Category Archives: Raising awareness

Dementia Diaries recordings……..

For those who havn’t found or heard of Dementia Diaries. It’s a web site where people with dementia, including me and all my playmates,  record our opinions or feelings about anything and everything.

Rachel and Philly often give us a topic to speak about and apparently they asked for our views on what the right housing means to us……I say ‘apparently’ because Rachel tweeted a recording of me doing just that, but I remember nothing about recording it!😳

But I know it’s me, it’s my voice. So here it is if you’d like to listen to my way of remaining in my own home, which I call my ‘haven’ and the adaptions I’ve made.

https://dementiadiaries.org/entry/10135/what-does-the-right-housing-mean-to-me

We’re always looking for people to transcribe our ramblings. They’re only short and there are detailed instructions on the web site. Lovely people from all over the world have transcribed for us but we’re always looking for more. If you’re interested just click on ‘How can I volunteer to transcribe diaries’ on the black strip at the top of the page.

You can also hear lots more of my playmates……..lots more of our thoughts and feelings. It’s a great resource for anyone affected by dementia and a learning tool for professionals……

In the midst of a busy week…..

On Monday I made the long journey to Bristol. I hate Cross Country Trains so much that I went via London for the journey there.

I’d been asked a long time ago if I would speak at the BRACE annual conference and be interviewed by ex newsreader, Sir Martyn Lewis.

Each year they hold a national dementia conference featuring some of the UK’s leading thinkers on dementia (scientists, campaigners, politicians, care providers) and hosted by former newsreader Sir Martyn Lewis. So it was lovely to be asked to be part of this event.

The journey didn’t start off well as there was much confusion at the first station due to a delayed train, me misreading the information board and being on the wrong platform with a heavy suitcase….🙄. I ended up getting so confused that I got on the wrong train, but all trains go to Hull so I thought I’d work it all out and start again once we got there.


At least the sun was shining……

Once I got to London I went over to Paddington to catch the GWR Bristol train. I don’t travel with them very often, which is such a shame as the staff were very friendly and the seat reservations are much easier to understand than the new LNER east coast system..red for taken, green for vacant – simple……..and in words as well…….simple is often forgotten……

And so I ended up changing in Hull when I didn’t need to but hey ho……each of my connections were on time after that and kind smiley people helped me on and off with my laden suitcase.

But, hey, many hours later I arrived in Bristol and the taxi took me the short ride to the hotel. The Team, including Martin Broach were setting up the room in preparation so I went and said hello to find where I was going.

The next morning I trundled up to the top of the lift and found people arriving. Someone from the Alzheimers Society Research Network came over and said hello and then a Twitter pal came and made herself know – it was the only reason she’d come! Awww, I love Twitter pals……and then even more followed……so nice to see so many….

The conference was called #Together 4 Dementia

I met a woman at the tea stand who said her partner, who was now in a nursing home had spoken out lots about having dementia and still took part in research even though she was now in a nursing home – wonderful. Me thinks that where you are is irrelevant. It’s important that people of every stage take part in research.

It was still quiet as I’d purposely arrived early so lots of time for cups of tea and typing my blog, looking round the stands, before Mark introduced me to Martyn Lewis. We chatted about hotel showers and had to have a piccie

And then it was time to start. The day was being filmed as well, which is always nice.

Mark started off the day welcoming everyone to the Brace Conference. The James Tudor foundation funded the conference ….he then introduced Sir Martyn Lewis. Martyn has supported the Brace Charity for the last 5 years.

He said we were here for the ‘news of tomorrow’………and ‘All research needs to be put into context’ as many headlines offer hope but reading the article offers little evidence. He then showed a very simple video which you can watch here……

https://www.alzheimers-brace.org/timesupdementia

Professor Clive Ballard from Exeter Uni, was the first speaker talking about Psychological Symptoms in people with or a risk of Dementia……..he spoke of there not having been any licensed treatment for dementia for over 20 years. He said we’d been very one-dimensional when looking at dementia – looking at memory issues – but maybe we should look further at depression and mild behavioural impairment as markers. He spoke of the research they’re doing with this in mind…… Precision medicine exists in cancer, why not in dementia?

….good that a different angle is being investigated even though they’re at the very very early stages.

Up next was Chloe Meineck talking about her Music Memory Box. She has worked with people with dementia to design the boxes. Each piece from the box is linked to a piece of music. A sensor is stuck on each piece so when they’re lifted out, they play the chosen music. Unlike some things, it can translate to any culture as it’s personalised to that person.

More can be found here:

https://www.watershed.co.uk/studio/projects/music-memory-box

After Chloe came researchers from Bristol Uni talking about their research on Connections between dementia and Oral Bacteria. Sadly I think the presenter was quite nervous or something and I didn’t understand this one as it was very confusing. The theory sounded very interesting re the connection with dementia but I couldn’t understand the detail…shame…

The last session before lunch was me being interviewed by Martyn….
It seemed to go down very well and I finished with my story of Billy……..obviously couldn’t type so can’t remember the detail.

Over lunch I signed copies of my book…….we seemed to sell a bucketful so that was so kind of people to buy it and to say such nice things…..

After lunch it was Tony Hall from Bristol Dementia Action Alliance about the state of play in Bristol.

“Dementia has no barriers and we’re not going to create any”

They seem to do an awful lot in this area and Tony was full of funny tales…….wasn’t quick enough to write them down as brain was starting to shut down…….

Nothing else typed as I was getting very tired and brain must have closed up shop…..

There were people from all walks of life at the conference – local NHS Trust, Community Health, Universities, Researchers, Health Care Service providers and many many more which was so nice to see. I had a wonderful day and met so many wonderful new people…….one person handed me a card during the book signing. I didn’t have time to read it until I was on the train. It was from an Occupational Therapist called Diana and the card thanked me for writing my book. Part of her message said……

”I work in a Memory Clinic ……and have students with me for several weeks. I always give them a copy of your book……….”

Amazing end to an exhausting day………..

A Day at St Gemmas Hospice Leeds…..

Yesterday I’d been invited to speak at St Gemma’s Hospice in Leeds as part of a Community of Practice Event along with Clare Mason and Professor Murna Downs from Bradford University.

By pure coincidence I lived near the hospice for a year when I lived in Street Lane in Leeds. I actually remember going there for some reason but can’t remember why…….

Anyway, a cold morning awaited me and I headed out for the taxi with no coat, only to go in reverse and put my winter coat on before heading off to the station in the taxi……🙄 It was a beautiful morning trundling past the Humber…

Clare met the taxi outside the Hospice and paid the fare for me and then I was shown in and a cuppa tea was waiting for me. Murna and Lyndsey also arrived and had a huggle

The writing above the door of the room was wonderful to see…..

Improving Patient Care Through Knowledge”

Bradford Uni have worked in collaboration with St Gemma’s  hospice funded by Health Education Yorks & Humber……the staff were those who had attended the Train the Trainer course from 11 Hospices. But due to circumstances 7 were represented today….

The Hospice staff are naturally caring but it’s the added issue of dementia that causes issues. For example, a visitor with dementia simply forgetting the person has cancer, especially if that person is a partner……but so much else obviously
Jane from St Gemmas did the housekeeping bit before we all went round and introduced ourselves.

Murna gave the initial talk around the NHS Pathway for dementia and here specifically for dying well with dementia but also living as well as you can with advanced dementia. We need all staff to have access to the knowledge to put into practice the key learning outcomes…….

“We have to look at the Full Human Being with a medically complex condition……”

with many influences of background, age, biography etc and also with many involved – the person their family, care staff, Clinical experts and pastoral Carers……

Language – living with advanced dementia, end of life care, actively dying or terminal phase – what do we mean when we talk about this in the hospice setting.

“Are we involved in specialist care or simply humanistic care? “ asked Murna

We shouldn’t just invest in the ‘end of life’ care when death is imminent …….

I chipped in as there was lots of talk of living and dying well, because these are the words used on the NHS Pathway..

But I have a problem with this as ‘well’ for some people is very different for others. I prefer ‘as well as you can’. For some people, just getting out of bed one day is an achievement and needs to be celebrated. So the so called ‘person centred care’ isn’t ….because it can make those who struggle feel worse because their best is very different from another person. Dying well might not be achievable in all case but if the staff ‘do their best in the circumstances’ that is dying as well as is possible.

So now is was up to the hospices to feedback their learning from having delivered the course to their own staff…St Gemma’s  hospice was first and Gemma came up with how ALL staff benefit from training – the food staff, volunteers, Housekeeping and reception staff not just clinical staff.
Gemma spoke of the challenges, staffing issues and how to free staff etc but all attendees fed back positive comments.

Wheatfields Hospice went through their presentation and have all their staff going through the Foundation training before moving on to the more advanced which meant the groups were of mixed ability which made the groups so varied.

St Catherines Hospice in Scarborough. They started training 3 years ago and have trained 102 staff to date of all skills through the Foundation Course. Again the difficulty of getting staff to attend was highlighted.

St Leonards Hospice were up next and they both knew my daughter Sarah and worked with her when she was at York They spoke of needing to be more aware of staff circumstances as you might not know they are caring for someone with dementia or someone may have died in their family from dementia….
It’s important for those staff who believe they know too much to attend a Foundation course. It’s how you approach those staff and often it’s a case of stating that they need to attend to share their experience.

By having volunteers and non clinical staff on the same Foundation as Clinical staff shows the value placed on ALL staff. Hospices can’t exist without the working together of all teams.

Barnsley Hospice – Again the feedback was that it was nice to have all different skill groups to be together and mix together.

Harrogate Hospice was last but not least and also said how mixed staff groups worked very well. The expectation there is that everyone will attend, it’s not optional. The facilitator decide who attends what session so the mix is good

After lunch me, Clare, Murna and Lyndsey were taken on a tour of the Hospice and they asked me to comment on a room they were hoping to adapt. I gave a few ideas for change.
We headed out into the beautiful garden and couldn’t resist a piccie….

Once everyone was back in the room it was then my turn to speak. I covered as much as I could in the time allowed but the one thing that came out as most useful was when I said:

I wonder how many of you always sleep on the same side of the bed? Most people do. But when you’re in hospital, or you’re moved into a Care Home or Hospice people are often helped into bed at whichever side is convenient for the nurse – imagine how confusing that can be for someone with dementia. Or think when dressing people which arm they normally put in first when putting on a shirt or coat?”

There were many flashing lightbulbs moments and some lovely comments and observations made after I’d finished. It was almost time for me to go but we snook in time for a group photo

 

During the discussion before I left on the End of Life Module Terminal Agitation was raised. Me and Clare were saying how at the End of Life it’s so important to see the person and not let the dementia prevent you from doing the best for that person.

Treating the symptoms the same as someone without dementia…”

said Gemma from St Gemmas.

Wonderful that there was no sight or sound of ‘suffering’ in either the talking or on slides……. All were willing to learn and understand more and couldn’t have been more receptive. They, as trainers, are all doing their bit to spread the word and could not have had better people to train them than those from Bradford Uni……..

Admiral Nurse Forum….It’s a Family Affair 2…

Part 2.

So following on from yesterdays blog…….this is the rest of the afternoon first.

After a very much needed cuppa tea, I went to the workshop on ‘Appropriate Housing and Support for those with Young Onset dementia’ by Ceri Garret and was pleased to see Irish playmate Kathy Ryan on a film at the beginning.

It was so nice to keep spotting people who I think are twitter friends in the room😍

Cheri used an Action Research methodology approach to her study which she carried out herself. So many other research projects should be action research to avoid delay in implementing or by showing how something didn’t work or needed more work. Just by her going to ask these questions, highlighted the lack of support available for us.

She said how we need peer support in every area as professional support like Admiral nurses is needed at specific times yet peer support is needed for far more of the time – YEH!

Professional feedback was just how I expected – how delivering a diagnosis was uncomfortable and how they needed more training. The stigma is still very prominent in many areas including the denial of the diagnosis.

How can Admiral nurse support families in making decisions? – Ceri admitted that during her research she often didn’t know where to signpost these people because it was difficult to find.

Kirklees has a Young Onset dementia social worker, a team of 4 Young onset dementia team and an Admiral Nurse who specialises in Young Onset. Shows the post code lottery exists loud and clearly. I’d be interested to hear from people who use the service or who have been diagnosed in that area, whether it actually works and whether people know what exists in that area – I hope so.

She ended with Part 2 of Kathy Ryans film on Communicating the diagnosis. We need to be helped to see what is good and helpful for those diagnosed and for those around them.
A wonderful quote from. Kathy was:

Listen to us and we can create a better path for those following on behind us to follow” Wonderful………❤️

A very good workshop highlighting the specific issues and lacking age appropriateness in the community.

The afternoon ended with a play called ‘Don’t leave me now’ – I’m sure I’ve seen it before but havn’t a clue where……didn’t type as very late in the day for me, so couldn’t really follow what was happening. However you could hear a pin drop, so it was either very good or everyone was tired like me🤯😴

It was a beautiful evening as we tumbled out of the venue. Caroline took me, Maureen, Suzy, George and Toby to the hotel…..what we didn’t realise was that it was the wrong hotel and we were booked in the same name but different venue 🤣….very funny but we got a cab and soon arrived and checked in. I was then soooo exhausted that I went into hibernation for the rest of the evening……..


Evening view from my room😍

 

The morning dawned cloudy and windy. I found a new tracker system in Twitter itself as my corridor mates realised who was up by who was on twitter🤣

We all met up downstairs and had a lovely chat over breakfast before heading off to the venue in the taxi.

We were met by Rachel and I found the most amazing piccie opportunity

I was saying to Rachel what a wonderfully warm family Admiral Nurses are. So often a massive group of staff meet and you can tell how some have attended because they’ve been asked to attend whereas here everyone had a smiley face and the room felt like one big hug.

I was speaking after Paul Edwards, Director of Clinical Services opened the final day.
He started by showing the lovely new children’s video aimed at children 8-12years.

https://www.dementiauk.org/childrenandyoungpeople/

I was glad to hear it was made with the help of young children including Suzy Websters daughter👍

It was then my turn where one of the things I highlighted was how much support Admiral nurses could offer in a variety of ways including teaching people how to communicate as it’s not natural for every family. I said:

Me and my daughters have said how talking has been the one thing that has helped us all cope with dementia. But it has to be two way. They not only need to know what I’m struggling with but I, as a mum, need to know what their struggles are, otherwise how can we help one another?”

They kindly gave me a wonderful standing ovation which was very humbling….

My final speaker before I left was Dr Jenny La Fontaine who spoke of the wonderful Angela Project for which I’m also a participant.

She spoke of the challenges and how it still amazes her that she has to highlight in some areas that Young Onset Dementia exists.

Services are commonly focussed on older people and the impact upon all family members increases the already high stress levels.

You ‘expect’ to get old, to age, but we don’t ‘expect’ dementia in our 30s, 40s,and 50s….and younger.

We know what doesn’t work but it’s important to get information on those that do work.
They’re interviewing commissioners and service providers to find out their barriers and challenges and produce a draft guidance that will be fit for purpose in the current financial climate which won’t just sit on the shelf.

It’s clearly showed the value of peer support being available and one slide showed the value of communication skills being delivered……AND continuity of services…….people who are there in the background and available when needed…..just like Admiral nures……

Jenny showed a wonderful slide at the end on ‘Why did Support feel positive?’

Sadly it was time for me to leave but what a good high to leave on………and not before we had a group piccie of me, George, Maureen, Suzy and Toby who are all member of the Admiral Nurse LEAP group………along with Rachel Thompson


Toby, Maureen, Rachel, me, George and Suzy😍

 

Clearly Admiral Nurses need to become as common place as MacMillan Nurses are for those with cancer…….imagine………

Admiral Nurse Forum….It’s a Family Affair…

Part 1

I woke up yesterday morning with a head to match the weather. It was drizzly and misty outside and my head felt the same – not a good start to the beginning of a chaotic week.

Luckily I’d got everything ready a couple of days ago so I was able to be on automatic. I’d also been feeling very stressed as an event I was due to travel to on Thursday had booked me a train ticket from Birmingham to Barnstaple but hadn’t booked me on the train I’d asked for or a seat. It’s a very long journey on my least favourite train company – Cross Country.
However, I was hopeful that the woman in my local ticket office might be able to help. The taxi got me to the station in plenty of time and I went over and explained the situation as best I could on a foggy day and feeling very tearful. The woman simply smiled, asked for my ticket and said,

“Let me sort you out’

Within minutes the smiley face handed me just what I needed. My booked train and booked seats. I felt an enormous relief lifted from me and could have hugged the woman.
How can any organiser ask me to speak at an event miles from home at the other end of the country and not book me on the train I’d asked for with the seat I’d asked for?…….…….☹️

Anyway, back to yesterday. I’d been asked By Hilda Hayo, to speak at the 2 day Annual Forum for Admiral nurses in Nottingham. The theme of this years conference was the family – “Working with Families – It’s a Family Affair”

I’m actually speak on Tuesday but needed to travel yesterday due to the timings so decided to attend the first half day as well. Toby Williamson had agreed to meet me at the station, however, as usual train plans went array but for once it wasn’t mine! So a plan B was put into action and Caroline and Maureen were put into action to meet me. And who tapped me on the shoulder but my lovely playmate George Rook. 😊

Anyway they kindly gave us a lift to the venue at Nottingham Uni and we were met by Rachel Thompson, a cuppa tea and lunch …perfect.

Rachel started off the day by talking about the different interpretation of the word ‘Families’ and showed a lovely slide…


“Families are like branches on a tree. We grow in different directions yet our roots remain one”

The Admiral Nurse family are growing all the time and we celebrated new people and those who’d been an Admiral nurse for over 15 years. Everyone at some point stood up and was thanked so over 240 people in the audience.

The first speaker was Professor David Croisdale-Appleby who gave an update from the board of Trustees.

It was then the turn to hear Hilda Hayo, Chief Admiral Nurse. Hilda took us through the start of the charity, with Admiral Nurses being named after Admiral Joe. She moved through the decades and beyond into the future. Wonderful to hear how they’ve grown and matured.

My lovely friend Professor Jan Oyebode from Bradford University was the last speaker before cuppa tea break. She spoke about the existence of family diversity within the family of dementia and snook in a piccie of me and my daughters – so lovely to see their smiling faces😍

We need to think of the family and not the individual. How do different families function with a diagnosis, and what are the differences of the needs of different family set ups – those living alone, gay couples, ethic minorities, disconnected families and couples and all the myriad of other types of relationships all have needs and some needs are very different.

How do families negotiate the impact dementia is having on relationships? Some talk and share and other struggle to cope with dementia’s intrusion into the relationship.

What is a Family and what is family centred work? Jan showed how families go beyond the dyad and showed a wonderful photo of generations of a family that must have included 20 or 30 people and not forgetting to include pets. So ‘family’ relationships doesn’t always mean 2 people. Constructing a Genogram (had to look up that word! ) is a good way to see how families work and who may be involved

Where people have a shared goal their relationship stay stronger.

Jan implied there is very little research on the benefit of interventions with the family as it’s very complex due to the complexity of families and maybe that’s why there’s not much evidence based research. We need more so commissioners can see the value in print 🙄

A wonderfully refreshing talk by Jan….⭐️

Thankfully time for a cuppa as my head was starting to bang…….I sat with George, the lovely Susie Webster and Toby. I’d already said to George how MacMillan nurses must have been in the same position as Admiral nurses are now. It would be good to hear how they overcame initial difficulties, how they promoted themselves to those who hold the purse strings and how they promoted themselves to the public and increased their numbers. We need Admiral Nurses to be as well known and available as MacMillan Nurses….

More on the rest of the afternoon tomorrow and including the second day…..

Clearly we have much still to do……

So often at conferences, events and even on social media….we’re speaking, in the main, to the converted…..those who get it. That’s why I’m very selective as to which events I attend now. I want to speak to people who havn’t heard it all before and who may be hearing it for the first time. That’s also one reason for writing my book.

My article published in the New York Times (I don’t think I’ll ever get fed up of saying that sentence) produced many kind comments. I only read a few as I know full well that I should never read comments, but the one that saddened me most was:

“I am a little suspicious when someone writes a book about their dementia and continues to work. I just wonder if her condition really constitutes dementia.”

You think you’re finally getting there, finally changing perceptions, and then along comes a sentence like that which shows how much is still to be done.

I actually felt sorry for the person. I’d hate to comment on something which I knew so little about. That person must have thought they knew lots to make such a comment…..that’s what saddens me most.

I often worry  about reblogging about the same subject but one new reader might be seeing it for the first time but I’ve learnt how unimportant that is and many from the past might make another appearance.

In the grand scheme of things we’ve only reached a small percentage of the population so there is still a long long way to go.

The more people are diagnosed early, the more they can adjust and adapt before the later stages arrived. Four years ago, when I was diagnosed. I had days when I felt dementia free because that is the how it is. Some playmates, on those days, comments how they think the clinicians have got it wrong, only for some days later dementia slaps them in the face and announces its presence loud and clear.

For me the number of dementia free days have become less and less as the years have gone by and now it’s with me all the time, dementia free days a distant memory – that’s been my progression ……but my typing has allowed me to keep my intellect in tact and I’ll cling on to that for as long as I can.  And that’s what people fail to understand. We’re not stripped of all capacity from the point of diagnosis. Some decline quicker than others for various reasons.

That’s why I believe it must be so hard for those supporters to hear about us surviving each day as we do when their loved ones have declined quickly. It doesn’t make sense to them because their experience is very different.

We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t.

Our experiences are different.

Finally, going back to the article in the New York Times….. the image they had accompanying the article looked suspiciously like a man – why a man when a woman was writing the article……but then me thinks that’s a whole new topic in itself…….

You can hear me speaking a shortened version of this blog on Dementia Diaries – a wonderful resource where many people with dementia are able to use their voice to be heard….

https://dementiadiaries.org/entry/9068/in-the-grand-scheme-of-things-weve-only-reached-a-small-percentage-of-the-population-so-there-is-still-a-long-long-way-to-go

A letter to those in Power…….

To those who can make change happen……

So here we are again, my fourth experience of World Alzheimer’s Month since I received my diagnosis 4 years ago.

I must confess that ‘dementia’ hadn’t entered my vocabulary before the diagnosis. I knew little about it and I had no experience of it in my family. Now it is all consuming and with me twenty four hours a day.

When I was diagnosed I consumed everything before me, written by others living with the condition. I noted their resilience, their campaigns, their desire for change. So why, four years down the line, am I too writing about the same need for change, writing about the same subjects, writing about the same as was written about long before my diagnosis?

If I’d been diagnosed with cancer, the phone would have been ringing – a pathway would have been agreed and services would have kicked in. So why when diagnosed with dementia does the phone remain silent. Why when the consultant gives the diagnosis do they discharge you as there’s no more they can do?

Wouldn’t it be wonderful if social care was a job of choice, with recognition, status, and a value placed on the skills of the staff?
Wouldn’t it be nice if individuals were treated as simply that, individuals with individual needs?
Wouldn’t it be nice if policy makers actually listened to the people that mattered and had most knowledge?

“Nice’ is a strange word in these circumstances. Surely it should be a necessity.

Just because we have dementia doesn’t mean we don’t have Rights…

For so long people with dementia have been shoe horned into the general services which others believe is our need instead of individually assessing need. Now we’re beginning to rise in numbers and TALK in public, there’s a realisation of the individuality of ‘need’ – we don’t all ‘fit’ into current services provided.

It’s almost as if it’s too late for all those of us currently living with dementia, both in the early mid and late stages and all stages in between. It feels like we’re the guinea pigs being used to try to sort out this mess so future generations can benefit.

If everyone currently living with dementia, in whatever stage, has to be guinea pigs for change to happen, then so be it, but change there has to be. No more silence, no more voices of the few, no more talk and good intentions – there has to be actions.

In the next 5 years huge social care change must take place so that in 10 years time, we’re proud of what the country has in place. People living with cancer aren’t shoe horned into inappropriate treatment, those recovering from a stroke aren’t shoe horned into inappropriate treatment….so why are people with dementia? Dementia lags behind in medical innovation so the need for social transformation is greater.

We don’t have innovative medical procedures to follow or a plethora of choice on medication because research has been sadly underfunded so the need for social transformation is greater. In my mind this should naturally lead clinicians to use social prescribing instead of automatically looking at the medical model and then discharging us.

We need to be realistic though and also examine various ways to fund this enormous need – what should and shouldn’t be funded – as we all know there is no infinite money in the pot.

Yes it is a daunting job to transform social care, but then surely it was a daunting job to create the NHS in the first place, but it happened.

When I was diagnosed, I was fortunate, I was resilient …I knew how the system worked. Many others would have sat at home waiting to die, not knowing which way to turn or where to look for support.

There are tiny pockets of good support, tiny pockets of good care in hospitals, tiny pockets of good care in care homes. But why tiny?
More than anything we need consistency. The post code lottery that currently exists is shameful.

Let’s not rely on the medical model of care any more and instead focus on the social model that will impact far more on resources in the long run. For far too long services wait for the crisis to occur, wait until families can take no more before intervening. If people are supported with emotional, financial and practical advice from the point of diagnosis, they would be more educated on what they can do for themselves. They wouldn’t head to their Gp with depression – not only the person with dementia, but families who can’t cope.
If care homes were more educated on how to detect conditions in people with dementia that they could then avoid, there wouldn’t be a need for unnecessary hospital admissions.

We are at a crisis in the NHS and Social Care services. If you don’t listen now and Act now, the situation will simply get worse as the ageing population creeps ever higher putting even more pressure on services.

But there is light because there are ways to avoid this crisis – yes, a mammoth task ahead, but what’s the alternative to not dealing with it. Not dealing with it won’t make the crisis go away.

I don’t want my children to be faced with the chaos of care when I can no longer care for myself and I’m sure you wouldn’t want your children to face that challenge either.

Regards from someone who doesn’t have time on their side……

Bradford Literature Festival…..

So yesterday I was lucky enough to have been invited to be on stage at Bradford Literature Festival. I would be on with 3 people I knew, Prof Murna Downs. Jules Montague, Neurologist, Simon McDermott (Song a minute man) and me……We were being interviewed about our individual work by Colin Philpott.

The event was due to be at the Dye House but on the journey there, trying to find a piccie for this, I suddenly noticed they’d changed the venue😳 and it was now at the Advanced Technology Centre🙈 – will have to start a new plan on the train for how to find it……good job I noticed🙄…slight churning of tummy……but it was a sunny day…..🙄

Back to the trundle… the first 2 trains were on time and the Humber looked glorious in the sunshine….

Naively, I thought the trains would be quieter on a Sunday lunch time……wrong ………very busy, very noisy🙉……..shoppers, party goers and people returning from a weekend away maybe……don’t think I’ve ever been to an event on a Sunday before……very different people on the trains, no suits, more t-shirts and jolliness, except for the heat of course…..no one likes travelling in the heat and Sunday travel is never quite as straight forward. Even our ticket collector was asking if people were returning today as some trains had already been cancelled and the train to Bradford was a very old train…..with wooden rescue ladders….😳

Anyway got to Bradford and set google maps to find my hotel…….not realising I’d set it to drive instead of walk😱…….and it took me all over the place and I got in a right pickle….😩but found it eventually just looking for the familiar sign…..it should have taken me 5 minutes…….20 later, I found it🤐..room not ready…..😶..so, determined not to get stressed I sat in the lounge tapping away on my ipad and playing solitaire….

Once I’d check in and had a cuppa or 3 in my room, I walked over into City Square to check the venue location and a nice chappie printed me out a map. I went back to my room for a few more cuppas before making my way over to the Alhambra Theatre, where the Green Room was situated and where I hoped to meet some of the others.

As luck would have it, Colin Philpott was already there and we chatted about this and that until Jules arrived and it was time to make our way to the venue. Murna and Simon were already there and the audience had also started to gather.

After more hugs and catch ups, it was time for the mikes to be fitted and time for a piccie…

Before we knew it the audience were being allowed in and we were off. The mix on stage was wonderful; me living with dementia, Simon who cares for his dad, Jules the Neurologist who specialises in diagnosing those with Young Onset and Murna Downs, Professor of Dementia Studies………….

Colin started off by asking us each in turn about our books before asking us three general questions. I didn’t type so not sure of everything we spoke about but I know I kept referring to the smiley face…..how a smiley face eats into no ones budget; how a smiley face can ease a thousand worries and how I always look for a smiley face if I get in a pickle, in the hope that they’ll help me……I must have had smiley faces on my mind!🤣

There were lots of questions from the audience and it was over in a flash. Many people came up and said kind things afterwards and we were able to sign the books people had bought.

I felt I went back to my hotel with armful of hugs and kind words…….

It was another lovely occasion also made possible since my diagnosis of dementia……..who would have thought eh?

Addressing Directors of Adult Social Services…..

A while ago Jeremy Hughes had asked if I’d speak at the annual spring seminar for Directors of Social Services.

Apparently it’s very hard to get an invite to this as it’s not a public meeting but due to the centrality of dementia to the current social care crisis, they invited me to address the Conference in Stafford. Some of the focus of their conference will be on the Prime Ministers Challenge on Dementia and The Government Green Paper on Social Care, so only right someone with dementia was there.

I’m never sure how much of the message they listen to at these type of meetings but I was prepared to give it a go and make sure my message was loud and clear.

I’ve had 3 very enjoyable but busy listening and speaking days so I’d had a banging headache since day one – a simple side effect from the effort that goes into listening and speaking! But on Tuesday night, during my sleep, wake, sleep, wake routine of the dark, I woke up at midnight to find my head clear and bright! It felt like spring had arrived in my head after a bad storm. I almost wanted to get up to enjoy it in case it didn’t last😂…..but I needn’t have worried as I woke to find the sun has disappeared but at least the storm had stopped banging about in my head..

My taxi was on time and the first train on time…..once I got to Hull I found what I thought was my train but it said it was going to Leeds😱. I found the driver and asked him, only for him to say he needed to make a few phone calls as he thought he was going to Manchester too😳…………Obviously something had gone wrong somewhere and he came on the intercom saying he was taking the train to Manchester….🙄

I wasn’t due to speak until 4.30….it will be interesting to see how many have left before I get up and speak. I arrive at 12 so I’ll be able to see…….the events lasts for 3 days so maybe some of what I say will register as I’m at the end of the first day….

Helen Foster, Director of Operations was due to meet me at the station and look after me for the duration as I needed to stay overnight due to speaking so late.

It was very misty, murky and drizzly as we trundled out of Hull….I couldn’t even take a photo of the Humber as it was hardly visible and the windows were very dirty……..(don’t they realise the importance of clean train windows!🤣)

Anyway, got to Manchester and caught the final train to Stafford……hadn’t realised it was my least favourite train company……Cross Country🤦‍♀️ but at least it was only for an hour……

Helen met me as promised at the station, having sent me a photo of herself and then we proceeded to have a rare old adventure to find the conference centre, which entailed going through narrow flooded country lanes and into the middle of nowhere!! Good job Helen had a 4×4! We chatted happily in the car and Helen has a therapy dog which she takes into Care Homes and a children’s hospice – Sasha………….very jealous…….


Love the casual crossed legs……

We booked in and they immediately seemed to know who we were and someone came along to say hello and that she would be hearing me speak somewhere later in the year😳

Helen then earned her brownie point by getting me a much needed cuppa as I hadn’t had once since I left home😱……

We joined at the start of the afternoon plenary so we could see the venue etc. I didn’t want to type about the content as it wasn’t a public meeting and I didn’t want to put people off chatting by having my ipad open!!

As you can see from the programme below, the first speaker of the afternoon was the Minister for Social Care. the second was the Shadow Minister and the third was Jon Rouse from Greater Manchester Devolution area……after a much needed cuppa, there was Ray James, National Director of Learning Disabilities who began with a short video by 2 people with learning disabilities who basically told those present to ‘Get on with it’…..wonderful!

It was finally my turn. The audience had reduced but not by many and the room was still relatively full. Helen introduced me after stating some facts and figures about dementia.

I started by inviting them to:

Imagine yourselves being given a diagnosis of Young onset dementia………”

Then spoke of the 3 Nations Dementia Working Group and Minds and Voices course in York, followed by……

In the next 5 years huge social care change must take place so that in 10 years time, we’re proud of what the country has in place. People living with cancer aren’t shoe horned into inappropriate treatment, those recovering from a stroke aren’t shoe horned into inappropriate treatment….so why are people with dementia? Dementia lags behind in medical innovation so the need for social transformation is greater.
We don’t have innovative medical procedures to follow or a plethora of choice on medication because research has been sadly underfunded so the need for social transformation is greater.”

I ended on a personal note that hopefully struck home

I don’t want my children to be faced with the chaos of care when I can no longer care for myself and I’m sure you wouldn’t want your children to face that challenge either.”

It seemed to go down well. Many came up afterwards to say thank you. I just hope my words don’t fade and become a vague memory in their busy minds………


Me and Helen…

Hoping the fog will clear…..

So following on from the earlier blog, back to the day itself. The first train was on time and I just managed, after several clicks, to get a lovely morning sky.

It was the silly o’clock train and the second train was late due to trespassers on the line🙄 but we set off and I typed, trying to get my brain working. All I can say is, thank goodness for autocorrect…….🤦‍♀️

I was heading to London to the Alzheimers Society offices at Tower Hill for the first day of our meeting. We have a new administrator, Hannah, who has settled in marvellously and is wonderfully organised and sends me all the paperwork just how I like it. I always read the paperwork on the journey as to read before would be pointless and even reading it on the train is only a little better but at least something usually stays in my head.

But today I took the paperwork out and read the words but they vanished the moment each word went by. I could sense my contribution to this meeting was going to be all but non existent if my brain didn’t decide to join me for the duration…

I desperately tried playing solitaire, anything that might help but it was no good, dementia was winning today and laughing in my face. I gave up. Closed my eyes and let the journey carry on without me. I thanked the female staff for her smiley face – I needed that this morning. The same smiley staff came along as we pulled into the station and said….”I’ll take your case” – one random act of kindness that helped so much….

Many had arrived the night before but I’m glad I chose to travel in the morning as last night wouldn’t have been a good night to be in a strange room.

I arrived at the hotel to leave my bag to find everyone in reception. I was feeling a tad overwhelmed but Jane took control and sorted me out. We walked over and had hugs and a catch up.

I sat, not quite knowing what to do with myself…..Jayne and Joyce must have noticed my predicament and sorted me out with a cuppa…
Keith had kindly brought me the Woman’s Weekly magazine from Australia which had done a 4 page piece on my book

Tommy Dunne from Liverpool and John O’Doherty said a few words as they are new to the group. Tommy’s first words were that he was now part of a ‘wow’ group that can make change happen, which was lovely.

Hilary chaired the meeting and Shelagh was vice along with Joy.

We were then joined by Gavin, Alison and Rachel from the Society to hear an update about the Rights work and our part in the Annual Conference in May.

Alison went through the conference. We’re opening the conference and have a 45 Minute session. We went through the whole programme to give us a heads up of what’s happening. Fiona Phillips and Tania Bryer are hosting the events over the 2 days.

We made our comments on the content and were happy that they were listened to.

We expect a max of 500 people each day, which is wonderful.

Gavin spoke about the theme of the conference. It’s not being called Dementia Awareness week but Dementia Action week. Our voices will set the scene around what actions we want to see.
Rachel and Keith then spoke about our session – we want it to revolve around the Dementia Statements and our Rights. Sounds quite dry but I’m sure with imagination, we can make it punchy and memorable.

John wanted a statement to retort to the comment we have all received at some point:

‘You don’t look like you’ve got dementia’

Tommy came up with:

‘You don’t look stupid’ 👍🤣😂🤣😂🤣

If any of those people who had said that to me had met me today, maybe they would have changed their mind…..

Rachel talked about Rights – how we need to make all the statements relatable to everyone in the audience.

Ideas were flowing and so many good ideas came out about what we wanted to do to wow the audience in the opening session.

After lunch it was piccie time


Must never forget those who support…….

Followed by our first speaker David Truswell from Dementia Alliance for Culture and Ethnicity (DACE)…..There’s a long history of discrimination against ethics groups accessing services and even more so for those with dementia.
“Professional assumptions about lifestyle and caregiving cultural norms of black and minority ethnic communities may inhibit help giving behaviour”
Diagnostic tools are in question about their relevance and appropriateness to black and minority ethnic communities. Language and questions in general are often inappropriate, leading to apprehension from those needing help asking for it.

Interesting comment by David for researchers to be take note of….Most of our brain research is carried out on white European brains – clinical researchers need to ask why….

Sadly I’d had enough and stopped listening…………I might even have gone to sleep as the lights were turned down………

I couldn’t concentrate after this so sadly no more notes for today….think I’d done pretty well considering. I was with friends; no judgments made………now to snuggle and hibernate in my room for the evening and hope tomorrow is a better day…….