Tomorrow is the start of Dementia Action Week 2019.
It used to be called Awareness Week but awareness is fine, take Dementia Friends which is an awareness session NOT training but what is needed now is action to bring the treatment of Dementia in line with other chronic terminal diseases.
It is no longer acceptable for a GP not to refer a patient with Dementia for treatment because it is “not appropriate” or “they don’t understand“.
I have met many professionals who are going out of their way to develop the skills necessary to communicate with people living with Dementia in their clinics because they recognise the benefit to the person, their family and the healthcare system.
The Alzheimers Society Conference is on Tuesday and Wednesday this week at the Oval in London, drop by the 3 Nations Dementia Working Group stand if you are there.
I started another research study on Friday but at the time of writing this article, I cannot remember anything about it, apart from that the researcher was supportive, maybe some of it will return in the future.
Alzheimer’s Disease International also have a survey running which you may wish to take part in, especially if you are a man as by Friday, only 18% of respondents were men.
“My last post was a ranty one – hands up, it’s a fair cop. I allow myself a ranty post on an annual basis and this was it (obviously, there is now absolutely zero chance of anything bad happening to mum this year that might warrant further ranting – because that’s how it works – phewf what a relief).“
It’s been a busy couple of weeks travelling and attending meetings etc, culminating in being on a panel for an Alzheimer’s Disease International Webinar on Friday.
All smiles, you might say “you don’t look like you have Dementia” reader, but Dementia is a hidden disability.
Behind the facade of smiles, a running battle is taking place, to participate in the webinar and to “appear normal”, whatever that is, for 60 minutes.
Game of Thrones it is not, literally a fight to the death it certainly is.
A battle between a person and an insidious chronic terminal disease, compounded by comorbidities, certainly.
Made even harder by the judgement of others and the continuing abuse of our rights.
A couple of weeks ago, I met Rachael Maskell MP, chair of the APPG for Ageing and Older people at Portcullis House in Westminster to talk about the Alzheimer’s Society proposal for a Dementia Fund.
I was one of many members of the 3 Nations Dementia Working Group, who have had the opportunity to speak to MPs about the proposal.
I would like to extend my thanks to Rachael for writing and the 68 MPs who have signed an open letter to health secretary Matt Hancock asking for people (living) with Dementia to be given personal budgets, which they can spend on care home costs or home adaptations.
The letter says ‘While people with cancer (and other chronic terminal diseases) have their treatment costs covered by the NHS, those with Dementia struggle to finance the increasing costs of care as council-run social care is cut back.’
“States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c) Provide these health services as close as possible to people’s own communities, including in rural areas;
d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.”
Alzheimer’s Disease International also have a survey running which you may wish to take part in, especially if you are a man as by Friday, only 18% of respondents were men.
“Since I got back from holiday mum has been more grumpy than usual. Sometimes she feels she has been wronged, withdraws, gives monosyllabic responses and behaves a bit like a sulky teenager. Not just with me, but with special carers that she normally gets on with. Monday is a good example of life this last week.“
I was in London this week to talk to Rachael Maskell MP at Portcullis House, adjacent to Parliament and I was there with Sam and Laura from the Alzheimer’s Society.
It was a fruitful meeting and it was good to meet someone who understands rights and Dementia.
My friend Patrick Ettenes was there the day before having another fruitful discussion with an MP.
We were there as part of the 3 Nations Dementia Working Group members engaging with MPs to talk about our experiences and improve MPs understanding of the challenges we face.
I stayed in a Hotel the night before and I went to a local shop to get a sandwich.
On the way back I sat over the road from the Hotel and for the first time, I noticed how noisy London is.
It was strange as I had worked in London for almost 10 years when I left School and been to London, many times since, but this was the first time I noticed how noisy it is.
In the world of Dementialand, we come to find that things can affect us in different ways than before, changing our perceptions and causing new emotions and emotional responses.
This in turn can change the way we interact with those around us, making us appear resistive or uncooperative when in fact we are just trying to deal with our changing perceptions of the world around us.
As our brains slowly die and contract, we go through life with Dementia, pathways die and signals never reach their destination with increasing regularity.
We may not notice the changes as time goes on and they may become part of a new reality.
A reality that insidiously become normal to us but foreign to those around us.
Alzheimer’s Disease International have a new Survey
“I’ve come to realise that any loss changes you, and perhaps the most important message about loss is that you don’t forget, and that’s ok. You can’t erase loss from your life however it has touched you; all you can do is find ways to acknowledge your loss and to live with it.“
Its Easter Sunday, traditionally a celebration of the resurrection of Christ but lately, a money spinning event generating untold amounts of paper and plastic.
Hopefully reader you will dispose and recycle all this packaging appropriately as Mother Nature is slowly being choked by micro plastic and as the forests of our planet being cut down, the lungs of our planet, taking in the carbon dioxide and releasing oxygen, slowly disappear.
It’s been warm over the weekend, so the weather app on my phone says however, I have felt cold.
It was the same last summer yet still people make inappropriate comments because the stigma of Dementia still dictates that it is all about memory loss where we are hunched over drooling, with wrinkly hands.
Society and the media need to understand that there is so much more to Dementia.
Behind the façade that we may choose to put up is an invisible disability eating away at our abilities daily.
We are like the egg timers of our Grandparents, our abilities are the sand and our abilities fall through the bottom one grain of sand at a time until all that is left is the shell of the egg timer.
I saw a comment on social media “Labels are for Jars”.
In this digital age, we are pidgin holed by labels, assigned fields in a database, defined by those labels and ultimately, we can be abused by society and individuals, by those labels.
Labels lead to assumptions about our abilities, our need and our cognition.
Assumptions are made about how we look and behave.
From experience, using terms such as “behaviour” and “aggression” produce a negative response to a person living with Dementia.
Replacing them with “emotions” and “emotional responses” produce a more positive questioning response.
Positive, because a person living with Dementia will not be cared for negatively.
Questioning, because attempts will be made to ascertain the what, where, why, how of an “emotional response”
To resolve the responses to the benefit of all without automatically resorting to chemical/physical restraint, involuntary care, sectioning/safeguarding.
I hope you have a good week reader and “Sunday Musings” will be back next Sunday.
Nominations for the National Diversity Awards 2019
“I challenged myself to come up with the ten themes I hit on most frequently when I talk to care partners. I figured this would be a good representation of what I think is important for care partners to know…because it’s stuff I repeatedly talk about. Now I’m thinking about making this into some sort of handout or poster.“
With the changing of the clocks, the days are getting longer and sunnier, if not warmer.
During this week temperatures were as low as -2c and the occasional frosty morning and chilly wind.
A chilly breeze in the form of the Liberty Protection Safeguard (LPS), via the Mental Capacity (Amendment) Bill, which is back to the House of Lords for a final time, may soon blow a chilly wind across the world of Dementia and other disabilities if it is misused.
Having a diagnosis of Dementia means that we are likely to lose “Mental Capacity” at some point.
What many Councils, Organisations, Hospitals, Care Homes and Professionals do not realise is that although we can lose “Mental Capacity” we can never lose legal capacity and that our rights under International Law and The United Nations Convention on the Rights of Persons with Disabilities (CRPD) still apply and cannot be ignored.
I wonder how many “Best Interest Meetings” document and make decisions that comply with the CRPD.
“Who knows if that was the last walk into town…..at least I had a plan B…….uncharacteristically exhausted after such a short walk, but I did it, and if it isn’t ‘the last’….well that will be a bonus…..“
Better late than never, I should have posted this yesterday but try as hard as I could the connection from my brain to fingers wasn’t working albeit, I just couldn’t find the words in the first place anyway.
I try to show that there is a life to lead following a diagnosis of Dementia but the insidious way that this disease slowly eats away from my abilities bringing with it new challenges makes even simple things like writing this blog a challenge.
On Saturday I am pictured below appearing via Zoom at the Newcastle University hackathon, being interviewed by Laura Booi
Other than that, it has been a quiet week, with rest being the priority to fight the tiredness and fatigue and dealing with headaches and a foggy head.
Nominations for the National Diversity Awards 2019
I’ve been on my travels this week to London and Milton Keynes.
For three days I was able to give the appearance of some normality but the rapid use of my cognitive reserves told by Thursday.
We choose to put up a façade of normality as a sort of comfort blanket for ourselves and our families and talk about what we can do, not to belittle the experiences of others but to offset the abusive stigma that we face that can lead to disablement at the point of diagnosis and beyond.
Behind closed doors, the reality of living with Dementia takes over, it’s no party, I can tell you, mourning for a life that is slowly disappearing, losing control of who we are and being challenged by the person we are becoming.
The Brexit Smokescreen
The smokescreen of Brexit continues, passed the 29th March, as while MPs and the media focus on Brexit, more important concerns such as poverty, disability and rights are pushed ever further to the back of their consideration and action.
Since Sarah Newtons resignation as the Minister for Disabilities, no one has been appointed in her place, leaving a vacuum in Government for the representation of people living with disabilities.
The situation is further exacerbated by the Shadow Disabilities Minister, Marsha De Cordova, who seemingly talks more about what she is doing in Brixton than the potential rights abuses of the Mental Capacity (Amendment) Bill and the rights of people living with disabilities under the United Nations Conventions.
The Secret Facebook Group
I liken the House of Commons to a secret Facebook group, cut off from the rest of Facebook.
Anti-Democratic, anti-rights, anti anything that doesn’t fit with their own personal self interest.
I also liken the leaders of the Political parties to Neville Chamberlain, appeasers, waving their order papers and scanning their mobile phones in the chamber whilst,appealing to the majority of their party and big business, oblivious as the anger of people on both sides of the debate rises.
Also to Nero, fiddling with indicative votes whilst Democracy burns a slow death in the UK.
The Future
We need the unifying words of Churchill and the Social conscience of Lloyd-George.
Not the aggressive policies of Thatcher and Attlee who used force to further their interests.
As in 1945, we need a Caretaker Government, a Government of National Unity with a cabinet from the four corners of the Union to re-enfranchise the people of the union.
We need a Carbuncle to fight the disease of self interest and anti-Democratic, anti-rights, anti anything democratic.
To elect MPs that have long left behind the infant school playground and have learnt the skills of debate, compromise, democracy, social conscience and to be held to account by their local party.
Who listen and act on the concerns of the people they represent, thereby upholding their rights and the democratic principles they serve.
To once again be the servants of the people not their own, big business and their National Party’s self interests.
The Oxford Living Dictionary defines a politician as either:
1A person who is professionally involved in politics, especially as a holder of an elected office.
1.1A person who acts in a manipulative and devious way, typically to gain advancement within an organization.
Vacuum
The way the House of Commons conducts its business currently is leaving a political vacuum that the far-right and far-left are waiting to fill.
We only have to look back 100 years or so to the history of the 20th Century to realise that there may be a Lenin or Hitler, waiting in the wings, with their final solution to the Constitutional crisis that we now face.
Like Dementia, their rise to power over the individual is insidious, until one day they take control of us, stripping us of all humanity and choice.
Nominations for the National Diversity Awards 2019
“In Shropshire last year the DAA carried out a survey of experiences of people living with dementia and their unpaid carers. The areas of greatest concern were experiences of care in general practice and in hospitals.
So Shropshire Telford and Wrekin Dementia Action Alliance is concentrating on GP practices this year to get them to become dementia friendly, or at least start.
Here are some dos and don’ts for practice staff. No doubt you can add more…”
Today is the second Anniversary of my original Dementia diagnosis.
It has been a hard road to travel, with it’s ups and downs.
Not made any easier by the negative comments of some on social media and elsewhere, which continue today, in response to an newspaper article.
“I’ve yet to meet a patient or family affected by dementia who regard the diagnosis as a “gift”. An alien narrative about living with dementia is being promoted by some individuals and charities that is upsetting and offensive to those of us who work in the field and our patients.
Which was responded to as
I HATE the disease ,I hate what is done to my dad and how it’s split my family but I’m happy for folk that are able to make the most of it and admire those that can live in the moment .The public need to know both sides of the coin though.
My response being:
Thank you, a voice of reason, no one living with Dementia says it is a bed of roses, we are fed up with the stigma perpetuated by the media and some professionals…
…There is a life to lead within the reducing limits of this cruel disease, we need to be enabled not disabled by a system that only sees Dementia in the palliative stage…
…your experiences of Dementia are no less valid to ours, Dementia is a chronic terminal disease the same as Cancer Heart Failure etc, but people coping with those diseases are not questioned as we are…
…because that is all we are really doing – Coping. We do our best to get through each day, some of us try to encourage others to live within their limits, not to abuse the experiences of care partners such as yourself…
…All of us living with Dementia are so grateful for the sacrifices that our care partners such as yourself make often to the detriment of your own health, even if we are unable to express it.”
Whilst I try to show that there is a life to live after after a younger/earlier diagnosis, to offset the stigma of the media perceptions of Dementia, it is in no way intended to belittle the experiences of professionals or care partners who generally have a negative experience of Dementia in the end stage or Palliative stage as I refer to it.
It is because of my experiences of that stigma from the point of my diagnosis that I write articles to hopefully enable some who follow, receiving their diagnosis.
Nominations for the National Diversity Awards 2019
“A statistic haunts me as I search for a new care home in preparation for mum’s final move. On average, residents of care homes get only two minutes of social interaction with staff a day.
While this statistic is based on a sample of homes in England, I fear it sums up the quality of care in the UK. The randomised control study found that increasing interaction to 10 minutes a day improved residents’ wellbeing. Of course, 10 is better than two, but is 10 minutes enough?”
The shame of the sad events at the Mosque’s in Christchurch, New Zealand on Friday, underpin how society is becoming more divisive.
In the 21st Century, people have become media victims, where their looks, thoughts and actions are being controlled and manipulated by a media, hell bent on selling copies and profits to the detriment of all.
They present a perfect human being, through looks, employment, hobbies, relationships etc that leaves no room for all the differences that make us all human.
They preach intolerance of how we look and act which spreads into other aspects of society such as race, religion and disability, leading to the hate of that which is different to their perceptions.
Nostradamus predicted that a Third World War would come from the east and with the continued inequalities and intolerance in society it is not hard to imagine a time when those discriminated upon, turn against the haters.
Many civilisations such as the Romans, became preoccupied with looks and money to the detriment of those who didn’t meet society’s norms and those less able and look what happened to them.
Friday’s article The Times They Are A-Changin’ – Part 2was an attempt to redress the balance of the stigma of some professionals and care partners, that question the diagnosis of Dementia at a younger/earlier stage.
These experiences of those professionals and care partners are undoubtedly negative, who mainly experience the negative side of Dementia through the emotions and emotional responses of the person they care for in the Palliative stage.
But there are three main stages to Dementia, early, middle and Palliative, like Cancer which has 4. You do not hear comments that someone with stage 1 to 3 Cancer, doesn’t have cancer because they don’t look like they have Cancer, they still work, drive, speak at events, campaign etc.
As with any chronic terminal disease, the challenges of each stage, differ and increase through the stages.
It has never been the intention of people living with Dementia to say that the perceptions and experiences of professionals and care partners of the Palliative stage are wrong.
However, because all you see in the media is the Palliative stage of Dementia, as I know from my own experience, that narrative has a disabling effect upon diagnosis and there is a need to redress the balance to show that a diagnosis need not necessarily be
The beginning of the end, but the end of the beginning with an earlier diagnosis.
That there may be a life to live within the reducing limits of a diagnosis, when diagnosed at an earlier stage.
That we do however recognise and even fear the challenges of the Palliative stage of Dementia.
Nominations for the National Diversity Awards 2019
“I first met James McKillop back in 2001, not long before the publication of his book, ‘Opening Shutters, Opening Minds’. We shared a love of photography and had a similar sense of humour. It was James who introduced me to the Scottish Dementia Working Group (or Working Party as it was called then).”
Friday and Saturday passed unnoticed, even forgetting to post an article yesterday.
People living with the early stage of Dementia, may not look like they have Dementia but beneath the façade they put up are increasing challenges which we can still recognise even if we cannot recognise those challenges in a daily basis.
We can still recognise at times that we are not the person we once were and that the changes happening over time are not normal.
From childhood we develop life skills which become a normal part of daily life but when those skills begin to disappear and challenges increase, those changes are not normal.
Becoming reliant on technology and those around us is not a choice we make but a necessity thrust upon us by an insidious invisible disease.
This week was International Women’s Day, a day celebrating the true value of women.
For too long they have been seen as inferior yet they are the backbone to Society.
My Mother didn’t believe in the stereotypes as I was growing up, I had to learn to cook and sew, clean and washing etc.
As for many Men, wives become carers to their children, parents, husbands and partners, to the detriment of their own health
Skydiving
Anna Harrison, Rachel Niblock and Wendy Mitchell should have been Skydiving in aid of Young Dementia UK yesterday, however the weather caused it to be postponed.
Rachel Niblock’s next attempt will be this Friday, I am not sure when Wendy and Anna’s next attempt will be but probably next weekend.
In the meantime, there is still time to sponsor them. details on how to sponsor them is here
Nominations for the National Diversity Awards 2019
“… How I wish I had someone who could actually sit and do these things for me, or with me. I am understanding that it may be time to de-clutter massively ready for when I progress. Time to get a cleaner to help me keep my home clean and tidy.
In the meantime I will continue amidst the constant exhaustion, to give a voice for dementia when I can.“
