Category: Dementia

Bank Holiday Musings – Good Friday

There is a debate around whether you can live well well the Dementia.

A year ago I would have said that you could live well but in the context of trying to offset the stigma of the media and society vision of the hunched over drooling Person with wrinkly hands.

My own experiences especially over the last few months confirm that I cannot live well but I can live within the reducing limits of my diagnosis.

It’s a bit like the debate about plastic.

The majority may want to stop the use of plastic straws to protect the environment but a minority need to use plastic straws for fluids and nutrition due to a disability, yet there is little informed debate on this issue or suggestion of practical alternatives.

There isn’t a right or wrong answer to the question of how people should live with a diagnosis of Dementia.

Experiences differ, people deal with challenges in a multitude of ways, some positively, some negatively.

There is no right or wrong way to live with a diagnosis of Dementia.

There are different stages, each with its own challenges, there is no one size fits all dogma as to how Dementia is experienced, nor should there be.

The personal and professional experiences of each stage of Dementia are valid and should be seen in the context of those individual stages.

People showing that you can live within the reducing limits of a diagnosis, do not do so to belittle the personal and professional experiences of the End or Palliative stage of Dementia.

Nor is it done to demean a person unable to live within those reducing limits.

From our personal experiences of the stigma and the negative narrative which disables people and their families when they are diagnosed, we try to show not that it is all a bed of roses but that it may not be  the beginning of the end, but it may be the end if the beginning.

At the end of the day it is not about right or wrong.

The negative experiences of care partners and professionals are important.

However, the lived experiences of those living with this cruel chronic disease should be respected, negative or positive.

Those that have a duty of care to us, should take those lived experiences along with their own to stop the stigma and the rights abuses.

To promote good quality post-diagnosis support whose only time limit is death for the person and those that care for us.

To develop a more enabling system that respects our rights and choices.

To treat us like human beings with feelings, hopes and fears.

Until such time as these things are achieved, people will continue to speak out about their lives experiences.

Until that time, we have been failed by those that claim to speak for us and abused by stigma, ignorance, rights abuses and a disabling system of care.



 

Hearing Test and Hyperacusis – Part 4

I am not due back at the Audiology Department yet so I thought I would take a look at Hyperacusis and how it can affect a person living with Dementia.

Dementia is generally but incorrectly associated with age and because of this, it is generally assumed, that people with Dementia may have trouble communicating due to hearing loss.

However, communication problems may also be due to intolerance of noise, that is to say that in a noisy environment, people living with Dementia may not be able to process all the sounds around them including background noise.

This may cause symptoms including : confusion, disorientation, inability to follow conversations or instructions or process information.

It’s a bit like closing one lane on a motorway, 3 lanes of information have to try to find a way through 2 lanes, switching from lane to lane.

The brain cannot process information fast enough and the signals cannot get from neuron to neuron efficiently as they are diverted around dead cells causing a backlog of information that may not be processed in the correct order.


Articles

How dementia changes the way you hear the world listen to the audio report about half way down.

Dementia-friendly environments: Noise levels

A discussion on the Alzheimer’s Society Talking Point Message Board from 2009  “Dementia and Hearing Problems”

Agnes Houston’s Booklet Think Dementia, Think Sensory

The Sounds of Dementia


Dementia Diaries

Agnes Houston – “MY HEARING HAS BEEN HEIGHTENED ALMOST TO THE POINT OF PAINFULNESS.”

Dory – DORY’S “AUDIOLOGY EXPERIENCE ‘IF I HADN’T HAS SAID I WOULD HAVE COME OUT WITH NOTHING”


Videos

Susan’s Story

Experience 12 Minutes In Alzheimer’s Dementia

Virtual Dementia


Previous Articles

Hearing Test and Hyperacusis – Part 1

Hearing Test and Hyperacusis – Part 2

Hearing Test and Hyperacusis – Part 3

 



 

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 1

Welcome to the 1at  newsletter from YODA.


Our home at Hanson Lane Enterprise Centre.

YODA1.1

Welcome to our first newsletter. Unbelievably it’s been a full twelve months since we first opened our doors on October 6th 2017.
It’s been an exciting time, with our meeting group steadily growing into a close-knit group of friends, supportive of each other, but eager to look beyond our Friday meetings. These plans include campaigning for improved local services, greater awareness of the unique experience that is living with the challenges of Young Onset Dementia and joining with other dementia support groups\organizations in the fight for better human rights and parity with other disability groups.

A major Surprise for us has been the growth of our Facebook page. When first launched by Irene Drummond we anticipated little more interest than from other local groups and a few national dementia charities. We had imagined that the lack of Young Onset support was merely a national problem. We were so wrong. Our online membership now includes those living as far apart as USA, Australia & Africa. These ties have sought to increase understanding between all nations and have strengthened our resolve to fight for our beliefs in the right to a fairer system for us all and how best to achieve these aims.

During our first year we have formed especially close bonds with Calderdale Staying Well Project, Alzheimer’s Society and Memory Lane Dementia-friendly Cafes. We have been involved in the planning for Dementia-friendly Sowerby Bridge and are now part of 3 Nations Dementia Working Group (3NDWG) which aims to afford those living with dementia the chance to take part in training and awareness opportunities on behalf of Alzheimer’s Society. As well as being available for Dementia Friends sessions we are now starting to roll out a series of talks specifically targeted at Young Onset awareness.


A great step forward regarding our rolling awareness program will be the production of a play, based on the stories of two Yorkshire couples’ experiences of Young Onset. It is called “Don’t Leave me Now” and is the work of award-winning playwright Brian Daniels.

YODA1.2


Plans for Our Second Year

We will be leading in the campaign to have an Admiral Nurse service introduced to Calderdale. Currently although we are in a health partnership with Huddersfield, Kirklees has a robust team of specialist dementia-care nurses to which the residents of Calderdale have no access., This service includes a team dedicated to the needs of those with young onset. This disparity needs to be addressed as this unmet need contravenes our human rights and we will be working closely with Dementia UK as well as other groups across Calderdale to correct this.

We will we working to encourage a more person-centred approach to dementia care, instead of the current one-size fits all approach. We will do this by continuing to present the human face of living with dementia and so break down traditional assumptions.

Better information and services are needed for all at the point of diagnosis. Most people when told that they have dementia are merely advised to organise their personal affairs. Only one third are directed to Alzheimer’s Society for appropriate follow on support. We aim to liaise between all medical professionals and the Society to ensure that basic information is supplied to all that it is possible to live positively with a dementia diagnosis.


Our core meeting group.

YODA1.3

YODA is an age-appropriate, inclusive weekly support group who come together in a safe, friendly and non-judgmental environment. People diagnosed with early onset dementia can meet others similarly affected where important information about the condition is shared with compassion and great enthusiasm. Carers are offered a valuable life-line which makes them feel less isolated, vulnerable and more appreciated for the valuable work that they do. The group enjoys an intimate, loyal, relaxing and very sociable atmosphere where everyone’s opinion is valued.

Receiving a diagnosis of dementia is devastating to any family, but YODA warmly welcomes and supports new members, who are potentially still reeling from the shock. YODA offers helpful, supportive and genuine friendship in the distressing days following diagnosis. Very quickly you appreciate that you are not alone on this journey. The ability to laugh again is possible as you embrace the group’s infectious sense of humor and form strong support networks within this group of like-minded individuals. And last, but by no means least, although you are joining a group nobody ever thought they would be part of, you are guaranteed a big hug from everyone else, just to reinforce the fact that you are not alone.

Jean Westacott.


Thanks to Alexis Harbottle for the group photo and the design of our new logo.

A variety of volunteer roles are available within our organization. Should you wish to help us in our vital work please contact Julie Hayden.

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2

YODA Facebook Page




 

ADI wants to hear what YOU think about Dementia!

ADI wants to hear what YOU think about Dementia!

Alzheimer’s Disease International (ADI) has commissioned the London School of Economics and Political Science (LSE) to help conduct the world’s largest survey on people’s attitudes to Dementia. The results will form the basis of their World Alzheimer Report 2019.

The survey will be available from:

15 April to 14 June 2019

The survey will only take around 10 minutes to complete and will be available in multiple languages. Please note that we will be adding more languages over the next two weeks. It will be predominantly multiple choice, accessible – available both online and offline – and is fully anonymous.

ADI wants to hear from:
  • The general public
  • Health and care professionals
  • People living with Dementia
  • Carers of people living with Dementia

Please visit www.alz.co.uk/research/world-report-2019 if you are interested in taking part and share the link far and wide!

The survey will only take 10 minutes of your time but completing it will benefit people living with dementia and the families all over the world.

This is the most important dementia-related survey that you will do this year.


If you know any groups or organisations who will promote the survey please email j.mcgowan@alz.co.uk for a toolkit, including social media assets and draft messages.


Thank you for your support, 

The ADI team



“The Twitter Use of People Living with Dementia” Study – Part 2

A year ago, I started “The Twitter Use of People Living with Dementia” study.

Catherine Talbot, a PhD student from the University of Exeter Medical School, travelled up from Exeter for the third interview for “The Twitter Use of People Living with Dementia” Study.

We began by chatting about how things had been for me over the last 6 months and then did the usual Cognitive Testing.

Catherine had prepared a set of questions for me to answer, which took about 10 minutes.

We then talked about some of my posts and my motivation for making them.

Then Catherine looked at Twitter Analytics and save some of the statistics from a few of my posts.

Whilst Catherine was doing that, I had a home baked chocolate Brownie, Catherine had made the day before (delicious Catherine) and I completed 2 questionnaires.

Then it was time for Catherine to leave and travel back to Exeter.

Amazing to think that it had only been 12 months since we first met, what I have done in that time and the changes I have faced.

I hope Catherine is successful in her research and continues working in the Dementia field as we need more researchers with an understanding of Dementia.



 

 

Sunday Musings – 14 April 2019

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.


This week I began Fundraising for Dementia UK to hopefully finally bring Admiral Nurses to Sheffield.

Please Donate here Thank You


I hope you have a good week reader and “Sunday Musings” will be back next Sunday.


Nominations for the National Diversity Awards 2019

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Image

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You can nominate here


Other Nominations

You can nominate here


Petitions

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

Petition – No more PIP Assessments for People with Life Long Disability or Conditions

Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP


Consultations

Consultation – Learning disability and autism training for health and care staff

Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

Investigating the impact of stigma on people living with dementia and carers: A questionnaire study PART 1

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers


Survey

Welcome to the Dementia 2020 Citizens’ Engagement Panel online Hub

Tell us your experience of living with Dementia

Sheffield CCG – Urgent Care Review 2019


Videos


Newsletters

Alzheimer Europe

LEAD Coalition

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2


Blog

“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…..

Wendy Mitchell’s blog titled Was this my last long walk……..?


New Resources

Young Dementia UK – A decision-making guide for GPs

Dementia words matter: A DEEP guideline on language about dementia



 

This Week on Dementia Diaries – 13 April 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.

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


This weeks Diaries include:

 JACQUI HAS BEEN COMMISSIONED TO DO SOME ART WORK FOR AN EXHIBITION

A WALK WAS PLANNED BUT THE WEATHER HAD OTHER IDEAS

DORY IS MOVED BY A PERFORMANCE OF MEMORIA AND HAS A MESSAGE FROM KAREN

RAE READS A POEM CALLED IN CHURCH

JACQUI HAS AN ADVENTURE WITH A TRAPPED BIRD.

PETER REFLECTS ON THE IMPORTANCE OF PURPOSE, AND WHY CYCLING IS BECOMING INCREASINGLY IMPORTANT FOR HIM.

THE HAPPY TANDEMER IS STILL HOPEFUL OF SEEING A KINGFISHER AMIDST A BUSY WEEK.

WAYNE REFLECTS ON A VISIT TO HOSPITAL.

JACQUI HAS MADE SOME GOOD CONTACTS TO HELP HER GET MORE INVOLVED WITH ARTS AND CRAFTS.

“THERE IS MUCH MORE TO LIFE THAN DEMENTIA” SAYS SHELAGH

CAROL IS THINKING ABOUT HOW TO HELP THOSE AROUND HER IN THE YEARS TO COME.

JULIE REFLECTS ON THE PLEASURES AND CHALLENGES OF HOLIDAYING WITH DEMENTIA.

MELVYN FEELS HONOURED TO BE WORKING WITH DEMENTIA ALLIES, AND WANTS TO SAY THANK YOU.

 


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.



 

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2

Welcome to the 2nd  newsletter from YODA. Since our last edition we have played host to a successful production of “Don’t Leave Me Now” by Brian Daniels.

YODA Facebook Page


December

YODA2.1

Just after the showing of the play I was lucky enough to be invited as a delegate for Dementia Alliance International (DAI) to a three-day conference in Brussels regarding Protection of Vulnerable Adults (POVA) legislation. It is so important for all organisations, large & small, to work together at every available opportunity towards our joint aims. Above are my colleagues, Howard Gordon & Kate Swaffer (CEO).


March

YODA2.2

In early March we embarked on our first group holiday together on the island of Anglesey. Unfortunately, the weather did not stay as kind as the above image suggests, but it provided us with a good opportunity to bond further as a group, rather than two snatched hours in our weekly meetings, which are never enough.

Dementia Services

In common with the rest of the rest of the UK, Calderdale currently finances all its dementia services under the label of “older people’s services.” Given that not everyone with dementia is elderly (the youngest person in UK diagnosed with Alzheimer’s Disease was in their late 20’s) this is clearly an inadequate system. We at YODA have already begun to work with our local commissioners in order to redress this balance. We are at the start of a series of meetings with the Calderdale Commissioning Group. Some changes are being put into immediate effect whilst others will happen over time. Watch this space for further news and we’ll keep you updated in further newsletters.


January

YODA2.3

We are now happy to announce that we are members of DEEP, which is an important network to empower people living with dementia. Together we will be a stronger force in influencing changes that make a real difference in the lives of those living with dementia, in particular, those living with young onset. February saw our 1st representation at a Yorkshire DEEP meeting in York. We look forward to many more.

Our involvement with DEEP enables to become Dementia Diarists, to which we have begun regular contributions. These are recordings of those living with dementia, giving others an opportunity to glimpse into our experiences as we navigate our way along this new journey.

YODA on Dementia Diaries


Dementia Friendly Communities

It is an important aim to ensure that the public at large become aware of all types of dementia and how best to enable both those with a diagnosis and their supporters to live to the maximum. We at YODA are strong promoters of this and endeavour to educate others at every opportunity. We have approached this in talks we have delivered to community groups; Dementia Friends awareness sessions delivered and are now taking part of a newly formed committee to make Calderdale a more dementia friendly borough. To this aim, we would encourage as many others living with dementia and their care partners to become as involved as possible in making this a reality. You are the lived experience experts in dementia. Truly dementia friendly communities are impossible without your valuable input. To coin a phrase regarding dementia support planning, “nothing about us without us.”

Coming Year

The coming year will see us working towards all the above projects as well as the establishment of a financial framework for YODA, thanks to help of our new treasurer Rachel Swaby. We will continue our association with Bradford University and their dementia studies programme.



 

Fundraising for Dementia UK in Sheffield

I am currently running a fundraiser on Facebook for Dementia UK.

Why, you may ask reade, did I choose Dementia UK.

In Sheffield UK where I live, the support for people living with Dementia and their families, is woefully short of other chronic terminal diseases.

There are currently just over 7,000 people living with Dementia in Sheffield according to the CCG which means that with a diagnosis rate of 2 thirds and including undiagnosed, there are ten to eleven thousand people living with Dementia in Sheffield, with the estimated diagnosis rate for under 65s in England in August 2018 at 40.7%, that figure may be higher.

When you add family members as carers, that figure increases significantly for the number of people that need access to Specialist Nurses.

Having worked in healthcare for nearly 20 years, I have seen the benefits of having access to specialist nursing and the cost benefit to the NHS and Local Authorities.

If you have cancer, there is a Macmillan Unit at the Northern General Hospital, with Macmillan Nurses who support people living with Cancer and their families.

If you have Heart Failure, a Stroke, Diabetes, a Stoma, Pain, etc there are Specialist Nurses to support the person and their family including whilst you are an inpatient at one of the Hospitals in Sheffield.

Until I retired after nearly 20 years in Healthcare, I had seen the wonderful things that these specialist Nurses provided from the point of diagnosis, but also how people living with Dementia were not supported or had access to any specialist Nurses.

Indeed, on getting my diagnosis of Dementia in March 2017, I received no support, services or assessments from the NHS or Local Authority in line with the NICE Guidelines or International Law under the United Nations Convention on the Rights of Persons with Disabilities, not forgetting that Dementia is not a Mental Health Disorder but a Cognitive Disability as defined by the UN and WHO under International Law.

If you are over 65 in Sheffield, you get 1 year at the Memory Service and then are left until you need the intervention of a Crisi Team, by which time it is too late to empower someone to live within the reducing limits of their diagnosis.

If you are under 65, you wait to access the Memory Service when you are 65 or the Crisis team.

Thanks to Young Dementia UK we now have a Young Onset Dementia Support Group in Sheffield  but support is something that the NHS and Local Authority should be providing in line with the NICE Guidelines or International Law under the United Nations Convention on the Rights of Persons with Disabilities

So reader I have set up this fundraiser to try and get Admiral Nurses established in Sheffield to support people living with Dementia and their families at home, in their community and when they are at a Hospital or Care Home setting.

You can read about my experiences here


Please Donate here Thank You


UN CRPD Article 25 states

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.



 

Sunday Musings – 07 April 2019

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

Image may contain: 1 person, indoorImage may contain: 1 person, indoorIMG_0034

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

Image

Image

Image

You can nominate here


Other Nominations

You can nominate here


Petitions

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

Petition – No more PIP Assessments for People with Life Long Disability or Conditions

Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP


Consultations

Consultation – Learning disability and autism training for health and care staff

Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

Investigating the impact of stigma on people living with dementia and carers: A questionnaire study PART 1

New General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers


Survey

Welcome to the Dementia 2020 Citizens’ Engagement Panel online Hub

Tell us your experience of living with Dementia

Sheffield CCG – Urgent Care Review 2019


Videos


Newsletters

Alzheimer Europe

LEAD Coalition


Blog

“The Alzheimer’s Society has their very welcome campaign: Fix Dementia Care. But where are they? Why do they not resource the Charter process?

Who in a position of influence and power is actually taking responsibility to fix dementia care in hospitals?

The evidence is out there. Dementia care in hospitals is lousy. It takes lives, not saves them.

NHSE…you design the system…where are you?

Commissioners…you buy the services…where are you?

Yet again, it is left to little old you and me, volunteers in a broken system, people living with dementia, carers, to cry out in desperation.

Help us fix dementia care! “

George Rook’s blog titled For crying out loud, fix dementia care in hospitals