Paper: Low-cost strategies to improve dementia care

An interest in health and science invites some thought about chaos, complexity and catastrophe theory. These suggest quite a cold - mechanistic - perspective of reality. So trying to think of clinical and nursing examples beyond fluid dynamics, the heart muscle... to more socially oriented applications demands some creative thinking.

In my work within intermediate support in the community for decades my colleagues and I come across cases were husband, wife, partner have looked their significant other to the nth degree. That degree can include hiding the extent of a person's cognitive problems from other family members. Suddenly there is a real catastrophe as the carer is taken acutely ill and hospitalised.

Left at home soon the dependency is revealed. Trying to negotiate care at home can then be a real challenge.

Alternately, when people living with dementia are hospitalised for physical reasons another host of challenges arise.

I've a relative who works over at Warrington General Hospital and it's great to be able to help highlight a paper written by Michelle Beavan their dementia champion and published in Nursing Times:

Beavan M (2014) Low-cost strategies to improve dementia care. Nursing Times; 110: online issue.

Space Station Robot Forgets Key Again

individual

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

group

Memory: artificial (jokes aside) and real

Just-be? Making sense of the activities of daily living Chunking	Space Station Robot Forgets Key Again
Making sense of someone else's sense of the  activities of daily living	Funding for research (competition!)

group - population

Additional link: The Economist - Rise of the robots 29.3.14
Image source: APOD

Rare Disease Day 28 February 2014

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

Source: http://www.rarediseaseday.org/

I am honored to stand, in her graceful place, and shine a light on a delicate group of individuals who, nevertheless, in sheer numbers are a force to be reckoned with. Thank you, Sean Hepburn Ferrer

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases touch children.

In the words of Audrey Hepburn, “We cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…”. It is in this spirit that we invite you, alongside Sean Hepburn Ferrer, to Join Together for Better Care.

group - population

Winwick Hospital remembered

Image source: Metro

... 11.12.13 . ... time to deliberate upon Dementia ... G(r)8

@dhgovuk

#G8dementia

News update: 11.12.13 posted 2024hrs UT 
BBC News G8 'will develop dementia cure or treatment by 2025'

See also:
Department of Health, 29 November 2013, England
Dementia: A state of the nation report on dementia care and support in England

Site: https://www.gov.uk/government/publications/dementia-care-and-support

Above banner source acknowledged and with thanks:
http://dementiachallenge.dh.gov.uk/category/g8-dementia-summit/

Health, Art and The Reith Lectures 2013 (and the search for the perpetual umbilicus)

This week sees the start of The Reith Lectures on BBC Radio 4 by Grayson Perry.

The question is: who decides on what makes art good?

Perry writes in the Financial Times Weekend:

Clement Greenberg, a famous art critic in the 1950s, said that art will always be tied to money by an umbilical cord of gold, either state money or market money. I'm pragmatic about it: one of my favourite quotes is you'll never have a good art career unless your work fits into the elevator of a New York apartment block.

Once born into the world, the umbilical cord that transfers and imbues life and sustenance no longer matters physically. It is the social ties that bind, according to the lyrics and life experience.

In health and social care we need to find a perpetual umbilical cord that makes well-being and health not just something to take for granted. Not some thing that is only noticed when the piece of art won't fit into the elevator any longer.

This is the challenge in health care. A challenge that will see art movements and markets come and go. The solutions will rely on science, technology and art.

@science @technology @art 

each brings its own engineering.

We need tools that facilitate self-care when needed. Cognitive engineering that people can call upon by virtue of the combined literacies they possess. Self-care that is delayed due to self-knowledge.

Cognitive tools people can take anywhere; from elevators in New York and doors to apartments, yurts in Mongolia, the multitude of tents in Jordan to the terraced houses near Wigan Pier ...


Financial Times, Grayson Perry’s Reith Lectures: Who decides what makes art good? October 11, 2013 7:16 pm

Stayin' Alive - a fun, guided, stigma busting cultural walk and celebration of World Mental Health Day

Dear friends of CoolTan Arts,

We would like to invite you to join us for Stayin' Alive - a fun, guided, stigma busting cultural walk and celebration of World Mental Health Day.

Saturday 12 October 2013, 11.30am-approx 4pm
Start:  Maudsley Hospital, Denmark Hill, SE5 8AZ (outside the main entrance)
Finish: South Bank
Length: 4.8 miles

By taking part in this sponsored walk you will help raise much needed funds for CoolTan Arts, enabling us to support more people with mental distress, through creative arts workshops and self-advocacy training.

This year’s walk theme is ‘Stayin’ Alive’ - exploring the idea of hope. As we walk the route together we will share what inspires us and makes life worth living through talks, discussion, performance and art!  CoolTan Arts have created a Hope Wall to share ideas before the walk: http://cooltanartshopewall.tumblr.com/

How to register for the walk:
There is a registration fee of £5 unwaged, £10 waged.

•    Register Online at www.cooltanarts.org.uk 
•    Call us on 020 7701  2696.
•    Email emmathatcher@cooltanarts.org.uk

Sponsorship:
•    Once you are registered CoolTan Arts can provide you with a sponsorship form.
•    Or, create your own online fundraising page on JustGiving.

Further info:
The Largactyl Shuffle is a guided, stigma-busting cultural walk, designed to encourage mental and physical wellbeing, through art, exercise, humour and history. The walk is named after the oldest anti-psychotic drug Largactil that can have extreme physical side effects including a distinctive shambolic gait, or ‘shuffling’. Largactyl Shuffle walks have been running since 2006 and are designed and led by CoolTan Arts volunteers who entertain walkers with talks and other surprises along the way.

The whole walk is 4.8 miles long and is suitable for people with disabilities and wheel chair users – do as much as you like. Please bring a packed lunch and drinks, wear suitable clothes and sensible footwear. The walk leaders wear orange high-viz vests and rucksacks. Call CoolTan Arts on 07985 658443 if you cannot find the group of walkers on the day.

Dementia Awareness Week - journal papers (still available 26th)

Definition: 

Awareness - something that must last beyond a week. For some people - carers and families - awareness is a living constant.

Dear list members 

(these papers appear to be still accessible - PJ).

In support of Dementia Awareness Week we are giving away free access to a selection of content from Emerald’s Health & Social Care Collection of journals on dementia and related conditions.

These papers help to raise awareness of the available research and practice issues involved in working with people with dementia. 

Well-being and dementia – how can it be achieved

Bob Woods

Promoting self-directed support for people living with dementia: overcoming the challenges

David Moore, Kirsty Jones

Support workers' knowledge about dementia: a vignette study

Daniel L. Herron, Helena M. Priest

Like these? View the full selection of free articles on our website

Best wishes

Laura

Laura Wilson

Editorial Assistant | Emerald Group Publishing Limited

My source: MHHE list

BBC Horizon II: Processes - step this way ... safely

Following the BBC TV Horizon programme last night "How to Avoid Mistakes in Surgery" I came across the following list concerned with processes:

Sequential steps. Where one step follows another.

Alternative steps. Where conditional logic specifies which of several paths should be traversed.

Iterative steps. Where a single step is repeated multiple times.

Composite steps. Where steps are nested within other steps.

Optional steps. Where any one of a set of steps may be traversed, depending on the results of a boolean operation.

Checklist. Where all of a number of steps must be traversed, but in any order. p.126.

The list is related to software development and manufacturing as per the reference source below. Within informatics and project management I've noticed and written here about the emphasis placed on processes. Process, process and yet more - in one form or other. As A&E doctor Kevin Fong revealed people can get lost in a process (intubation), especially experts within organisational hierarchies - complex teams in urgent circumstances. In information system projects the need for a socio-technical perspective is essential, and is synonymous with due consideration of human factors. Processes are an essential ingredient to understanding the world and there's a huge literature on events, co-ordination, timing, logistics, value ... but as the Horizon programme pointed out there's also a need for reflection, stepping back, taking in or trying to grasp the big picture. Maintaining situation awareness is vital to assure safety and as the program showed in a crisis hindsight makes a blind spot visible. This is why process is one of four P's in Hodges model (the others - purpose, practice and policy). Processes count, but they are only part of the bigger picture.

The steps above are intended for software developers, but the descriptions throw up some points when subject to a more literal - human - interpretation (which might be a problem?).

The 'alternative' steps: could that mean skipping one in turn as in 'alternate'?

And crucially for the checklist are there any risks associated with its being completed in any order?

There is a world of difference between programming methods and logic on the one hand; and human language and dialogue on the other.

Fayad, M.E., Johnson, R.E. (Editors). (2000). Domain-Specific Application Frameworks: Frameworks Experience by Industry. Wiley. p.126.

Rare Disease Day 2012 - reflections using h2cm

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

Is it ironic that ‘I’, this ‘self’ becomes an expert of my condition by virtue of it being rare? Is it also rare because so few must live with the emotional consequences? Yes, personalised medicine holds great promise, but please don't forget - me: this person : I don't want to be left here.	Being that expert I may even know the ICD-10 … codes for my condition. I know the symptoms very well. I know the 'current' evidence and may also be able to tell you about the gaps in the knowledge base.  My family physician learns with me. Supported by policy and united as a group what might citizen science deliver?
Your carer may be the expert because for you this rare disease means you cannot readily self-advocate. We all need to know we are not alone. If there is a role for social media here it is: "Rare but Strong Together"	For those people with rare diseases we have to help them unify in order to shout, wave and raise awareness. After all: WE seek global health don't we? Being rare is there investment in funding for research? Must there be a market first to bring forth drugs / treatments? We know about individual motivation, whither the corporate drive - social responsibility.

My prompt and thanks!: Stu Young, Royal College of Nursing Students