Wednesday 1st April 2026

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After attending several meetings of a local working group in my area, it’s with a heavy heart I decided to leave the group.

I cannot sit round a table with

1. People that don’t think people with dementia should be included or involved.
2. Ignore my words, but when a professional says the exact same thing it’s accepted
3. Look straight through me as if I don’t exist
4. No back up or support

It’s like being fed to the lions!

I have never experienced anything like it in all the 6 years of attending meetings!

I have felt so alone, but looking back i think this is how some people have wanted me to feel.

Because i have a voice, opinions and i challenge, they have seen me as a possible threat. A threat for change…

Im not a threat i just want better support for people living with early onset dementia…As i keep saying it’s not all about shaking a tambourine!

We have to accommodate everyone!

I met with a lady the other week from my area, whom feels there is a definite lack of support for younger people, it’s so sad listening to people that are under supported…2026 and still nothing changes!

How do we tackle this situation? How do we create better support, how do we provide and promote an inclusive dementia service, when there are people in a working group that won’t accept we need to change and accommodate younger people!

I get so annoyed…so angry and I’m definitely tired of repeating myself.

It was just stressing me out!

So, I sent them all an email resigning from the group

Dear Working Group Members,

I hope this email finds you well. 

After several months of involvement and careful reflection, I have decided to step down from all my participation in the group. 

My primary reason is that I do not feel the group is making sufficient progress in addressing the needs of younger people living with dementia. 

While activities such as singing groups and colouring sessions are valuable for many, they do not meet the diverse, age‑appropriate needs of the early‑onset dementia community. 

I believe stronger advocacy and different approaches are required to change how society perceives and supports people with young‑onset dementia.

I am deeply disappointed and disheartened by this direction and I cannot continue my involvement while the group’s focus remains unchanged.

Thank you for the opportunity to contribute. 

I wish you all the best

It’s disheartening to feel excluded it makes me feel irrelevant and undervalued because I have dementia. It’s like my contributions don’t matter. It’s like dementia leads others to overlook me, which in the end affects my confidence to participate

If only people would realise that having someone with live experience is invaluable.

Lived experience isn’t nice to have but we do have the power to identify blind spots and flaws…We have the power to change and transform if you would only “LISTEN”

Monday 30th March 2026

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A week away from my routine is wonderful, I absolutely love seeing new sights and spending quality time with hubby.

Now I also carry a fog, “where has my routine gone?”

Where I was once able to slip straight back into how things were, living with dementia my return can be much harder than it used to be.

The first Monday morning I focus on unanswered emails, which don’t quite go to plan, those emails I had previously drafted, I accidentally delete! How on earth that happened I have no idea.

Rolling my eyes and taking a deep breath…it’s no good getting angry, I just need to try and get my brain into gear.

With messages and emails coming though whilst I’m replying to emails is confusing my brain this morning, perhaps I would be better off taking a short break, having a cup of tea and return to my emails in a short while.

The only thing is, I find if I take a short break, I forget what I was doing. This is why I always like to answer emails promptly.

I do make checklist and try my best to stick to them, but I can’t guarantee that will work, as I get easily distracted these days

I do have a calendar on the wall, and my diary which helps a little, what I really need is a personal assistant!

When I have taken a short break away from all the meetings, and emails. I have to rebuild my routines gradually. I do expect everything to fall back into place immediately and I totally forget that my head works differently now, and I do have to reintroduce my routine of home

I think I secretly like to try and forget I have dementia and just expect everything to run smoothly when I return from a break away from home…Who am I kidding, it’s not long before I realise my sidekick is firmly by my side!

I know i should be more patient with myself and give myself a little credit for things that do go well .

Resuming “normal” now means another new normal and that I have to accept.

Every steady step back into routine is definitely an achievement.

Friday 27th March 2026

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I’m involved in a working group which consists of professionals, caregivers and me the only person living with dementia.

The last couple of meetings I have attended they have got quite heated…I don’t think we are all singing from the same hymn sheet!

I’m beginning to think that some people are too set in their ways and to blinkered to change. At the end of the day, everyone in in a meeting has a voice and everyone should be heard.

For me it’s about how we get the best support for people living with dementia no matter about age, race or their background

We need to promote that a diagnosis of dementia is not the end! There is so much that people can do. We need to be promoting so much more than just singing groups, we don’t want people to think that once you have received a diagnosis of dementia it’s all about shaking a tambourine and banging instruments loudly!

Singing sessions can be wonderful at bring some people together, but it’s only one tool in a that Very Large Toolbox!

We should not assume that everyone wants the same thing, or that the one activity will suit everyone.

There is so much more to supporting people than singing or reminiscing. We are not all from the same era and we definitely don’t all have the same age mindset!

By being stuck on one activity we miss opportunities to connect, and to support others.

When we are talking about supporting people this is where the problems start, supposedly there are always lack of funds where dementia is concerned, there is also lack of understanding too.

Today’s meeting I totally lost the will to live!

My blood pressure was going through the roof!

How will things ever get better, how will things ever change if we keep going over the same things!

In this meeting, we have yet again spent time on what the group should be called, and now a new subject…biscuits!

FOR GOODNESS SAKE!

WE ARE TRYING TO RAISE AWARENESS AROUND DEMENTIA!!

I don’t care what the group is called and I definitely don’t care if I don’t receive a bloody biscuit!

What I do care about is all those people that are not receiving support after a diagnosis of dementia!

All those people that feel so alone!

All those people that have no idea where to go or who to speak too!

We are not all the same…one-size does not fit all!

There is so much work to do, I know it’s not going to happen overnight, but if biscuits, the name of a group is the most important topic of this group…I really don’t think I want to be involved!

Dementia Support should be the main topic…How we are going to bring a service for those living with dementia, how do we get spread the word.

Thinking of support

Dementia Support should fit the person.

Our abilities and sensory needs differ. An activity that’s perfect for one person may be inaccessible or exhausting for another.

So what does meaningful support look like? For me I think it should really be person-centred, built around the person. It should be less about ticking boxes and more about creating opportunities.

It’s not all about singing sessions, there are lots of other ways to bring enjoyment

Supporting people well means LISTENING

Singing is a joyful way to connect for some, but it’s not all about singing.

We need to make positive changes in the way people are supported when living with dementia.

The real work is paying attention, offering meaningful choices that reflect the people’s lives.

We need to move beyond the assumption that “one activity fits all,” we need to unlock ways for people to be seen, heard and valued!

More people need to listen to a variety of experts…The ones with lived experience.

Monday 23rd March 2026

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Wednesday 11th March, I wake around 6.30am. I can hear the birds singing in the trees and also the dogs pacing up and down outside my bedroom door. Eight paw’s always sound so loud on vinyl flooring , tip taping around while the world is still sleeping

Toby and Sooty are impatiently waiting for breakfast and an early morning walk.

I unwrap myself from my duvet cocoon, leaving the warm coziness behind.

Both dogs are now excitedly running around my feet…swear they are trying to trip me up!

I feed the dogs and make myself a cup of tea. My cup of tea is always prepared with sugar and teabag by hubby before bed, this is so I only have to add water in a morning.

After a few mouthfuls of black tea, the dogs are giving me the eye “ come on mum, get dressed we need to go out”

It was around 7am when i stepped outside into the cold morning air.

All is quiet on the lodge site, apart from the sounds of the birds. We are so lucky on this site, there are quite a few open fields for the dogs to run around in which are close to our lodge, which makes things easier for me to find my way back.

After a couple of days of walking, we have decided to take things a little easier today.

I’m quite tired after covering 12-13 miles walking and sightseeing over the last couple of days.

Wednesday morning was spent at the lodge, where hubby made a full English breakfast for brunch. Then after brunch we set of for a gentle walk around a local nature reserve.

Unfortunately not many bird around today, not that were still enough for a photo! Hubby managed to capture a Chiffchaf though.

I only managed fungi and trees

Forest trees and sunlight can be quite interesting through the leafy canopy. The shadows casts lots of shifting patches that dance across the mossy path. Every shaft of light catches small details like fungi between mossy branches.

To say we was having an easy day we still walked around 4 miles.

The rest of the afternoon was spent in the hot tub…

Think someone else wanted too join us too!

Thursday 12th March

I woke a couple of times during the night with the wind howling around the lodge, apparently there is a weather warning in place today for wind and rain, we still made a decision to venture out though. After all it our last full day in Wales so we don’t want to miss out.

Just after 10am we arrive at Flint Castle, cloudy skies but fine.

Flint Castle was built 1277 by Edward I is situated at the edge of the River Dee estuary. Now crumbling, yet the walls and tower still give a strong sense of its past and the exposed tidal setting.

We spent quite a while exploring the ruins, taking photos and realising that the coast guard looking out over the river estuary wasn’t real! ( think we should have both gone to specsavers)

The castle also sits near a pleasant walk along the Flintshire Coastal Path, giving wide views across the estuary to the Wirral and Liverpool Bay, with the marshes revealing lots of birdlife.

The walk was great for me as it was on one level, no hill climbing thank goodness.

We had a wonderful morning walking, exploring and bird watching.

What a wonderful way to end our time in Wales

Friday 20th March 2026

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Our first day – Monday 9th March 2026

On our way to Wales we had a brief stop in Chester. We took a short walk from the car to the banks of the river Dee, where I was captivated by how many cormorants were fishing, and preening themselves in the sun.

Further down the pathway away from the sound of traffic, the world seems to soften. Gone are the gassy fumes from the cars, now we could smell the sweet perfume of spring flowers and early blossoms.

Weeping Willows line the river bank, flower buds starting to unfurl, we spot the occasional clouds of white and pink blossoms.

We head over the river taking the Queen’s Park suspension bridge. This suspension footbridge features attractive lattice work which would lead us to Grosvner park

Spring flowers push through the grass in cheerful clusters. Daffodils gently nodding in the soft breeze, clumps of colourful crocus and the bright red tulips stand so tall and bright.

Squirrels…So many squirrels! They provide us all with a constant entertaining distraction. One launched himself from a low branch with confidence…They are like a little acrobats, with their fluffy tails that act as a counterweight as they scurry up the trees, jumping effortlessly through branches. Two younger squirrels were tumbling through the grass, then paused to sit back and nibble at a nut they had just found, then all at once they race off in a grey blur.

Above and around is birdsong, it’s a layered chorus of soft sounds that seem to come from everywhere.

Then it was time to head back towards the car taking the pathway along side the River Dee with its steady whispering waters. I had to take a last glance back at the cormorants before we stepped back on to the noisy road.

Funny how your world of normality can change in an instant bringing so many new views, smells and noises.

We continue with our journey arriving at our lodge just after 4pm.

The lodge park looks very well maintained and clean, everything looks quite new.

Love opening the door to a lodge…Always brings back happy memories of when we owned our own lodge and the years of many happy memories made, it was our lodge that brought us to where we live today.

Our holiday lodge for the next 4 days did not disappoint, clean, modern and bright with the added extra of a hot tub…We were very happy!

Tuesdays 10th March 2026

After a good nights sleep our day started with an early morning walk with the dogs around our surrounding area.

The Welsh countryside looks like a living patchwork of joining fields, rolling hills, some of which are divided by drystone walls or hedgerows. We could see the peaks of the hills and mountains in the distance, they looked so worn and rugged.

After our walk it was time for some food before we headed off to find the Rhaeadr Dyserth Waterfall, must say I do love watching and hearing a waterfall, so when we pulled up in the carpark I was a little excited.

After paying our £1 each in the honesty box, we enter the pathway to the waterfall.

We walked alongside a shallow stream lined with daffodils, there a little bird sat on a moss covered rock, we both looked at one another as I slowly lifted my camera to excitedly capture a photo, I had realised that the bird was a dipper, one species I had never had the pleasure of capturing through the lens of my camera.

The little bird did not seem startled, in any way, it was like he knew I wanted a photo so badly, he actually posed for me for quite sometime.

After lots of photos of this little Dipper, I decided enough was enough.

Tearing myself away was difficult, then i caught a glimpse…A yellow flash in front of my eyes, a little grey wagtail landed on a rocky cliff face. Now my ears were drawn to the sound of water

The sound of the water was thundering over a rocky lip, falling like in a silver veil, splashing into a misty frothy pool below.

The air was now damp with a fine spray filling the air. The constant roar from the force of water makes my heart pound or was it the thought of having the walk to the top of the waterfall that was making my heart pound!

We headed off up a pathway lined with steps, breathing starting to get more difficult so plenty of stops along the way.

We finally making it to the top, me making the joke of “you are trying to kill me”

We both laugh.

At the top we look out through the treetops at the spectacular open views.

Time to make our decent through the woodlands and back to the carpark. I couldn’t leave without going back to have one last glimpse of the waterfall

Off on our next point of call…Point of Ayr on Talacre Beach

As we arrive we can see the sandy sculpted sand dunes rise and fall in rippled humps, the tops of the dunes sprouting tufts of coarse beach grass, lining the boardwalk.

A fence with wooden post makes a wonderful perch for a friendly Stonechat, who sits soaking up the sun’s rays making him stand out from the grassy backdrop.

We follow the boardwalk then veer off though the sand dunes, feet sinking in the soft golden silky sand, as we reach the top what a wonderful sight…A band of golden sand stretching for miles, sun now breaking through warming our faces.

A compact lighthouse, white tower with a bright red lantern and gallery dominates the skyline above sand dunes and the beach.

After a lovely stroll along the beach, Toby and Sooty playfully chasing one another, it’s time to leave the beach and Point of Ayr Lighthouse behind

Feeling tired, it’s time to head off back to the lodge to refuel and relax…I can definitely feel the hot tub calling!

Wednesday 18th March 2026

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By the time this blog is published, I will have returned from our 2nd adventure of the year. This time we chose to visit Wales

I can’t remember the last time we visited Wales but I do know it was a good few years ago now.

Venturing somewhere new, whether it be a solo trip or a holiday can feel so exciting on paper. But for me I get that hit in the stomach…Yes! Anxiety!

My brain is wired for familiarity now so stepping out of my comfort zone and into the unknown is like setting off an alarm in my brain.

On paper holidays are so exiting, I read through the description, looking at the images of the quiet idyllic lodge surrounded by countryside.

In reality it’s a totally different story…

I stress trying to pack…I stress even more trying to remember everything, and as the days get closer, anxiety jumps in to the mix…Woo my head is like being on that fairground Waltzer ride!..Spinning!

New places do stretch me, but they also spark something new, it give me the opportunity to create stories, capture different views, capture wildlife through my camera lens. It’s just that initial knot in my stomach and the fight with my brain and anxiety, I have to keep reminding myself to “Ease up Gail, calm down”

By lunchtime everything is in the car, and we are off traveling on the M6 towards Wales

My head is spinning, I have been a little snappy all because dementia and anxiety are messing with my head and I can’t remember if I’ve packed everything

Hubby always reminds me it’s not the end of the world if I have forgotten anything…but to me it is!

I’ve just got to change my mindset now and remember, we are on a new adventure and the views from the other side will be worth it!

Monday 16th March 2026

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When we think of life’s biggest killers, most will think of heart disease, cancer, strokes…Dementia rarely comes to mind.

As life expectancy increases and younger generations age, the number of people affected by dementia will rise unless we take action, we should be looking at

1. How to prevent

2. Getting an early diagnosis

3. Having a support and care system in place

Yet, How many times have we heard about people living with dementia going round in circles to source the right kind of support.

How many times have we received the same answers.

“I’ll look into that”

“Yes, I hear you”

“Leave it with me”

“I know you should have more support…But!”

Nothing ever materialises…Nothing ever changes!

It was only the other day Fiona Phillips’s husband was on TV saying that nothing has changed in over 20 years. Still today, there is no support, still today there is no money available and people take the same drugs…are they actually working!

I completely agree…Nothing seems to be moving forward where Dementia care and support is concerned.

I have heard so many people say the same things over and over again…It is now getting exhausting!

Dementia has been recorded as the leading cause of death in England and Wales yet again!!

Why does nobody listen!

So why is nobody doing anything!

Attending a singing group and shaking a tambourine, or going to a reminiscing group where they look at old artefacts and objects, scrapbooking through the decades, sharing memories from days gone by, is not my preferred kind of support.

Those groups don’t inspire me, they don’t give me an insensitive to live my life well.

I know some people will enjoy these groups, but to be totally honest I’m just a little too young at heart to be shaking a tambourine or reminiscing over an object.

I’m now tired of broken promises.

So how can we support people whom do not want to join a group, because it’s not right for them, for those who feel uncomfortable stepping out of their comfort zone.

We should be focusing on a more person centred approach, focusing on the person’s remaining strengths and preferences rather than just signposting to a group that has no stimulation or interest.

Don’t forget Dementia doesn’t just choose older people.

In an ideal world, we should have a local hub, a single point to access information, benefits advice and information for carers, with a little coffee shop where you can sit and just have a coffee with like minded people. Somewhere to chat and offload, sometime just chatting to others that are going through something similar, is the best kind of support.

Early diagnosis has been talked about a lot just recently but if there is no support network and post‑diagnostic support, it’s just going to be disastrous…Just think of all those people that will feel so alone because there is no support network

It’s always about money, funding and time.

People living with dementia do not have time

I don’t have lots of time

Dementia can’t be put on hold

Dementia won’t wait

Dementia can’t wait

Dementia is the forgotten killer!

Friday 13th March 2026

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This is a true account of a recording of my blog with no editing, no reruns, just me and my sidekick, it definitely will not be perfect

Recording my blog isn’t easy these days, some words I come across now are difficult for me to pronounce, which sometimes can hinder my recordings. I do get quite angry with myself when it take quite a few recordings to master a correct pronunciation

It’s one of those things, you don’t know you have trouble saying a word until you actually try to say the word. I can say the word in my head quite perfectly, yet when I open my mouth it comes out a jumbled up mess!

Genuinely being one of those words

Bassenthwaite being another

When I struggle with the pronunciation of a word Google is a wonderful assistant, if you type into Google “how do you say Genuinely” Google will come up with the correct pronunciation, you can even slow the pronunciation down. I find by listening and breaking the word down, this does eventually

How long the word stay in my memory, well that’s another story

Will I remember the correct pronunciation when I come to recording my blog?

Some might ask why I record and not just return back to plain text?

1. The recording of my blog is to assists those who struggle reading
2. It’s also good for me to keep my brain reading text

Dementia we know can erode speech, causing slurring, mumbling or even silence, but reading aloud can be highly beneficial, it’s like a leverage to preserve and stimulate our brain’s function.

It’s just another routine we need to keep going…The rhythm of our speach

I’m sure I have read somewhere that rhythmic reading activates the brain and therefore boosts our cognition, and I’m all for keeping my cognition going!

I know I can’t read a full book now, I get lost, frustrated and can’t remember what I’ve read when I come to picking up the book at a later date. However I can listen to audiobooks and I can still read short pieces, hence reading and recording my blog.

Reading isn’t a cure, but hopefully it will keeping my brain functioning longer and it’s free!

Wednesday 11th March 2026

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I am sometimes riled by what comes out of people’s mouths when discussing dementia…People can be so blinkered.

The other week I was in a local meeting with professionals, carers and myself, representing people living with dementia

Firstly, I get so annoyed when giving my time to a group when we don’t stick to the subject we are supposed to be focusing on. I know we all go off piste at times, but spending 15- 20 minutes talking about something entirely different just feels like I’m wasting my time, and most importantly the topic on the agenda. We just have less and less time to discussed the main topic. Therefore there is less planning time for the main event which is only 3 more meetings away!!

You know how meetings go…everyone throws ideas around the table, discussions, laughter, a little anger, tea, coffee, biscuits, you get the picture.

Then all of a sudden one person says “ why are we inviting people whom live with dementia? Why do they need to be present?

Oh my goodness red rag to a bull, i nearly popped off my seat!

Excuse me! How can we not invite and include people living with dementia! The main topic is about dementia!…The people you are not wanting to include and invite are PEOPLE LIVING WITH DEMENTIA!! I’M A PERSON LIVING WITH DEMENTIA!

Why do you think things never change?

Why do you think there is still a stigma around dementia?

Because people don’t include the most important strategic assets…the people with lived experience…They are the experts, how can you say that these people should not be invited.

I was absolutely gob smacked that in 2026 people still want to hide away those people whom are so important to changing the stigma and educate the population around dementia

This makes me so angry!

It’s so bloody exhausting!

The meeting carried on, but I also carried a fire burning inside…anger!

I don’t think I will ever forget how that person made me feel.

Monday 9th March 2026

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Trying something new…

I am a big believer that trying new things keeps the brain active

Trying new things matters to me for several reasons practical and psychological. New experiences like different crafts, art, whatever really, will teach you new skills, and that has got to be beneficial to help my mindfulness and keeping my brain active for longer…Fingers crossed!

By trying new things and pushing yourself it also helps your confidence, with each small success it gives you a little boost, which then makes you more willing to take future risks and try other things.

By trying new things it can increase your creativity, reduces your boredom and keeps life a little more interesting, perhaps even bring new opportunities.

I have been so lucky to have had new opportunities creating cards and bookmarks for DementiaUK

Designed a program for an opera, and also a book cover…Who would have thought the girl who was told she was useless at art could actually be creating pieces of art 45 years later while living with Early Onset Alzheimer’s

Never ever let anyone tell you, you are useless…No one is useless!

Don’t be scared of giving art a go, we all see different things in art. We all have different techniques and ways of doing things, that’s because we are all different and unique, just like a piece of art.

A few months ago I was itching to try something new, I wanted to create a larger piece of art for a wall in our home.

I kept on coming up with excuses not to have a go…

1. I’m not good enough.
2. I don’t have an easel
3. I don’t have the correct paints
4. I don’t have a large canvas

As humans we are good at making excuses when we don’t believe in ourselves.

Hubby sorted my excuses out, he went out and purchased a large easel and some canvases, oh no! Now I have to create something. All I needed now was the acrylic paints. So after purchasing a selection of colours, it was time to plan.

The delivery of paints arrived, time to enter the craft room and create. I stand looking at the blank canvas took paint brush in hand and started to spread paint whooshing it across the canvas. At this point I have no idea where I’m going, only it has to coordinate with green. I have no idea of design, I think I’m going to give abstract a go.

The room was quiet, a little uninspiring so I kindly asked Alexa to play some Dua lipa (a favourite of mine at the moment especially when I need motivating)

From having nothing in my head only colour, things immediately changed, I think it was the beat of the music that got into my head!

It’s like I had entered in to a different world. I was getting drawn into the painting, blobbing, spotting, mixing, dabbing. It was getting a little messy!

It was messy in a good way, because now I could now see where I was going, the colours were coming together and I was getting a little excited.

I was totally lost in the beat of the music, paint and creativity.

I have always talked myself out of trying to create a large piece of art, because I didn’t have the confidence. By hubby purchasing the easel it gave me the encouragement and incentive I needed.

We all need a little encouragement every now and then and we all need to believe in ourselves more!

This piece is totally different to anything I have ever done before, I never really thought about abstract art, because I had no idea where to start.

The thing with abstract you just have to feel…go with the flow… let yourself go and just create

Now I have the inspiration to try more pieces, I have even purchased more canvases with new ideas in mind, who knows if they will work or not, but at the moment I’m enjoying myself trying…I’m just having fun!

If I could give anyone any tips to try art or any craft

• Start small, don’t take anything on too complicated.
• Try something a few times, you can’t give up after one go!
• Keep things basics first, perhaps watch YouTube for ideas
• If it doesn’t work out it doesn’t matter, don’t beat yourself up, you are still learning something. We all learn from making mistakes.
• Make time, perhaps put your craft time on your calendar.
• You might want to try sketching first as pencils and paper don’t cost the earth.
• Don’t be scared

Just Enjoy!