Following on from the World Alzheimer’s Month series of #Hello blogs, we continue to share our members stories. Peter Berry from the UK has been doing a weekly video podcast about his experience of living with dmentia, now up to his 70th. This one was focuses on the difficulties of a diagnosis, and stigma. Thank you Peter for giving us permission to share your 25th video here.
Three of us with dementia (Peter Mittler, Howard Gordon and Nigel Hullah) sent in questions but they were not chosen for discussion.
I was diagnosed with Alzheimer’s Disease 12 years ago but I am still me. Much worse than my Alzheimer’s is severe deafness which makes it difficult for me to use the phone or hear what the person next to me in a noisy restaurant is saying.
I have worked in the disability field since the 1950, first as an NHS clinical psychologist and then as a university teacher in psychology and education and researcher in the social sciences. I have also been active in the British Psychological Society, most recently in my new role as ‘a psychologist living with dementia’.
My priority for some years has been a commitment to human rights and social justice for all disabled people, particularly those living with Alzheimer’s and other dementias.
I started working with International Disabled Persons Organisations in in 1979 when the UN was taking advice on the 1981 International Year of Disabled Persons and UNESCO was launching a 5-year programme on what we would now call inclusive education.
My most vivid memories come from the founders of the disability movement who insisted on co-production of policy with ministers and officials. Most of the pioneers were men in wheelchairs demanding access to jobs, buildings and documents. The strapline of ‘Nothing About Us Without Us’ was launched in the 60s and has now been extended to 50 million people living with dementia world-wide.
Life in Alzheimerland is very different.
Most professionals are respected as experts. Conferences are polite and collegial, despite evidence of deteriorating services and now an NHS and care system on its knees for human and material resources.
The older we get, the higher the risk of one or more age-related illnesses. Some are more at risk than others: it helps to be married and have a family; your risk is lower if you lead an active life, meet friends, eat healthy foods, go easy on the alcohol and take a lot of exercise because the brain needs blood to activate neurons to make connections with other cells. It also helps if you’ve had a good education and speak a second language.
Being given a diagnosis of dementia can be a traumatic experience.
Some people have cried for weeks or can’t sleep for worry about what is to become of them. Others are asked to hand over their driving licenses or to stop work and take out a Power of Attorney for when they lose capacity. Many have reported that friends and neighbours cross the street to avoid them because they don’t know what to say. The fear and stigma around dementia leads to social isolation and from there to apathy and depression.
Most Board members are under 65, as are all those who have written books about their experiences – the latest is Wendy Mitchell’s highly readable Someone I used to Know (2017).
Most of the advocacy has come from people with younger onset dementia – around ten percent of the total.
Britain will soon have a million people living with dementia; many more are directly affected by dementia, including care partners and relatives. There will be 75 million by 2030 world-wide and we are already being left behind in the UN’s 17 Sustainable Development Goals. Much of the increase will take place in Low and Middle-Income Countries where diagnosis is a rarity.
People living with Alzheimer’s don’t usually think of themselves as disabled or as grey panthers. They want a quiet life and to follow their interests.
Action is needed because the OECD has stated that ‘people living with dementia receive the worst care in the developed world’ (2015).
Alzheimer’s Disease International and the World Health Organisation has estimated that one person with dementia is being diagnosed with dementia every three seconds. The cost of dementia is now $1 trillion.
The Alzheimer’s Society UK used data collected from NHS Trusts under the Freedom of Information Act to establish that the chances of falling while in a general hospital are twice as large as in other over 65s and that thousands are being discharged between 11pm and 7am because the beds are needed by other patients. In this country diagnostic rates vary considerably even within a conurbation the size of Manchester but are much lower in Low and Middle Income countries where the condition is often seen as normal ageing.
Although the United Nations Human Rights Bodies recognize dementia as a cognitive disability, there is little evidence that people with dementia are being consulted or involved by their governments in planning services when a country is implementing the CRPD, as required in CRPD Article 4.3. This amounts to systemic – if unintentional – discrimination by their government.
Over a year ago, the World Health Organisation launched its Global Action Plan for a Public Health Policy in Dementia, together with a parallel plan for Mental Health. Unfortunately, very few governments have taken any action to use it – and that includes NHS England and Dementia United.
To end on a positive note: here are the recommendations for a Rehabilitation Pathway made by Dementia Alliance International to the CRPD Committee in 2016.
Rehabilitation should begin at the point of diagnosis when the doctor giving the diagnosis introduces a home visitor who will visit the person or the care couple as the link to community supports and services.
The home visitor can be a health or social care professional who visits the care couple to discuss their priorities. Their task is to try to arrange support from health and social care from the voluntary sector. These might include an occupational therapist, physiotherapist, speech and language therapist, clinical psychologist and social worker: it depends on the needs of the care couple and other members of the household.
Not at all: something like this exists in some parts of the country.
These are islands of excellence in a sea of poor or non-existent post-diagnostic support.
 Professor Peter Mittler, CBE, FRSA, MA, M.Ed, Ph.D (Psychology); Clinical Psychologist 1954-1963; Lecturer in Developmental and Abnormal Psychology, Birkbeck College, University of London (1963-1968); Founding Director Hester Adrian Research Centre for the Study of Learning Processes in the Mentally Handicapped University of Manchester (1968-1992); Professor of Education, Head of School of Education and Dean of the Faculty of Education, University of Manchester (1991-1995). Currently Hon Research Fellow Division of Nursing, Midwifery and Social Work in the Faculty of Sustainability, Education, Environment and Development, University of Manchester.
The #DAI#Hello#WAM2018 blog series have been very popular, hence we intend to continue them at least weekly for some time to come. We have many new members joining DAI each week now, and want to continue to give everyone with dementia a platform to have a voice, if they want one.
As is it important to talk about progress (or not), today, therefore we begin October with an article by DAI member Professor Peter Mittler. Peter says #Hello with a reflections on our human rights.
Peter has worked tirelessly for most of his professional life for the rights for people with disabilities, and for the last few years has devoted his attention to the rights of people with dementia, sharing his extensive expertise and knowledge, and is friendship and commitment to the 50 million people currently living with dementia. Thank you Peter. We are humbled and honoured to have Peter as a member, and thank him for his continued focus on the rights of us all; DAI is deeply indebted to you.
Hello, my name is Peter Mittler
MY REFLECTIONS ON OUR HUMAN RIGHTS
My human rights journey began shortly before my 7thbirthday when Hitler’s army marched into Austria and street thugs wearing brown shirts and swastikas arrested thousands of Jews, closed their shops and businesses and stopped me and other Jewish children going to school.
My story is told at length in a memoior, Think Global Act Local: A Personal Journey (2010). It now needs a new title: Act Local Think Global because the responsibility for taking action on human rights rests with each and every one of us.
The United Nations Organisation was founded in the wake of the Holocaust and the loss of hundreds of million lives in World War 2. Under the inspirational leadership of Eleonor Roosevelt, the UN produced the Universal Declaration of Human Rights in 1948 for everyone on the planet. That Declaration provides firm foundations for the legally binding Conventions on the rights of specific groups who were experiencing inequalities and discrimination: women, children, ethnic minorities and last but not least disabled people.
Although the UN has officially recognised people living with dementia as persons with cognitive disabilities, governments have not included us in the implementation of the CRPD or other Conventions. This is nothing short of systemic discrimination which will only end if we insist and persist in the demand for our human rights on the same basis as people with other disabilities.
The UN supports us but our governments continue to ignore us. Dementia Alliance International and Alzheimer’s Disease International helped inform the World Health Organisation’s Global Action Plan for a Public Health Policy in Dementia (2017). It is a good plan but it is not clearly based on the General Principles and substantive Articles of the CRPD. Furthermore, very few governments have acted on it.
There now needs to be a campaign to use the CRPD in planning supports and services in the wider context of the UN’s Action 2030 Sustainable Development Goals.
On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.
Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.
On Day 29 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Christine Thelker from Canada. Christine is an incredibly active advocate and DAI member, and supports one of our CA/USA support group. She was also featured in our online Art Exhibition this week!
Thank you Christine for sharing your story by saying hello here, and for all that you do for DAI and others. We love you too. Special thanks also to Mike Belleville for finalising the production of Christine’s video, and upoading it into our YouTube Channel.
On Day 13 of the #DAI#WAM2018#Hello my name is blog series, we feature DAI member Dennis Frost from near Kiama in NSW. Dennis speaks to us candidly, sharing his story of being diagnosed with a younger onset dementia, and the advice given to give up work, and that he may have a only few or maybe up to 20 years to live! It is a common story, as this series is highlighting.
Dennis also talks about the stigma, and the reactions of others, and that the stigma and often hidden social barriers are often worse then the dementia. He also shares how meeting others with dementia has helped him to live more productively and positively with dementia. Thank yo Dennis. for sharing your story with us.
On day eight of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our USA members stories of living with dementia, and the presentation she made on Day two of the ADI confernce recently with her amazing son Rhys Dalton.
Thank you Maria and Rhys for allowing DAI to publish this during September to help us raise awareness. Together with Rhy’s fiance Kayla, you are an awesome team, and we love and are inspired daily by you all.
On day two of World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of his life and living with dementia. Thank you Howard, for allowing us to share it here, and for and actively being involved in one of our peer to peer support groups, as well as representing DAI as an advocate in the UK.
Hello, my name is Howard Gordon.
I worked in healthcare for nearly 20 years but at the beginning of 2014, I began to notice changes; I was forgetting regular tasks, getting lost in familiar places, getting confused and doing things out of character.
I moved from Acute Medicine to Outpatients in 2015 as I realised I could no longer safely work in a ward based environment but the challenges continued to grow.
Although I had plenty of Dementia training over the years, it wasn’t until I saw a television programme about Chris Roberts and his family that alarm bells rang.
I went to my GP and she did blood tests including checking my Thyroid but when I went back the next week the tests were clear and after cognitive testing it was her opinion that I may have Alzheimer’s.
Three months later I saw a Neurologist and over the next 6 months I had MRI and SPECT scans, more blood tests and four and a half hours of Neuropsycholgical testing and during this time my Fathers cancer came back after 26 years.
In March 2017 came the diagnosis, younger onset Alzheimer’s and Frontotemporal Dementia, two leaflets, some information about research, instructions not to drive and to go home and make my Will and Power of Attorney.
As we walked out of the room there was nobody there and so it would be for about a year.
During 2017, one of my daughters and Grandson nearly died of Carbon Monoxide Poisoning, my Grandson had a cancer scare, my Father passed away and in September I was signed off work and my neurologist said she didn’t know how I was still standing.
I began to engage on Twitter receiving support and encouragement from around the World and by March 2018 I decided that I would have to find my own way through my journey with Dementia and it was through Twitter I found out about the A Good Life with Dementia course run by Damian Murphy of Innovations in Dementia CIC.
Originally, my wife and I only went for one session but it was like a light bulb moment for both of us. In two hours there, we went from Prescribed Disengagement to finally being engaged with life again. With Damians agreement I went along for the rest of the course, even though it meant undertaking a 130 mile round trip to York.
I had begun my blog just as a record of my journey before the course but after it began to expand into support, information and articles about topics relevant to Dementia.
Hopefully, I still have a long journey with Dementia in front of me but I hope that with the support of my extended family of DAI and others, I can continue with the work I am doing for some time to come.
I will always be grateful to the course in York and to the support and opportunities that Dementia Alliance International have given me.
Howard is very actively involved as an advocate; he is an active member of Dementia Alliance International, and he is also a member of the following organisations or groups:
Alzheimer’s Society 3 Nations Dementia Work Group
Alzheimer’s Society Research Network
WEGO Health Patient Leader
Global Disability Summit 18 Partnership Forum
DEEP UK SHINDIG Group
Disability Rights UK
Royal College of Psychiatrists Memory Service National Accreditation Programme
South Yorkshire Dementia Research Advisory Group
Young Dementia UK Network
Young Onset Dementia & Alzheimer’s (YODA) UK
Research Participant and Steering Group member
Admin “Living with Dementia” Facebook Group
Today, we bring you DAI’s Vice Chair Jerry Wylie’s recent Plenary speech from ADI Chicago. Sit down, grab a coffee and put on your seat belts. It is a fabulous, if not challenging ride, especially so for health care professionals and providers, so get yourself ready, relax, and tune in to watch it now here, or later on our YouTube Channel.
Living the U.S. National Dementia Plan
Presented by Jerry Wylie
This is not Jerry’s full speech notes, but a blog he wrote very recently, that goes well with it, and covers many of the key messages in his speech. He also presented his speech again at our monthly Webinar yesterday, so those who could not attend ij erson, could hear him live online.
“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.
What? Inhumanely treated? How, when and why? Read on……
First, our diagnosis is delivered “Without Any Referrals” to support or disease education. No discussion of rehabilitation and No words of encouragement, No mention of hope, how diet & exercise could help. We are given absolutely nothing, zero, nada. To this day, we are still being told to get our affairs in order and, here are some drugs that might help with your symptoms, temporarily.
The end result; we are “delivered directly into suffering” from depression by the very doctors who are paid to keep us well.
Not long after this wonderful experience, most of us, are “abandoned by one or two members of our own family”.
Below, is a chart that shows exactly how we process this situation. We no longer have the ability to properly process what happened and, because we need family more than ever, we are driven even deeper into “long term & unnecessary suffering”.
It took me 1.5 years of preventable, unnecessary suffering, to fight, scratch and claw my way out of the most miserable, vegetable like existence of my life.
“THIS IS NOT JUST MY STORY”!
It’s the story of 50 million other people living with Dementia as well. This treatment is our standard treatment world wide, perhaps, due solely to ignorance.
I can confidently say “The only time” a person with Dementia “really suffers” before end stage, is when we are either unintentionally or, intentionally mistreated. Period.
Clearly, this is cruel, unusual and unacceptable abuse. Clearly this is a violation of our human rights.
When someone is caught abusing a pet, it immediately becomes a huge media/news event and people get arrested. When 50 million people are abused by our doctors and sometimes by family members, nothing is reported and no one is as much as reprimanded.
When harsh words are spoken to us, we can’t process what you said but, we “cannot forget” how you made us feel. Once again, we are unintentionally or, intentionally pushed into“constant, ongoing grief” that we cannot shake off or even come close to processing. Unexplained, it is a life sentence of pain at a time when we desperately needed the opposite.
This is the truth. This is the debilitating, mentally abusive, harmful & “INHUMANE TREATMENT” that is currently happening about every 3 seconds somewhere to virtually defenseless people.
NO, STOP & THINK about this! 50 million people today plus, “10 million more people” every year. This may well be the “Most Inhumane Tragedy of Our Century”!
Now, feel free ask me why I am such a boisterous advocate for people living with Dementia and our Human Rights.
I dare you to ask me why people with Dementia suffer.
“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.
Today, we are sharing a post of a video made by our Chair, Kate Swaffer in 2013, which highlights too well, what almost all speakers with dementia in Chicago shared. It is rather disturbing that little has changed for people newly diagnosed with dementia in the last 10-20 years, especially at the time of diagosis, and that the lack of education of health care professionals in dementia is still so inadequate.
Some of the terms Kate uses, are not what she would say today, as like everyone, even people with dementia can learn, as well as change their minds. But, too often, dignity and respect is still lacking in dementia care, in hospitals and in residential care.
“This video interview was made for the recent South Australian Dementia Forum held on 5 December 2013. At this event, a large number of experts, health care professionals and consumers, including carers and people with dementia attended to listen, learn, and workshop about how to improve the care of people with dementia and mild cognitive impairment in the acute hospital setting. I hope it highlights some of the challenges we currently face as patients, and assists in helping others know how we would like to be treated, in particular with the same education about our disease as any other illness, and with the same respect and dignity as any other patient. Sadly, the experiences I talked about really happened. Opinions are my own.”