No, not the biblical type! Durr.

UK Dementia Congress.

I’m going to a meeting next week about planning this year’s event, along with Innovations’ Rachel.

Now, I have been to all the Congresses in recent years, and have learned a few things. And I have listened to my friends about their feelings.

Firstly venue. Floods aside, most of us thought Doncaster race course is pretty good. Although the main hall for the big sessions I found awful. If you weren’t close to the front you might as well have been in a different country; I felt totally disengaged, sitting towards the back.

Brighton was awful. Nothing about the hotel/conference centre was dementia friendly. Decor, carpets, stairs, uneven floors, low light levels…horrid.

I remember the event in Telford. Many plus points, but the division of the huge arena into curtained sections did not work.

There is something very beneficial about having views out into the countryside available from several places, like at Doncaster. It lightens the spirit, calms the mind, and just enables you to refocus.

Next, content.

Whom is Congress aimed at?

Is it for promoting and publicising research? Is it for professionals working in health and care? Is it for academics? Is it for people living with or affected by dementia?

Is it to disseminate good experiences, what we have learned helps us live with the disease?

Is it to allow professionals to hear from carers and people living with dementia?

Should it be led and facilitated by professionals or mere ordinary mortals?

Should it be facilitated by professional facilitators with no prejudicial axes to grind?

If we don’t answer those questions we cannot decide on content.

I suggest that Congress should be about results from research, not, as happened last year in one case, 15 minutes about process before completion. Totally pointless.

I suggest it should not provide a platform for professionals to paper over cracks and hide from reality. As happened last year in one parallel event I went to.

I suggest it should not be a forum for the usual leaders to repeat again what we hear year after year, with nothing changing for the better. As happens every time.

I suggest that Congress should be a forum for the good things that are happening.

Where people living with dementia are taking the lead to provide training for professionals.

Where people living with dementia are carrying out their own research.

Where unpaid carers can talk about good practice which helps them.

Where paid carers can learn from us, and can share their own experiences.

Where learning about all stages of dementia is shared.

Where specific topics can be explored.

And where campaigning and influencing can be engendered, supported, promoted and organised.

Because, we all know, we really are not getting anywhere at the moment.

I do not want to listen advertorial puff about services which we do not trust. I want to sit with providers and talk through realities.

I want to sit down with politicians and plan how we can work together for change. We need to get them there. I don’t want to shout…just persuade and plan.

I want senior NHSE leaders to come and meet us. Senior local government officers.

Bloody hell. We just need to actually get face to face and talk and plan and change, instead of dancing around and hearing the same old, same old, lies.

Congress should be for learning what’s new, for networking and reinvigorating, for focusing, planning, and campaigning.

Otherwise, what’s the point?

Oh, and that first night debate? What about these?

‘That the government should legislate to hypothecate minimum sums of funding to be spent by the NHS and Local Councils supporting those affected by dementia.’


‘That the government should introduce enforceable targets for people living with dementia to have named, trained, skilled Dementia Navigators supporting the, from diagnosis.’


‘That, having reached 67%, the government should set a target of 100% for diagnosis of dementia by 2025.’


‘That memory services should be renamed dementia services, and should sit within community services not mental health.’

To the new Chief Exec at Alzheimers Society

This is a piece published this month in The Journal of Dementia Care. I was invited to write to the new CEO, Kate Lee, back in December, about what her top priorities should be.

I did not dream that the present situation was about to happen!


“Kate Lee takes over from Jeremy Hughes as Alzheimer’s Society CEO in April. What should be top of her “to do” list?”

Welcome, Kate, to this crucially important role in developing meaningful support for people living with and affected by dementia.

What are the big things we need you to do?

First, with your strong campaigning team, hammer on the doors of government to get us fairness. Not to be heard, but to get action. Government have heard us for years but have not acted. So hammer and shout.

Persuade the government to end the postcode lottery of care and support that depends on CCGs’ whims and preferences. They should introduce a standard with legal force for everyone affected by dementia in England. The same goes for Wales, Scotland and N Ireland, of course.

This may require repeal of the Health and Social Care Act (Lansley), in which case…sobeit. Do it.

Second, ensure that if Dementia Connect is to become the standard support service across the country (as referred to in the NHS Ten Year Plan), ensure that advisers are all fully trained up to have the skills and knowledge they need to do their work well. The advisers should fit between Admiral Nurses and Dementia Support Workers, and must have the skills for that demanding and essential role. Also ensure that their managers have the skills, experience and time to manage the Dementia Connect services well. Otherwise they will not meet the needs of us, people affected by dementia.

Third, change the culture of Alzheimers Society, which at the moment comes across as ‘our way or no way’. Allow local people to run groups as they want to, not as you think they should, nor as a national standard model. Alzheimers Society’s role should be as facilitator of local support groups, not controller.

And please don’t allow your organisation to lift and copy others’ good ideas, without acknowledgement, and sometimes in ways that confuse us. (Think about the yellow I want to speak cards? Think about the use of ‘Dementia Voice’. Taken from others.)

Fourth, sort out the National Dementia Action Alliance, and the Dementia Friendly Hospital Charter. Chronically underfunded and understaffed, these need proper resourcing. The Hospital Charter is not monitored, and is too often a tick box certificate by NHS Trusts to get us off their backs. There is no check that the hospitals have done anything worthwhile.

Fifth, and I shouldn’t need to say this…value your people. There’s been too much reorganisation, slimming down, expecting too much of staff. This is neither good for them nor for us, the people they should be helping.

Sixth, and last, but possibly the most important and potentially productive, please work with other organisations, not against them. Many dementia organisations have different priorities, so work together to achieve more for us. Help each other. Talk to each other. Share your strategies. Work together to create the post diagnostic support and carer support that we all need from time to time.

As you of course know, Together Everyone Achieves More.

And good luck!

Nail on head…Harrumpph

At times or in some situations I flop around. I trip. I wobble. I turn and catch something with my arm. I kick something.

And it really annoys me.

Yesterday I was asked to put up a shelving unit on a wall in an outbuilding. We’re changing how we use it, after many years of just managing, and me getting annoyed about not finding bits and pieces and tools.

Now some people are good at managing to move around tight confined spaces, navigating the clutter of everyday life, and stuff.


I hate it. But over the years I’ve been responsible for a lot of it here.

It’s only now that I am understanding that there are things I will never do that I am chucking stuff out.

So I go and get the tools I need from my newly organised toolshed!

And I see I have got to squeeze round an old wardrobe, past disused shelves, past a basket of walking sticks and old cricket stumps, supermarket boxes sitting at odd angles with stuff loose in them.

And I know I will heat up, boil, erupt…before I get far into all this.

But…I try, because that is the best way of conforming to expectations.

And, yes, I bang into the wardrobe as I unscrew the shelves. I put my tools on the floor in one place, and have to squeeze round the boxes and walking sticks to get to and from them. So, temperature rising, I shove the wardrobe and some boxes roughly…and get ‘the look’.

I know what is coming.

So I say I have got to empty the place before doing any more.

‘Why? It’s only a small thing.’

Sorry, I cannot do it like this.

So, cutting this part of the story pretty short for economy and privacy, I move stuff out onto the grass.

Ever seen how writers express characters’ disapproval?




Oohhhwww for god’s sake…

As I move the stuff out, making a few grumbles just to register my friction and temperature.

And then…I’ve cleared my space and get started on the shelving unit.

Taking my time, thinking through, planning ahead step by step, before starting…

Measure twice, cut once.

Etc etc etc

Yes, it’s slow…

And I try to ignore the eyes gouging scars through my back as I stand and stare and think and plan.

I’ll call you when I need you.


(That’s another one)

And an hour later it’s done.


A couple of years back, I found myself staying in a tiny room with a tiny shower unit during a two day conference. And that day, I learned that I could no longer cope with small spaces, or rooms where there is clutter and stuff to navigate around, or tiny shower units to not fall down in, to squeeze the doors shut and turn around in, and – yes, often – first get an ice cold dousing followed by scalding hot water.

So now that organisation always books me a larger room. Bless them.

It’s clutter and stuffocation that do for me.

Even down to small things, like having my coffee and filter papers stored away around the corner behind the kettle. Neatly. So I have to stretch over or round the kettle as it heats up, and reach over for my stuff.

I just want simple.

Clarity. Space.

So I can lay out whatever I need to use, be it for cooking or doing an odd job or reading a book…and not have to work round stuff, and furniture, and piles, and things sticking out.

I now put this down to my decreasing ability to process the incoming data signals quickly enough to avoid these obstacles, to balance to the unexpected, and to focus my mind on that on which I should be concentrating. I cannot deal with this much data. My processor is damaged. My memory capacity is damaged.

It is speed of processing.

And as I/we slow, our families and friends have to adapt to our slowing. And that is not easy.

It takes patience and foresight and insight.

It requires working at our pace not theirs.

It requires others to walk in our shoes.

And I do not criticise people who do not do this, unless they don’t try to. It is a different, counter intuitive way of thinking. It is hard to get.

Dementia Friends is all about raising awareness, of bringing people into our world a little so they understand us and our behaviours, and can accommodate us.

A head teacher from Glasgow said on the radio this morning that…

‘All behaviour is communication.’

Nail on head.

Understand our behaviours, understand our needs, meet us in our world.

Putting on the sunflowers

Rites of passage are events that we pass through, actively or passively, during our lives.

Baptism or naming or equivalent ceremonies.

Starting little school. Then big school.

6th form college or FE college.

Starting work, or trying to find a job.

Marriage, children, grandchildren, retirement…

These are big steps along our paths.

Well, I have just taken another.

I have put on sunflowers.

I’ve grown sunflowers for years, usually those giants, which children love so much. Last year I changed to a shorter, more prolific version, which provided hundreds of cream and brown cut flowers all summer.

And yesterday I wore sunflowers for the first time.

I mean, of course, the sunflower lanyard that signifies a hidden disability.

I was with my lovely DEEP friends in London, working to develop a process for ethical approval of research devised and led by people living with dementia. And planning the second cohort of Dementia Enquirers Research Projects.

When we went back to Euston to go home I decided to admit and flag my hidden disability when I travel, and I picked up a sunflower lanyard at the assistance office.

Until now I have felt pretty much ok on trains. Yes, I have now and then made mistakes, gone North instead of South, forgotten my ticket, etc. But I have felt quite able to deal with whatever happened.

But in recent weeks I have frequently felt dazed and just not quite with it. And there were many periods of this in london during these two meeting days.

The others with me used the lanyards, and got taken to the train by the kindly staff. I think I would not have had the confidence to join them if I’d been alone, but together we are stronger, aren’t we?

Putting that lanyard around my neck, attaching a plastic card holder with my name and ‘I have dementia’ inside…that is a big statement, a big change, a rite of passage.

And it had an effect on me. I was changed. Just slightly, but noticeably…I became someone with a disability.

I became someone who might need a little help. Someone who would willingly accept help. Someone who might not cope without a friendly face and a little more time to think and choose.

Someone who might sit waiting and simply forget to catch the train. Someone who might stumble or wobble along the platform and into the train. Someone who might not have the right tickets to offer to the train manager.

(I have done all those.)

When I put on that lanyard I felt safer. I felt that if I struggled staff would help.

But I also took a step back from independence. I became less self reliant, more dependent on others. And perhaps I said to myself, I will just allow others to do some of the thinking for me.

I suppose I withdrew a little. Admitted I was slightly vulnerable, but safe within the protective tea cosy of the sunflower lanyard. The label. The call out that ‘Hey, I may need some help here’.

Not waving but drowning.

The danger is that I will stop doing the hard work of thinking it all through, and making sure I am in the right place at the right time, facing the right way. I won’t care so much if I get it wrong because, well, someone will help me out.

And that may be inviting trouble. Or ‘losing it’ because I’m not using it.

But we’ll see. After all, not all travel staff recognise the lanyard. Not all companies have trained their staff around it. Transport for Wales? Arriva Buses? Hmm.

But on long distances I think the time has come. Because I cannot know when that dizzy, faint, forgetfulness may come. And things don’t quite make sense as they should.

And perhaps I should wear it in Tescos, and M&S, and other stores as well. And just get it out there.

At least it will remind staff that hidden disabilities exist. And while many staff are very helpful and nice anyway, there are others who need reminding!

Just as a footnote, the Avanti staff member in 1st class yesterday from Euston was fabulous in many ways. Incredibly attentive, generous with nibbles, kind. But…he spoke so fast I could not work out what he said. He asked if I would like this or that, but so quickly I could not make the decision. So he just gave me everything as I mentally chewed through what I had heard, and what I had been offered. Slowing down would have been better. Not just for me but for everyone.

My talk to student nurses

What I want you to remember

1 Terminal, irreversible, unstoppable, brain disease results in dementia.

2 Dementia is not about just memory.

Symptoms may include:

• Loss of balance

• Inability to find words

• Sudden mood changes

• Brief Disorientation

• Difficulties with Perceptual recognition

• Inability to judge distances

• Inability to plan tasks

• Inability to answer direct questions

• Can no longer type, or hits wrong keys continually

• Can type fluently but difficulty with words (Wendy)

• Sensory changes: hearing, smell, taste…

• Loss of concentration

• Unable to sequence familiar tasks

• Decision making (eg meal choices) …does not equal lack of capacity

• Loss of inhibition

• Loss of names…cannot fix new names

• Loss of recognition of visual clues, such as faces, places…

• New memories cannot be laid down

• But early memories are accessible and these are what locate you in your life. So, eg, you think your children are coming home from the bus at 4pm. Or you have to get dressed for work at the factory. Or go out in the middle of the night in the car to catch a burglar.

And therefore…

What do you think this can feel like?

How would you feel if you were in a bed, in a room, you did not recognise. With people you did not know? Feeling ill and having things dome to you? Hadn’t a clue where you were or what had happened to get you there?


We start somewhere, and we gradually decline. It is not sudden, unless a stroke.

We have the disease 20-30 years before we notice.

We get diagnosed five years later.

We still live on independently for many years, gradually losing cognition and abilities.

Do NOT ASS U ME from a diagnosis on a record…

3 Every single tiny action is controlled by the brain

…and will be disrupted if that particular bit is diseased. This includes things that happen without active thoughts…like digestion and bowel control.

Brain disease therefore may and does affect any element of a person’s physical and mental existence, from balance, to continence, to word finding, to mood, to memory. And much more.

4 Brain disease can present symptoms at any age,

even though most cases will be at 70+. 5% of people with dementia are aged between 30 and 65. Watch out for these, who you may think are stressed or depressed.

5 Delirium

Very commonly undiagnosed in hospitals.

Causes significant later cognitive decline and higher risk of dementia.

Must be diagnosed and treated.

Really important to find out a person’s usual mood and personality…ask family or friends…

And delirium can be caused by confusion and anxiety, such as caused by disorientation after hospital admission. Hence the need for orientation and dementia friendly environments.

And not moving person living with dementia patients during their stay, except for good clinical reasons.

6 People with a diagnosis often retreat into isolation and despair

They feel bereaved. This makes their symptoms worse, and their lives miserable. In the community, your job is to enable them to get back into their communities, to socialise, to do what makes them feel good and smile.

7 You cannot expect to understand a person living with dementia in just a brief conversation.

The person needs time to gather thoughts, find words, reflect, communicate. And you need to ‘hear’ them, so give them double appointments. Fetch them back for a proper session. It will save you time in the future.

How will you get a history?

How will you know if they are in pain, if they are later stage?

How will you avoid asking direct questions which they cannot answer?

How will you find out unmet needs? Or even recognise that there may be an unmet need?

8 Remember, above all, that just like any other disease, there is no one template that fits all.

A person with dementia is like no other person with dementia. Who knows which of the 50 billion brain cells are affected? You certainly don’t. Understand/see the person in front of you, not a stereotyped label.

Once you have met one person with dementia…you have met one person…

9 Do not assume that if a person has difficulty remembering things (and that does not affect us all) there is no point in asking us to do something.

Do, however, help us to recall what you said. Write it down for us, or ask us to do so. Ask us whether we use any tricks at home to remind us, like Alexa, or post it notes. Help us get these invaluable aids to living.

10 In a hospital, when you talk to us come down to our eye level.

Sit on our bed. Draw up a chair. Come close. Let me read your lips. Talk to me. Allow me time to take it in, reflect, and answer you. Allow me time to ask my questions. If it’s noisy take me to a quiet area for our conversation, or get others to be quiet. Write things down for me to keep and read later.

11 If I am upset and behave in ways you don’t understand,

it’s because I am frightened or in pain, or just don’t understand what’s going on. Find out what it is. Don’t drug me. Don’t tie my wrists. Don’t lock me in. There is always a reason, and you can do something about almost every cause.

Find my unmet need

12 Learn about my life

from my family and make sure you read my This Is Me document. If I don’t have one make sure I get one! Use what you know about me to talk to me about what I can remember from my past, and to find out what gives me pleasure. My preferences and habits.

13 Remember that if you take time to understand me

I will stay in your hospital for a shorter time, and you are less likely to see me back again. It will be good for me too!

14 Every time we meet, tell me who you are and what you do.

If you need to do something to me, like take blood, manipulate my leg, palpate my tummy, take time to explain to me before you start. I may not understand if you cause me pain. I may think you are attacking me. Or you might remind me of a horrible experience from childhood, like abuse.

15 Be patient. Smile.

Take your time. Even if you are run off your feet and knackered.

16 Assume first that, given time, I CAN understand.

Assume I have capacity. Assume I can make decisions. (Even if you disagree.) Only if it is clear after trying that I cannot, talk to my family carer or friend. But check first that this is the person I trust and who knows me best. This might be my neighbour if family rarely visit.

And do not assume that family best know my wishes. They may rarely see me. They may want resuscitation at all costs, while my friend may know that actually I have said I want simply to die. Check who is best placed to tell you what my wishes are.

Next of kin have no legal right to make decisions for me. It is for you to work out what is in my best interest, in accordance with my previously expressed wishes. The only exception is where there is a power of attorney in place.

17 If I am not eating meals at meal times

offer me snacks, bite size, cake, anything. Keep putting them in front of me, where I can reach them.

Give me drinks that you know I like, in a cup or mug I like using. Not a horrid little plastic thing.

18 Don’t ask me direct questions if you know I have memory difficulties

I may not be able to find an answer.

Have you had anything to eat or drink today?

Is your pain worse or better than yesterday?

On a scale of 1-10, how is your pain?

Which medications do you take?

Find work arounds. Like writing on my arm!

Use Abbey pain scale.

Use pictures is necessary, eg for food choices.

Don’t offer multiple choices, just two. This or that.

19 Talk to family or friend carers

Involve them. Provide them with information, progress, discharge estimates and plans.

But remember to to talk to and listen to the patient first and foremost. They can be included, and involved, if you take the trouble and time.

Remember John’s Campaign. Allow carers to stay with the patient as much as they wish. Provide somewhere to sleep if at all possible, like a recliner chair, or a mattress on the floor.

19 BAME related issues

Have different cultural beliefs and attitudes to dementia. They may see it as a mental illness, as a curse, as something shameful. They may keep it hidden, and delay diagnosis till late stage.

Plwds may lose their learned English and revert to mother tongue, and be unable to communicate with family. Or you.

Family may choose to interpret, but not relay all the information or ask the questions you need answering. Esp about family care. You may need to get an independent interpreter.

Don’t assume that BAME families ‘look after their own’. Ask the right questions. Find out. Ask the patient in confidence. Elder abuse is not uncommon.

20 LGBT related issues 🌈

How many of your patients are lgbt?

Lgbt plwds often hide their sexuality, for fear of discrimination.

In carehomes, plwds can get hounded out by residents if they find out, so plwds will even forbid visits from their gay friends.

In dementia, plwds may revert to younger times of persecution and how they felt before coming out.

Which bay do you put a trans person living with dementia in?


I could go on, and on…but these are what every health professional should remember and live by.

You CAN help us to live well, as well as we can, and to enjoy happiness.

We CAN continue to socialise, to do what makes us smile, with a little help and understanding.

And towards the end you CAN enable us to die well.


I asked for suggestions from twitterati for what I should include in a recent talk to doctors. This is what they said.

• Respect the caregivers

• Acknowledge their courage

• Appreciate their efforts

• Eliminate any distractions

• Smile when talking

• Make eye contact

• Shorten your sentences

• Ask uncomplicated questions

• Wait for answers

• Listen with patience

• Write legible instructions

• Participate in research

Tell them about @JohnCampaign which will help the medics and the PLWD in hospital.

Stress that changes in behaviour are probably due to unmet needs that the person is struggling to express. It’s not just ‘the Dementia’

To be spoken to, not ignored. Treat with respect how would they like to be treated if they were the patient. To be given the time to talk and explain, not rushed. LISTEN to the patient

Not sure if you’ve already given your talk, if not, suggest to doctors that they always consider what’s best for the whole person and not just for their medical condition. To do that they need to know something about the person, what matters to them. #patientsarepeople

There is focus on support with eating when in hospital but not with toileting. Mum was left with a buzzer to call a nurse. She never understood this and become incontinent while in hospital which led to repeated UTIs and resulted in her needing long term residential care

Hospital doctors should know that a person with dementia needs someone with them at all times. And that drugs are NOT the solution. I’m still hearing about doctors prescribing anti-psychotics to people with dementia, which is inappropriate and dangerous. Thank you for asking!

And to let them know that all “behaviour” is an expression of feelings, letting us know about an unmet need in the only way they can. We need to be detectives, figure out the need and meet it to the best of our ability.


So good luck in your career. You can make a huge difference to people’s lives.


Never ass-u-me anything. It makes an ass out of you and me!

Because we’re not worth it

I’m still waiting.

For a reply from Shropshire CCG.

A month ago they acknowledged receipt of my letter.

I reminded them a week ago, and they said it would be another week.

So I’m still waiting.

I attended their January meeting, where of course we are not allowed to ask questions or speak. At all.

We have to submit written questions which are answered in writing in the papers for the following meeting.

They keep us quiet because they have had so much s**t thrown at them them in recent years.


So since they cannot hide in closed meetings, they prevent interruptions and awkward questions.

Democracy in action. Public spending in action. Accountability to those whose health they look after, and whose money pays their salaries.


They wrote to me in December that they do not commission health care on the basis of rights, but to meet need. And they did acknowledge that people living with dementia have unmet needs.

Their meeting papers over three years show that they periodically claim they are working on a model to expand the services and support they offer. But nothing ever happens.

They, the GPs, continue to tick the EMIS box that states they have carried out a face to face annual review of our care plans, to get the QOF payment. 80% they proudly claim in their performance reports.

Yet none of us actually have any sort of meaningful support plan that we have contributed to. And Healthwatch Shropshire have proved it in a great piece of research last year.

The truth seems to be…

They don’t bloody care about people living with dementia.

There’s no cure. There’s nothing they can do. What’s the point?

They diagnose because they have a target to achieve. And they claim care planning, because they have a target.

And that, my friends, is that.

3,800 of us in Shropshire get almost no support following diagnosis.

Not unusual, I know. But they are not even trying.

We lead them to water, but they will not drink.

They look at us as if we are irritations beneath their shoes.

I sat through their January meeting with my teeshirt on, in the front row.

No one approached me. They looked from their seats, sniggered a little, and ignored.

Apparently, then, we have no rights in Shropshire.

The Equality Act does not exist, or apply to us.

The Dementia Rights statements? What are they? Never heard of them, and don’t need to here.

They have never carried out an Equality Impact Assessment in relation to dementia. They told me.

Why? ‘Because there has been no need’.

No need?

No bloody need?

Nor have they published an EDS2 statement or assessment in the last four years. No review of whether they are meeting the requirements of the Equality Act.

So I am still waiting for a reply to my letter.

And I fully expect it to be another meaningless, empty, vacuous explanation of absolutely nothing.

What the hell can we do?

How can we stop them from ignoring us?

Do we now have to interrupt their meetings and protest?

We have provided models and evidence for what we need. We have accepted that it cannot be all done at once.

But if you don’t start you never finish.

Perhaps they just know that since there is no cure, we will fall off our perches before they do.

Until there is a target for providing post diagnosis support, according to a specified model, they will continue to use Lansley’s appalling, failed NHS model to ignore us.

Because we’re not worth it.


The Dementia Statements

  • We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society.  Our diagnosis should not define us, nor should we be ashamed of it.
  • We have the right to continue with day to day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
  • We have the right to an early and accurate diagnosis, and to receive evidence-based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.
  • We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
  • We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.