Yes: Rare Disease Day was yesterday...

... but Rare Diseases will still be affecting people tomorrow...

so, let's really make them 'yesterday'...

Planning tool for Early Onset Dementia - Mapped to Hodges' model

 This post is prompted by a tweet:

Please re-Tweet this #stillmylife planning tool for early stage #Alzheimers and other forms of #dementia from the incomparable @3SpiritUKNZ! #wellness #wellbeing #aging #geriatrics pic.twitter.com/lHd6hj1Wkh

— Ian Kremer (@LEAD_Coalition) January 27, 2018

individual

|

INTERPERSONAL : SCIENCES

humanistic --------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

|

group

Self-knowledge of symptoms - Learn about my condition Learn and stimulate the brain Use lists, what I am doing, what interests me music, places, work-experiences ... Consider interventions, record in my biography Feel safe, confront fears and anxieties What does 'well-being' look like for me Positive thoughts, dreams, aspirations Use Mental Capacity for Future Planning	- and signs  Seek environments that support me; avoid those that drain or inhibit me Use technology to create biography (Research into diagnostic journey) Take control - strategies on nutrition and health
Share biography with loved ones, friends. Tell them how they can help -  Ensure (assure) future needs are/will be met as I would like them (Hey!) I can still contribute to society so ..	- consider getting help e.g. Dementia Advisors (Guidelines for health services, esp. primary care, GP, family physicians) Mental Capacity Act, Power of Attorney, Advanced Decision Making Yes: to occupation, earning or volunteering

Apologies in advance, as the formatting may be disrupted on some devices so two lines may not scan across the care domains as intended.

As you can see this brief 'sketch' of #StillMyLife shows that the emphasis of this planning tool is well-placed. This also highlights what I have referred to as 'holistic bandwidth'. There are many claims regarding the centredness of various things, for example; student education and learning, health and nursing care, government and the way business is conducted. In this instance, the question of what is the conceptual, disciplinary and professional extent of a tool, approach, theory or practice. Is its claimed philosophical, ethical, social or other objective fully deserved? Is it person-centred, or task centred? Does it deal with the political dimensions of significance to an individual with a disabling health condition as it claims?

n.b. Note the boxes and the absence of ticks.

Conference: The Foundations of Conceptual Engineering

A conference on The Foundations of Conceptual Engineering at NYU, on Sept 14 and 15, 2018. To attend, please register by following this link no later than August 31, 2018.

One dimension of cognitive success is getting it right, i.e gaining knowledge of facts. Another dimension of cognitive success is using the right concept, i.e. framing a topic in the right way. This view, if correct, tasks inquirers with critically examining the concepts they are using and perhaps replacing those concepts with new and better ones. This task is often known as “conceptual engineering”.

The idea that conceptual engineering is an important task for inquirers in and outside philosophy has recently gained traction. Some philosophers think conceptual engineering is an important task for inquirers to pursue.  The conference is focused on foundational issues in connection with conceptual engineering. Topics to be addressed include the following:

• What are the semantic mechanisms that underlie conceptual engineering?
• What are concepts, and which role (if any) do they play in conceptual engineering?
• How can a theory of conceptual engineering be integrated with large-scale semantic theories? 
• Which precise changes does a language undergo when its speakers engineer concepts?
• Is conceptual engineering something that speakers can ever purposefully bring about?
• What is the relation between changing concepts and changing reality? 

The planned conference will focus especially on the semantic foundations of conceptual engineering and push towards a better understanding of the process.

The conference is organized collaboratively by members of NYU (Vera Flocke and David Chalmers) and members of the research project ConceptLab, located at the University of Oslo (Herman Cappelen and Andrew Peet).

 More...

<>

If this conference needs a workshop, a workbench, or conceptual engineering facility they might care to look at Hodges' model. Whether for conceptual brainstorming, requirements, prototyping, refactoring, combination ... Hodges' model can have a role. Some musings in this vein follow...

individual

|

INTERPERSONAL : SCIENCES

humanistic --------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

|

group

One dimension of cognitive success is getting it right,
i.e gaining knowledge of facts.
Another dimension of cognitive success is using the right concept,
 i.e. framing a topic in the right way.

Acceptable to the patient (or advocate) and ethical? Achieving concordance - agreed  relevant to the context, issue, problem? Logical consistency, coherence and permanence? Holistic bandwidth is tested - semantic scope? Conceptual Engineering instantiated in software, argumentation? AI? Conceptual Spaces? Topic is person-centred  (patient, student, carer...) Testing: Concepts with positive :: negative are switched - re-framed?  Other dichotomies? Conceptual slide-rule? Known 'semantic drift' in vocabulary - concepts: disuse, archaic, new, re-purposed?

Assessment is comprehensive? Knowledge of 'conceptual engineering'  how to - rules, laws (mechanisms)? Concepts were measurable (as were previously defined) quantifiable? Flagged interdisciplinary use of concept? Transdisciplinary? Visual tools - representation, diagrams? Reversible quality: 'engineering' disassembly? Conceptual dependency on threshold(s)? Engineering concepts:  tolerance, project, professionalism, failure, risk, benefits, techne? 'Conceptual engineering' defined units & standards: word, words ... corpora? Research methodologies, methods? Literature

Available social sources were utilised, or at least pursued? Narrative derived from concepts references life history (story)? Tested and accepted by peers - multidisciplinary team? Inclusive? Quality criteria were met Cultural, ethnic due regard  met

legal? concepts used were appropriate  to outcome(s)? 'Space' for uncertainty, constraints, unwise decisions? Policy influence on language, examples found in health and social care 2008-2018 austerity? Accords with and assures the Sustainability Development Goals? 'Macro conceptual engineering' -  Level of required change in health systems:  new & existing

Public Service(s) Ethos ii (notes)

Behind the post from 19 January 2018 are the 4Ps which can be related to Hodges' model.

individual

|

INTERPERSONAL : SCIENCES

humanistic --------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

|

group

ethos: PURPOSE - Were possible the patient should have a purpose in relation to their condition, care, and recovery as far as possible. (How do we define proactive, preventive care...?) The nurse and colleagues will similarly be purposed to deliver person-centred care. The organisation can make a difference here - to individual practitioners, translating the organisational ethos through leadership to ensure individual's can be creative, safe, effective, innovate and find their role and purpose rewarding and (constantly) refreshing. Ethos here should align with personal ethics and values. Fire may be a mechanistic phenomena, but burnout here is best avoided.

SERVICES: process - In the past and today nursing has been and is defined and described in task-oriented terms. Hodges' model acknowledges this by differentiating between the activities that nurses carry out some are mechanistic and others are humanistic. Through a combination of  interventions nurses help patients regain their independence as far as possible.  Outsourcing and project management are also tied to process-laden perspectives, models and schema.

PUBLIC practice - Students are socialised into practice (yes, I had a bath).  Our practice is contextual, that is, it is situated. Interaction and the time nurses spend with patients and often carers places an emphasis on the exercise and maintained competence of interpersonal skills. Empathy, rapport, dignity and respect, universal positive regard ... they are exercised and practised here. If this is the domain were therapuetic relationships are forged, this is also the domain where contact-time counts. Count the beans as we may, the qualitiative relationships in the time spent between nurse-patient; lecturer-student; mentor-student; leader-team contact are definitive for the public and practitioner. Enjoy this, as the robot help is enabled with an ethos of its own?

ethos POLICY - The initial post was prompted by POLITICS.  Many nurses try to be apolitical, necessarily so at work. In a way, as you can see the HUMANISTIC-MECHANISTIC axis provides a dodge. The humanistic placement of practice in Hodges' model can account for the public service ethos of "Don't Panic Carry On". Although many try to circumvent the politics of healthcare, there is no escape from the effects of policy on the service. The UK and USA remain ideologically divergent in healthcare (and geologically) but the debate is now heard everywhere and when. It is infraglobal. It is heard everywhere and when. In the political domain there are obvious sensitivities associated with our use of maps and our place upon them. Addressing the ethos of healthcare at an individual and population level now calls for maps of a unique kind.

Finding voice: Harmonious and Discordant Care

  Life stories: 

Where exactly and when do life chances and health career pivot?

"Verdi founded the world's only retirement home

for hard-up singers and musicians in 1899, 

calling it his favourite of all his works." p.2

individual

|

INTERPERSONAL : SCIENCES

humanistic --------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

|

group

"You are born an artist or you are not and you stay an artist even if your voice is no longer a wonder" p.2	"unpleasant smells of urine" and "17-hour gaps" between dinner and breakfast  = "Inadequate" "Almost half of Britain's 410,000 residents receive some level of local authority support ..."
"Guests are free to come and go as they please and though Mandelli  doesn't go out to dinner any more, she still goes to La Scala, often to rehearsals." p.2	"Around one-third of the UK's bed capacity is at risk of closing within the next 5 years, ..." "The rise of the minimum wage has also put pressure on an industry where labour accounts for 70 per cent of costs, while Brexit has increased reliance on more expensive agency staff."

Sources:

Plimmer, G. (2017) Frailty of Four Seasons shows risk to residents, FT Weekend, 16-17 December. p.18.

Roberts, H. (2018) At Home: Harmony in Verdi's care home, House&Home, FT Weekend, 6-7 January. p.2.

Public Service(s) Ethos

individual

|

INTERPERSONAL : SCIENCES

humanistic --------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

|

group

ethos	SERVICES
PUBLIC	ethos

Corbyn, J. "... public services ethos ..." heard this week on the news, 17 January, 2017.

Representation of the People

individual

|

INTERPERSONAL : SCIENCES

humanistic --------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

|

group

Representation  of the  People   An act to unite  "The Representation of the People Act 1918 meant that a greater number and a broader mix of voices could now be heard at the polls. 100 years later, we mark the centenary of this historic Act with this UK 50p coin range. "

2018 ...

Representation of the People's 

health and social care...?

My source and image: The Royal Mint

Person-centred care [PCC]: is it really happening? c/o National Voices

individual

|

INTERPERSONAL : SCIENCES

humanistic --------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

|

group

PCC = what’s important to the individual, is co-ordinated around their needs and involves them in decisions. "To be person-centred, that care needs to work together to wrap around all the needs of the individual in a holistic way. Sadly, our report found that neither the NHS nor adult social care can demonstrate co-ordination of care, despite ‘integrated care’ being a key goal of all national and local leaders over the past five to 10 years. The way health and care services work must change to reflect the needs of the population. It would be a start to recognise that co-ordination of care is an important factor, and that we need to be measuring whether it is happening."	(many) Definitions = 5 key indicators of pcc:  good information, good communication, involvement in decisions,  care co-ordination  and care planning. Service user reported data from 19 nat. surveys NHS:  in primary care, only 39% of patients said their GP was ‘very good’ at involving them in decisions. What’s more, personalised care planning doesn’t really happen. Only 3% of GP patients with one or more long-term conditions reported having a written care plan, suggesting that opportunities to deliver personalised care in the NHS are being missed.
"Personalisation of care is more advanced in adult social care than in the NHS, with 89% of adult social care users reporting that the care and support they received helped them to have control over their daily life. Similarly, 63% of people using a social care personal budget said that this had improved their ability to make everyday decisions. Participation and control of decisions is well-established in adult social care, with just over 90% of those using community adult social care saying they were involved in decisions about their care and support needs." (See original post - report for important additions)	20+ years policy  England Care Act 2014 National Voices coalition of health and care charities  report ‘Person-centred care in 2017' No National data on this... "It is clear from our report that a strategic overhaul of how care is measured is needed. Rather than single-service, single-setting, activity measures, more credence needs to be given to the experiences of the people who rely on services. Only then can we help local systems succeed in offering personalised, integrated and holistic care. Whilst there have been some advances in the delivery of person-centred care, there is still a long way to go before the policy rhetoric matches the reality experienced by people."