Category: Dementia

Dementia Diaries Meet Up Day 2

Following from yesterday, I woke early and once ready got a coffee and sat in the grounds before breakfast, it was a bit cool in the breeze but just right other than that.

It was so relaxing looking down toward the pond

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We all gathered for breakfast and after that, Wendy and I sat with Amanda to answer her research questions before the morning session started.

We heard from Fran Hamilton an Occupational Therapist and another Twitter friend I had not met before, who enjoys transcribing the Diaries talking about her experiences and emotions with the Diaries.

After Fran it was time for a “Dementia Diaries Live” performance of some of our diaries with Dory, Wayne and Shelagh, a new idea to bring the diaries to life, something I had done myself last month.

Philly took the final session about opportunities to influence, where the diaries can be used in a way to change peoples perceptions and their awareness of our lives with Dementia.

Then it was a lovely lunch. The food there is wonderful, prepared by the chefs with produce from the estate.

After lunch we were given labels to write a few words about our 2 days which we tied to a tree and then it was the group photo

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After that it was time to say our goodbyes, I got a photo with Peter Berry and his wife Teresa. Peter by the way reader does a weekly video on You Tube about his life with Dementia, now in its 59th week.

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This links to week 1 of Peter’s videos

Then it was time to wait for our taxi back to the station with Rachel.

We had time to wait so we all met up for coffee, Rachel checking that everyone made it to their trains and a last chance for a photo with Wendy and Dory.

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Rachel took us to the escalator for our train, we said our goodbyes and descended to the platform to await our train.

Of course the train was late and later still by the time we got to Sheffield, I left Wendy to wait for her connection and made my way home in a taxi.

It was a wonderful relaxing couple of days with friends old and new but over too soon.

All the time we were there we had left Dementia at the door waiting for our journeys home.

We could be ourselves and make mistakes without being judged, with no one to say “You Don’t Look Like You Have Dementia”

The Dementia Diaries family is truly a community and while we were at Woodbrooke, Dementia was left in the cold while we had a warm feeling of understanding and friendship.

Don’t forget reader to have a listen to some diaries at https://dementiadiaries.org/

Dementia Diaries Meet Up

Tuesday morning, the taxi came to take me to the Railway Station, the breeze as I left the house, a welcome relief from the heat of the last few weeks.

No surprise the train was late but I was able to join Wendy Mitchell for our journey to Birmingham for a Dementia Diaries Meet Up.

If you are not already aware reader, Dementia Diaries https://dementiadiaries.org/ is a website where people living with Dementia upload audio diaries about their lives which are available for the public to listen to.

It was good to catch up with Wendy and we had plenty of time as the train went slowly at times and we were late arriving at Birmingham New Street.

We made our way up the escalator to a smiling waving Rachel Niblock who had met us to guide us via taxi to Woodbrooke House.

Woodbrooke House was founded by George Cadbury in 1903 and is the only Quaker Study Centre in Europe, set in beautiful grounds next to the A38, although apart from some traffic noise you wouldn’t know you were near the centre of Birmingham.

We had some lunch catching up with friends and Twitter friends I hadn’t met before.

After introductions and housekeeping we were shown to our rooms which were lovely as were the staff, very helpful and then we were back for the main part of the afternoon.

We were introduced to Professor Amanda from Maryland USA who had joined us to do some research. Amanda spoke with us about Dementia Diaries, technology, how to better design technology for us and how it benefits us. Over the 2 days, Amanda would interview us all for her project to get our individual views.

After a break we talked about how we felt doing our first diaries and how to promote them further to get more people involved as there are only about 50 of us doing them at the moment.

Rachel then talked about her role as the “Editor”, how she listens to them all and how she finds them emotional at times. She talked about how there have been a few occasions when, for whatever reason she didn’t feel able to put a diary on the site and had contacted the diarist and how there had been an occasion when someone was obviously distressed and this had been followed up with the assistance of Philly Hare.

We all know Rachel and feel she is doing a fantastic job for us and we all trust her.

Wendy Mitchell said that the Dementia Diaries web site could become a valuable historic document.

The session over we had a quiet hour before Dinner, time to chat and relax before the evening Bonfire.

We all sat round the Bonfire for about 2 hours chatting, eating toasted marshmallows and singing songs with Rachel and Amanda doing a rendition of Let it Go from Frozen.

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As the fire died down, it was getting cool and time for some well deserved sleep.

Being in a different place that night some of us found it took time to finally drop off but sleep finally came and a new dawn followed.

 

Time, where does it go

Time, where does it go

I was catching up on emails this morning, when I realised we are in August.

What happened to July?

Time Doesn’t appear to have any meaning at the moment.

Days roll into days, weeks into weeks

For me, the memory of July is a blank

No blogs for several weeks, some partly written

Reliant on my diary and notes

To remind me of the things I have done

I was at the Global Disability Summit in London

I thought it was last week but its nearly 3 weeks ago

Most of the detail consigned to my notes

The memories of my time there return in short flashbacks

I went shopping with my wife on Saturday in M&S we had breakfast there,

On Monday we were in Cole Brothers for some lunch

I swore blind we were in M&S

How our Dementia’s play tricks on us.

The Angela Project – Improving the Diagnosis of Young Onset Dementia Study

I found out about my 6th research from a post on Facebook and I emailed Mary O’Malley at the University of Northampton to find out more.

“The Angela Project is dedicated to Angela who was diagnosed with dementia at 51 years of age. She had symptoms for 3 years before getting a confirmed diagnosis. Many other people experience delays like Angela.

Their aim is to improve diagnosis and post-diagnostic support for younger people living with dementia and their caregivers.”

Mary emailed me the usual consent form and information and I emailed the form back.

That done, Mary emailed me my participant number and a link to the questionaire, if I couldn’t use a computer, I could have done it by post.

The questionnaire, asking about my experiences from going to my GP to my diagnosis, were easy to understand and it took no more than 20 minutes.

There are 2 more questionnaires to do over the next few months, then it is done.

This is another example of how simple it is to take part in research, remember reader, the more we do the faster change will come.

So You Think You Have Disability Rights in the UK – Think Again

Well reader, you may have heard of the United Nations Human Rights Convention and the Convention on the Rights of Persons with Disabilities. You may of also heard of the UK Disability Discrimination Act and the UK Equality Act.

You may be surprised to learn reader, that none of these are not fully enforced in the UK, so lets have a look at what has been happening in recently.

Ageism widespread in UK, study finds

Ageism Hurts and it’s Discrimination

Need to use a wheelchair for a Benefits Assessment

Want to appeal a Benefits decision

Need to get a train:

TransPennine Express accused of ripping up disability discrimination legislation

Rail staff told not to help disabled passengers board if it makes train late

Or Perhaps fly:

Four airports found to be failing disabled passengers

Need to get a disability pass and not on benefits or have certain conditions

RailCardBlue Badge, CEA Card,

The new rules announced in January 2018, to make Dementia and Autism eligible for a Blue Badge have yet to be implemented in my area “but are out to discussion”

Need Post-Diagnosis Support, Services and Funding:

The Post Code Lottery

A third of people with dementia in England ‘not receiving full care’

Councils tighten reins on personalised care

Need Assisted Living, say goodbye to money and property

Mum has dementia and now Dad’s dead she will have to sell her home. Why?

Paying for Social Care. There are ways out of our care crisis, if only May had the guts to pick one,

Have Behavioural Issues, Hello BPSD:

Seniors In Pain Being Inappropriately Restrained

Antipsychotic drugs harm older people, let’s reduce their use

At the end We’re told we are a burden. No wonder disabled people fear assisted suicide

Do We Have A Right To A ‘Good Death’?,

Food Poverty

Doctors ordered to recognise the ‘human value’ of patients with dementia as part of a major overhaul of care

Disabled people losing their benefits a ‘scandal’ say campaigners

Why won’t ministers come clean about the impact of cuts on disabled people?

Thousands of disabled people failed by government’s ‘culture of indifference’, report finds

TUC Disabled Workers’ Conference: Government ‘has created hostile environment for disabled people’

Thousands of people with learning disabilities are “trapped” in institutional care and are having their “human rights routinely ignored”, MPs have heard.

Here’s why Human Rights in Healthcare Are Needed More Than Ever

UN denounces British government for failing to protect disabled peoples’ rights

Liam Fox’s Brexit trade bill set to crush disabled people

Talking to persons with disabilities you hear about how they lose support because they can speak at conferences, assessed as fit for work, because they can use social media and the other day someone told me that on more than one occasion, bus drivers have told them to walk instead of catching the bus for one stop to the supermarket, even though they cannot walk that far.

Then there are the perceptions of disabilities, the drooling hunched over wheelchair bound, incapacitated persons with the wrinkly hands, Dementia only affects the old, the old and disabled are a drain on the young and many more discriminating, denigrating comments .

Then there is Disability abuse, the name calling and labelling. The worst for a person with Dementia is “You don’t look like you have Dementia”

There is a slow change but as with the EU Withdrawl Bill, not everything is for the better.

There is now the Inquiry into dementia and disability launched by APPG on Dementia which may be a response to the UN to investigate Tory record on poverty and human rights or may be the experiences of others and myself have made me cynical.

In closing reader, whether Governments and Healthcare systems like it or not, rights based care for persons with disabilities is here to stay.

Care should be inclusive, rights based, equal between chronic diseases, with post-diagnosis support care and funding for the person and their carer/family.

We all need access to these things at some point in our lives, we pay our taxes and in return it is the duty of all to provide the care that we all need. If you are diagnosed with the 3 main causes of death in this country and other diseases, you shouldn’t be left without care or have to jump through hoops to access it.

The history of the 20th Century tells us that all appropriate inclusive care and support, services and funding should be available automatically, from the point of diagnosis upholding our rights in the process so that we never return to those dark days of disability abuses.

 

How many labels do you have ?

In today’s media driven world, we seem to be pigeonholed by labels of all descriptions to define who we are including labels discriminating by disease. How many labels do you think you have reader ?

We find ourselves in a combination of labels:

Male, female, ethnic origin

Short, tall, thin, fat

Skin, eye, hair colour,

Religion, heterosexual, LGBT,

Low, middle, upper class

Low, middle, degree level education

Occupation, hobbies, interests

Music, films, sport

Appearance, Accent

Healthy, unhealthy

Able, disabled

Mental health, physical health

to mention a few.

 

Disability benefits supposedly help you to live your life, once you do that they can be taken away, you may have learnt to live within your limitations but your label gets changed sending you back into a downward spiral.

With  BPSD (Behavioural and Psychological Symptoms of Dementia), chemical restraint is used “to protect” the person with Dementia and others instead of dealing with the cause, which in the UK could lead to being sectioned under the Mental Health Act to access extra funding, funding that should be available because of need not label.

The media portrays someone with Dementia as being in their 80’s or 90’s, incontinent, incoherent and with wrinkly hands, when in truth with Battens Disease, you can have a diagnosis of  Dementia from birth.

Many people are being diagnosed with some form of Dementia in their 20’s, 30’s, 40’s and 50’s, who with the right support and without chemical restraint can live their lives within the limits of their Dementia.

Society portrays someone with Cancer as a fighter and someone with Dementia as a sufferer but people with Dementia can fight to retain their abilities to a decreasing level as long as possible.

People with dementia fight to retain their identity, they don’t want pity, they want support and services to assist them and their carers/family not to be labelled negatively.

As you may have seen reader, for many reasons, we end up with many labels as we go through life.

Pigeonholing everyone by labels, leads to discrimination and negative perceptions.

This labelling starts with family, then at school, is influence by the media and peers and goes on through life.

At the end of the day we are all human beings who regardless of labels,  bleed the same colour and who have universal rights.

 

 

The Me Too Movement – Could there be something bigger

At the outset, let me say reader, that I totally agree with what #Me Too stands for.

Since it was begun in 2006 by Tarana Burke, Me Too has grown into a worldwide movement for universal equality for women and the end to sexual harassment.

But it could be bigger, I don’t know what it could be called, #One Voice, #Inclusion, #All together Now, I’l let you decide reader.

It may be the only way to bring about change, equality, rights and to ditch our labels

If we stop referring to issues as men’s, women’s, disability, poverty, equality, race, LBGT  et all and ditch the labels and just refer to specific issues that affect us all, speaking as one voice, six and a half billion of us.

It was reported recently that within 10 years, 99% of the worlds money will be owned by 1% of the worlds population, so instead of fighting separate campaigns for pay equality, funding of services, ending poverty et all, just have a campaign to end excessive pay, bonuses, pay offs and profits, inequality, discrimination and the enforcement of our rights et all.

After all we 99%ers are allowing them to accumulate their wealth through the ever increasing prices and costs that we pay, to promote inequality and discrimination and power over our lives.

It is reported that Cristiano Rolando will earn £73,000 per day at Juventus, that could feed 25,000 people in one of the poorer countries every day.

In the 2017 in the UK, the top 3 causes of death according to UK Government statistics were:

1: Dementia

2: Heart Disease

3:Cancer

Yet Dementia doesn’t receive the same post-diagnosis support, services and funding as other chronic diseases, also in end stage Dementia, you may be sectioned under the Mental Health Act to access funding, why isn’t funding universally available as with some other chronic diseases.

Chemical Restraint through the BPSD model (Behavioural and Psychological Symptoms of Dementia) and Involuntary Care are applied worldwide in Dementia. The symptoms are treated and rights of the person are ignored, instead of treating the cause and upholding our rights.

Research into diseases, looks for a cure, at the expense of the person and the profit of the drug companies. With Dementia and other diseases, how can you search for a cure when enough isn’t enough known about the cause and development of 100+ diseases under the Dementia Umbrella and other diseases.

How can a country provide Disability Benefits to help you live with your disability and then take them away because you are living with your disability.

Why is there torture, abuse, inequality, discrimination, pornification of society, image, sexual harassment and the many other issues that 99% of us face.

Continuing on the path we are on now, a 21st Century world of inequality, discrimination and labels will surely continue us on the path of a Mad Max, Dystopian future.

We have a right to a rights based future, where we are able to live our daily lives without fear, inequality and poverty, where respect and equality are the norm and we are all equal in all things.

May be it’s time men collectively grew a pair and joined with Me Too, making one voice, six and a half billion of us, to end inequality, abuse, discrimination, sexual harassment, et all, to end that Dystopian future looming over the horizon.

It’s time Governments and the 1% worldwide realised that everything in society must change and now be built upon our rights.

It’s time the six and a half billion stood with one voice, ditched the labels and said

Enough is Enough

 

The Importance of Making Submission’s to Consultations

It is important to take the opportunities to take part in consultations about our lives and services with Dementia or any other aspect of our lives for that matter.

It’s a bit like my Father told me, “If you don’t vote, you can’t complain”, taking part in consultations gives you a voice.

I suppose you could say that if we don’t speak out, how can anybody listen.

I’m not saying reader, that those that should take notice will listen, but as time goes on, the more people that take part in the Dementia debate, the louder our combined voice will be.

Being a member of your local DEEP UK group is a valuable way of having your voice heard. You may find a local group here.

From little acorns, do oak trees grow

I have taken part in 3 submissions this year.

In April, I took part in a telephone interview with the Alzheimer’s Society for their submission to the UK Prime Ministers Dementia 2020 Challenge.

In June, I made a written submission to the World Health Organisation’s consultation on Dementia Friendly Initiatives (DFI’s)

Last week, DEEP UK’s submission to the consultation for the new Sheffield Dementia Strategy and Pathway was published, which I took part in during April this year.

The new strategy once completed, I hope would be inclusive of our rights under the United Nations Human Rights convention and the Convention on the Rights of People with Disabilities (CRPD).

Ideally, it would include inclusive post-diagnosis support, rehabilitation, funding and services enabling people living with Dementia and their families/carers, to live their lives within the limitations of a persons Dementia, respecting our rights and equalities.

The DEEP UK submission includes Case Study 1, which was based on me and the full report, can be found here.

The more we are heard, the less we are ignored