Today’s re-blog as part of World Alzheimer’s Month focuses on an article by Beth Britton about how dementia and personality interact.
“Every day can, and often is, very different. Sometimes the changes in a person’s personality may be more, or less, pronounced. If they become less pronounced, you may feel like the person is ‘returning to their old self’, only to see the ‘reversal’ of that the next day, week or month.”
After a quiet start to the week Wednesday saw me off to Birmingham to stay at Woodbrooke for a few days me time.
While at Woodbrooke, for me, I felt and saw the arrival of Autumn, the crisp morning air and the green leaves on the trees turning brown and falling.
On Thursday I was at the Young Dementia UK conference at “The Studio” in the centre of a rainy Birmingham.
For me, it was an opportunity missed, too many graphs and figures.
It should have been an opportunity to showcase the work of people living with Dementia under the age of 65, to show what can be achieved with inclusive post-diagnosis support, services and rehabilitation.
To get out the message that the way Dementia is portrayed by society, Governments, Healthcare Systems, and the media is wrong, to turn the negative narrative into a positive one.
To get the message out that you can live your life within the reducing limits of your Dementia following a diagnosis of Dementia.
During the lunch break, I was able to meet Dr Richard Hawkins and Mark Ivory from the Journal of Dementia Care and Eloisa Stella, Vice-President and co-founder of Novilunio Onlus Association amongst others.
The highlight was a “Dementia Diaries Live”
performed by Diarists, Dory (Teresa Davies), Carol Fordyce and Peter Berry.
Friday was World Alzheimer s Day in support of which I had posted a number of articles and it was time to travel home. I enjoyed my time at Woodbrooke and the staff were fantastic and supportive as ever.
Also, Dementia Alliance International announced that CEO and co-founder Kate Swaffer was deservedly this years winner of the Richard Taylor Advocate Award .
Late on Friday night was the Dementia Alliance International Action Group meeting, a fantastic group of people worldwide, challenging the stigma and human rights abuses, who campaign for change not for themselves but everyone living with or supporting people with Dementia.
The weekend has been one of recovery from my travels, catching up with emails and social media and some new opportunities.
Peter Berry’s 64th weekly video is now available on YouTube
Today’s re-blog as part of World Alzheimer’s Month focuses on an article by Philly Hare of Innovations in Dementia CIC, titled “Why dementia MUST be seen as a disability”
“So what do people need in order to live well with this particular disability, dementia? They need an approach based on recognition of their human rights, not one defined by funding constraints and/or an over-sensitivity to perceived risk. They need an approach based on the ‘social model’ not the ‘medical model’. They need to be listened to – to have their expertise recognised. They need to be enabled, supported to contribute. And they need to be included not excluded.”
Why Dementia Must Be seen as a Disability
Finally, in the Sunday papers, a couple, married for 67 years being Torn Apart by the healthcare system in the UK.
Another example of why healthcare should not be decided on cost but should be inclusively state-funded via taxation for everyone, regardless of social standing or disease.
Politicians talk of a “Civil Society”, it’s time we had one.
Today’s re-blog as part of World Alzheimer’s Month focuses on an article by Susan Macaulay which comments on 10 seldom-mentioned “side effects” of using antipsychotics in long-term dementia care, which are also 10 more good reasons we should #BanBPSD.
“There are a tonne of reasons not to give antipsychotics to people who live with Dementia. There are also a tonne of reasons why people are given antipsychotic medications in long-term care, most of which have something to do with their normal responses to adverse conditions and poor care approaches, and nothing to do with Dementia. The normal human responses are pejoratively labelled, and erroneously attributed to Dementia.”
After the first 4 years of my journey with Dementia, 2018 marked the beginning of change in my journey with Dementia.
As new year dawned, I was still in that dark place following my diagnosis of Alzheimer’s and Frontotemporal Dementia in March 2017, without the support of the NHS or local Authorities
By the end of March 2018, with the help of the A Good Life with Dementia course ,I had begun to re-engage with life and had begun to reinvent myself and climb out of the metaphorical Dark Hole .
This article will be gradually updated.
Today’s re-blogs as part of World Alzheimer’s Month focuses on two short articles by Kate Swaffer, relating to 20 things not to say or do to a person with Dementia.
“there was some angst from a couple of people about some of my points, but overall, mostly consensus, especially by people living with dementia. If it is possible to positively impact the life of even one more person living with dementia, then it would not matter how many people without dementia had disagreed with me.”
Today’s re-blog as part of World Alzheimer’s Day focuses on Susan Macaulay’s article about 4-minute survey results that debunk decades-long notion that BPSDs are symptoms of Dementia.
“The roots of this erroneous belief lie in the work of researcher Dr. Jiska Cohen-Mansfield, who, in the mid-1980s developed a 29-item scale to measure agitation in nursing home residents. The Cohen-Mansfield Agitation Inventory (CMAI) spawned others such as the Nursing Home Behaviour Problem Scale (NHBPS), which also comprises 29 items. In the late 1990s, through no fault of Dr. Cohen-Mansfield’s, the types of behaviour tracked by research tools such as the CMAI and other similar scales came to be known as the “Behavioural and Psychological Systems of Dementia (BPSDs)..”
4-minute survey results debunk decades-long notion that BPSDs are symptoms of Dementia
Today’s re-blog as part of World Alzheimer’s Day focuses on the campaign to ban the Behavioural and Psychological Symptoms of Dementia (BPSD).
“The campaign to Ban BPSD in no way advocates the complete removal of antipsychotics.
As with any other chronic terminal disease they do have a place but the campaign wants to see healthcare systems move from the medical model which on further reading you will see that it abuses the person with Dementia and ignores their human rights, to the social model that treats the causes.
The medical model treats the symptoms of BPSD usually by Chemical Restraint which leads to increase clusters of behaviours associated Dementia.”
Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It
Today’s re-post as part of World Alzheimer’s Day focuses on Dr Al Power’s article titled “Medicalization of Feelings: BPSD or BPSOD?”
“Here is the premise: people living with various forms of dementia often exhibit certain signs of emotional upset, which may include anger, sadness, fear, frustration, or anxiety. These are now referred to with the BPSD label, and even classified and categorized, with prescribed approaches to various categories.”
Today’s re-blog as part of World Alzheimer’s Day is about the campaign to ban BPSD, the Behavioural and Psychological Symptoms of Dementia.
“The Campaign to ban the medical model of BPSD, the Behavioural and Psychological Symptoms of Dementia, raises awareness of the need to move from the medical model of Dementia care to the social model, moving from treating the symptoms to treating the cause.
It looks for new and innovative approaches to Dementia and aged care philosophies and practices.”
Today’s re-blog as part of World Alzheimer’s Month focuses on an Open Letter to Gabriella Rogers and Channel 9 in Australia relating to the campaign to Ban BPSD, the Behavioural and Psychological Symptoms of Dementia (#BanBPSD).
It was written by:
Leah Bisiani, MHlthSc, Dip Bus, dementia and aged care consultant, RN.1
Kate Swaffer, human rights activist, author, MSc dementia care, PhD candidate
Daniella Greenwood, consultant, author, speaker, activist
Dr Chris Alderman, B Pharm, PhD, FSHP, BCPP, CGP
Dr Al Power, Geriatrician, author, educator
Susan Macaulay, care partner, author, dementia advocate”
in response to an article on Channel 9 in Australia called “New drug to treat behavioural issues in Dementia patients”
