2018, was a year where everything has changed but nothing has changed.
From sitting all day depressed watching TV 12 months ago, to the Global Disability Summit in July and many other events culminating in the European Commission/The Hague committee on cross border vulnerable adults a couple of weeks ago.
From receiving support from Twitter to setting up a support group on Facebook, attending “A Good Life with Dementia” course to helping set up a Support Group in Sheffield for Young Onset Dementia, 2018 brought change to my life with Dementia.
However, the Dementia Doubters, the negative narrative of the media and fundraising campaigns which feed the fear of a diagnosis of Dementia, the continual abuse of our rights under international law, the proposed changes by The Mental Capacity Amendment Bill, Matt Hancock announcing that 1 million NHS staff are Dementia Friends – if the mandatory tier 2 training NHS staff receive was good enough, why do they need Dementia Friends awareness sessions ?, all these and more show that nothing has really changed in the grand scheme of things.
When comparing the state of Dementia care with other chronic terminal diseases, there would be an outcry if people with Cancer or Heart Disease etc were treated in the same way as people living with Dementia.
In 1901, Dr Alois Alzheimer observed a patient at the Frankfurt Asylum named Auguste Deter. The 51-year-old patient had strange behavioral symptoms, including a loss of short-term memory.
During the late 1890s, she started showing symptoms of Dementia, such as loss of memory, delusions, and even temporary vegetative states. She would have trouble sleeping, drag sheets across the house, and scream for hours in the middle of the night.
Dr Alzheimer concluded that she had no sense of time or place. She could barely remember details of her life and frequently gave answers that had nothing to do with the question and were incoherent. Her moods changed rapidly between anxiety, mistrust, withdrawal and ‘whininess’.
It was not the first time that Dr. Alzheimer had seen a complete degeneration of the psyche in patients, but previously the patients had been in their seventies. Ms. Deter piqued his curiosity because she was much younger.
She seemed to be consciously aware of her helplessness. Dr Alzheimer called it the “Disease of Forgetfulness”, yet people still question the diagnosis of those that are still able to function.
There is hope for 2019, the voice of Dementia is becoming louder, not from those that speak for us but those with the lived experience, advocating, challenging and gradually taking control of the narrative and speaking for themselves.
It is only for those who live daily with their diagnosis of Dementia to set the language around Dementia, who must be involved in the development of new services, who will bring about the full integration of the United Nations Conventions into legislation, society and systems, who will gradually make those who claim to provide services to support us, accountable for their lack of action and who will ensure that those that follow us will no longer be disabled by a diagnosis.
For our care partners, a recognition that they are not just carers but enablers, who save the state and the NHS a lot of money to the detriment of their own health. Without them we couldn’t continue to lead our lives the way we do.
They uphold our rights,we couldn’t live where we chose, be involved in family, community, public and political life as our rights state without their support.
So, 2019 may be the year when things in fact change, where the people living with their Dementia take control, where rights become the basis of all things as they should be and where Dementia reaches equality with other chronic terminal diseases.
Dementia has an early, middle and palliative stage, we don’t all get diagnosed at the palliative stage, in the early to middle stages we may still retain the ability to enact change, contrary to common perceptions.