KT-EQUAL future events - Ageing Research and Design 4 Health Conf.

Dear colleague,

KT-EQUAL is planning lots of interesting events in the next few months focused on aspects of ageing research.

Below are a few upcoming events that may be of interest to you, more information can always be found on our website.

Upcoming workshops include topics such as -

• digital inclusion
• ethical dilemmas
• and creative societies.

A flyer is available with more information about these exciting free events.

The I'dgo consortium has also confirmed the full programme for their seminar on An international perspective on the Built Environment for an Ageing Population: Issues in maintaining access to outdoor places on the 16th February 2011.

Another upcoming conference which is still accepting papers* is the Design for Health Conference in Sheffield Hallam University on the 13th-15th July 2011
http://www.design4health.org.uk/

We look forward to seeing you at some of our events in the future.

Best Wishes

Helen Haigh
KT-EQUAL Co-ordinator
University of Sheffield

PJ adds: *Kirsty Christer at SHU contacted me re. D4H to advise that submissions are open until 7th Feb.

Dementia care: communication in nursing homes

In nursing home liaison the importance of communication quickly asserts itself (as it does throughout health and social care). As an organisation effective communication is evident (or should be) at all levels:

• Corporate: across the 'group'
• Management: within the home
• Clinical: continuity of care between shifts, days - nights
• Care staff and residents - especially those with challenging behaviour
• The care home (staff), relatives and community

This week and as also recognised for colleagues in the future, my role will focus on education. In particular reviewing the background, theory and practice of communication with people who are more severely disabled by this condition. I've sixteen slides as a guide, a lesson plan but I will be using a flipchart (arriving early to scribble away) with the intent to engage the audience. Given my pre-occupation with information I want to mix and match as follows:

1. Use information as a central concept, not technically but personally as per self-awareness, knowledge and orientation, person-centred care.
2. Have people contemplate communication in a practical sense.
3. Finally, obviously ensure that what is discussed and shared is directly related to their work, the care needs and challenges of the residents (and families?).

On the information front I'm sure I can employ the conventional and simplified communication model:

SENDER - channel - RECEIVER

This may appear mechanistic but it's an effective way to highlight the real difference that Health Care Support Workers - and indeed family and friends can make to resident's lives. Referring to this model I can demonstrate the very upsetting inequalities that are often found here. The audience can contrast themselves as SENDER and RECEIVER with each other and in care scenarios.

We will identify and acknowledge the deficits that people living with dementia must contend with and endure. This is to review previous learning and ensure staff fully appreciate the care situation. More positively the session will stress the role of staff as builders and agents of personalised care with a great contribution to make.

1. They can consider (critically) the care environment - yes the 'home' - as the source of potential noise. 
2. When there is an imbalance in the capabilities, comprehension and meaning between SENDER and RECEIVER skilled, insightful, and patient staff can compensate, addressing the person's unique needs.

If there are matters that cannot be resolved then these 'risks to person-centred care' should be carried forward to management: a prescription that must be repeated as necessary. With the purported high rate of staff turnover in homes (is that a myth - what are the figures really?) they should be able to leverage these FFIs - frequent first impressions - from new staff, before they are also part of the furniture.

Allied with this is a request for support in person-centred care. For me these two go together and it's good that this 2nd session follows tomorrow. This is an opportunity to introduce the Health Care Domains Model and build upon the points raised and factor in the questions and issues raised by the staff.

Critically across all these layers of comms is: Leadership. A key part of that of course is recognising training needs and pursuing change.

Proximity: Relationships, Records, e-Health - Person-centredness near and far

When data protection and confidentiality is debated "the need to know" is often wheeled out as a rationale for access to personal identifiable data.

See the following:
NHS Confidentiality Consultation - FIPR Response (esp. #18).
DoH, Confidentiality, UK

In addition, if I need to access the record of patient held at hospital 'x' from hospital 'y' what is the health care relationship that prompts and justifies this need?

At present visiting nursing and care homes, you go knowing that data capture and recording (care assessment) is a fundamental requirement. Having a secure laptop for community has long been promised. While tech solutions are available and implemented elsewhere, my lack of such technology prompts me to imagine a future visit. ...

Pulling up at the nursing home I walk up the drive, ring the bell. While I wait the new tablet device in its bag has already introduced itself to the home. As I am allowed in - my identity assured - the tablet continues its dialogue, it:

1. Downloads and updates existing active client data.
2. Downloads additional data as per the agreed dataset on the new referral.
3. Checks on items 1-2 with a review of recent prescribing for key psychotropic medicines.
4. It checks the most recent NICE, Cochrane evidence and reconciling the local care knowledge. (This may seem excessive at present, but come personalised medicine this will be crucial).
5. Will check on most recent clinical reviews and due dates.
6. The h2cm template is there ;-) ready to present the care domain summary for the general physician ... and possibly (roles?) the next care professional to visit this home and this resident.

The significance of relationships is usually denoted by distance. Personal space is rather obviously spatial. This is how we recognise (well one of the ways!) the meaning and significance of an intimate relationship. In care situations with individuals who are confused and potentially aggressive we are conscious of the need to have due regard and respect for that person's personal space. Spaces and boundaries have to be negotiated in a variety of ways and means. 

Health information technology has already made effective use of role-based access to systems. If we take person-centred care to the nth degree, proximity can also count as it does in mobile health (m-health). Whilst to effect a role is to be in a certain location and context (sat at the office PC in the hospital) roles are organisationally and politically defined. Proximity is also contextual and situated in other ways, my proximity to:

• the nursing home;
• the individual's room;
• the individual themselves.
• (and their relatives)

While telecare / informatics can deliver a dividend in remote care, it is essential that it can also demonstrably support person-centred care. The best way (clinically assured) to do that for many activities is person-to-person contact. Just because one-side of the relationship may not recall the encounter as little as five minutes after, does not mean that there is no value in sustaining the ring of the bell, the exchange of s-miles, the record that results and other background conversations.

Image source:
Gestalt - proximity
http://graphicdesign.spokanefalls.edu/tutorials/process/gestaltprinciples/gestaltprinc.htm

Call for Papers: 1st Int. Workshop on Pervasive Care for People with Dementia and their Carers (PCPDC-2011)

(To the webmasters of http://www.pervasivehealth.org please check the status of your site - 'attack site')

Dublin, Ireland, 23 May 2011

http://trail.ulster.ac.uk/pcpdc/

To be held in conjunction with the 5th International ICST Conference on Pervasive Computing Technologies for Healthcare 2011

The global population of persons aged 60 and over is rising dramatically. Between 2006 and 2050, the number of people aged 60 and over will double from 650 million to 2 billion people representing 22% of humanity. One group of the ageing population that is particularly vulnerable to loss of independence is those affected by dementia. It is estimated that around 820,000 people in the UK have dementia. Recently emerging computing and assistive technology have been used to attempt to improve the quality of life for people with dementia..

The workshop aims to provide a forum for discussion on challenges and opportunities in bringing technology to support people with dementia. The workshop will feature the theme of ‘engaging people with pervasive technology’.

Research topics included in the workshop

This workshop will feature the theme of  ‘engaging people with pervasive technology’ in dementia research. Researchers from academic, healthcare, industrial and third party organisations are invited to contribute. Early researchers and researchers from healthcare are particularly welcome. Research areas include, but are not limited to:

Theme 1 – What are the opportunities of pervasive care technology?

Development of pervasive ICT systems
Human computer interface design
Behaviour monitoring and activity recognition
Knowledge representation and dissemination
Data analysis and interpretation
Sensor design and application

Theme 2 – User engagement

Key issues emerging when working with people who have decreased capacity for consent
Ethical issues for implementation
Methods for engagement
Pitfalls of engaging people with dementia, their carers and intermediate users

Important dates

Submission deadline:          25th February 2011
Notification of acceptance: 25th March 2011
Camera-ready copy due:    4th April 2011
Conference / Workshop:    23rd – 26th / 23rd May 2011

Format

Submitted papers should not be longer than 4 pages in standard IEEE two-column format.

For more detailed formatting instructions please see http://www.pervasivehealth.org/?page_name=author_skit.

Accepted papers will be published online in IEEE Xplore Digital Library (to be confirmed).

Healthy Active Ageing Virtual Global Discussion Forum: Int. Day of Older Persons 2010

Dear Colleagues,

The World Health Organization, Departments of Reproductive Health and Research, Human Resources for Health, University of Iowa Hartford Center of Geriatric Nursing Excellence, and Partners would like to invite you to join Healthy Active Ageing Virtual Global Discussion Forum - 1-12 October 2010.

Join us in creating an interprofessional network involving representatives from health professions, policy makers, programme managers, international organizations/agencies, universities, research institutes and our clients to share our knowledge and experience on issues that affect healthy ageing.

REGISTER NOW! http://knowledge-gateway.org/ahaa

Share your experience, your opinion on issues that affect us all, as individuals, families and health practitioners. Contribute through this forum to the policy and practice dialogue.

During this twelve day forum you will receive two emails per day; one email to introduce the day’s questions and one daily digest of the contributions. Daily questions will be disseminated within three topic areas:

• Challenges and opportunities to support healthy active ageing
• Sharing of success stories
• Caring for older persons with dementia

Once you have registered you can participate in the forum simply by responding to the daily emails or sending a message directly to ahaa at knowledge-gateway.org

You can also log into http://knowledge-gateway.org/ahaa to browse the archived discussions and resource materials.

For any questions on this Virtual Global Discussion Forum please contact the forum facilitator: 
Christina Fusco christyfusco at gmail.com

Please pass this invitation onto your colleagues and networks.

With kind regards,

Maggie Usher-Patel
Scientist/IBP Secretariat
WHO/RHR

My source: HIFA2015

Additional links:
Full of Life  - http://www.dwp.gov.uk/policy/ageing-society/full-of-life/
International Day of Older Persons - http://www.timeanddate.com/holidays/un/international-older-persons-day

Drupal musings 16: 1% digital and analogue memories

At Drupalcon in his keynotes Dries Buytaert has highlighted that Drupal now powers approximately 1% of the web. While 1% is not much especially given the total size of the internet with its day on day, hour by hour growth this is nonetheless a significant milestone. Especially when Dries speculates on the growth of Drupal projected ahead to 2020.

Like all digital media Drupal is a tool that extends our personal and cultural memories. As all the keynotes showed Drupal, PHP, HTML[5] all have histories of their own and a role to play in providing a surrogate memory. The media and technology [IBM] regularly predict how technology will change our lives, including how we remember.

Amid such speculation memory still makes us who we are. You and I have a yesterday, today - and we pray - a tomorrow.

This is the bootstrap that counts

Bootstrapping or booting refers to a group of metaphors that share a common meaning:

a self-sustaining process that proceeds without external help. ...
en.wikipedia.org/wiki/Bootstrap

Striking then the news this week that - dementia costs 'equal to 1% of global GDP'.

Special Issue: The Challenges of Dementia: an International Perspective

Read the special issue on the -
Challenges of Dementia
- for free online!

This special edition of the International Journal of Geriatric Psychiatry contains a series of articles concerning current services and future plans for the care of people with dementia and their carers in a host of different countries. The articles reflect the myriad approaches in which various countries are improving the quality of life for people with dementia.

My source: Wiley

Free event 29th September 2010 Promoting the collaboration of Age research

Dear Colleagues,

We are pleased to announce a fantastic free event coming up on the 29th of September 2010 titled - "Promoting the collaboration of Age research"

The event is run by the UK Age Research Forum (UKARF) which is a strategic partnership between government, research councils and charities that aims to make a positive difference to the lives of older people through research.

The aims of the conference are:

• To highlight the best of UK research funded by collaborative working of the UKARF member organisations
• To demonstrate the benefits of collaborative working in age research
• To inform about developments in age research in the UK

Where is it taking place?

Time: 9:30am — 4:00pm
Venue: The Royal College of Physicians
11 St Andrews Place
Regent’s Park, London NW1 4LE

How to register: fill in the form attached or register online at -
http://web.me.com/magic_bean/UKARF/registration.html

KT-EQUAL will have a stand at the conference so please register for the event and drop by and say hello!

If you want to know what we are up to, register for any of our future events, or download our monographs from previous events please visit our website www.equal.ac.uk

Best Wishes
Helen Haigh
KT-EQUAL Co-ordinator
University of Sheffield

My source: Sparc/KT-EQUAL network

Retirement, memories of work & Bacon numbers

In the UK in July 2010 the much anticipated news about the government's plan to scrap the default retirement age in the UK from October 2011 throws up a complex future work place and nursing care space.

At the moment if a member of the staff in the NHS needs a psychiatric assessment and admission, then there is often a protocol that determines how their care is managed. Various factors are taken into account. For example, the work history of the person and the distance of available beds. This may entail admission for them to another area. Such arrangements help protect the staff member, their families and the local staff for whom being both carers and colleagues could be quite difficult.

Over two decades I have encountered health professionals who are diagnosed with dementia maintained in the community - in their homes - and in residential care. So far I have not known these individuals in their work capacity and professional lives. This is due in part of course to the incidence of dementia increasing with age and my previous status as a spring chicken. Today of course things have changed:

• Early onset dementia is more common as the overall older adult population rises.
• Suddenly (well at least after October 2011) we may find - despite the physical and emotional demands of the job - that the staff in residential and nursing homes are also older - working through that previous work | retirement barrier.
• There's another change: now I am a mature chicken.
• I wonder what the churn rate is in our nursing homes?
• While we usually think of high turnover for staff and the associated poor quality of care. As care and nursing homes are also businesses there are two churn rates:
• - senior and junior staff leave the sector, or move to other homes;
• - residents are moved for reasons of re-location - increased care needs, and the choices of family.

So....? Amid all this I wonder how many workers in the care sector working their extended years may potentially come across former work colleagues? This could be a delicate and haphazard negotiation. ...

Additional link:
The Oracle of Bacon

New challenging behaviour charter launched

I noticed the item below (with links and images added here) on the Foundation for People with Learning Disabilities Forum. It makes a very important point:

"The label 'challenging behaviour', has become misused over time."

My worry is that this finding is not just relevant to individuals with learning disability and their families, but other groups.

People with dementia, especially in the latter stages can present with behaviour that is increasingly described as 'challenging'. Care facilities are being commissioned and designed with the requisite care, staffing and environment to provide care for people in an effort to provide the highest quality and standard of nursing care.

To some extent these are distinct groups with specific needs. So the use of 'challenging' in one context obviously has a different currency and meaning in another. Whilst the practise and care environments may be separate, is there no place where cross-over may occur? I remember a local RCN meeting presentation that highlighted the demographic trend of dementia within the learning disability population.

To start a painting we often start with a wash:
efficiency - puts a broad brush in the hand.

As we aspire to provide person-centred care
what type of brush do you hold?

We paint with the words we use - take care.

---

The Challenging Behaviour - National Strategy Group has launched a charter to promote the human rights of individuals with learning disabilities who are perceived as challenging.

Up to 27,000 people with learning disabilities in the UK may have been given a label of challenging behavior, resulting in this group of people being - stigmatised and socially excluded denied the right to ordinary lives in the community, to education, recreation and employment placed in institutional settings a long way from home and families.

The label challenging behaviour, has become misused over time. Rather than being used as a term to encourage carers and professionals to understand the underlying reasons for a person's behaviour, 'challenging behaviour' has been used as a diagnostic label, viewed as being intrinsic to the person.

The Challenging Behaviour - National Strategy Group want people (and organisations) to sign up to the charter to register their support for the principles it contains and to commit to action to improve the lives of children and adults who are labelled as challenging. We need as many people as possible to support us, so please ask your friends and family to sign up too.

To read the charter, including an easy read version visit:

http://www.challengingbehaviour.org.uk/

ENDS

What is the Challenging Behaviour - National Strategy Group?

The Challenging Behaviour - National Strategy Group (CB-NSG) was launched on November 7th 2008. The CB-NSG is a key national group to address the needs of children, young people and adults with learning disabilities whose behaviour is perceived as challenging.

Members of the CB-NSG include family carers, representatives from the Department of Health, Royal College of Psychiatrists, British Psychological Society, Royal College of GP's, NHS Trusts, researchers, service providers and a range of practitioners, regulators, commissioners and third sector representatives. The group is action and outcome focused and comes together twice a year to monitor progress, share best practice and develop coordinated action plans.

What is challenging behaviour?

"Behaviour can be described as challenging when it is of such an intensity, frequency, or duration as to threaten the quality of life and/or the physical safety of the individual or others and it is likely to lead to responses that are restrictive, aversive or result in exclusion." (Challenging behaviour - a unified approach; RCPsych, BPS, RCSLT, 2007)

Challenging behaviour is things like hitting your own head against a wall, pulling curtains down or pulling someone's hair. Often people do this because they cannot communicate with words and they have little or no choice and control over what is happening to them. How do I find out more?

To find out more about the Challenging Behaviour National Strategy Group, please refer to 'All change' the Summer issue of 'Challenge' today. This issue focuses on the work of the National Strategy Group and includes articles from Dr Roger Banks (Consultant in the Psychiatry of Learning Disabilities), Jackie Edwards (Family carer) and Bob Tindall (United Response).


'Challenge' is the newsletter of the Challenging Behaviour Foundation and is available free of charge by emailing: info at thecbf.org.uk or downloading from www.challengingbehaviour.org.uk

Helen Marron
The Challenging Behaviour Foundation
Email: info at thecbf.org.uk

Person-centred care and semantic inflation

Time laughs at us, with us and has the last laugh. If you are ever complacent and by virtue of your years you venture to think to yourself:

Well we've been working on this now for 20-30 years look at the progress we've made. ...

Time is always there to remind you:
Hey, just who are you trying to fool?
You are a lifelong learner!

The number of personnel and services that describe themselves as person-centred is an ongoing theme of so many CVs, policies, SLAs, commissioning and consultant's presentations and lectures. ...

Whether in a ward, service, or organisation's philosophy, person-centred is a term that is being diluted to the extent that semantic inflation devalues what is supposed to be the main currency? Or are we admitting that this is the cost of the political games that people play? Whatever your view, there are insights of progress won, but also reminders on how much remains to be done.

Health and social care being multicontextual demands the existence of multiple currencies. One additional currency begs that we compare A, B, C with the evidence base.

If this is the crucible of our person-centred times then what is burning?

• Nursing ethics?
• Nursing education?
  
• Idealistic aspiration? (Yes, we will get there!)
  
• New Age incense?
  
• Policy initiatives?
• Funding allocations?
• Nursing activism (Or, are there any balls in the house)?
  
• Service infrastructures?

Although the media temperature is rising here in the UK, as health, itself economically recumbent is moved to ICU being so politicised; the Francis Report provides evidence of a dire lack of person-centred care. Recalling my basic nurse training: what can be more person-centred than ensuring that a patient has the necessary fluids and diet?

For women who suffer a miscarriage - where should they be nursed as debated in today's Guardian newspaper? What is person-centred care in maternity and gynaecology services?

In-patient provision and transitions from child-youth-adult provide other opportunities and major challenges for health and social care to demonstrate their person-centredness.

There are so many ways to be person-centred, so many levels, some may even be contradictory(?).


I wonder how many of those people highlighted in the Francis Report also had a form of dementia - whether diagnosed or not? Personhood and the need to acknowledge and sustain the person are not new.

Even if a service is person-centred in terms of the environment, meal choices, therapeutic options, belongings, personal space, proximity to home and relatives ... the crux at the center is the attitude of staff, and their having the time and space:

"to be"

person-centred

Additional links:

Mumsnet

Atkins, L. (2010) NHS 'must lessen trauma of miscarriages' Parents web forum Mumsnet calls for new code of practice to help women who lose their babies, The Guardian, Tuesday 2 March.

Image source:
http://drugsreference.co.uk/books/books.php?cat2=Caregiving

Sir Terry Pratchett: 34th Richard Dimbleby Lecture - Shaking Hands with Death

I watched Sir Terry Pratchett's Richard Dimbleby Lecture (I am not yet sure if this will be available on iPlayer?). The issues are already well recognised, much debated and provide a constant tap on the shoulder for us all:

Although the poll numbers are small
there is a definite shift afoot.

From the BBC:

One of the world's most popular authors gives the 34th Richard Dimbleby Lecture from the Royal College of Physicians in London.

Sir Terry Pratchett announced in 2007 that he had been diagnosed with a rare form of early-onset Alzheimer's disease. In his keynote lecture, Shaking Hands with Death, he explores how modern society, confronted with an increasingly older population, many of whom will suffer from incurable illnesses, needs to redefine how it deals with death.

The acclaimed creator of the bestselling Discworld series, he is the first novelist to give the Richard Dimbleby Lecture. His books have sold more than 65 million copies and have been translated into 37 languages.

<->

I realised in listening to Sir Terry that although I usually apply socio-technical in an informatics context, the term is of course equally applicable to the debate surrounding assisted suicide, or assisted death as Sir Terry prefers to call it. The quality of (our social) life is lost in the beep, buzz, hum and scan of hyper-technical health care.

It is as if the technology of health care is producing relativistic effects. Instead of the travellers being explorers heading for stars at near the speed of light; they are travellers cast adrift within a long term chronic disease that cuts them off from time, place, person, those they love and - for Sir Terry - choice. ...

This debate will run on ...

Photo source: The Guardian

Nursing human rights - dementia care II: fao Sir Gerry Robinson*

The 2nd and final edition of BBC Two's TV programs Can Gerry Robinson Fix Dementia Care Homes? was on last night and made for uneasy viewing.

The saving grace for the public's confidence (if there is one) was repetition of the excellent care at one home.

For all the negatives presented on TV, before mapping the key content of this program using Hodges' model it must be acknowledged that the staff and both managers involved are to be congratulated in allowing and facilitating the production of this program. Sir Gerry and the program's producer(s) obviously travelled an especially difficult course in this episode.

Unless qualified or having undergone some training, many staff will behave and eventually modify their norms and expectations according to what they are exposed to within a short period of starting to work in residential care. Perhaps, this explains in part the adage 'start as you mean to go on'? It was apparent that many staff knew they were failing, they recognised the lack of leadership, their inability to sustain the effort for positive change.

This is why (in 1977 at least) the school of nursing I attended was a little more than churlish about students initially working as a nursing assistant. If you were not working on a ward that also trained student nurses then you may adopt the wrong attitudes and with it what we might call 'non-skills'. This includes 'learning' means of avoiding contact and interaction with patients; and possibly interpreting behaviour in a purely negative and non-therapeutic way. This may extend to the point of becoming personally involved - taking things personally - whether the behaviour exhibited is aggression or sexual disinhibition, for example.

Here then are some of the points I noted, many are repeated from the first program with some very unfortunate and troubling additions (which I may further review as per the above text):

PURPOSE, CARE PHILOSOPHY (none?), person-centered care, attitude, memory loss, vulnerable individuals, training, risk, assessment, motivation to change, interpersonal skills, motivation, listening, life skills, knowledge and skills, feedback, aggression, agitation, measures, rapport, empathy, +ve care, boredom, personal choice & autonomy, access to personal belongings, dolls, personal focus, anxiety, psychological stress and trauma of physical relocation

physical environment, colour, decor, noise, outside access - physical security, physical restraint - use of furniture, position of furniture, day-to-day items, tasks, PROCESS, measures 'dementia care mapping', routine tasks, time with residents, assessment, care files (paper!), bed occupancy, activities - painting, gardening, sheds, staffing cover : resident ratios, models of care (none?), objective measures

PRACTICE (common minimum standards), the residents, team work, day staff:night staff, collective faith and trust, collaborative objectives, care, shared enthusiasm, social attitudes, dignity and respect, relationships, social values, personal-social history, engaged activities, involvement, 'social' norms, inclusion, community - institution, being valued by others, impact on families and local community of home closure

POLICY (the lines in the sand?), management spot checks, '24 hour care', disciplinary procedures, professionalism in management relationships, duty of care, ratings: tokenistic inspection regime, home closure, consultancy, audit, legislation, sickness, pay, business ethos, staff morale, recruitment and retention, confidentiality, sanctions, management style, qualifications, standards, institutionalised care, re-location, lessons learned (business involved, local authority)?

Once again, if you missed it there is an opportunity to watch the program on BBC iPlayer. There are also Open University learning resources associated with the program.

My closing thought: in closing the asylums over the past 40+ years I hope we have not and are not creating a series of micro-institutionalised replacements.

This is an issue for everyone.

*Please pardon the deliberate name-dropping (and not for the 1st time!).

Additional links:

The Care Quality Commission

POLITICAL care domain resources

SOCIOLOGICAL care domain resources

Nursing human rights and Int. Human Rights Day: fao Sir Gerry Robinson*

On last nights BBC Two TV program: Can Gerry Robinson Fix Dementia Care Homes?

- amongst the angst his visits and engagement with several care homes provoked Sir Gerry highlighted the need for a moral compass and compassion. The themes I expected to find were there: the need for person-centered care, knowledge of the clients and their backgrounds, being occupied and having access to a secure environment when the weather permits, staff morale and the level of staff training and competence. Although not necessarily 'enjoyable' viewing the program was very good in raising awareness and included either directly or indirectly:

person-centered care, attitude, memory loss, vulnerable individuals, training, risk, assessment, review, motivation to change, interpersonal skills, motivation, listening, life skills, knowledge and skills, feedback, aggression, agitation, change, measures, rapport, empathy, +ve care, boredom, diurnal variation of mood, personal choice & autonomy	physical environment, colour, decor, noise, outside access, physical security, nutrition, tasks, processes, measures 'dementia care mapping', routine, meal times, time, physical risk - falls, mobility, assessment, care files (paper!), bed occupancy, staffing : resident ratios, models of care
the residents, visitors, family, love, social attitudes, dignity and respect, relationships, social values, personal-social history, engaged activities, involvement, 'social' norms, inclusion, community - institution, being valued by others, distraction	records, freedom, care funding costs / weekly charges, funding, inspection, consultancy, audit, legislation, rules (meals), pay, investment, business, staff morale, recruitment and retention, financial risk, confidentiality, plans and initiatives, management style, qualifications, standards

If you missed it there is an opportunity to watch the program on BBC iPlayer.

Today 10 December 2009 is also International Human Rights Day. To many people elderly care issues in a Western democracy may seem a world away from 'human rights' as per:

• false imprisonment
• denial of justice, law and order
• political repression
• freedom of expression
• education and health for all
• discrimination
• ....
  

- and yet the situations that arise within nursing, health, social care are never far from ethical and human rights concerns:

• Mental capacity
• Consent
• Physical restraint
• Mental health law
• Environmental health law
• Conscientious objection
• Medicine and nursing in the armed forces
• Equity and equality
• Accessibility
• ....
  

Moral dilemmas can and do arise in any and all of the care domains of Hodges' model and all combined (the spiritual). In addition to a moral compass, it seems we need a compass in nursing in order to be compass-ionate.

Hodges' model can provide a compass.

A compass to help navigate open waters, new coastlines and the uncharted corners and recesses of human nature.


*Please pardon the deliberate name-dropping (and not for the 1st time!).

Additional links: Amnesty International

BloggersUnite: Human Rights Day

POLITICAL care domain resources

Compass image: http://clipart-for-free.blogspot.com/2008/07/compass-rose-clipart.html

Dementia BBC TV & Radio

This evening on TV BBC Two 2100 hours UT:

Can Gerry Robinson Fix Dementia Care Homes?

Businessman Sir Gerry Robinson returns in a new series in which he tries to turn around three struggling care homes.

In the next twenty years over a million Britons will have dementia, and sufferers are likely to end up in one of the country's privately run care homes. It's a huge business worth six billion pounds, largely paid for by taxation, yet a great deal of the care is woefully inadequate. Can Gerry, whose father had the disease when he died, change a culture of stagnant lounges, a lack of specialist training among staff, and a focus on keeping people alive rather than helping them to live a happy life?

<->

It is very difficult to keep up with the various 'World Days' there are so many. The BBC's Archers has also dealt with dementia through the character Jack Woolley and the impact of the illness not just on the fictional families concerned, but the small fictional village community. The writers have done an admirable job in raising awareness about dementia. The link below is associated with World Alzheimer's Day, which was 21 September in 2006.

http://www.bbc.co.uk/radio4/archers/backstage/alzheimers.shtml

Now over three years later, the past week has brought us to Peggy's final realisation of the extent of Jack's care needs with his arrival at a care home.

This care transition has provided an opportunity for wider debate and discussion:

http://www.bestcarehome.co.uk/blogs/view/find-the-best-care-home-for-archers-jack-woolley

Additional links:

Bens Puzzles

Dementia, Drugs, Nursing by Degr[EE]s and Care Transitions

Of all the policy issues that government faces the care of an ageing population is irresistible in demanding attention. This one will keep tapping MPs, policy makers and families ... on the shoulder. It will constantly cycle through the government's gamut of official papers. In the UK this past week people suffering with dementia and the prescribing of anti-psychotic medication and deaths arising from the same has been highlighted and not for the first time.

Whilst my spare time web attention is also given to nursing IT and socio-technical matters, as an NHS community mental health nurse these vulnerable individuals are the primary focus of my work and that of my colleagues. There are three strands to the current role - in brief:

• Nursing home liaison - dedicated to specific homes;
• assessment, intervention and subsequent review;
• working with social services integration project duty desk.

Drugs are of course a day-to-night constant for all nurses, with the addition of debate across all the knowledge domains of Hodges' model - that is interpersonal, sciences, sociology and political domains of knowledge. We have witnessed this in the scientific evidence of substance misuse and the government misuse of drugs advisory group 'difficulties' and now this issue which is professionally closer to home: right on the doorstep in fact.

'Home' is the operative word as many of the people concerned reside in residential care and nursing home facilities. Let's scratch the surface of what we already know:

• These people can be very confused, vulnerable, they may be agitated and not easily reassured and placated without repeated skilled intervention.
• Facilities are subject to inspection and care standards.
  
• Many do not have an advocate in the sense of a family member who visits at least weekly and will challenge and question care and prescribing.
  
• Older people may already be on several drugs (polypharmacology) due to other chronic health problems.
• There is still a disconnect (holistic gap!) between the interdependence between mental - physical health problems.
  
• These facilities are that individual's home - they continue to live and hence age there.
• Homes get attached to their residents; in the best homes they (and their relatives and friends) become part of a greatly extended family.
• For confused people there is a potential community (albeit a closed one) that people can participate in or choose to stay in their room. This space, the freedom of movement it affords - toing-and-froing - should itself be subject to history taking and ongoing assessment.
  
• The quality of this community depends on the core staff and additional skills seen as essential by the organisation and care standards, e.g. activities coordinators, residents committees that also engage family, friends.
• NVQs and mandatory training in the sector is making a positive difference.
• There remains a high level of staff turnover.
  
• Some homes are dual-registered catering for nursing care with another floor for dementia care (does a 1st or 2nd floor provide secure access to a garden in the summer?).
  
• Homes rely greatly on the specialist services of local community mental health service, also given the placement of people in homes 'out of area' this involvement may be more remote and subject to varying degrees of engagement and hence quality.
• Homes are businesses and the movement of clients incurs changes in income.
• The quality and standards of architecture and design for residential accommodation has seen great strides in the past decade.
  

The bottom line (no pun intended) is the need for macro-management in terms of multidisciplinary team input; that is, primary care, modern matron, mental health and micro-management in terms of personalised care with regular review of physical and mental well-being and medication.

As government's of all persuasion utter the mantra of education! education! education! - this must be heard in the residential and nursing home care sector. The good news is that standards, competencies and the quality of care in the sector are improving; but to education we must add environment! environment! environment! As someone who appreciates aesthetics in design we should all be aware of the seductive properties of newly designed and furnished nursing homes (new carpets plus brand new flat screen LCD TVs does not automatically mean multi-dimensional care).

The counterpoint to this are the long stay, geriatric wards of old (c. 1977-1984) and the reaction of family friends when they first walked through the (three) doors.

They were distraught.

In time they came to appreciate the efforts of the staff and the importance of the knowledge, skills and attitude of the ward team. They could understand and see what staff were trying to achieve regards individualised care. Many responded to the open invitation to be part of the team, to get involved. Yes, the environment was far from 'right' (it was terrible), but it's the people on all sides of the care equation that count. It is the same today, but if the care environment is no longer appropriate then people should be moved to a place were their care needs can be met without recourse to anti-psychotic medication. That is why initial and ongoing person-centred assessment is very important.

It is very difficult to predict future needs and yet trying to anticipate them is the primary nursing challenge. If life is a book, then the turning of the page that ends one chapter and starts a-new is a non-trivial transition. That said and make no mistake, it is not for dramatic effect that we describe the behaviour of some individuals as challenging. Drugs are a tool and like all tools it is how they are used in assuring the highest standards of care, retaining personal dignity and maximising whatever quality of life an individual can achieve. Accounting for care interventions including medication is critical. If due diligence cannot be effectively applied in the financial sector then perhaps there is scope for due diligence in the care of older adults*?

*Some clients are under 65 years of age.

Additional links:
[17 Nov, 2009] Alzheimer's Society report: Poor dementia care in hospitals costing lives and hundreds of millions.

http://www.nhs.uk/news/2009/10October/Pages/Antipsychotic-use-in-dementia.aspx

Web can help elderly surfers slow dementia: The Sunday Times

From The Sunday Times
October 18, 2009
Web can help elderly surfers slow dementia

Ivy Bean

(Photo by Bob Collier)

Ivy Bean, who is 104 years old, is the UK's oldest Tweeter (IvyBean104) on the social networking site, Twitter.
Jonathan Leake, Science Editor

GOOGLING is good for grandparents. Internet use can boost the brain activity of the elderly, potentially slowing or even reversing the age-related declines that can end in dementia, researchers have found. Using brain scans, they found the internet stimulated the mind more strongly than reading, and the effects continued long after an internet session had ended.

“We found that for older people with minimal experience, performing internet searches for even a relatively short period of time can change brain activity patterns and enhance function,” said Gary Small, professor of neuroscience and human behaviour at University of California, Los Angeles (UCLA). In the research, Small and his colleagues worked with 24 men and women aged between 55 and 78. Half of them had used the internet a lot; the others had little experience.

At the start of the research, they were asked to conduct a series of internet searches while their brains were scanned using a technique known as functional magnetic resonance imaging (fMRI). This measures changes in blood flow around the brain to work out which parts are the most and least active. After the initial scan, participants went home and used the internet to carry out specified tasks for an hour a day at least seven times over the following fortnight. Then they had a second brain scan, again while searching the internet.

Small and his colleagues found the impacts began immediately, with the first scan demonstrating brain activity in regions controlling language, reading, memory and vision. By the time of the second scan, however, the activated areas had spread to include the frontal gyrus and inferior frontal gyrus, areas known to be important in working memory and decision-making. The researchers suggest internet searching stimulates brain cells and pathways, making them more active.

“Searching online may be a simple form of brain exercise that might be employed to enhance cognition in older adults,” said Teena Moody, a UCLA researcher who co-wrote the report with Small. Moody believes internet searching challenges the brain more than reading because people need to perform several tasks at once. These include holding important information in their own memory while simultaneously assessing the information on screen and extracting the parts they want from graphics and words.

The research will be presented tomorrow at the annual meeting of the Society for Neuroscience in Chicago, where the impacts of ageing on the brain are a big theme. It has long been known that as people age, their brain functions and abilities also change. In many respects these changes are beneficial — verbal and social skills tend to improve until at least late middle age, for example. In other areas there can be declines. One of the best known is mathematics, as shown by the number of mathematicians and physicists who do their best work early and then struggle to match their youthful performances.

It is only in recent years, however, that researchers have been able to use technologies such as fMRI to observe the brain in action and measure the changes that come with age. What they have found is that as people age, their brains undergo structural and functional changes, often including atrophy, reductions in cell activity and increases in deposits of insoluble protein. All of these can reduce cognitive function.

In Britain, for example, around 700,000 people suffer from dementia, a condition in which so much of the brain has died that function is severely impaired.

Small and Moody’s argument is that brains are similar to muscles, in that the more they are exercised, the healthier they become. So, activities such as internet use, reading and socialising can slow or reverse normal age-related declines. Small said: “Our most striking finding was that internet searching appears to engage a greater extent of neural circuitry that is not activated during reading.” Other neuroscientists support the idea of exercising the brain but question the benefit of spending too much time on the internet.

http://www.timesonline.co.uk/tol/life_and_style/health/article6879663.ece

My source: CI list thanks to Michael Gurstein (with additional editing and links)

KT-EQUAL event Ageing Research 17 September

I was really pleased to be able to attend this event last Thursday (do check the site as there is an ongoing programme of workshops):

Making the most of the potential of Assistive Technology

This workshop organised in conjunction with BIAS (Brunel Institute for Ageing Studies) will provide a round-up of recent developments in AT and the underlying research aimed at enhancing independence in the home, improving safety and security, extending the use of the car, managing continence, maintaining the body and stimulating the brain.

 

Hosted by: Brunel Institute for Ageing Studies
Sponsored by: BIAS and KT-EQUAL

10:20 Welcome and Introduction, The world of  BIB and older people, Chair for the morning, Professor Emeritus Heinz Wolff, Founding Director, Brunel Institute for Bioengineering (BIB), Brunel University 
10:30 New Service Quality to Support Self-Care, Keren Down MBE, Director of FAST
10:55  Tackling Ageing Continence, Felicity Jowitt, Brunel Institute for Bioengineering
11:20 Refreshments
11:40 From chairs to stairs, Dr Ruth Mayagoitia, Applied Medical Research Group, King's College London,
12:05 "The Companion" - Independence, choice and self-sufficiency, Edward Varney, Brunel Institute for Bioengineering
12:30 Discussion
12:45 Lunch
13:45 Introduction to the afternoon, The world of BIAS and older people, Chair for the afternoon, Professor Mary Gilhooly, Professor of Gerontology, School of Health Sciences and Social Care, Brunel University 
13:50 KT-EQUAL: its mission for older people, Professor Peter Lansley, Director KT-EQUAL, University of Reading
14:00 Older drivers & older IT users: designing new technology, Suzette Keith, Middlesex University
14:25 Safety and Security in Later Life, Professor Rachel McCrindle, KT-EQUAL Consortium, University of Reading
14:50 Tea
15:10 Nourishing the body and saving the soul, Dr Arlene Astell, St Andrews University
15.35 Technology for people with dementia, Eleanor van den Heuvel, Brunel Institute for Bioengineering
16:00 Discussion
16:30 End

As noted above Prof. Heinz Wolff duly and delightfully introduced proceedings and chaired the morning. As a community mental health nurse for older adults and informatics / ICT enthusiast the day certainly proved worthwhile for me. Here are some reflections on two sessions:

While clinical and information standards have and remain a preoccupation for me, Keren Downs' session raised the chicken and the egg problem of standards and quality in the development of self-care and assistive technologies. Keren's presentation highlighted the stasis in design in the older adults sector and the question of how to energise future vision and models for innovation. There was reference to Shaping the future of care together and Common Core Principals to Support Self Care 2008, Department of Health.

Funding inevitably featured - the green paper listing three options:

Partnership - government pays for between a quarter and a third of care costs ...
Insurance - government pays for between a quarter and a third of care costs ...
Comprehensive - everyone pays into a state insurance scheme, whether or not they need care, and everyone gets free care when they need it.

The next slide reminded me of the tilting, table fitted geriatric chairs of old as Keren Downes highlighted the relative stasis in design and need for change for this population group.

While form follows function - can it also stifle innovation? When you consider change in materials, people's homes, care environments, attitudes ... there must be opportunities for innovation?

I also recalled similarities between this market of assistive technology and that of benefits realization within nursing (health) informatics. Especially as barriers were considered such as:

• poor design (usability)
• information provision
• workforce competency
• procurement
• (To which I would add 'value added services' - maintenance, life-cycle management.)

As the speaker and work of FASTUK made clear, older adults represent a growing and emerging market, for whom standards and design will be critical if self-care and assisted living are to be fully realised *.

The final slide listed some reports and a web link as follows:

FAST reports: www.fastuk.org

• Assistive Technology supporting self care, July 2006
• Assistive Technology –Workforce Development, June 2007
• Annual Report to Parliament on Research and Development in Assistive Technology, July 2009

Felicity Jowitt in another session:

TACT3: Tackling Ageing Continence through Tools, Theory and Technology

- provided a concise non-medicalized definition:

Urinary Incontinence 'is a condition in which involuntary urine loss 
is a social or hygienic problem and is objectively demonstrable'.

International Continence Society definition of incontinence

The talk included explanations of the problems and how they arise, prevalence, management, available AT options and the anatomically - stigma driven challenges that male and female continence presents. To close new assistive devices were discussed. The creation and production of discrete, well-designed person- (in a social context) friendly aides, special pads and devices to detect the odour that signifies the need to change a continence pad before the human nose is alerted.

The sessions featured a Q&A session and amongst the many questions raised, I wondered about the ideal of continence aids that also help nurses and carers maintain high quality standards of care and professional values. ... Perhaps from the late 1970s I have antiquated notions of basic nursing care? It is shocking to hear stories of people being told to "do it anyway - you've got a pad on!". Does it not occur to these people that if the person is asking they obviously have insight and are distressed by their urgent situation. As to people who are confused and asking as a result of agitation - the mind boggles and the heart aches at the standards of care evident in such an attitude.

So, this was a really thought provoking and - despite the subjects - enjoyable event and I have only of course scratched the surface.

The majority of presentation (including those above) are available on the download page.

A related reference I am following up:

Duarte, L.R., Marquié, L., Marquié, J-C. et al. (2009) Analyzing feature distinctiveness in the processing of living and non-living concepts in Alzheimer’s disease, Brain and Cognition, Volume 71, Issue 2, November 2009, Pages 108-11.

I will do a h2cm matrix on continence in the future.

* You can almost hear the critical exclamation of a future aged '60s generation - "No way dude I'm not using that!". Perhaps by then we will have the means to ensure they retain the faculties to pass a critique.

Relative poverty (3) - sciences

[The introduction is repeated across these posts: intrapersonal, political, sociology]

There are many paradoxes in life and many of these are concentrated in the realm of health and medicine (a major sub-division of life and death).

For decades the link between poverty and standards and quality of health has been recognised and politicised in the media and policy. Just this past week was news of a Bill to make the eradication of child poverty a legal obligation not something that can be the political objective at the start of a Government and then cast aside.

Many things are relative and poverty is often described in this way applying to individuals, social classes, communities, regions and whole nations. Using the domains of Hodges' model what reflections does this prompt? Let us see:

SCIENCES: We tend to think of economics and the definition of poverty in materialistic and monetary terms. In this domain things become things. Processes and much more besides - people are objectified and commodified: prostitution, child labour, child soldiers, people trafficking - individuals as numbers at a certain time, certain place. The person reduced to a process - service.

On the sciences front in an explicit way our poverty of knowledge ('education, education, education') becomes apparent as we try to place value on the environment and not only our personal use, but national use of the green and blue. A new economics is indeed called for.

In the current 2009 Reith Lectures (closing lecture this week) Professor Michael Sandel presents A New Citizenship. Within these lectures Prof Sandel explains how fees change services, values and expectations with examples of child care and blood supply in health care. Organisations have to be aware of their assets with laptops, PCs and umpteen other pieces of equipment and resource possessed of their own unique ID.

Yes, according to my interpretation of Hodges' model the points raised here belong in the political domain, and yet we are so befuddled, intoxicated and to a certain extent deluded with the sciences, technology and material things (de-vices?) that in contemplating poverty we must extend the political realm. ...

From now on the public's attitude to science as individuals and families, communities and nations is going to be critical to change our understanding and more importantly our experience of poverty - material, relative or otherwise.

Image source: BBC

Additional links:

The Simonyi Professorship: hair for the Public Understanding of Science at Oxford University

'Poverty' on W2tQ

Sciences care (knowledge) domain links resource

Political care (knowledge) domain links resource

Bee in my bonnet and a place to call home

For some years (over a decade) I've had a bee in my bonnet about the impact of relative-ly sudden house moves that older adults often make following sudden bereavement.

This prompted a first and no longer maintained website 'Beware Reflex Moves'.

This rather silent issue still stands and is arguably growing in volume.

There are surely a series of studies to be made here. Like most forms of life, the patient-nurse encounters of all those years ago have evolved: the ability of Jo(e) Public and their families to independently visit, select and move their relative into residential care is a new factor.

Self-funding frees up valuable resources as people can essentially circumvent the formal assessment processes of social services (and health), negotiating directly with the home of their choice for a place. This place may be many, many miles away from what was home. Amid increasing demand this arrangement works well much of the time. When it fails though, the impact is a personal and social catastrophe that can also reverberate across two health and social care economies. The person's original social services and their new location - that of their family.

Here the 'diagnosis' may not just be bereavement reaction / depression, but dementia too.

So, the advice remains beware of reflex moves.

Wish those bees had stayed in that bonnet - they might be safe now.....

Image source with thanks: http://www.flickr.com/photos/lelonopo/2378726643/