Developing a Palliative Care Model for People with Dementia in the Community c/o @PallC4Dementia

Challenge

People are living longer, which means that more of us will get age-related illnesses such as dementia. Dementia is caused by different diseases of the brain. These diseases affect the parts of the brain which are normally used for learning, memory and language. Although Dementia usually affects people as they get older, it’s not a normal part of ageing. Many people don’t realise that Dementia is a terminal illness. People may die from dementia, not just die with dementia. Palliative Care aims to improve the quality of life of people and their families who are facing an incurable, life-limiting illness, such as dementia. Palliative care involves actively looking for symptoms of any kind- physical, social, spiritual, or psychological - and providing excellent care to lessen these symptoms. People with dementia need palliative care just as much as people with cancer, but they often don’t get it.

Research Project (currently ongoing)

This project aims to improve the palliative care of people with dementia, and their families, by developing a “model”. This model aims to support people with dementia to live well at home in the community for as long as possible. The model will map out what services, assessments and treatments the person might need and where, so the health system can better organise their care. To develop a model that will work in Ireland, we must first learn what is already known about “good” palliative care for people with dementia. This mixed methods study will be carried out in several phases:

• We will conduct a review of the literature, to find all available research in this area. This will allow us to see what existing models and services are supported by research evidence.
• We will conduct a survey of healthcare workers and researchers to ask them two things. Firstly, what do they think an ideal model of dementia palliative care would look like? And secondly, what existing services providing dementia palliative care are there?

...

• ... Please visit the project's website for full details....

Phase 1: The research team designed a survey to i) identify existing models for dementia palliative care in Ireland and the UK, and ii) to identify key components of effective models. The survey is currently live on this website. The research team has also developed a protocol for a scoping review to guide their search of the literature for relevant research. The protocol is registered with PROSPERO ID: CRD42018091158, and the search is currently underway.

...

Follow us on Twitter

@PallC4Dementia | #PallCare4Dementia

For further information contact

Email: s.fox AT ucc.ie
Email: info AT aiihpc.org 

• ... Please visit the project's website for full details....

KT-EQUAL events: inc. Food and Nutrition in Later Life; Meeting the Needs of People Living with Dementia and their Carers ...

Dear KT-EQUAL supporters,
(Several other posts relating to SPARC and KT-EQUAL have been deleted, this has been retained for personal archive purposes. I learned a lot in attending some events organised under the auspices of this research programme, which stemmed from the IDEAS Factory in 2006.)

Hello. Here's an update about some of our activities and other news that may be of interest to you.

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Upcoming events programme
You are warmly invited to join our upcoming events:

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Food and Nutrition in Later Life
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When:    8 January 2013
Time:     9.30am - 16.15pm
Where:   University of Reading

The day features talks from experts, as well as an interactive "hands-on" showcase.  The event should be informative and fun, and provide an opportunity to meet and network with others who have personal or professional interests in food and nutrition for older people. The programme has been designed to appeal to a wide audience, including older adults, practitioners from health and social care, academic researchers, industry and charities.

Free to attend with lunch and refreshments included.

For further details and to book: ...

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Thinking outside the box - meeting the needs of people living with dementia and their carers
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When:    24 January 2013
Time:     9.00am - 16.45pm
Where:   The Forum, St James Parade, Bath, BA1 1UG

Dementia is a major challenge facing our health and social services over the next 20 years.  This has now been recognised by the government and significant resources are being directed towards early diagnosis, new treatments and management of people with dementia.

This funding will only be effective if we can develop news ways of supporting and managing people with dementia and there carers.  This will require a multidisciplinary team approach to problem solving and service delivery.  Health and Social Care Practitioners are familiar with the concept of multidisciplinary team working but often lack insights into dynamics of group working. We need to ensure that the interventions are effective and consider outcome measures that are appropriate for a long term neurodegenerative condition that are appropriate for patients and carers.

This event aims:

- to help researchers, health and social care professionals to think differently about meeting the needs of people who are living with dementia
- to consider the range of outcome measures that might be used to assess the benefit of an intervention
- to make researchers aware of the challenges and opportunities of multidisciplinary working
- to inform new researchers of the needs of people with dementia
- to trigger ideas for new research and provide a forum where participants can develop potential proposals

Please note that this event has limited places to ensure that representatives from several disciplines have the opportunity to participate.

Free to attend with lunch and refreshments included.

For further details and to register interest: ...

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Design for Living in Later Life
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When:    31 January 2013
Time:     10.00am - 16.30pm
Where:   The Open University, Milton Keynes

This event brings together the latest research ideas and developments about creating lifetime environments for people of all ages.

Free to attend with lunch and refreshments included.

For further details and to book: ...
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Keeping safe and maintaining independence: older people and sight loss
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When:    7 February 2013
Time:     9.30am - 15.45pm
Where:   Weetwood Hall Conference Centre and Hotel, Otley Road, Leeds, LS16 5PS

This workshop event is concerned with sight loss in later life and how we can enable people to live a quality life despite the difficulties that arise from diminished vision.

This event aims to raise awareness of sight loss and its impact and to increase knowledge and understanding of how to support people with sight loss. The programme will showcase new developments in research and practice that have the potential to inform practitioners.

Free to attend with lunch and refreshments included.

For further details and to book: ...
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New posts on the KT-EQUAL blog which may be of interest to you:

Housing LIN newsletter – Housing with Care Matters, December 2012

This reflects back on some of the successes the Housing Learning and Improvement Network (LIN) had in 2012, including the recent 2nd annual conference attended by over 300 people.

The conference also saw Norman Lamb, Minister for Care and Support Services, announce an additional £40m in this financial year for Disabled Facilities Grants. Details of this and a number of other recent policy and funding announcements to do with housing, care and support are featured in this end of year newsletter along with information on new learning resources from the Housing LIN, important new publications such as HAPPI2, calls for information, and details of Housing LIN forthcoming regional meetings and events.

New dementia website launched: dementiakt.ca

The Canadian Dementia Knowledge Translation Network (CDKTN) and the National Core for Neuroethics are pleased to announce the launch of the online Dementia Knowledge Translation (KT) Learning Centre. This website is targeted towards new and established dementia researchers engaged in KT.

------------------------------------------

Invitation to take part in a study

I am sending some details passed onto us by one of our members, based at TRL:

We are currently undertaking a European study regarding older road users and what different countries do about supporting mobility. The aim of our project is to investigate travel patterns and road safety amongst older road users across Europe, see how they are changing and look at what work is being undertaken to support improving mobility. As part of this we are looking to undertake interviews with possible major players as to what they are doing. Would anyone be interested in taking part in a telephone interview with one of our researchers on this topic?

If you are interested please contact Jenny Stannard, Principal Project Manager and Road Risk Consultant.
email: ...

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Recent Highlights

A new BBC film highlights the work of our i-design team in Cambridge: how do older people use technology? http://www.bbc.co.uk/news/technology-20664470

Falling off the Bandwagon: Sustaining digital engagement by older people - a series of consultation events have recently been undertaken exploring potential solutions to the challenges faced by older IT users. A major consultation event took place at St Georges House, Windsor focusing on solutions and how to implement them.  http://www.stgeorgeshouse.org/consultations/social-and-ethical-consultations/recent-consultations/

We were delighted that The Princess Royal presented a keynote address at our recent 'Showcase world class occupational therapy research to meet the needs of an ageing population' event. This event took place at the College of Occupational Therapists where The Princess Royal is Patron. It was a unique opportunity to bring together leading experts to discuss ways of meeting the challenges of an ageing population.
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I hope that this is helpful. It's been a pleasure to meet with some of you over the course of this year - look forward to further developments in 2013. If you have any queries and or comments/suggestions please do not hesitate to contact me.

As this eventful year draws to a close, we would like to thank you for all your continued support and extend seasons greetings.  All the very best for 2013.

Bangar
--------
S Bangar
KT-EQUAL Research Co-ordinator
School of Health and Related Research (ScHARR)
University of Sheffield
Regent Court, 30 Regent Street
Sheffield  S1 4DA

'Pad culture' ...

INDIVIDUAL

|

 INTERPERSONAL    :     SCIENCES               

HUMANISTIC --------------------------------------  MECHANISTIC      

SOCIOLOGY  :   POLITICAL 

|

GROUP

DEMENTIA SELF ORIENTATION - INSIGHT Listened to .. 'Hear me'? dignity and respect Mental capacity (awareness?) emotional distress Appears confused - Physical cause: dehydration, delirium..? [A shared convenience?: How many persons are assumed to be diagnosed with a dementia?]	in-CONTINENCE Place: [Home, Community Hospital, Residential care, Nursing Home] IT/Record systems 'Parity of Esteem' i Mental Health and Physical health 'Parity of Esteem' ii [Mental Health and Physical Health] AND Social Care Time: ASSESSMENT, Care Plan, Evaluation ...
'Pad Culture'	'My Pad' Culture - buy/sell £££ $$$ Standards of Care Nursing - Social Care policy - funding

File on 4 BBC Radio 4 21 June 2022 - 20:00hrs

Dementia: The Final Indignity

"Around 800,000 people have dementia in the UK. For those suffering from the illness, incontinence can often be seen an inevitable consequence - but that’s not always the case. Deemed as too embarrassing or taboo, it’s a topic that rarely hits the spotlight. Experts say preserving someone’s ability to go to the toilet is crucial to maintaining their dignity and quality of life and should be a priority in care settings. But is that always happening? A new report shown exclusively to File on 4 has looked at how continence care is being managed in hospitals – and how, in some cases, those who are continent are actively encouraged to soil themselves. Datshiane Navanayagam speaks to families who say their loved ones were ignored when it came to their continence needs in hospital and that the consequences have left them with health issues and requiring additional support. Nurses and medical staff say that continence training is often seen as a ‘Cinderella subject’. We also hear from dementia patients themselves about why maintaining your own dignity and independence is so crucial with this disease. With the government set to reveal a new dementia strategy this year, will continence care be placed higher up the agenda?"

Featherstone K, Northcott A, Boddington P, Edwards D, Vougioukalou S, Bale S, et al.
Understanding approaches to continence care for people living with dementia in acute hospital settings: an ethnographic study. Health Soc Care Deliv Res 2022;10(14). https://doi.org/10.3310/
QUVV2680

 
Source: Today BBC Radio 4, 21st June, 2022.

Presentation: 'An example of open research sharing Hodges’ Health Career Model'

From: Ulster University Open Research Conference 2026 

Simms, V., Jacobs, N., Magee, J., De Ornellas, K., Mollik, E., Kernohan, W. G., Leacock, J., Akter, J., Sempey, C., Beech, S. E., Naz Asif, R., Yap, L. K., & Miller, K. (2026, Jan 16). Ulster University Open Research Conference 2026: Conference Speaker Abstracts. Ulster University. Advance online publication. https://doi.org/10.21251/0d7780ce-ce97-468f-b5d5-69201ca90b20

Speaker: Professor George Kernohan 

School or Department: School of Nursing and Paramedic Science Ulster University 

Email: wg.kernohan AT ulster.ac.uk 

The area(s) of open research talk relates to: 
  Practice as research; Open data/ Open code 

Talk Title: An example of open research sharing Hodges’ Health Career Model 

Abstract: 

This paper examines a blog post [see below, pj], “Thinking about a comprehensive framework for dementia,” as a case study illustrating the integration of open research practices within dementia palliative care research. The post introduces the Hodges’ Health Career Model— a four-domain conceptual framework encompassing biomedical, psychological, social, and policy perspectives— to articulate the multidimensional nature of dementia and inform care planning. As an openly accessible research communication, the blog contributes to transparent and inclusive knowledge exchange beyond traditional academic channels. 

The blog exemplifies practice-as-research, translating conceptual development from theory into a form of scholarly exposition that invites engagement from practitioners, policymakers, carers, and people living with dementia. It forms part of a wider programme of work in which the research team openly documents methods, emerging findings, and reflections across scoping reviews, surveys, and service case studies hosted on the same platform. These materials complement peer-reviewed open access outputs, including open publications. 

The project demonstrates alignment with open research principles through prospective protocol registration: the scoping review protocol is publicly available on PROSPERO. The team’s prior work on blogging as a mechanism for knowledge mobilisation strengthens the methodological coherence of using this medium to disseminate conceptual frameworks and preliminary insights.

Although the blog does not itself provide underlying datasets or analytic code, it outlines methodological approaches that could facilitate future open data practices, particularly in qualitative and mixed-methods research. Overall, the case illustrates a pragmatic and pluralistic adoption of open research methods across dissemination, protocol transparency, and public engagement, offering a model for enhancing accessibility and reproducibility in dementia palliative care research.

.

Title: “Thinking about a comprehensive framework for dementia”

Author: Professor George Kernohan

Date: 7 November 2019

Link: https://pallcare4dementia.com/thinking-about-a-comprehensive-framework-for-dementia/

A paper of special note: 'The Relational Care Framework ...'

Doing a search on 'person-centered care' the following paper was listed. It is useful too in contrasting personhood, and selfhood in relation to dementia, through 'The Relational Care Framework'

Abstract

We argue that contemporary conceptualizations of “persons” have failed to achieve the moral goals of “person-centred care” (PCC, a model of dementia care developed by Tom Kitwood) and that they are detrimental to those receiving care, their families, and practitioners of care. We draw a distinction between personhood and selfhood, pointing out that continuity or maintenance of the latter is what is really at stake in dementia care. We then demonstrate how our conceptualization, which is one that privileges the lived experiences of people with dementia, and understands selfhood as formed relationally in connection with carers and the care environment, best captures Kitwood’s original idea. This conceptualization is also flexible enough to be applicable to the practice of caring for people at different stages of their dementia. Application of this conceptualization into PCC will best promote the well-being of people with dementia, while also encouraging respect and dignity in the care environment.

Matthew Tieu, Steve Matthews, The Relational Care Framework: Promoting Continuity or Maintenance of Selfhood in Person-Centered Care, The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, Volume 49, Issue 1, February 2024, 85–101, https://doi.org/10.1093/jmp/jhad044

The authors may find Hodges' model of relevance.

See also: 'subject' : 'object' : 'relational' : 'objective' : 'subjective' : 'personhood' : 'self' : 'identity'

ESRC PhD North West Doctoral Training Centre (NWDTC) CASE Studentships 2014: The spatial and social dynamics of public inclusion for people with dementia & Masters HI Sweden

The Faculty of Health and Medicine, Lancaster University offers an exciting opportunity for an ESRC funded +3 collaborative studentship for PhD research: The spatial and social dynamics of public inclusion for people with dementia

Suitably qualified candidates are invited to apply for this fully-funded three-year PhD CASE studentship which is a collaboration between the Centre for Ageing Research, at Lancaster University, and AgeUK Lancashire. The studentship covers full fees plus a Basic Maintenance Grant (£14,421 p.a.). The student will receive a small contribution for research costs.

The CASE studentship will draw on innovative participatory mixed methods to assess the impact of a range of dementia friendly community initiatives to explore how people with dementia experience social and spatial inclusion, across personal and public spaces. The research offers an opportunity to engage with important policy initiatives and how they impact upon people’s lives. The successful applicant will also benefit from the work placement opportunity within AgeUK Lancashire.

The studentship will be supervised by a team lead by Dr Katherine Froggatt and Professor Christine Milligan at Lancaster University and Mrs Diane Armstrong, Dementia Support Coordinator at AgeUK Lancashire.

Eligible candidates will be UK/EU honours graduate students with a good 2.1 from a recognised University, who show evidence of exceptional ability; they must have completed research methods training as part of an ESRC recognised Masters (or demonstrate research training to an equivalent standard) in a relevant health and social sciences discipline. Students who are currently undertaking a Masters degree (or equivalent) and are expecting to graduate during the 2013-14 academic session are also eligible to apply. Candidates should demonstrate a committed interest and experience in the field of dementia ageing research, preferably in community contexts.

Candidates must satisfy the ESRC's academic and residential eligibility requirements and be UK or EU citizens who have been resident in the UK for three years. Further information on eligibility can be downloaded from the ESRC web site: ...
...

To apply please submit the following documents electronically, by 5.00pm Thursday February 13th 2014, to Dr Katherine Froggatt: k.froggatt AT lancaster.ac.uk with ‘ESRC CASE studentship’ in the subject line:

• An up-to-date CV: including two named referees (one of whom should be your most recent academic tutor/supervisor); the applicant will be expected to have approached their referees to arrange for references (including anticipated grade if Masters is ongoing) in advance of shortlisting.
• A letter of application (not exceeding 2 pages) outlining your suitability for the CASE studentship and how you would anticipate approaching the research.
• A copy of your first degree and Master’s degree transcripts.

Shortlisted candidates should be available for interview on February 21^st 2014

PLUS from LinkedIn

On 01/06/14 1:53 PM, Sabine Koch wrote:
--------------------
In case you know somebody interested in advanced studies in HI please forward this message.
Thanks,
Sabine
----------------------------------------------------------------------------------------
Interested in a two year Master Programme in health informatics at Karolinska Institutet/Stockholm University in Sweden?

Apply online latest January 15th at ...

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

#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

RCN Dementia project: survey on the experience of care in general hospitals

Dear Sir/ Madam

The Royal College of Nursing is currently leading a project to help improve the care of people with dementia in general hospital settings. The project is being supported by the Department of Health and is being undertaken jointly with other professional bodies and voluntary sector organisations.

Are you someone living with dementia, or a family member/friend?

Do you have direct experience of care in a hospital setting?

If so, we would like to hear your views about what works, what makes it difficult and what really makes a difference. The responses you provide will help in developing practical resources & guidelines and help influence the way dementia care is delivered in these settings.

For your chance to win £100 of John Lewis vouchers and to help us learn more about your experience of care in hospital, please take a few moments to complete the survey which can be accessed online by clicking on the following link: http://www.employmentresearch.co.uk/dementia_carers.htm

...

Alternatively, we can send you a paper copy in the post along with a pre-paid envelope. Please contact Nikki Mills as above.

We are keen to get as many responses as possible so please do feel free to circulate this information as widely as possible. We are also attaching a flyer to promote the survey so if you are member of a group or organisation where you can display this, we would be most grateful.

The closing date for the survey will be Thursday 16th June 2011

If you need any further information about the project then please contact Nikki Mills (as above) or Rachel Thompson (Dementia Project Lead) using the contact details below.

Thank you for your support.

Best wishes

Rachel
Rachel Thompson
Dementia Project Lead
Royal College of Nursing
Nursing Department
Royal College of Nursing
20 Cavendish Square
London W1G 0RN

My source: RCN, Robert Clarkson LCNFT, Nursing Liaison PDG LCNFT.

Dementia research meets motorsports: Innovation Accelerator

Are you an early career researcher with an interest in dementia?

Would you like the chance to collaborate, innovate and compete?

Race Against Dementia and the DEMON Network, in partnership with Cranfield University, are inviting applications to participate in our Innovation Accelerator. This unique event will bring together teams of early career dementia scientists and similar stage experts from the motorsport industry, create diversity of thinking and break down ‘silos’ that currently exist between institutions and disciplines.

You will have the opportunity to think big and outside the box, develop ambitious ideas and learn from experts in the motorsports industry and other commercial enterprises with track records of rapid progress and innovation.

Ultimately, you will pitch to secure a hypothetical £20k seed funding prize. This competitive workshop will prepare you as an innovator to create successful applications for dementia research funding. It is also an opportunity to network and develop collaborative relationships.

More detail including how to apply.

My source: DEMON network.

TEDMED Great Challenges Google+ Hangout: Unraveling Dementia 31st Oct

Unraveling Dementia: The Race to Find Answers

Thursday, October 31st, 2PM EDT

Recent advances in research are describing more of what we need to know to prevent or treat Alzheimer's and dementia. Projects like the BRAIN Initiative, described at TEDMED 2013 by Dr. Rafael Yuste, and new medication discoveries, drive our opportunities to best understand dementia and imagine a future without it. Join our online conversation to talk about the latest breakthroughs in dementia, including research that has identified early lifestyle changes you can make to reduce your risk. 

...

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.

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:

Additional links:

Active Minds

1st KT-EQUAL Workshop: Enabling people with dementia and their carers through the use of new technologies

As you will know the mantle of SPARC is being passed to KT-EQUAL. This new EPSRC initiative is determined to ensure that older people, disabled people and society benefit from the nation's investment in research by making sure that research knowledge is transferred and used by those many stakeholders with an interest in the wellbeing and quality of life of older and disabled people. It will take a while for KT-EQUAL to be fully up-and-running, as staff have to be recruited and resources aligned to its special mission, however we do plan to run plenty of workshops in the months to come.

I am pleased to tell you that the first workshop, convened by Professor Gail Mountain, Enabling people with dementia and their carers through the use of new technologies will take place on 16th March, at Reading Town Hall (very near the railway station).

Dementia is an area of significant policy concern, demonstrated through the forthcoming publication of the National Dementia Strategy. This will identify targets for early diagnosis and improved interventions to promote better care. This workshop will provide participants with illustrations of best practice from existing and current research with a focus upon use of technologies which can promote enablement and quality of life for people living with dementia and their carers.

The workshop is free but places are limited, so please register your interest as soon as possible via the SPARC website www.sparc.ac.uk and follow the links.

Stop Press there are two new interviews with researchers available on the SPARC website: Dr Meredith Shafto talks about her research into those annoying tip of the tongue lapses which seem to become more familiar with advancing years, and Dr Maria Wolters discusses her research into improving computerised speech used by automated call centres, lifts, sat navs and other devices. These can be found on the audio interview panel on the right hand side of the home page. There are now 20 interviews available about a broad range of SPARC projects. Also, the SPARC web site has executive summaries of most of these projects.

Best wishes

Peter Lansley

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Professor Peter Lansley, BSc, MSc, PhD, MCIOB, FCOT
Director, SPARC - Strategic Promotion of Ageing Research Capacity
School of Construction Management and Engineering, URS Building,
University of Reading, Whiteknights, PO Box 219, Reading, RG6 6AW, UK
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Dear McKinsey and Company, Re. "The era of exponential improvement in healthcare?"

Re. Your article:

The era of exponential improvement in healthcare?

(By Shubham Singhal and Stephanie Carlto)

Technology-driven innovation holds the potential to improve our understanding of patients, enable the delivery of more convenient, individualized care—and create $345 billion to $420 billion in value by 2025.

Healthcare advances have delivered great benefits to society, bringing material improvements in average life spans and quality of life.¹ Yet these improvements have come at a cost—an ever-expanding portion of the US GDP is being consumed by healthcare expenses.² Could technology, enabling delivery of healthcare advances while improving affordability, be part of the solution? We have reviewed the evidence, done the math, and identified technology-enabled use cases that could create between $350 billion and $410 billion in annual value by 2025 (out of the $5.34 trillion in healthcare spending projected for that year³ ).

Read more ...

<>

But how would we recognise the era of exponential improvement in healthcare?

SELF - individual

|

INTERPERSONAL : SCIENCES

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

SOCIOLOGY : POLITICAL

|

group - POPULATION

The exponential benefits realised 'elsewhere' in global, local and glocal health and healthcare systems finally sees the achievement of parity of esteem with mental health not only fully funded, but designated as the key that must be turned 4 happiness. Despite the diametrical opposition of this domain to the political domain, there is a breakthrough in policy makers and the body politic prioritising "The Long Now"

"Predictions of an exponential increase in people living with dementia in the coming 30 years require evidence-based strategies for advancing dementia care and maximizing independent living. However, the evidence required to inform priorities for enabling improvements in dementia care is rarely presented in a way that stimulates and sustains political interests."  Martin, O’Connor, & Jackson (2018).

Community-based healthcare becomes  the norm and the educational, preventive and sustainable ethos for health and healthcare systems is adopted globally. Look at the readiness and response-to potential epidemic crises, plus  interventions in population health.  Exponential benefits are accrued. Evidence - look at the number of  (new) hospital beds. The community IS the market.

Exponential growth in global healthcare funding, health information for all, access to universal health care.  Social Determinants of Health not just a vision: but enacted and ongoing #SDoH-X. Evidence - climate change slowing, air quality improving - the 21st Century truly begins ...

Martin, A., O’Connor, S., & Jackson, C. (2018). A scoping review of gaps and priorities in dementia care in Europe. Dementia. https://doi.org/10.1177/1471301218816250

My source:
email - McKinsey Insights

The UK Dementia Awards 2026

Dear CHAIN member,

We would like to draw your attention to the following opportunity. Please pass on as appropriate. Thank you.

Dementia Community

The UK Dementia Awards 2026

The awards are judged by a panel of dementia experts, including people with lived experience, ensuring that every nomination is seen, valued, and understood.

Whether nominating a colleague, a team, a service, or someone whose quiet dedication deserves the spotlight, this is the chance to say: you matter, and your work matters too.

Friday 27 February 2026, 5pm: Nominations Close.

For more details please see: https://journalofdementiacare.co.uk/awards/listings

Regards,

Irina Johnston

CHAIN Administrative Assistant

 

If you wish to publicise information on the CHAIN Network please email your request to: enquiries AT chain-network.org.uk

 

CHAIN - Contact, Help, Advice and Information Network – is an online international network for people working in health and social care. For more information on CHAIN and joining the network please visit website: www.chain-network.org.uk

 

Follow CHAIN on X: @CHAIN_Network ; Connect with CHAIN on LinkedIn

Previously: 'dementia' : 'carer'

Extraordinary lives: Demographic influences on academic studies - Life Writing, Life Story Work

Recent reading for studies at Lancaster included
Ethics of Internet Research: Contesting the Human Subjects Research Model

Beyond a week's focus on ethics the above refers to Life Writing:

The study of Life Writing spans many disciplines, and represents 'a fast changing terrain' which is concerned with the study of the writing of lives, encompassing auto/biography as well as aspects of life story that originate outside the written form, such as oral history, testimony, and artifacts such as photography and the visual arts (Jolly, 2001, p. ix). The written text is viewed as a vehicle for an individual's construction of identity, the personal narrative that it records being

…a fundamental means by which people comprehend their own lives and present a 'self' to their audience. (Borland, 1991, p. 71)
...
The multiple approaches taken in Life Writing research can arguably be attributed to the multidisciplinary background of its practitioners. Like Internet researchers, those researching Life Writing have been trained in a variety of disciplines including anthropology, sociology, history, linguistics and literary theory. These various disciplines have contributed a range of insights into the collection of oral history and analysis of the resultant texts (Gluck and Patai, 1991, p. 3). Ethical guidelines for the conduct of Life Writing researchers, such as those published by the Oral History Society in the UK, appear to follow a human subjects model, focussing on the undertaking of the interview, and restricting discussion of the resultant text to issues of copyright. Yet practitioners emphasise the need to remember that as:

…the typical product of an interview is a text, not a reproduction of reality …models of textuality [are] therefore needed. (Gluck and Patai, 1991, p. 3)

What chance is there that Life Writing will be - is being influenced by current demographic and societal trends? Trends and challenges that inevitably present new meanings for history within life and with this new ethical issues? While life writing is clearly an established discipline, how might it develop and what other challenges might apply?

In health and social care Life Story Work is an important part in of assessment and interventions. Has it been discussed, is it appropriate, completed and if so, is this work available and accessible? Do we need people beyond the existing establishment with a dedicated set of skills and knowledge to engage with people diagnosed early on, or will treatments soon make this less of an issue? Will dementia and early dementia especially, with the latest technology prompt new perspectives, or reinforce existing life writing practices? What is an archive? In life story work these people, persons, individuals (and their lives?) are more than subjects.

There are many overlaps already in the mental health state of past and present national leaders, while health services continue to bridge the dementia gap in diagnosis. Biography: world leaders, other recognised lives in Life Story Work and seeking to preserve personal identities in dementia care: clearly these are figures that count.

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.

Original source: Community Informatics (Journal) list - thanks to Michael Gurstein.

Boxing 'II'

As young children we may encounter 'boxing' quite early on. This first experience, which we may or may not wholly remember is undoubtedly critical to our personality and subsequent psyche. Such early experiences influence our ability to 'look after ourselves', how we deal with bullies, anxiety, the potential for conflict and develop assertiveness skills. When a 'scrap' happens it can be quite sudden, that total impact of everything out of control, sheer danger and literal impacts. The environment might be nursery, playground, cloak room and the presence of peers as onlookers can be another key factor.

In the late 1960s early 70s I found some old boxing gloves under the stairs at my nan's. I had a handful of uncles on mum's side (just two now - Uncles Tom and Ken!) and the gloves had clearly been swung and jabbed down the line. I don't count myself as a fighter, unless someone tries to push their beliefs - without invitation - down my throat. Then it will be more a case of a reflex action. The 'arc' being comprised of vomit. In the school playground I learned to talk my way out of trouble, resorting to humour at times; as you learn to deploy whatever intellect you might have judiciously. Legs are essential to a boxer:

“First your legs go. Then you lose your reflexes. Then you lose your friends”

Willie Pep

My legs helped me a time or two.

Not too many years ago, so a new generation is in the frame and a nephew had boxing gloves of his very own. He trained with a local club and had some fights. I didn't go watching, but didn't make too big a big fuss either. He doesn't box now as it happens; he's married with family and busy earning a living. Over four decades I've cared for several gentleman, former boxers who developed dementia. Hence, my lack of enthusiasm. (Although the selective literature listed below does not reflect it, women's boxing is of course also well established.) The extent to which boxing caused their dementia is not the point here. It's trying to acknowledge the ongoing debate: the risks, the history (Ancient Greece 688BC), the discipline, sense of belonging and self-respect it can instill. Of course a great many sports can do this. Of course, I listened very attentively as one gent could still relate how perhaps he had been 'used' in terms of the fights and purses back in the 50s-60s. Vulnerable adults of today and yesteryear. Today American Football is concerned about head injuries, in football heading the ball repeatedly is in the news. Technology should be able to reduce the risks even more and protect individuals from injury that is obvious and more insidious in nature.

Some of these points I've considered in Hodges' model as follows:

individual

|

INTERPERSONAL : SCIENCES

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

SOCIOLOGY : POLITICAL

|

group

SELF self-awareness Identity self-belief way-finding dementia - cognitive damage personality change aggression tactics  strategy motivation training attitude self-discipline ethics mental health - mental capacity emotions mood Personal safety	boxing technique reflexes speed movement balance punching fitness weight, reach, statistics THE RING stamina nutrition hydration concussion sub-concussive exposure models unconscious knockout Head - Brain injuries physics: force time (duration) momentum technology - sensor equipped gloves Sports Medicine Research Headgear Safety - Evidence Medical risks
OTHER Ethnographics Coaches <-> Boxers Mentors Support network THE STREET personal history-family History sports history trainer friends club Sporting behaviour family friends Socio-	Rules (changes) Conflict Power promotion media finance codification rules Amateur Professional Refereeing Regulating bodies Governance Law Contracts Economics

Selective reading:

Sacha, J. (2017). Fighting Feelings. Sociological Perspectives, 60(1), 77-94.

Erlanger, D. (2015). Exposure to sub-concussive head injury in boxing and other sports. Brain Injury, 29(2), 171-4.

Falvey, &., & Mccrory, P. (2015). Because not all blows to the head are the same. British Journal of Sports Medicine, 49(17), 1091.

Mcintosh, A., & Patton, D. (2015). Boxing headguard performance in punch machine tests. British Journal of Sports Medicine, British Journal of Sports Medicine, 14 July 2015.

http://www.welshboxers.com/quotes/

See related post 2016: 'Boxing' I

1 in 3 will be older adults by 2025 in Japan

In June Dr Mayumi Hayashi described Japan's vision of 'total care' for its older population in HSJ. The article that prompts this post follows another with lessons for England.

Referring to a "2025 vision" this forward thinking has its roots in established systems of healthcare set up in 1961 and social care established in 2000 (p.25).

Care integration is not new as a fundamental issue in health and social care. It is for me a career legacy issue. As a student nurse it was discussed and debated, closely allied with multidisciplinary and holistic (joined up physical and mental health) care. Even now 37 years later it will drive many arguments and policy deliberations in the run up to the next election here.

Many nations are faced with stark demographics. As the population ages and works its way through wooden blocks, Rubik cubes, it is the population pyramid that takes on increasing significance.


Dr Hayashi lists the need for inclusion, integration and continuation of four components that are essential to the realisation of this vision:

• maximising the integration of healthcare and social care;
• promoting policies for prevention and outreach together with safeguarding;
• embedding supported living programmes and dementia friendly community initiatives; and
• addressing “late life specific” housing needs.

I have mapped these to Hodges' model below:

individual
INTERPERSONAL : SCIENCES

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

SOCIOLOGY : POLITICAL

group

embedding supported living programmes and dementia friendly community initiatives	integration of health and social care
"late life specific" housing needs (integration of health and social care)	promoting policies for prevention and outreach, together with safeguarding

It becomes clear to see in Japan, China and other nations how telecare and smart homes have a role to play. Getting the basics of integrated care resolved firstly is the prerequisite whatever the culture.

Where achieved the integration of health and social care can act as a diagonal brace as it straddles two care domains. Perhaps the model also reflects the ongoing challenges of parity in esteem in mental health care and physical care; and the funding ambiguity for people living with dementia as opposed to other medical conditions?

In January 2014 the FT Weekend magazine also featured an article on ageing in Japan.

Hayashi, M. (2014) Japan's vision of a 'total care' future looks bright, Health Service Journal, 124, 6404, 25-27. 

FT magazine cover image:
https://www.facebook.com/financialtimes/photos/a.10150157857040750.297340.8860325749/10152119294570750/?type=1

Books, Papers and Conferences ...

At present I'm reviewing a paper for a journal on an education topic - nearly complete.

Communication Skills
for Effective Dementia Care

I'm five chapters into the ten chapter book -

Communication Skills for Effective Dementia Care

A Practical Guide to Communication and Interaction Training (CAIT)

- this is for a journal so it will be a 'review'.

 

 

800 words, or thereabouts are needed on Hodges' model and its utility in reflecting, deliberating and comprehending the environment and climate change. I have some notes already. 

Mathematics and Art: A Cultural History

Yesterday I had to visit a neighbour. A card for an undelivered item: a parcel. 

What could this be? 

It was quite a big box. 576 pages worth to be exact and a larger format book 9.5 x 12 in that instantly shouted 'quality'.

The book is not new, but is lovely to discover ... 

In my message to the publisher I highlighted my non-mathematical status, but great interest in topics within mathematics and the disciplinary bridges from maths - physics; sciences and humanities and of course mathematics and art.

I'm really grateful (especially to Princeton University Press) to receive both these books.

The dementia care title will also help me complete the two-part paper on Hodges' model, deprivation of liberty and threshold concepts. There are so many strategies and techniques outlined for carers both formal and informal. In July reading this book will also assist with a presentation at the Threshold Concepts conference.

Now well into the new year - the revisions to the paper on the SDGs and Hodges' model is also a priority.

To manage time I've put twitter down, but clearly with the above some tweets will follow in due course.

Then finally it will also be time to leave this blog alone for a time - well fewer posts at least ...

 

'Recall Me Maybe' | FT Drama

Stephen Fry and Gemma Whelan star in a new FT drama written by David Baddiel, exploring AI, memory and truth. Fry plays a grandfather with dementia who uses AI to fill in gaps in his memory. While reviewing the archive of his life his family makes a shocking discovery. Which memories are really true? And how AI is defining who we are?

See also: FT Standpoint unveils David Baddiel digital-first drama about AI and dementia -https://www.dropmedia.co.uk/ft-standpoint-unveils-david-baddiel-digital-first-drama-about-ai-and-dementia/

My source: Times Radio. Dom Joly in for Ayesha Hazarika. 1300-1600 BST From 1405-21.
https://www.thetimes.com/radio/show/20250919-32052/2025-09-19

I still need to catch up with last weekend's FT.
https://www.ft.com/video/a4d2ba19-051e-47c5-98ae-c27c59f1b3f0