and then played solitaire to wake my brain, as darkness meant there were no hopefully familiar views to look at through the windows. Apart from the headlights coming towards us and the myriad of tail lights in front … 10, black Jack……..

As we edged our way forward, through the early morning traffic, images started to appear outide….the world was waking up….and allowing me to spy it’s simple beauty again….

And then when I got to York……well the stillness of the autumn beauty filled me with calmness

I managed to pick up sunflower lanyards for everyone from York train stations, as not are airports recognising them but train companies are coming on board now, for anyone with an invisible disability…….and someone did say Marks & Spencer are starting to recognise them….

Damian and his son Joe picked me up and we had soooo much to catch up on. I asked if I could highjack the first 30 minutes of the meeting. I wanted to make a 30 second video for the Xmas advent calendar I’m putting together and also to ask for their suggestions…..and fill them in on Italy and how they got their mention!

We were expecting 2 brand new playmates who had been referred by the Local coordinators who are employed by the council and social services……….

People started to arrived and in the end we were 18……the most yet!!! And we were even people missing due to illness! Magic magic magic……

I highjacked the first part of the meeting. Told them how I mentioned Minds and Voices in Italy, how Eddy and Pat appeared on screen with the Getting Along project, so now they’re known in Italy. I gave them all a lanyard and heard their stories of travel……leaving from Manchester, didn’t fair very well……..and then we made a the video I needed for window 25 of my Advent calendar…..and got some suggestions for the rest of it……

Sophie from Hull Uni then took those that wanted, to another room to talk about dark humour …

The rest of us suddenly started to randomly talk about what the community can do and peer support …….Brian was saying he talks to his local parish council as he used to be a member so knows them all …..we said how more people with dementia are speaking out and Peter said…..”We need to hurry up…as I’m forgetting who I am…”

Then the care home situation came up ands the cost of it…..

It’s not right that people won’t face it” because of being afraid to won up to having dementia. said Peter…..”It’s not through their own fault”

Eddys wife said, that his Gp never asks him how he is coping with his dementia? He feels like he’s left behind…..he’s being ignored. He just wants someone to take an interest and be able to talk about his issues, but no one is interested.

Rob said “it take no training in dementia to ask ‘how are you coping with the dementia”

And ‘we wouldn’t have known anything unless we’d have come here and listened to other people living with dementia – medics have taught me nothing ”

Peter said, ‘The Gp gave up on us”………”If they were in our situation they would do something” “I’m not giving up”…………

Peter was on such good form today – he was so animated….

Damian then told everyone about the UK Dementia Congress…….we’ve been invited to take Minds and Voices to have a meeting at congress that people can come and watch on the Wednesday at one of the workshop – if you’re at Congress, please come and join me and my playmates !!!! 12-1pm

Damian then reminded people of our Dementia Enquirers project…….people with dementia leading on research ………ours is on living alone or living with a care partner… they had a meeting, that I couldn’t attend……we’ll have 2/3 focus groups, interview some individuals, but we have to get through ethics first……👍💪🏻

So we need to decide on the questions….which started off a very animated, interesting  conversation……wonderful!❤️ The whole of the next meeting will be taken up putting together the questions we need to ask……

Eddy said his biggest fear is waking up and not knowing who Pat is…

Pat said….”well it will be like waking up with a different woman everyday”


The second of our project is with George Rook’s group in Shropshire around Admiral Nurses and for that we will come up with a questionnaire …..

We finished by looking through the latest bumper issue of the DEEP Newsletter…❤️

We had the most amazing meeting today and I’m so glad I went…….so worthwhile seeing my playmates…..can snuggle on Tuesday…….

Living alone versus living as a couple – take two….

Another reblog ……this time from December 2016……and quite related to yesterdays blog about our course as the topic is included in one of our sessions!

No one gives you a handbook when you’re diagnosed and one of the most difficult things for couples to accept is that you will need help and support and ‘training’ on how to support a loved one with such a diagnosis. It must be a difficult concept to come to terms with. After all here is someone you may have lived with for 20-30 years – why on earth would you need training? But why wouldn’t you need training on how to support someone with a complex brain disease?

Training and support for couples in the practicalities is something else that’s sadly lacking post diagnosis.

It got me thinking about how lucky I am, in many ways, to live alone. It’s a family joke that my eldest daughter, Sarah, moved out of my home on the day I was diagnosed. This wasn’t due to Sarah ‘running for the hills’ at the prospect of what lay ahead, but a happily made decision to set up home with her partner.
However, it was actually a blessing in disguise. When you live with someone, it’s quite natural for one to move things around, tidy up, be messy – all of which would be unhelpful for me.
It’s human nature to do things for the kindest of reasons but which would annoy the hell out of me in reality.
I’m an independent kinda person who likes to be left to her own devices. I used to be really tidy and not have papers everywhere, however, if I now file papers away, they no longer exist. So on my stairs at the moment are various bits of paperwork where the subject matter is still outstanding. All the paperwork around me moving house is there – because I havn’t moved yet; all the paperwork that would normally get filed away because I would remember to deal with it is still there until it’s happened – then it can be filed away.

I’m fortunate in so far as I was always an organised person so I havn’t had to learn that new skill.

The worktops in my kitchen are far more cluttered than they ever used to be. Each week I lay out paperwork that I need for the coming week. My calendar gets stuffed with paperwork relevant for each month so I don’t forget to deal with it.
Notes lay strewn everywhere to remind me to do things or as a reminder that something is happening.
If there was someone else living in the house, it may become impractical or seen as a nuisance, maybe annoying or something may get moved accidentally – all of which would lead to confusion.

I don’t have someone rushing me or questioning why I can’t remember something.
I don’t have to give excuses or reasons for my action.
I don’t have someone doing things for me because it’s quicker
I don’t have someone fussing when I’m having a bad day
I don’t have someone urging me to eat when I’m not hungry
I don’t have to think whether I’ve upset them
I don’t have to worry that I’m having to do things differently
I don’t have to worry about being slow
I don’t have anyone correcting me when I get the wrong word or date or name
I don’t feel like I’m letting anyone down
I don’t have to justify why I’m behaving as I am.

However, there are things that I miss…….


I don’t have that hug available when things go wrong
I don’t have that someone to help jog my memory
I don’t have that support when I find things difficult
I don’t have that back up brain to remind me
I don’t have the constant company
I don’t have that someone to laugh with
I don’t have someone to switch off the cooker when I forget…..😳


But all in all, I enjoy my own company and am happy to muddle along alone and my daughters are only a ‘whatsapp’ away……… the world has changed…….

Not sure why or how Snoopy has come to mind but used to love Snoopy years ago😊
Not sure why or how Snoopy has come to mind but used to love Snoopy years ago😊

Damian has done some brilliant work with couples in York with a programme called ‘ Getting along’ – more can be found at:


Recording a podcast with Adrian Goldberg

Thank you for all the kind messages yesterday, they were much appreciated. Here’ how the day ended  ……

Adrian Goldberg, journalist from BBC Radio 5 Live, emailed asking if he could visit me and record an interview about my book for his Talk show podcast . I let Mr Google check him out for me as I get many requests like this which I turn down, especially when they’re male. But for some reason I said yes to Adrian, he appeared kind and had done some good journalistic work so I went with my instinct and said yes.

So on Wednesday afternoon I sat in the heat waiting for him to arrive. He came all the way from Birmingham on the train to see me and even taken the village bus to the village, because he wanted to.

As you might have gathered, from yesterday’s blog, I’d woken with dementia fog in the early hours of the morning so was worried I was going to waste his time. But I worked hard through the day to get some semblance of normality. Listening to the interview he thought I must be having a good day, so I must have done ok.

I didn’t type throughout the interview, but immediately knew he’d read my book – always amazes me, when people interview me about my book when they clearly havn’t….but he had.

Adrian’s father had dementia so he had a personal connection. His interviewing style was gentle, kind and funny. It was nice to listen back to what we spoke of……hope the link works….

The Dreaded Quiet week…..

I’ve had such a quiet weeks lately …..only one trundle this week that happened to be yesterday…..
People have said maybe it’s the quiet before the storm…..but I prefer to have a steady continual drizzle. A long period of quiet followed by a full diary is so hard to get through. Dementia lulls you into enjoying the peace. It tries to strip from your memory the process of ‘doing’……’not doing’ becomes relaxing, becomes the norm, becomes a joy……☹️

When I say ‘doing’ I’m talking about being involved and having your mind stretched by the planning and travelling; different conversations in different environments.

I’m not saying I’m bored and have nothing to do, as I always make myself ‘do’ something. But being involved with professionals stimulates the brain beyond simply ‘doing’. You actually feel the door being closed on dementia…..never fully locked but closed enough to prevent it seeping in and wrapping itself around me…..

Some might say that what I’m describing is ‘employment’ but I could never do a regular job as that ability left me years ago. I’d be unreliable, inconsistent and a liability which would do me more harm than good. So we’re trapped, trying hard to keep ‘doing’ but reliant on others asking us to be involved.

It’s been a struggle to keep motivated this last couple of weeks, keep dementia at bay. I’ve had my eyes closed a lot and been tired most of the time..simply because I havn’t been ‘doing’……never good…….

Anyway end of moan and feeling sorry for myself…I know I’m verrrrry lucky really……

So yesterday I had a meeting about a new research project………

Cathryn Hart picked me up from home and drove us to the lovely bunch at Willerby…..
I couldn’t for the life of me work out why I was going so Cathryn filled me in on that bit too🙄

We arrived to find the lovely Alison with my cuppa tea in hand all ready…..I did take a piccie but then realised I had Cathryns notice board for all to see behind her!

And so I sat happily at the table in Cathyns office having my cuppa and looking at Cathryns happy board of all her staff…….

We were there to meet Mark Wilberforce, a researcher from York University to hear about his new project and me possibly being involved.

NIHR and many other organisations are putting far more emphasis on public involvement, which is wonderful, but I’ve come to the horrible realisation that this is back firing on us on occasions.

I’ve had several emails lately asking me to be involved and I’ve turned them down or they’ve not replied when I’ve asked for the finer details . I’ve heard from other people with dementia and what has made me sad is that they have been so grateful to be asked that me thinks they could be used in some circumstances simply to get funding.
I had one email that asked me to be on their steering group and when I asked the usual questions around the detail, I was told ‘Oh it won’t involve you doing much at all. We just need names on applications to get the funding……’
To think such things is appalling, to state them is unforgivable. Some researchers have a lot to still learn sadly……needless to say I turned them down….

We’re all different in the extent we want to be involved and all are important.

Anyway, off soapbox and back to yesterday…………

I’d had a long email discussion about my involvement and was more than happy that Mark gets it and the fact that Cathryn knows him made me feel comfortable………..

His project is about people who could use social care services. It’s about people with dementia and other complex needs who find it difficult to engage well with home care services . Outside help can be difficult to accept. It’s difficult to receive help in that short time and can be distressing in a rushed atmosphere. It’s difficult for the home Carers to deliver care in such a short time and so it becomes distressing for all and the process falls apart.

It’s finding out why they refused care or find it difficult – is it the way it’s being delivered. It’s easy for care workers to say they’re a ‘difficult person’ or ‘refused the visit’ and they go onto the next person. The cycle then starts again when new care workers appear on the scene again.

Support workers (some areas call them Health Care Assistants) are one of the biggest resources in mental health trusts. They’re not qualified, they’re cheaper, but the big factor is, they have more time than Home Carers. They have that bit more experience than home care staff because they can be used to people with complex needs.
We think they’re able to build bridges because they have more time and knowledge.

The outcome of the project is to come up with a manual for Support Workers to enable them to know where the fine lines are, where things become counterproductive.
The resource will be used for support workers to help them with social care. Support workers in mental health teams tend to stay in their post but care home staff tend to swap and change.

Continuity is so important but only with the right person with the right skills…. But it’s important that Support workers be guided towards best practice…..often Support workers can go into a situation and build the bridges needed for Home Care to restart.

It’s being funded by National Institute for Health Research and the final go ahead for this qualitative study should be in the summer……nice to be involved in something early doors.

After Cathryn took me home I was on Billy duty, so trundled along the back lane of the village bathed in sunshine….

And let Billy out for his afternoon trundle of his patch……but it did involve him trying to follow me back home for a while…….

Me and my shadow……or more accurately Billy and my shadow……..

A bit of light relief for a Friday…

After all the debate on language during the week I thought I might give you some light relief for the weekend…..

Those that read my blog have hopefully heard the tales of Billy the cat in the past…….well, Sarah, my oldest daughter, recently adopted 2 elderly cats who once lived with a lady who is now in a nursing home. They’ve always been indoor cats so never had the adventures of Billy…..Sarah is their new playmate now and they’re settling in well and they’ve now got use to me as well……..

I got to thinking, what if they met Billy…..? What would they all say to each other?…….
Well, I think it might go something like this if they came face to face…….

Hope everyone has a nice weekend😻

Young Onset Conference…..Part 3

And so to the final blog on the conference……….

So before lunch it was my turn ….

Always have my daughters with me on the slide behind me....
I always have my daughters with me on the slide behind me….

…..I spoke about employment and what works and what doesn’t. I ended my ramblings by saying:

“Not to have a choice shouldn’t be an option – we have rights as much as anyone else. I’m a great believer that everyone has a talent – when we’re given a diagnosis we simply have to learn to adjust those talents and even seek new ones – employers need to seek out and support us to continue to use our talents”

Then Sue and Jannine were after me – I worked with them on their project.
They said it soon became apparent that very little is known about people with dementia in the workplace. They grounded their study around speaking to me, line managers, other staff, HR OH, train unions.

They weren’t able to speak to an existing employee living with dementia for a variety of reasons.
The picture painted isn’t a good one, but they did come across some good practice. Nice to see them again and hear how it had all gone and their plans for the future….

Libby Brown – an occupational therapist from Havering Memory service finished off our session. She focused on Bett and Tony’s story, who were in the audience.Bett has dementia and is still working.
She then played a short video where Bett spoke of why she liked to work. And the the role the healthcare professionals – namely Libby – played, providing advice and advocacy. They informed her employer about the Equality Act of 2010 on Betts behalf.
They helped Bett to come up coping strategies at work.
This talk demonstrates the post code lottery of support available…………the support Bett received enabled her to gain her confidence again and simple strategies means she’s still in her post.

Again, the continuing theme of specialist knowledge needed by professionals……….changing mindsets inside and outside the workplace is the hardest challenge…..

We had a nice lunch while the last session was going on while it was quiet. After I’d had a cuppa I finally found Pat and Mel! And we put the world to rights with a cuddle and a few photos of Neville the cat😻

The afternoon session was a workshop for people living with dementia and was being filmed.
Initially we had one huge circle
However, Rachel redesigned us so we had an inner and outer circle – inner for people with dementia and outer for the supporters. I was so pleased to see so many people with dementia there….

We talked about the things we like to do but need support to be able to continue

One chap spoke of a dog he looks after at the weekend – the dog is part of his care package now as it’s enhanced his life! Bit like Billy the cat!

We talked about the value of social media in keeping us connected and feeling less isolated – I live alone and social media helps stop me feeling lonely because I know there’s always someone out there.

There’s a tendency to think that ‘it’s only happening to me’ – whereas here we are in a room hearing similar stories from everyone………
The best thing about this 45 minute session, so perfectly run by Rachel Niblock, was that everyone spoke – even people who hadn’t spoken before, which was sheer magic to hear. One lady who hadn’t spoken before in public simply said:

“Support is life giving”

Sums it all up perfectly really…….

A great conference ended with the long journey home but it had been worth the trip just to see so many old and new friends who are also living with dementia…..and the wonderful Botanical Gardens….

Read more about our new Network at:


Good news in the news today!

Hello all – extra blog today as 2 pieces of good news in the papers today. Dementia Friends has announced that it’s reached it’s 1 million target of Dementia Friends – MAGIC! – now let’s head for the second million!!. Also David Cameron has announced that all NHS staff will be given training in understanding dementia – why this hasn’t happened before, I just don’t understand, but at last the NHS is having to do what it should have automatically been doing….now we just need to make sure it happens and also that all parties will support all initiatives mentioned below!

I’m sure it’s being reported on in other newspapers but below is the Article from the Guardian today by Frances Perraudin – note, he also mentions the launch of the online service Join Dementia Research. I’m down in London on Tuesday at the launch – more news on next Tuesdays blog:

‘David Cameron has announced that all NHS staff – from hospital porters to surgeons – will be given training in understanding dementia, as part of a series of measures designed to tackle the condition.

Launching the next phase of the government’s “challenge on dementia” programme, the prime minister pledged £300m of investment into dementia research over the next parliament and announced the creation of a new global fund on dementia, which would see investors from the public and private sectors unite to fund a range of research projects.

Cameron also announced that an international dementia institute would be established in England within the next five years and an online and telephone service to facilitate people taking part in dementia research studies is to be launched next week.

Professor Alistair Burns, NHS England’s national clinical director for dementia, welcomed the announcement and said that awareness of dementia was at its highest level yet: “We are beginning to change the way society respects and treats people with dementia. We can change the lives of tens of thousands of people for the better if we can continue to raise awareness, invest in the search for new treatments, and most importantly improve the lives of people with dementia and their carers.”

David Cameron first launched a series of measures aimed at tackling dementia in 2012 before hosting the first ever dedicated G8 event on dementia in 2013. He announced funding for dementia research would rise to £66m by 2015, up from £26.6m in 2010.

It is estimated that there will be 1 million people living with dementia in the UK by 2025. Dementia is now one of the greatest burdens on global healthcare systems, costing an estimated £370bn – about 1% of the world’s GDP.

Global spending on dementia is five times lower than research on cancer, with only three new drugs making it on to the market in the last 15 years.

Andy Burnham MP, Labour’s shadow health secretary, welcomed the prime minister’s announcement, saying it would “help us face one of the greatest challenges of the 21st century”.

But he said that, as well as looking to the future, Cameron needs to do much more to help dementia sufferers now.

Burnham said: “Dementia sufferers, their families and carers are now paying spiralling care charges under this government. These are David Cameron’s hidden ‘dementia taxes’. Hundreds of thousands of vulnerable older people have lost social care support since David Cameron entered Downing Street.

“Social care in England is close to collapse but this Government is in denial about it. Labour is committed to ending the culture of slap-dash 15-minute care visits and employing an extra 5,000 care workers.”

p.s. Andy Burnham needs a ticking off for using the word ‘sufferer’ – maybe he needs to attend a Dementia Friends session!!!!!!!!