This Week on Dementia Diaries – 15 June 2019

Dementia Diaries is a UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries. It serves as a public record and a personal archive that documents the views, reflections and day-to-day lives of people living with dementia, with the aim of prompting dialogue and changing attitudes.

Dementia Diaries Website

Who are we working with?

We are all part of the Dementia Engagement and Empowerment Project (DEEP). The Dementia Diaries initiative was designed by the non-profit communications agency On Our Radar (www.onourradar.org). It was launched by On Our Radar in January 2015 in partnership with Innovations in Dementia, Ownfone and Comic Relief, and was handed over to Innovations in Dementia in August 2016.

Phase 2 of the project is funded jointly by Comic Relief and BIG Lottery Fund.

A team from Leeds Beckett University was asked to evaluate the success of Dementia Diaries. A dementia-friendly summary of their findings is available here (pdf, opens in a new tab) or you can download the full report here (pdf, opens in a new tab).

The website provides the audio recording and a written transcript of each diary, you can volunteer to transcribe the audio diaries here


Featured

Dementia Diaries on BBC Springwatch

Nigel Hullah

This weeks Diaries include:

JACQUI IS UNHAPPY.

AGNES REPORTS FROM A BUSY SCOTTISH DEMENTIA AWARENESS WEEK

THE HAPPY TANDEMER IS HAVING A BUSY TIME.

AGNES LOOKS FORWARD TO HER STV BROADCAST WITH NANCY.

STEPHEN HAS ALMOST FINISHED HIS COPD REHAB.

AGNES’ NEW BOOK RESONATES WITH JACQUI.

STEPHEN HAS BATTENED DOWN THE HATCHES FOR THE WEEKEND.

AGNES THANKS STV FOR THEIR RECENT WORK TOGETHER.

DORY REFLECTS ON THE MEANING DEEP BRINGS TO HER LIFE.

AGNES REFLECTS ON HER PURPOSE IN LIFE.

WAYNE REFLECTS ON BEING CHALLENGED ABOUT HIS DEMENTIA.

AGNES IS OFF TO AN EVENT IN EDINBURGH – A PUBLIC INCONVENIENCE.

THE UNIVERSE HAS SENT AN IMPORTANT MESSAGE TO AGNES, AND TO ALL OF US.


Note for Professionals

You can use these Diaries as part of your Dementia Training.

As a courtesy, please email Rachel Niblock at Niblock@myid.org.uk to let her know that you will be using some of the Diaries, it helps when applying for funding in the future.

Reflections on 6 days at Woodbrooke

As I travel down to London in a wet and windy Friday, I find myself reflecting on the 6 days I have spent at Woodbrooke.

For me it is my version of Wendy Mitchell’s Keswick, a place of respite from the world of Dementia.

It’s an opportunity to leave Dementia at the door, to start each day in silence at the Quaker meetings, silently reflecting, to sit in the gardens enjoying the peace and bird song.

It is also a form of respite not just for me but for family as well.

It is important to remember that family get the diagnosis as well, roles within relationships change, new challenges and frustrations appear over time, anger and sadness can produce its own challenges.

We are still the same person the day after a diagnosis as the day before, over time we change outwardly but inside we are still the same person, it is just there is a physical change to our brains, slowly shrinking to about a third of its size.

Gradually over time, more and more decisions are made for us not with us, the gradual belief that it is not appropriate for us to do certain things.

Yet we may still want to go to a , continue taking part in an activity, with a hobby, church service/Quaker meeting.

There is a real danger that by denying a person their right to continue doing the things that they enjoy, will have a negative effect on their mental health.

As a recent social media suggested, may be sometimes it is the embarrassment of those around us rather than our perceived abilities that stops us doing those things.

As this chronic terminal disease has progressed, we may lose the ability to express our unmet needs.

Imagine reader, someone coming up to you in the street for directions, you only speak English and they can only speak say Russian.

They know exactly what they are asking you but the words are in Russian.

You do not understand Russian and with the best intentions you try to work out what they are saying and they become frustrated.

You could work with them, Google for images of places of interest, Google Maps or Google Translate or other alternative ways of communicating.

In fact you take the easier option and make the decision to point left assuming that is the direction they wish to take, when in fact where they need to go is right.

Just a simple example of making a decision for, not with, ignoring an unmet need of a person for the benefit of yourself.

It has certainly been beneficial spending time there and I will be back there soon, if only for a couple of days.

As things are progressing, it is becoming more important to take time out, it is not a miracle cure but for me it can help at this time.

It may be a little like King Canute trying to stop the sea encroaching on the beach, it is inevitable and I suppose that one day the tide of Dementia will win the battle.

But rather than being sat in a chair as Canute did, I will try to stem the tide of Dementia for as long as I can.

To quote my friend Chris Roberts I may have Dementia but it doesn’t have me… yet.

Part 8 -The RADAR Alzheimer’s Research Study.

Recently I was back at the Royal Hallamshire, Clinical Research facility for the final time for the RADAR research study.

The first stop was for an MRI.

I had one at the beginning of the study and was now having a second one to compare to see if there had been any changes, positive or negative, in the structure of my brain during the study, which took about an hour.

I wore noise cancelling headphones as the machine is quite noisy and a couple of blankets as the room isn’t very warm and I was feeling cold that day, even though it was warm outside.

Once the MRI was completed, we made our way in the lift to the Clinical Research Facility.

My Daughter Evelyn and I were met by Grace the Research Nurse in Reception and we went through to meet my Neurologist.

Grace counted the tablets I had been given last time to check I hadn’t missed any.

Blood Pressure and Bloods taken, we went through the usual questions about how I had been and any changes we had noticed.

My Neurologist did some additional tests as the visual problems I have had for sometime are becoming more of an issue and she is now considering whether in addition to Alzheimer’s I now have Posterior Cortical Atrophy and or Lewy Body, so more test to come in the future.

I then did the ubiquitous MMSE (Mini Mental State Exam) a snapshot of a point in time, the results of which are dependent on how good a day you are having.

I left the room so that they could talk to Evelyn and then we were done and it was back home in a taxi.

Writing this days after the event I have forgotten alot of the detail, it was a long day, about 4 hours in the end.

It was a simple Study to take part in, no Frankenstein Complex.

And thank you to everyone at the Clinical Research facility for making it a pleasant experience.

I would recommend anyone that is able to take part in Research to do so.


I don’t do it for myself, it may be too late for me, but for my Children, Grandchildren and those that follow there is a chance however small that one day a study I take part in will lead to better understanding and treatments for Dementia

 

 

 

A Drier Morning at Woodbrooke

There had been plenty of rain overnight, but the rain stopped and started all morning.

After breakfast and checking out of our rooms,  we started with a Mindfulness session with Agnes.

The mornings session started with a debate around various questions, I forgot to make notes but I think that after the debate, there was something about Change Theory and a possible project for the Pioneers Group, the detail long lost.

It is hoped that the Dementia Enquirers project puts people living with Dementia in the driving seat of Dementia research, as Tony Husband’s cartoon below depicts.

DementiaEnquiirers

At then end of the meeting, there was time for one last group photo:

DE120619.jpeg

Once lunch was over, we said our goodbyes and we bundled into taxis to await our trains, to different parts of the country, at the station.

Sadly, Mr Dementia was waiting at the door and had started playing his tricks.

At the escalator, dealing with the steps with their parallel lines and moving was a challenge.

Image result for escalator steps

Trains were delayed “due to a car hitting a bridge” but I eventually made it back to a wet Sheffield where our puppies were waiting impatiently for my return.

Reflections on 6 days at Woodbrooke

Dementia Alliance International – Side Event 13 June 2019 at the 12th Conference Of State Parties (CoSP) on the Convention On the Rights of Persons with Disabilities (CRPD) at the United Nations in New York

” Dementia Alliance International is pleased to announce we have been accepted to host a Side Event at the upcoming 12th Conference Of State Parties (CoSP) on the Convention On the Rights of Persons with Disabilities (CRPD) at the United Nations in New York on June 13, 2019.

We are honoured to have a number of co hosts supporting this event, and to be supported by the United Nations and World Health Organisation, as well as the Australian government. “


The side event is a significant step forward in the representation of people living with Dementia at the highest level.

Dementia should no longer be seen primarily as a mental health condition, rather that mental health problems manifest as in the later stages of the disease, as with Cancer Heart Failure, Stroke and other Chronic Terminal Diseases.

The United Nations has reframed Dementia as a Cognitive Disability

In a BMJ Article:

“Reframing dementia means presenting dementia to the patient as a disability that can be accommodated and emphasising the persistent abilities”

In the Australian Journal of Dementia Care, Kate Swaffer writes

The United Nations, through the CRPD Committee, WHO Dementia Committee and International Law via the UN CRPD has also brought forward significant universal rights to people living with Disabilities including people living with Dementia.


Dementia: the leading cause of disability

DAI Side-event during 12th Session of the Conference of States Parties to the UN CRPD

” In 2019, the Dementia Alliance International (DAI) is celebrating 5 years of existence, and at this Side Event, we recognise the progress that has been made by people with dementia in the advancement of the rights of persons with dementia, as persons living with acquired cognitive disabilities.

Through the side-event, DAI aims to highlight the progress made towards claiming their rights as persons with cognitive disabilities over the past 5+ years, aiming to highlight dementia as a disability, and identify areas of further collaboration between the members of DAI and its international partners and all relevant stakeholders, including United Nations agencies.

The overarching theme is of social inclusion and health, which are two of the determinants of well-being, both of which are being systematically denied to people with dementia all around the world, including in the developed countries.

We will hear from an eminent list of speakers, on the rights of persons with any type of disability, including dementia, to full and equal access to the CRPD, and specifically on the right to rehabilitation and to Universal Health Care.  “


The event has now finished but you can watch a recording here


Speakers:

They are honoured to have Mrs. Catalina Devandas Aguilar, the UN Special Rapporteur on the rights of persons with disabilities to open the Side Event.

Other speakers will discuss the relevance of their work to Dementia as a disability; e.g. Bethany Browne from Human Rights Watch will discuss the abuse through chemical restraint of people with Dementia living in USA nursing homes, from the Human Rights Watch report, “They Want Docile.”

Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the rights of persons with disabilities: opening the Side Event

Christine Thelker, DAI Board Member:“Dementia as a disability”

Bethany Brown, Researcher, Older People’s Rights, Disability Rights Division, Human Rights Watch: “Violations of the rights of older people with dementia”

Arlene Pietranton, American Speech-Language-Hearing Association: “Rehabilitation for dementia and aphasia”

Mr. Antony Duttine, Regional Advisor in disabilities and rehabilitation, Pan American Health Organization/World Health Organisation (PAHO/WHO): “Quality Rights” 

Jan Monsbakken, Global Rehabilitation Alliance: “The Rights to Rehabilitation for All”

Kate Swaffer, Dementia Alliance International, Chair/CEO: Closing remarks


The side event is a significant step forward in the representation of people living with Dementia at the highest level.

The United Nations, through the CRPD Committee, WHO Dementia Committee and International Law via the UN CRPD has brought forward significant

Heavy Rain at Woodbrooke

Overnight it rained and rained and …

Tuesday brought a chilly wet morning with the rain continuing but unable to spoil the peace.

It’s was a peaceful morning, chatting to one of the volunteers and just sitting in the garden.

Philly Hare and I spent some time putting up while Rachael Litherland got the room ready before everyone arrived before lunch.

After lunch, we gathered in the Art room to start the Dementia Enquirers meeting.

If you have not heard about Dementia Enquirers reader, it is a project putting people living with Dementia in the driving seat of research.

Too often, people living with Dementia are seen as participants of research and researchers may not understand that people living with Dementia can be involved in the design, development, running and reporting of research, something this project aims to change.

The afternoon was spent, deciding which applications for research funding from DEEP groups should be recommended for funding, the National Lottery having the final say.

The decision making process began slowly by we soon got into the swing of it,accompanied by the crack of Philly’s metaphorical whip.

That evening from around 6pm we spent time with members of the advisory group discussion ssinf different aspects of the project.

It was a late finish to the day, after the Epilogue , I had an online meeting at 10:39pm which went on until past midnight.

Day 6

Petition – Pay Carers an Allowance Equivalent to a Fulltime Job at the National Living Wage – Finishes 19 June 2019

Petition – Pay Carers an Allowance Equivalent to a Fulltime Job at the National Living Wage – Finishes 19 June 2019

Paying unpaid carers would safeguard those requiring care making it a financially viable option for friends and family to look after those they love, Reducing pressure on 999 services and the NHS. Saving vast amounts of money per person. The carer who provides continuity in care is often forgotten.

Primary carers currently receive £1.85 an hour which is £64.60 a week, £3359 a year.

There are over 6,000,000 carers in the UK and 1.25 Million people provide unpaid care for more than 50 hours per week (NHS survey of carers 2009/2010; Census 2001, Office for National Statistics) Carers for people with dementia alone save the UK over £8 Billion per annum. 72% of carers are worse off financially as a result of becoming a carer and struggle to make ends meet (Carers UK 2008)

This is a national disgrace!

 

Please sign this Petition



 

Dementia Alliance International – Membership – Peer to Peer Support and Information for People with a Medically Confirmed Diagnosis of Dementia

Dementia Alliance International – Peer-to-peer support groups
Dementia Alliance International (DAI), whose global membership is exclusively for people with a medically confirmed diagnosis of any type of dementia, continues to work on claiming Human Rights for all people with dementia.
However, since the World Health Organisation Global action plan on the public health response to dementia 2017-2025 was unanimously adopted, DAI members continue to report that little has changed for people facing a new diagnosis of dementia.

DAI therefore implores governments and organisations to collaborate and co-operate with each other towards ensuring the rights of people with dementia are recognised and that changes relate to real life support and services.

DAI provides online support through cafes, peer-to-peer support groups, regular blogs and educational webinars. Chair, CEO and Co-founder of DAI, Kate Swaffer, says: “unfortunately, many DAI members continue to report the DAI services are often the only support they receive, and ADI, ADI members and especially governments have the potential to ensure this changes”.
The World Health Organisation states, “Dementia is one of the major causes of disability and dependency among older people worldwide”, and we therefore need a new pathway of support to include disability support and assessment, and support including Community Based Rehabilitation.

As founding members of the Global Rehabilitation Alliance, and Observer Members of the International Disability Alliance, DAI continues the pursuit of a disability rights-based approach to dementia, and they call on others to join them.
DAI hosts monthly educational webinars, attended by not only by their members and their families and friends, but by professionals working in the sector.

The webinars cover topics such as driving and dementia, sex and intimacy, living more positively with dementia, dementia and rehabilitation as well as hosting an online art exhibition during World Alzheimer’s Month.

These types of activities positively support members to live with more purpose and allow for participation, without the need to travel, sometimes difficult for people with dementia following a diagnosis.
During World Alzheimer’s Month in 2018, DAI hosted a daily blog series themed “Hellomynameis.”
These was a series of written or video stories of members living with dementia and have continued on as a monthly blog.
This series was not only informative and engaging, it led to dementia consultants and service providers using them in some of their training, to ensure care staff better understand the lived experiences of dementia.

It was dedicated to the voices of people with dementia, where members shared their personal stories of being diagnosed with dementia.

The hope is that these stories bring hope to others facing dementia, and that in sharing these stories they collectively support, inspire and educate about the negative and positive realities of living dementia.
The #Hello blog series was inspired by the late Dr Richard Taylor, one of DAI’s co-founders, who was once asked, “What should I say to a person with dementia?”

He answered by saying, “Try Hello.”

Dementia Alliance International – Membership form

Sun and Rain at Woodbrooke

The sun was up with the dawn chorus ushering in day 4 at Woodbrooke

Over breakfast the discussion continued on the course content over the weekend, the lady I forget her name, still feeling the same but she was checking out this morning and then off to visit family before returning to Australia.

After breakfast I went to the library to read some of the Quaker pamphlets dating back to 1654, some written by George Fox, sadly to the sound of the Sycamore tree being felled across the car park.

The challenge of reading as you may know reader, is something I have to deal with, moving words, following text/lines etc but it came with the the challenge of the words of the day, some with different spellings and s replaced by f.

However, it was a fascinating insight into a world so removed from the social media, image orientated world we live in now.

After lunch the sun was out and I spent time in the garden but the clouds were beginning to build up.

Philly and Rachael from DEEP arrived in the afternoon along with Tom Shakespeare from the Advisory Group in the evening.

Once the rain started in the afternoon it didn’t want to stop but it brought a new rhythm to the garden.

After attending the Epilogue, it was time for bed.

Day 5

A Mixed Day at Woodbrooke

A Mixed Day at Woodbrooke

After yesterday’s blog was published, 3 events happened.

In the first I misread the course timetable and ended up missing the afternoon session, it wasn’t until the session was nearly over that I realised my mistake.

The second was struggling with a tap.

Having washed my hands, I couldn’t work out how to turn the tap off, turning it left and right, pushing it down, pulling it up, so frustrating.

I gave up and I dried my hands to go and seek assistance, but as I turned to leave, it turned itself off.

This was nonetheless a surprise yet a relief at the same time.

The third was that the rain stopped and the sun came out with blue sky, which had been absent since I set off on Friday, to brighten the evening sky.

The sunshine continued Sunday morning and slowly cleared the dew from the lawn.

There was some sad news in that a Sycamore tree at the entrance to Woodbrooke is to be cut down tomorrow and an Ash tree adjacent to Holland House is to be cut down next Monday.

They are showing signs that they are at risk of falling, maybe dating back to the time of George Cadbury and Woodbrooke becoming a Quaker study centre, hopefully making way for new trees to witness the next hundred years or so of Woodbrooke history.

It took a while to process the evening session of the course on Saturday.

The presentation, usually given to military personnel and shortened to fit the time constraints of the session was quite unsettling.

With its telling of a gang rape and it’s resolution followed later in the presentation by some unrelated images which were inappropriately presented with no warning of their content.

The session ended subdued and it was left to the Epilogue to lift the mood.

It include a passage from St Paul followed by a translation of the same passage from the Aramaic text, the same passage presented in two completely differing ways.

The first session on Sunday morning was quite a dark affair, which didn’t appear to embrace the sensitivities of the group.

Understandably, the discussion over the story of a woman gang raped by 14 men was quite emotional and my mood did not lift.

I am still unsure as to the relevance of the story, being an event some 34 years ago and it’s resolution, in view of today’s social media driven world.

As I sat in the garden with my coffee, I felt as I once did in those dark days after my diagnosis and took the decision not to return for the final session.

With the warmth of the sun and the aid of Beethoven and Mahler through my headphones, my mood lifted and peace returned.

At supper, I spoke to someone else that had been on the course and she was, in her own words, “quite disturbed” by those two sessions.

So not Mr Dementia playing tricks on me, my responses to those two sessions were real, evidence that feelings are real and lasting for people living with Dementia.

I’m glad I did the course although I wasn’t expecting the rollercoaster of emotions it brought.

Was it Spiritual, I’m not sure.

Maybe naïve in thinking “Spiritual Activism” was to be a calmer more subdued topic.

Time will tell if I have learnt anything but that wasn’t the point.

To live with Dementia and take on a challenge which in the days before Dementia wouldn’t have needed a second thought, was the aim.

As the rain begins to fall here, I finish with this note.

As the Channel 4 programme 9pm Wednesday evening will also show, there maybe life after a diagnosis, the possibility to take on new challenges or continue doing sone of the things we have done before, within a persons abilities where appropriate.

A diagnosis may not be the beginning of the end but the end of the beginning.

In @Seeds of Contemplation” Thomas Merton wrote:

“The problem of sanctity is finding out who I am…

If I never become what I am meant to be

But always remain what I am not

I shall spend my whole life contradicting myself

By being at once something and nothing

A life that lives and is dead”

Day 4