Sleep in Dementia?

Sleep well last night? asks my wife.

Nope. Kept waking up. Every hour. Almost to the minute.

Nightmare dreams. Still unsure about reality.

And I feel groggy, foggy and soggy.

Perhaps you ought to tell the doctor?

Er, well, what could they do?

Dunno, but…

I can understand why further research is so needed into sleep in dementia. A quick search throws up of lot of articles from pre 2012 but precious few more recently.

And the meta analysis carried out by a UCL team in 2017 found no evidence based reliable treatments.

(Source: Current Opinion in Psychiatry, Volume 30, Number 6, November 2017, pp. 491-497(7))

What might we try?

Drugs? No strong evidence in favour, and plenty against. Plus side effect horrors.

Activity? Of course. But if, like me, you have a few co-morbidities that limit your movement or stamina/endurance, you may be unable to increase exercise significantly.

Daylight? The natural world? Trees? There is evidence that seeing trees increases wellbeing…

Sunshine.. Lovely, but not always available. Being outside, I believe, is good though.

Foot bath ‘therapy’? Yes, someone mentioned that recently. Not so silly if you have painful feet at night.

Aromatherapy? Becoming widely accepted, but is there evidence?

Preventing daytime napping? Could cause considerable behavioural difficulties in late afternoon.

And so on…

One abstract I read spoke of the need to analyse a person’s sleep patterns before attempting treatment. Bit like doing an xray before replacing a hip?

Durr!

I wonder how often doctors in general practice order sleep studies? And if they are available in sufficient quantity?

I wonder if sleep specialists are available to all who could benefit?

And if there is no consensus on evidence based treatments, is a specialist just guessing too?

What do GPs think when I say I am having problems sleeping?

Do they have that heart sink? Another thing they have no real idea how to treat?

I had sleep apnoea for several years before I told the GP, (when I was still a healthy weight!), had a sleep study, and was given a cpap machine. About 15 years ago. And before that, in 2003 I had a coronary bypass. Did oxygen reduction at night cause my dementia?

Possibly irrelevant now. But my sleep now is interrupted by waking frequently. I often see the same time plus 60 minutes on the clock. I have vivid, often unpleasant, dreams.

And when, like today, I wake after a better sleep I feel wonderful.

That says to me that sleep is a wonderful thing.

I am really pleased and inspired to have become a member of the TiMeS sleep study project team.

In five years’ time, let’s hope we find some treatments or approaches that are proven to work.

You can follow @TrialTimes on Twitter, as we develop the work.

Sleep well last night? asks my wife.

Nope. Kept waking up. Every hour. Almost to the minute.

Nightmare dreams. Still unsure about reality.

And I feel groggy, foggy and soggy.

Perhaps you ought to tell the doctor?

Er, well, what could they do?

Dunno, but…

I can understand why further research is so needed into sleep in dementia. A quick search throws up of lot of articles from pre 2012 but precious few more recently.

And the meta analysis carried out by this UCL team in 2017 found no evidence based reliable treatments.

(Source: Current Opinion in Psychiatry, Volume 30, Number 6, November 2017, pp. 491-497(7))

What might we try?

Drugs? No strong evidence in favour, and plenty against. Plus side effect horrors.

Activity? Of course. But if, like me, you have a few co-morbidities that limit your movement or stamina/endurance, you may be unable to increase exercise significantly.

Daylight? The natural world? Trees? There is evidence that seeing trees increases wellbeing…

Sunshine.. Lovely, but not always available. Being outside, I believe, is good though.

Foot bath ‘therapy’? Yes, someone mentioned that recently. Not so silly if you have painful feet at night.

Aromatherapy? Becoming widely accepted, but is there evidence?

Preventing daytime napping? Could cause considerable behavioural difficulties in late afternoon.

And so on…

One abstract I read spoke of the need to analyse a person’s sleep patterns before attempting treatment. Bit like doing an xray before replacing a hip?

Durr!

I wonder how often doctors in general practice order sleep studies? And if they are available in sufficient quantity?

I wonder if sleep specialists are available to all who could benefit?

And if there is no consensus on evidence based treatments, is a specialist just guessing too?

What do GPs think when I say I am having problems sleeping?

Do they have that heart sink? Another thing they have no real idea how to treat?

I had sleep apnoea for several years before I told the GP, (when I was still a healthy weight!), had a sleep study, and was given a cpap machine. About 15 years ago. And before that, in 2003 I had a coronary bypass. Did oxygen reduction at night cause my dementia?

Possibly irrelevant now. But my sleep now is interrupted by waking frequently. I often see the same time plus 60 minutes on the clock. I have vivid, often unpleasant, dreams.

And when, like today, I wake after a better sleep I feel wonderful.

That says to me that sleep is a wonderful thing.

I am really pleased and inspired to have become a member of the TiMeS sleep study project team.

In five years’ time, let’s hope we find some treatments or approaches that are proven to work.

You can follow @TrialTimes on Twitter, as we develop the work.

Do you feel safe here?

Living with dementia, many of us lose our sense of security or safety.

Some have lived their lives with insecurity, scanning for threats, often not real. It’s tiring!

Others have felt secure, confident, loved and loving.

And some are just alpha dominant people, bulldozing their way through working lives.

All of us have to face changes in these feelings when our cognitive facilities decline.

It might be word loss, or it might be the wobbles. Loss of recognition, or coordination. Inability to sequence actions, or remember where you are (and when).

You may become hesitant to go outside your home. How many have had that ‘where the hell am I?’ moment? I have, and it’s uncomfortable.

How many have shivered with startled fear as a lorry thunders past in town? I have.

How many worry, just a little, under the surface, that something undefinable might happen?

And have you found yourself in a room with people whom you felt to be in some, again undefinable way, threatening?

When you are younger, fitter, stronger, you have coping mechanisms. One, of course, is simply to avoid places and people who might feel like threats. Another is to balance your desire to be there (for whatever purpose) against your unpleasant feelings, and consciously decide…ok, I’ll stay.

When you have no financial or contractual reason to stay, you steer clear of these situations. I mean, it might be the first chance you’ve had in your life to really, deliberately make a choice which completely suits you. For your own pleasure. No one else’s.

I was talking to a lovely man friend, whom I have only ever met virtually, about this recently. Why does he no longer join some virtual groups, but enjoys others? Well, I suppose it’s obvious! He enjoys one, not the other. But actually he said…

Because I feel safe here…not there.

These are virtual meetings! Not face to face with egos and alphas and betas mixed in.

And I totally get it. It’s about feeling some perhaps indefinable threatening fear that someone might make an idle comment, a facial gesture, that makes you feel…I’m not welcome here.

Why did I back out of patient panels in my NHS area? I no longer wanted to feel unwelcome.

Why does a queer person avoid some/many places? They don’t feel welcome. They feel threatened.

Why do ethnic (or any other definable) minorities tend to stick within their communities? Yes, it’s obvious.

Why do I prefer the company of women? Because all my life I have felt threatened by men. (Goes back to childhood and school, of course.)

I do not have the alpha, testosterone fuelled ego that some do. I do have a strong sense of being able, and wanting, to make a difference in…what?…life, society, community?

It’s about welcoming diversity, consciously putting aside our learned prejudices, and just enjoying a person’s company, and indeed their difference.

So, back to dementia, and feeling safe, or not. We may enjoy DEEP groups because we feel safe there. Not judged. Not criticised. But there are still groups which have a sort of personality which may feel threatening. Not wholly welcoming.

Every group is different. Each does develop a culture which emanates from the louder voices. When you notice that someone no longer attends, stop and think. Why? Talk to them. Find out why. You might learn a lot.

Although, if you have a good degree if sensitivity and empathy you will probably already know.

The question then is…

What are you going to do about it? Because it really is very much up to every one of us to challenge intolerance and prejudice if we everyone is to feel safe and welcome.

It’s time to change Dementia Friendly

We need to change Dementia Friendly.

During the ‘dementia friendly era’, post 2012 ish, a lot of well meaning people have attempted to persuade organisations to change, so that people living with cognitive impairment might have less barriers to overcome in accessing their communities.

We, and I do include myself, have provided some basic understanding of how brain disease can affect people, and how the built environment creates additional difficulties and barriers.

We have reached 3-4 million people, and I guess around 5% of the private and public organisations and infrastructure.

Relatively few people living with dementia (plwds) have been involved in driving this influencing forward. Some Dementia Action Alliances have established relationships with plwds, some have been led by plwds. But mostly the work of DAAs and Dementia Friends Champions has been done by those not living with brain disease.

This is not criticism. And, indeed, many of these people have been affected by family members living with the disease; this is often the motivation for working or volunteering in the dementia field.

But I (and some others) have come to realise that this approach has neither (a) had much of a lasting effect, nor (b) started from the real lived experience of plwds.

The Kings Fund guidance about dementia friendly indoor environments (eg in hospitals) is excellent for architects to use, but the cost in money and time of making changes that really matter have made change slow, even imperceptible.

There have been horrendously misplaced ideas, like bus stops in hospital corridors or care homes, where an organisation seeks to trick a person living with dementia into waiting for a bus in a *******corridor! That is patronising, infantilising, and morally wrong.

But there are also welcome changes, like orientation clocks that every patient can see, coloured crockery and different shaped cutlery, coloured toilet seats…These can make a huge difference.

Meanwhile, patients in hospital may be moved 5 or more times during their stay, often at night, by managers who have to prioritise the hospital needs over those of individual patients. (Yes, I know I am oversimplifying…but let’s get down to the basics: are the hospitals there for patients, or patients for the hospitals?)

How many shops actually have changed that black entrance doormat? How many supermarkets have placed chairs around their store? Or lowered signage? How many still move products regularly from aisle to aisle, or shelf to shelf?

I believe that the people living with dementia are the ones who should lead this work. We plwds should be identifying what WE find hard, what gets in OUR way.

A fascinating mapping exercise in an Australian town showed where plwds went in their day to day lives, and identified why they avoided certain places. And this led to the reality of plwds’ lives being improved, rather than a huge attempt to change the whole town.

(See note below)

What we seem not to grasp is that neighbourhood is what really matters in our lives, and even more so as a person’s world gets smaller. What we know and recognise are what matter. What we remember is linked to our environment, be it a smell, a view, a tree, or the sound of a daily train.

When these change a person living with dementia can feel lost, uprooted, with no anchor holding them to who they are. (sorry for the mash of metaphors)

I feel this as I drive through my village and see new houses, tidied gardens, Chelsea (Cheshire?) tractors, keep off my verge boulders, no dog poo signs. I remember the very different village I moved into 40 years ago. And that is where I am returning to.

I am beginning to feel scared of going into Shrewsbury on my own. The deafening, frightening traffic noise. Crossing roads…which way do I look? So many cafes I can’t make a choice!

I am preferring online shopping/delivery to going into supermarkets.

My world is getting smaller, and my neighbourhood is what really matters. (And my wonderful Zoom friends)

What a DAA should be doing is mapping what matters to me, and what prevents me from doing that or going there. We plwds should be at the forefront. Then they can address what matters.

Dementia Friendly? It’s a good brand, but it needs rethinking.

We, society, prefer to ignore the needs of the million or more who have an impairment or disability. We think we can just do an hour’s ‘training’ and all will be well, regardless of the barriers we have built. Sticking plaster.

Let’s design for those most in need of environments that are easy to navigate.

Let’s ask people living with dementia what matters to them.

Let’s take the time to listen.

……..

Note: Included in a fascinating collection of research reports:

Dementia and Place

Practices, Experiences and Connections

Edited by Richard Ward, Andrew Clark and Lyn Phillipson

Bristol University Press ISBN 978-1-4473-4902-0

Routine?

Some mornings you wake up and want to get going.

Some mornings you wake up and just feel like weeping.

My eyes are filling now, even as I write this, without any reason obvious to me.

Nothing has happened to me. Nothing like the catastrophes in other parts of Britain and the world. People are knifed in Birmingham. People are tied up and shot in Bucha. People are starved in Mariupol. These are frightening and horrifying.

No, I just wake up, out of admittedly unpleasant dreams which are all too real, and I feel tearful.

Yesterday I had a conversation with a few (deepy) friends about how you pull yourself out of your hole. That hole we all occasionally sink into, often after diagnosis, but then at unpredictable times during our shortening lives.

Why on most days do I feel optimistic and positive, but sometimes that it is all too much? What is the trigger?

We spoke also of the ‘co-morbidities’ many of is have at this age. Arthritis, diabetes, blood pressure, cancer, pain…and I think these do sometimes induce a morose mood of ‘how the f**k am I going to get through today?

Getting started over a pot of tea can be hard work. Wordle. Emails. Calendar commitments. Dog walk (where today?). Take pills. Test blood sugar. Breakfast? And it’s ten o’clock already. The clock chimes.

Then a voice says ‘what does it matter? Ignore the shoulds and ought tos. Who cares? Have a lazy day?

Last night I woke at 1.30, 2.30, 3.30, 4.30, 5.30 and 8.30! I do this pattern most nights. An hour’s dozing sleep with dreams or relived conversations and lifelong hauntings, with almost exactly 60 minute wakings.

I don’t wear a watch nowadays, and I seem to be able to tell the time pretty accurately without it. Perhaps I have trained my mind to count minutes, and some curse has it that I will never sleep through a night again.

Certainly a night of bad, vivid dreams, (last night being unable to get to my destination, and just going round and round, bogged down…) causes an unpleasant start. For several minutes you’re not quite sure where reality is. This is confusing and disorienting, but not weepy sad.

Yesterday we spoke about some of us just being determined to keep going, or to finish something, or just being a bit bloody minded perhaps. But I think even the most committed, determined people have moments of doubt. What pulls them out of that?

And what of those given a diagnosis and ejected from life as they knew it by some oaf telling them their life is over?

What of the many people who don’t possess in built perseverance and resilience?

We say we just get on with the stuff you of living. Or we force ourselves to do something we know we enjoy, like painting or gardening. And the life spirit returns. I’ve felt that.

But what is the pivot point? What triggers that first tiny whiff of optimism when we are in the depths? Is it the drive to survive, like taking a breath, a purely physiological surge of survival instinct? Or is it your brain making a synaptic connection which starts the motor again?

I’m not talking about real, unutterable depression; that is a different thing. I’m talking about those moments (or longer) of despair which rise up from time to time.

Perhaps this is a topic for research? What stops people with dementia and co-morbidities from sinking into despair? What gets them out of it?

Somehow we find, we have to find, a source of strength and inspiration to get back up and walk on. It may be unsaid and unrecognised. But something is there.

For me I think it may be my surrounding natural neighbourhood. Perhaps my new found painting. Perhaps the dog who needs food and walks like clockwork. The thought of ripe, juicy tomatoes in the summer if I make the effort to grow the plants now.

I think we have to keep doing things we enjoy, and make these things such ingrained habits that we do them even when we feel pretty shitty. We need to train our minds to work like clocks, and just keep chiming the triggers to get us out of our chairs and go on.

If this is true, people who have no regular pattern of activities that give them pleasure are least likely to get out of their personal black hole. They may just sink.

Peer support groups can provide the lifeline, and I have witnessed this many times. Friends who get it, who laugh or swear at the shit thrown their way, and come back for more each week or month…who can offload without fear of criticism or ridicule…invaluable.

Now then, breakfast and coffee. Blood sugar. Pills. Check seedlings. Walk Lupin. Zoom. Paint. Cook supper. More pills. Injection. Bed.

It’s a routine.

What next?

A friend of mine who lives with dementia recently said to me that he doesn’t feel he is doing anything worthwhile. He retired several years ago from an intellectually demanding job.

He felt a bit miserable, unsurprisingly.

You work for 40 years using your brain to sort out complex matters, and then…then, you can’t.

You are important, and have a position in your community and in wider society…then, you don’t.

You don’t have much spare time to develop interests and activities outside your job…and then you have no job.

Which brings me to ‘identity’.

I’m reading a collection of short reports on research studies, which pull together evidence and learning about identity, belonging, neighbourhood, agency, and adapting as you age or develop dementia (often both).

‘Dementia and Place, Practices, Experiences and Connections’, Policy Press, Bristol University.

The evidence is that a sense of identity is strongly rooted in neighbourhood and agency. That is, familiarity and recognition of your neighbourhood, features and people (though not necessarily friends), and doing or choosing within the neighbourhood of your own volition.

I and others have said many times that engagement in your community, how ever widely you define community, is really important as your brain disease develops, and it seems that gerontologists agree for just ageing.

In my world and words, I find that although I have few if any close friends nearby geographically, I am energised and grounded by just seeing familiar faces when I’m out with the dog, saying hello, nice weather, it’s bloody cold today, or whatever, and smiling. And – more important- seeing a smile back.

It just takes me out of any negative thoughts for a few seconds and I feel better. Really.

Similarly with the natural environment around me. This morning the sun us shining, with a few cotton wool clouds in a blue sky, and spring flowers are opening up. Daffodils, cowslips and primulas, grape hyacinths and lungwort, aubretia in its deep bluey purple glory. I found my very own patch of ramsons (I’m not telling you where) and picked a few leaves for a meal last week. Wonderful on top of scrambled egg.

Seeing the old oaks budding, ash flowers bulging, catkins dangling…wonderful. (Not so wonderful the birch pollen which will soon waft around.)

Why do I value these simple, annual things so much? Perhaps through my photography over the years. Perhaps exposure while birdwatching. (No, not that sort.) Perhaps childhood love of walking in the hills around Abergavenny (my then paradise, Wendy). I remember the smells and sights as if they were yesterday.

Perhaps my painting also helps, as I look so closely to see what I can translate onto paper.

Neighbourhood matters psychologically.

I think that as we age and grow into the last stage of our lives, we cease to make decisions and do things which have defined our identity most of our lives. So we need to find other things to take their place.

For me? Carving and painting. Blogging and campaigning.

I can no longer walk up a big hill, so my fairly flat landscape here in North Shropshire is really appropriate.

I drive only short distances now, so I don’t have the freedom to roam of earlier years.

We adapt to our circumstances. We adapt to our environment. But we should not stop making the effort to be who we are.

As faculties fail, and dementia gets the better of us, we will be unable to do what we used to. At least, not in the same, easy, independent way. But I believe we can still, and must, find things to do that make us who we are. And not drift in a sea of regrets.

Yes. Easy for me to say!

It may well take someone else to help you find something to enjoy. I was phoned by the social prescriber from my general practice the other day. It was like the first time someone gave me their seat on a bus. Slight quiver in my brain.

But I also though, wow, someone cares, someone will try to help me if I think I need it.

Here in The Shire we are about to pilot a Living Plan. This is a document that will be used by a person with dementia and their caregiver if they have one, and held by them. It will be a reminder of who they are, and what they value and enjoy.

Working on this Living Plan with health and care people will facilitate discussion and thought about these things. It will provide paid caregivers with invaluable information, it will be the basis for social prescribing when needed, and to enable real personalised care.

Once proven we will use our Living Plan template for all people living with dementia, from diagnosis, but it would be good for anyone as they age and brain and body parts being to go astray.

So I am going to ask my friend to pilot our Living Plan, to help him and his caregiver to focus on what matters, and to have a shot at finding a new activity he can develop and enjoy.

I have learned in the last two years that all of us can learn something new, despite, or because of, changes in our brains and our physical capacity.

You must not give up trying something new. And doing what you enjoy.

Functional Cognitive Disorder: dementia’s blind spot

[Study reported in Brain (Brain. 2020 Oct; 143(10): 2895–2903. PMCID: PMC7586080 Published online 2020 Aug 13. doi: 10.1093/brain/awaa224 PMID: 32791521 Functional cognitive disorder: dementia’s blind spot)]

Some will have read recently in social media comments made by Professor Rob Howard about whether some of us have been misdiagnosed with dementia. We find these comments hurtful.

I read a study (of which he was one of the authors) published in 2020 in the journal Brain, the title of which is Functional Cognitive Disorder: dementia’s blind spot.

Prof Rob Howard seems to be saying in his various comments on social media that those of us who can and do speak publicly, and write, about living with dementia do not have dementia. His hypothesis is that we have been misdiagnosed.

For example, I cannot have dementia and be able to read his paper and write this blog, because the neurodegeneration implicit in dementia would prevent me from doing so.

The authors of this study state that MCI (mild cognitive impairment) does not convert inevitably to dementia. And MCI can include many causes other than neurodegeneration.

The underlying hypothesis is that a significant proportion of people diagnosed with dementia (most often Alzheimers’s Disease) do not have neurodegeneration. The authors use the terms Functional Cognitive Disorder and Subjective Cognitive disorder to describe the conditions that are misdiagnosed.

One of the key elements that categorise FCD seems to be inconsistency. Thus, a patient would give different responses to questions or tasks on different days or in different environments.

I deduce from this that the authors’ view is that Alzheimers Disease is a neurodegenerative disorder whereby damaged areas of the brain produce consistent functional inability. And that therefore inconsistency is evidence against neurodegeneration.

Many people living with a diagnosis of dementia experience good and bad days. We don’t usually know why. Causes can probably include physical activity leading to fatigue, or stress caused by excess sensual stimulation (noise, cold, movement…). We often describe these situations in our conversations.

Many of us believe that when one part of the brain, perhaps very small, ceases to function due to trauma or degeneration the brain finds a new route around the blockage. This is the essence of learning: creating neural pathways.

This happens fastest in young brains, with the greatest neuroplasticity. Older brains, it seems, cannot create new pathways as easily. But we all know (from television and other media) that people with traumatic brain injury can learn to find ways of doing things that the injury has prevented.

The newly learned function may not be as efficient as what has been damaged, but it can still work.

I have been told that my high functioning brain has compensated to a large extent for the deficits caused by my underlying brain disease. (Yes, I have an IQ of around 130-135.) Hence, my brain is able to learn and adapt better than some others. Many of the people I know whose decline is slow are also high functioning individuals.

So our brains have found ways around our blockages, whatever caused these.

On inconsistency, aren’t humans inconsistent? We are not automatons. If we get tired we don’t function as well, and stressed/tired people often do become inconsistent in their behaviour, and their responses to situations.

Then, why would we not find that activity and fatigue have a far greater negative impact on brain function along new, less efficient pathways that we have developed to get round blockages?

We often describe how as long as we think hard about what we do we can usually manage to do it. Only when we switch to autopilot, like we used to, do we make mistakes. (Boil a dry kettle, say the wrong word, fall over…). It’s hard work, living with brain disease. Some people do not fight it; others do.

The authors write about FCD being non degenerative. They imply that a cause might be stress and anxiety, which over a lifetime can cause the symptoms diagnosed as dementia. And that certain therapies can be helpful to alleviate these symptoms.

I certainly do not disagree with this. And I put myself in that camp. Indeed, I was first diagnosed with MCI following a PET scan and biomarker tests several years before my dementia diagnosis.

However, my symptoms became worse over years. I was not offered therapies. I was prescribed mirtazipine, which I did not tolerate because it totally knocked me out. I was prescribed anti-depressants, which seemed to help. Though I am uncertain about this effect.

Things got worse and I was scanned again, which showed neurodegeneration. I did several hours of testing. And the Memory Service psychologist and consultant psychiatrist told me I had Alzheimers and Vascular dementia.

In these circumstances why would I not believe that they were right? It added up to me. And to them!

So, to conclude, Prof Howard and others may or may not be right about misdiagnoses, but there appears to be no solid and accepted clinical evidence that is used in cognitive assessment services around the country to distinguish these different diagnoses.

To announce on social media that those of us who advocate for better (or any) support services cannot possibly have dementia is wrong. Morally wrong. Medically wrong.

Prof Howard has not examined and tested us. He is an medical academic studying the intricacies of how the brain works without being able to open up our living brains to examine them. He wants solid, demonstrable facts, and believes that a definitive taxonomy for diagnosis is possible. So he denies what is as yet a mixture of subjective and objective judgement by professionals.

If head scans show degeneration, and tests confirm this, who is he to tell us we are presenting a false narrative of living with dementia.

If consultant experts tell us we have dementia why would we not believe them?

Who is anyone to say that if we don’t need 24 hour care we cannot have dementia?

What we are doing is telling people across the world that brain disease usually develops slowly and that while it is possible you should live as well as you can or choose, and do the things that make life worthwhile and enjoyable. Learn new skills. Meet new friends.

A diagnosis is not the end of the world; it is often the start of a new one.

If you read our blogs and books you assume that we cannot have this disease. What you do not see is the effort and time and delays and stumbling that our lives have become. We’re just not dead yet.

Reminders

Reminders…

Going away is good.

Looking at different scenery, different walls, villages, towns.

Walking places you haven’t been to before. On sand and shingle, rocks, grassy clifftop paths.

Changing your routines.

Darkness levels at night, storage in kitchens or bedrooms. room layouts.

Light switches, stairs, carpets.

Temperatures, lighting, windows…all different.

These are all reminders of how you’ve changed.

This brain disease is something you get used to. Following routines for familiarity.

And familiarity breeds…confidence.

Confidence means you don’t have to think as hard about every tiny thing you do.

Last week I stayed in North Wales in a small stone barn conversion. A very new and nicely done place, close to several small beaches. We went just to take in the waves and spray and sand and rocks, the wind and the views.

For a change. For a new year.

There were just two main rooms and a walk-in shower room. Not too much to navigate.

But everything was different. Everything.

And that was tiring.

Luckily there were no stairs or steps. The walk-in shower was very good. And being there just three days we didn’t have much to put away in cupboards and drawers.

So I didn’t really have any difficulties. And I am, after all, still fairly early in my disease.

However, I immediately wanted to be home in my light, airy house, surrounded by my garden and birds and roses and field. I yearned for that lightness and familiarity and ease.

Walking on beaches in strong winds was exhausting, staying upright, compensating, struggling through patches of soft sand or shingle. Balancing on rocks and boulders in places.

And the route down to one beach, though short, was steep with no proper path. My legs are weaker now and stopping escalating into a wild run down hill is difficult. Letting go would have been, well, disaster. Though I have learned to curl into a ball and roll when it does happen.

My three nights in that dark, stone (overheated) building taught me that I really just want to be at home. It’s where I feel safe. It’s quiet and light and familiar.

Now, just for a moment, consider that the same happens to people when they go into hospital. Or to a hotel. Or a friend’s house. A restaurant or cafe.

It’s good to socialise, of course. But as your brain deteriorates, you have to work harder to compensate and do even the simplest of things.

Yesterday I went out for lunch…we very rarely do this. But it was a sort of treat at the end of our week of holidaying. It was/is a very nice bistro type pub in a Shropshire village. Not busy.

But the noise, the clatter and echo, the darkish interior, lots of visual and aural stimuli to process, made conversation hard work. I went quiet. I tried hard to work out what my wife or the staff said, taking those little seconds to think what might have been said, what was likely, did it fit the sound and the facial look…so things slowed down a lot for me. And I reflected and withdrew a little. And that was a quiet pub with slow business!

I write this to demonstrate how our brain disease affects us in the small everyday stuff of living. And why familiarity is so important. When Wendy Mitchell goes for her much loved Lake District visits she always stays in the same place, the same room, and walks the same walks. Because she knows it and can totally relax.

My wife often remarks (I put that politely) on my dislike of change around the house. She’s right. I get used to a layout, to the furniture, the light, where I paint, or read, or listen to music. Or just look out through the windows.

Change is sort of good…because it reminds me how I value stability and familiarity. But change is hard work when your brain isn’t working well.

I am dementing!

I am dementing.

I have a disease in my brain which causes some functions to deteriorate, but…

I am dementing.

It was a bolt of electricity through my arm, like when I once touched a live wire as a boy. And lived.

I stopped. Checked. Double checked. Had I heard it right? Who said it?

This is 2022, not 1922.

We’ve scrapped lunatics asylums, but we haven’t moved our understanding or our compassion much.

So let’s set the scene.

I was in an NHSEI virtual meeting with health and care professionals across the North of England. About thirty people, I think, and me, the only one living with dementia.

It was a networking session to share what was going on in Memory Services, and the lengthening waits for assessment. Apparently some areas have seen a substantial decrease in referrals from GPs in the last couple of years. Others, though, have seen increases in both referrals and diagnoses.

The chair of the session was a GP somewhere north of Manchester. She expressed how stressed GPs are, which I completely get.

I got my hand up first! ‘It’s not surprising referrals are down because navigating access to GPs was now so difficult that many give up.’

The response was a bit, you know, 50/50. Several people said yes they understood that, but on the other hand most referrals stem from family carers visiting GPs rather than those with dementia themselves.

I was really struck during the hour that in a few areas referrals and diagnosis had gone up. And it seemed that this was down to having a team of local staff on the ground to support people, who flagged as being concerned about their brains, into a referral and diagnosis. Or staff who reached out into ethnic minority communities. In other words, areas where a group of passionate staff had gone out to make things happen.

There was talk about GPs taking on more diagnostic assessments themselves, for patients who present with pretty obvious symptoms. (GPs pretty reluctant…memory service professionals in favour.)

There was much made of ‘memory’ being the tipping point for referrals. No one (except me) challenged that, and there was implicit acceptance that memory is the issue. I wrote my views in that in the chat box. (Stoopid)

About half an hour in, the GP chair referred to patients ‘dementing’. She spoke about judging whether her patients were dementing when she saw them.

That was my bolt of jolting voltage.

I did write a comment about using the right language to describe people with this brain disease. And one or two people ‘liked’ that.

No one spoke about it.

I was in a minority of one. One person living with dementia in a discussion of how referrals and assessment are going. That, I’m afraid, speaks volumes.

There were some wonderful people on the call. And many positive and interesting comments about the work they do.

GPs probably feel under fire, certainly under immense pressure. Memory services seem to be paralysed by covid, or possibly taking the opportunity to do things that are easier for them, like telephone assessments! (How ridiculous is that?)

Of course, Covid has affected how everyone lives and works. But I am wondering how long it will take to pick up momentum again, to provide better support and services for people affected by dementia.

And how long will it be before language catches up with compassion. Dementing? Nope.

Just boxed up on a shelf labelled ‘Too Difficult’.

I’m grateful for having dementia

“Just be thankful! It could have been cancer.”

“There are people with much worse diseases.”

“I’m grateful for having dementia; I’ve met so many lovely friends.”

Have you heard any of these before?

How did you react?

I mean, how could anyone be ‘grateful’ for dementia? That’s just stupid.

And yes, of course, there are millions of people with similar or worse health and disease, with whom you would not swap places.

But let’s just reflect.

You’ve got to die. You will die, one day, expected or not, young or old, suddenly or in a long drawn out descent into a personal hell. Possibly longing for the release of death.

I believe that death itself is just a fading away, not unpleasant, and not going anywhere. Just ceasing.

Of course sudden death is hardly fading away, and the pain before death might be horrendous.

But based on doctors’ experiences, I think the body fails, bit by bit, until the brain loses oxygen and can no longer work. And you fade away.

So I’m not afraid of death itself.

Having witnessed a family member live through, and die of, breast cancer, suffering very real, engulfing pain when meds were insufficient, and watching the disease spread until it fungated through the skin, I know I would rather not go through that. Another close relative died of brain cancer, at times in obvious, excruciating pain.

So, yes, I’d rather have this brain disease than cancer.

Living with dementia we may well feel severe emotional pain. Suffering. We are very aware as we lose control over everyday little things. Like talking, or eating, or weeing, or standing upright, or writing, or remembering.

We suffer the emotional pain of knowing we can no longer enjoy our families and celebrations and activities that we used to (and still do!) look forward to.

We suffer the loss of our future lives, that we sort of took for granted.

And much of this emotional pain is probably similar for those who contract cancer, or heart disease, etc. The big differences are that our brain disease is invisible and incurable, terminal.

With dementia, you don’t have health and care professionals flocking around you, rushing you into a treatment programme. You don’t have a stent or coronary bypass operation that enables you to get back to normal life.

Dementia is a lonely disease. Mostly you are on your own. After diagnosis, too often given in cold, unemotional unhelpfulness, you might get one visit from someone who gives you booklets, and advice about not taking risks, and putting your affairs in order. Then, in most areas, there is nothing.

Dementia is a lonely disease. You think your life has suddenly ended, because that’s what you’re told. You stare into a black abyss. You don’t want anyone to know, so you hide away. You stop doing the very things that made living worthwhile, having fun, meeting people, going places.

Dementia does not have to be lonely though.

Some people who you thought to be friends might leave you alone. But you can make new ones, on your own terms.

How much pleasure you can get from just meeting the same faces regularly, smiling, and exchanging hellos! Walking your dog. Or going to the local shop.

You don’t immediately lose your driving licence (usually). And there are buses, trains and taxis. Go on, visit somewhere. Go to the seaside. To the hills. Anywhere.

What we usually get, with brain disease, is a slow withering of functionality. It’s not sudden. So you can go with it, live with it, day by day, without huge ructions.

Back to where we started then. Can you be grateful for developing dementia?

Well obviously not.

But this is all relative. And dementia can lead you into many, many new, wonderful friendships.

I started this new journey seven years ago, a year after diagnosis, when I joined a DEEP get away in Llandudno. And I was hooked.

By the positive attitudes, the head on confrontation with the disease, the understanding, and above all the sheer, genuine warmth from others living with dementia.

I find it difficult now to talk with someone who neither knows me nor my dementia. Beyond the friendly niceties of everyday greetings.

I cannot quickly enough process what others say, or work out answers to their questions. I have little patience (or desire) for the egoism of (mainly male) social group dynamics.

But my DEEP friends get it, because we all know what it’s like, and we all allow time and divergence and space. We work how others are feeling, which varies hugely day by day, hour by hour, in order to accommodate and support them.

And while I certainly don’t want to talk all the time about dementia itself (and we don’t), it is never far away, just under the surface; it binds us together.

I am grateful for dementia having brought me my wonderful companions and friends.

I am grateful to dementia for learning new skills, like carving and painting.

And I am grateful to Covid for forcing us onto Zoom so we can regularly and frequently talk to each other.

There is a lot to be thankful for.

And I just wish deeply that every person diagnosed with brain disease/dementia could be brought into our world of strength and friendship and optimism.

It’s not Christmas, stupid!

We seem to have been dominated recently by our obsessions with Christmas. We’re determined to splash our cash on neon coloured plastic and sugar highs, forgetting entirely the origins of the season.

And we who live with shrinking brains might appear to be obsessed with humbugs.

Ah, those wonderful nuggets of brown and white twisted goo, set just hard enough to allow a tooth to get stuck and our precious mercury amalgam to extract.

Humbug. Yes HUMBUG.

We don’t hate Christmas…we love it. We yearn for the precious but lost joy of anticipation in the weeks leading up to it. For tearing the wrappers off presents we hope for. And we love the rare food treats on the day.

For a few hours at least, until the fully stuffed extent of mess in our stomachs just yearns to get out.

No, we don’t hate Christmas. We just cannot do it any more.

Christmas is…disruption, noise, lights, excess, quick fire jokes (and insults), loss of routine, redefined roles…

…and everyone has to enjoy it. Every minute of chaos and disorder.

The universe shifts. People become Canutes, desperate to stop the earth revolving, flat earthers who want to see infinite views, back at the lost year, and forward to that wondrous future.

Those with brilliantly functioning traffic light brain systems can handle this chaos. They can process the hyper activity and false emotions, the dysfunctional disturbance of everyday certainties into crevasses and black holes.

No, we don’t hate Christmas; what we hate is chaotic disruption in our carefully ordered daily lives.

Because we need order just to exist.

Our brains have started to lose computing power. Our RAM is breaking. Our connectors are dislodging.

We cannot do it any more.

And we feel incredibly bad about it.

Guilt is a terrible thing. Guilt gnaws at your intestines. Guilt rots your feelings. Guilt inverts pleasure into horror. And guilt breeds more guilt. The perfect unvirtuous circle.

We would give anything to enjoy the day with our loved ones (and others). We still want that beautiful anticipation, but as each year passes, and another million cell connectors go down, we realise that it is no longer possible.

For a few years we stick it out. We try, we work at it, we really do. Honestly.

But one year, out of the blue/grey matter (?), the truth breaks through.

“Namore,” quoth he. And the Raven finally sees the truth.

It is over.

The deceptions and tricks just won’t do it any more.

‘Just got to take the dog out.’

‘Ooh, I need to stretch my legs.’

‘No, I’ll sit over here, I’m fine.’

‘I’ll just make the bread sauce this year.’

No, instead we yearn for them all to go home. We hide our impatience (mostly) and our anxieties. We really, really try not to gasp as another glass is knocked over.

We want our routine back. Our home. Our radio. Our tea. Our quiet.

Because gathering and holding our thoughts is such hard work now that we cannot gather and hold others’.

Forgive us, please, that we can no longer join in. I promise, we would if we could. We would love to.

But when you have to stand still for five seconds before putting your leg into your trousers, to make sure you get it right and don’t fall over, believe me, you don’t have much spare capacity.

When it takes five seconds to work out what someone said, and another five to decide how to reply, quick fire, multi-person dialogue is not really a starter.

And for goodness sake don’t start down that other road: ‘well if he can write that he can’t have dementia!’ My intellect is unimpaired, mate. It’s the speed and method of using it that are declining.

I am more than ever convinced now that as outward communication reduces, internal conversation increases. As wiser people might have said:

I talk to myself because I find my conversation interesting. And because I can (still).