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).“
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.
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.
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.
Alzheimer’s Society’s vision is a world without dementia. Until the day we find a cure, we will create a society where those affected by dementia are supported and accepted, able to live in their community without fear or prejudice.
Globally every three seconds someone develops dementia and internationally it is recognised as a severe health crisis. We know that more research is being conducted than ever before, more collaboration on policy, and more support, awareness and community action – change is happening, but is it enough?
Our Annual conference will shine a light on the scale of the problem, but will focus on how our actions, our collaborations, policies, and the research we undertake as individuals, builds through partnerships to organisation, community and national change for people with dementia, their carers and families.
Building on our call to take action
Alzheimer’s Society Annual Conference 2019, takes place over two days at the start of Dementia Action Week (20-26 May) at the Kia Oval, London. We have worked with people affected by dementia, putting their voices and experience at the forefront of our work, to pull together a jam-packed programme.
For many a diagnosis of dementia can feel like the end of their life, leading to feelings of social isolation and loneliness. We live in a society with a support system that has not yet responded to the scale of the challenge dementia presents, meaning people with dementia also face greater inequity and lack of access to the appropriate and affordable care and support they need and deserve.
Research can help us understand more about the diseases that cause dementia and provide evidence for how best to support people affected, but without health and social care systems fit to use this research and meet the needs of people with dementia, we will not make the progress urgently needed in the UK and beyond.
Together we are changing the landscape of dementia forever, and our conference unites those personally and professionally affected by dementia to focus on the latest progress we are making and the challenges for the future.
Key themes
• Supporting People affected by dementia and their carers
• Building a movement for change
• Research to transform care and discover new treatments
Key speakers:
Caroline Dinenage MP, Minister of State for Health and Social Care
Professor Steve Powis, National Medical Director NHS England
Professor Dave Sharp, UK DRI Care and Technology Associate Director, Imperial College
Suzanne Cahill, Author and Professor of Social Work and Social Policy, Trinity College Dublin
John O’Brien, Professor of Old Age Psychiatry, University of Cambridge
Julie Ogley, Incoming President of Association of Directors of Adult Social Services
It’s time to dust off your bowls and whip out your whisks – Cupcake Day is back! Whether you bake it or fake it, sign up today and we’ll send you out a free fundraising kit.
Sign upand receive your free fundraising kit in the post.
Simply decide when and where to host your Cupcake Day. Cupcake Day is 13 June 2019, but you can host yours on any day that suits you!
Start baking and/or buying delicious treats for your day (yes, faking is definitely allowed!) and raise as much dough as possible to help beat dementia.
What’s in your fundraising kit?
Posters to help you spread the word
Fundraising ideas and fun games to play on the day
A donation box and Gift Aid form (for the all-important ‘dough’)
Cake toppers and decorations
A selfie-frame to share your creations on social media
In the average time it takes to bake a batch of cakes, six people in the UK will develop dementia. It is now the leading cause of death in England and Wales, overtaking both cancer and heart disease.
Your Cupcake Day can help to fund pioneering research, crucial support services and vital care. By hosting your day, you are uniting with us in the fight against the UK’s biggest killer.
Until the day we find a cure, because of Cupcakers like you, Alzheimer’s Society can continue to be here for anyone affected by dementia – wherever they are, whatever they’re going through.
Cupcake Day has raised £2.7 million since 2016 – let’s make this year our biggest yet!
The Young Dementia Network would like to invite you to their second research event.
This event will provide an opportunity for people living with, or affected by, young onset dementia to connect with researchers and student researchers currently researching in the field of young onset dementia.
The focus of the day follows on from the research event we held last year where six topics for further research emerged. Young Dementia Network members have chosen three priorities
• Employment
• Health and social care education
• Family interventions (including children and young people)
We hope to secure funding to make this event free to attend but may have to charge up to £11 per person.
Monday 24 June 10.30am-4.00pm
Who will be attending:
• People living with young onset dementia
• Family members and carers
• Experienced researchers
• Early career researchers
• Junior researchers
Promote young onset dementia research
Consider three areas for further research
Develop partnerships and collaborations
Venue:
The Diamond
University of Sheffield
32 Ladygreave Road
Sheffield
S3 7RD
Places are strictly limited.
Please RSVP to express your interest in attending by Friday 31 May 2019 including any dietary requirements in your email. network@youngdementiauk.org
If you are a researcher and would like to present a poster that is relevant to young onset dementia, please let us know via email.
Poster presentations are limited to a maximum of 10.
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 Report2019.
ADI need more men to take part, by 10 May 2019 only 18% of completed surveys were by men.
The survey is now available in 25 languages with more to be added.
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.
Please encourage the men out there to take part as the last I heard only 20% of respondents were men.
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.
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.“
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.
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.
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.
People with a diagnosis of Alzheimer’s may not always experience memory loss as their first symptom of the disease, with younger people more likely to have problems with judgement, language or visual and spatial awareness than older people.
People living with dementia can have difficulties with vision and perception which causes them to misinterpret the world. The process of seeing is complicated and there are many points where things can go wrong.
Disturbances in vision and perception can cause emotional responses and even safety risks.
Visuospatial function refers to cognitive processes necessary to “identify, integrate, and analyze space and visual form, details, structure and spatial relations” in more than one dimension.
Visuospatial skills are needed for movement, depth and distance perception, and spatial navigation. Impaired visuospatial skills can result in, for example, poor driving ability because distances are not judged correctly or difficulty navigating in space such as bumping into things.
Visuospatial processing refers to the “ability to perceive, analyze, synthesize, manipulate and transform visual patterns and images”. Visuospatial working memory is involved in recalling and manipulating images to remain oriented in space and keep track of the location of moving objects.
Visual Awareness problems:
being less sensitive to differences in contrast, such as black and white, and contrast between objects and background
being less able to detect movement
changes to the visual field (how much you can see around the edge of your vision, while looking straight ahead)
being less able to detect different colours. For example, a person may have problems telling the difference between blue and purple
changes to how the pupil reacts to light
problems directing or changing gaze
problems with the recognition of objects, faces and colours
losing the ability to say what has been seen
double vision
problems with depth perception (judging the distance of objects from the person).
at its most simplistic it is an awareness of where your body is in relation to everything else, and there may also be a time factor involved (i.e what is likely to happen in the next few moments).
having trouble judging distances e.g. when going up and down steps
bumping into things
swerving to avoid door frames
difficulties reaching for things , such as a cup of tea or door handle
getting lost or disorientated, even in familiar environments.
A hallucination can involve seeing, hearing, smelling, feeling, tasting (or a combination of them all) something that isn’t there.
Hallucinations are caused by changes in the brain.
Hallucinations experienced by people with dementia can involve any of the senses, but are most often either visual (seeing something that isn’t really there) or auditory (hearing noises or voices that do not actually exist)
They seem real to the person experiencing them but cannot be verified by anyone else.
a visual hallucination could be seeing bugs crawling over the bed that aren’t actually there.
