References for my last book ‘Enhancing health for living with dementia: care homes and care at home’

The references are given as below. This will give you a good flavour of the topics I wish to cover in my final book.

I am honoured that the Forewords to my book will be written by Prof Sube Banerjee, Chair in Dementia at Brighton and Sussex Medical School, Lisa Rodrigues and Lucy Frost.




Alderwick, H, Robertson, R, Appleby, J, Dunn, P, Maguire, D (on behalf of the King’s Fund (2015)) Better value in the NHS The role of changes in clinical practice.


Alldred DP, Standage C (2011) Medication errors in care homes. Nursing Times; 107: 24, early online publication.


Alzheimer’s Society (2015) Dementia 2015: aiming higher to transform lives.


Bahar-Fuchs A, Clare L, Woods B. Cognitive training and cognitive rehabilitation for persons with mild to moderate dementia of the Alzheimer’s or vascular type: a review. Alzheimers Res Ther. 2013 Aug 7;5(4):35. Review.


Banerjee S. Multimorbidity–older adults need health care that can count past one. Lancet. 2015 Feb 14;385(9968):587-9.


Bartlett, P. Sex, Dementia, Capacity and Care Homes Liverpool Law Rev (2010) 31:137–154 DOI 10.1007/s10991-010-9077-6, available at


Burns, A. (2014) Commentary by NHS England: Don’t let care home residents slip through the dementia net – Alistair Burns


Cancer Research UK (2015) Achieving world-class cancer outcomes: a strategy for England 2015-20.


Care England (2015) Care England calls for funding to support Living Wage (published on June 25, 2015)


Care Quality Commission (2014)  Cracks in the pathway. October 2014.


Elliot V, Williams A, Meyer J. Supporting staff to care for people with dementia who experience distress reactions. Nurs Older People. 2014 Aug;26(7):22-6. doi: 10.7748/nop.26.7.22.e616.


Fiske, J., Griffiths, J., Jamieson, R., Manger, D. (2000). Guidelines for oral health care for long stay patients and residents. Gerodontology, 17, 5564.


Goodman C, Davies SL, Gordon AL, Meyer J, Dening T, Gladman JR, Iliffe S, Zubair M, Bowman C, Victor C8, Martin FC. Relationships, expertise, incentives, and governance: supporting care home residents’ access to health care. An interview study from England. J Am Med Dir Assoc. 2015 May 1;16(5):427-32.


Guss, R. and the British Psychological Society (2014). Clinical Psychology in the Early Stage Dementia Care Pathway (Collated on behalf of the Faculty of the Psychology of Older People. A collaboration of people living with dementia and the Dementia Workstream Expert Reference Group.)


Health Foundation (2012) A strong call to action.


Humphries R. Integrated health and social care in England–Progress and prospects. Health Policy. 2015 Jul;119(7):856-9.


Iliffe S, Davies SL, Gordon AL, Schneider J, Dening T, Bowman C, Gage H, Martin FC, Gladman R, Victor C, Meyer J, Goodman C. Provision of NHS generalist and specialist services to care homes in England: review of surveys. Prim Health Care Res Dev. 2015 May 5:1-16. [Epub ahead of print]


Johnston B, Rogerson L, Macijauskiene J, Blaževičienė A, Cholewka P. An exploration of self-management support in the context of palliative nursing: a modified concept analysis. BMC Nurs. 2014 Jul 23;13:21.


Jones L, Candy B, Davis S, Elliott M2, Gola A, Harrington J, Kupeli N, Lord K, Moore K, Scott S, Vickerstaff V, Omar RZ, King M, Leavey G, Nazareth I, Sampson EL.Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach. Palliat Med. 2015 Sep 9.


Learner, S. (2014) Profile: ‘Caring for my father was a privilege I wished had never ended,’ says dementia campaigner Beth Britton (February 2014)


Lundgren D, Ernsth-Bravell M, Kåreholt I1. Leadership and the psychosocial work environment in old age care.Int J Older People Nurs. 2015 Jun 15.


McCormack B, Roberts T, Meyer J, Morgan D, Boscart V. Appreciating the ‘person’ in long-term care. Int J Older People Nurs. 2012 Dec;7(4):284-94.


McKeown J, Ryan T, Ingleton C, Clarke A.’You have to be mindful of whose story it is': the challenges of undertaking life story work with people with dementia and their family carers. Dementia (London). 2015 Mar;14(2):238-56.


Miranda-Castillo C, Woods B, Orrell M. People with dementia living alone: what are their needs and what kind of support are they receiving? Int Psychogeriatr. 2010 Jun;22(4):607-17.


NHS England (2014). Five year forward view: Time to deliver. London: NHS.


NICE commissioning guides [CMG48] Support for commissioning dementia care Published date: April 2013,


NICE quality standard [QS50] Mental wellbeing of older people in care homes Published date: December 2013


Oliver D, Healey F, Haines TP. Preventing falls and fall-related injuries in hospitals. Clin Geriatr Med. 2010 Nov;26(4):645-92.


Sampson EL, van der Steen JT, Pautex S, Svartzman P, Sacchi V, Van den Block L, Van Den Noortgate N. European palliative care guidelines: how well do they meet the needs of people with impaired cognition? BMJ Support Palliat Care. 2015 Sep;5(3):301-5.


UK Home Care Association. How to choose care.


UK Homecare Association (2013). UKHCA Dementia Strategy and Plan, February 2013. Wallington: UK Homecare Association.


Zenthöfer A, Cabrera T, Rammelsberg P, Hassel AJ. Improving oral health of institutionalized older people with diagnosed dementia. Aging Ment Health. 2015 Feb 13:1-6.


Living with dementia in care homes – not just ‘commissioning services’

An organic transformative cultural change towards a sense of ‘working together’ will drive the development of care home services which are driven ultimately by the people who need them.

The population of residents in care and nursing homes can often too have diverse and complex cognitive and behavioural needs. The mental health of residents, such as depression, can often be totally ignored, however remains amenable to treatment from psychological therapy. And yet care can be fragmented and poorly co-ordinated. Critical to this is understanding people’s individual backgrounds, or life stories, and, it is of course a workforce planning issue that staff of all grades including student nurses are fully trained in such approaches.

Poor co-ordination of care between different care environments can be distressing for all involved, not least NHS patients and carers, and can unfortunately lead to a breakdown of trust and compassion. The NHS is currently aiming for a whole system, sustainable model of integrated care. For example, multidisciplinary ‘vanguards’ have been established linking GPs to community beds, i.e. care homes, aiming for personalised care plans, improving person experience and avoiding hospital admissions where desirable.

“In-reach” services mean that a patient might be now cared for at home, enhanced by improvements in telecare and other technology innovations. Looking for high quality outcomes, rather than merely commissioning for services, arguably has become very important, with care homes well placed to become ‘community hubs’, priming reablement or rehabilitation after secondary care, or offering support for carers in the community. Reablement is being increasingly viewed as an opportunity allowing independent outcomes-focused living in the short and long term.

Care homes have come under recent scrutiny, not only in terms of high profile regulatory issues, but also in a shift in emphasis from minimal compliance to high quality outcomes from regulators. There has also been a greater focus on the need for anti-discriminatory language, the need to acknowledge the social care and nursing perspectives, and the desire to improve wellbeing and quality of care. But ensuring quality of care needs close partnership with private and voluntary sectors, in the context of trenchant local financial pressures. Austerity can never be an excuse for cutting back from less visible caring needs, such as mouth care, which requires expertise and full attention.

It is all too easy to use the term ‘person centred care’ as the solution to all quality of life and quality of care concerns, but it is now fully acknowledged that meaningful activity and occupation, high value staffing, and protection against “risky threats” such as neglect and abuse are all essential in delivering good care homes. People living with dementia tend to have specialist needs, such as co-morbidities such as frailty, often experiencing loneliness after the point of diagnosis, and this necessitates co-commissioning approach.

Tragically, too, there is a shortfall in quality and quality of research in care homes. Previously, it had become a default option for some to call people with dementia as having challenging behaviours, and yet we do need better research in synthesising perspectives of residents themselves, relatives and staff. Existential issues, such as religiosity or spirituality, might exist in residents, and it must surely be ethical for care providers to identify these issues accurately. End of life care requires in a care homes requires a complete understanding of residents’ life experiences in ‘accepting’ being in a care home, and is inevitably a delicate balancing act involving the views of ‘significant others’. Finally, we need to have much greater definition on what can cause the problems in residential care; such as poor physical environments, polypharmacy, poor mobility, falls, and infections. But we further must take a balanced approach with authentic leadership.

With recent devolution of other responsibility to local areas, such as in housing or transport, but one which emphasises looking for outcomes rather than commissioning services, hopefully residential care will be characterised in England by autonomy and a rich diversity. It seems sensible for us to take stock about where we want a joined up approach involving care homes to head, even if it is the case that most of us would not want to start from here.

Personhood-focused relationships: a moral drive to get away from the transactional nature of care

In a way, the approach thus far has been very straightforward.

Even after abolishing ‘asylums’ for mental illness, Tom Kitwood pointed out the remains of the asylum days. That is, with all the best will in the world from all parties involved, a tendency towards ‘warehousing’ of people with later stages of dementia. In such places, often framed as microcosms apart from the rest of society, ‘care’ is meant to take place, but historically with an overdependence on drug rounds rather than a resident’s need to have a haircut, for example. Whilst many professionals do not wish to see care as transactional, there is recurrent use of this language by think tanks and policy makers. This managerial approach fragments life into processes which can be easily identified and, if need be, costed.

One of my biggest surprises is re-reading Tom Kitwood’s “Dementia reconsidered” was his prophecy about the impact that the hybrid market of the NHS and Community Care Act (1990) might place. Care should be care regardless of setting, and care does not necessarily have to be institutionalised. But there are simple ways in which care institutions do not have to be cut off from the rest of the society – why not have WiFi in these places?

But of course, this goes way beyond WiFi.

The drive towards ‘relationships centred care’ was a reconfiguration of person-centred care, but which did not ignore personhood. Reminding myself of Kitwood’s flower, known a decade before the travesty at Mid Staffs, it is clear to see how fundamental aspects of personhood could have mitigated against bad care.

The 'Kitwood flower'

Whilst there is a lot of extremely good care, there are some ‘spoiled apples’ such as Mid Staffs – which subsequently has tried a ‘clean break’ and Winterbourne. But it would be a danger to regard them simply as ‘spoiled apples’ or freak occurrences, as indeed Morecambe Bay pointed out. Markets involve transactions. What Tom Kitwood warned about, albeit subtlely, is very important in my view. What has gone wrong in recent years is care environments being run for a ‘surplus’ or ‘profit’, with budgetary pressures such as PFI loan repayments. Staff themselves have been viewed as a commodity, and the tendency to run a healthy budget sheet has to be run a minimum of staff with minimum time to care – which can render initiatives such as 6Cs ineffective.

A “health transaction” which is under-resourced and rushed is likely to be unsafe. But that is not to say money solves everything. And while we’re on the money there seems to be plenty of money elsewhere, for example in finding a ‘cure for dementia’, the ultimate nirvana which Kitwood indeed warned about.


Neither the person living with dementia nor caregiver wish to be involved in a ‘woe is me’ ‘victimhood’ race to the bottom, but the pressures for not being appreciated properly are huge for both parties. Despite think tanks and policy makers wanting to ‘measure it’, the quality of person-centred care has been hard to define. That’s because, I believe, personhood is fundamentally about relationships too, as well as the uniqueness of the person at that particular place and time.

Kitwood’s own definition on page 8 of ‘Dementia reconsidered’ pulls no punches.

“Thus we arrive at a definition of personhood, as I shall use the term in this book. It is a standing or status that is bestowed upon one human being, by others, in the relationship and social being. It implies recognition, respect and trust. Both the accoeding of personhood, and the failure to do so, have consequences that are empirically testable.”

A quality of care for dementia is not necessarily the same as the quality of medication. Take for example the lack of effects of the vast majority of ‘dementia drugs’ on quality of life. But quality of care, one would pretty readily concede, is linked to the quality of relationships. The idea that relationships involve emotion and affect, and reciprocal, is clearly defined in the construct of ‘relationships centred care‘.

But as a financial transaction, this is hard to measure; and Kitwood conceded there is not real competition for the market to be effective (p.44). And striking is Kitwood’s claim that ‘In particular, people do not know what they need and can be easily deceived by ‘experts’ who act for economic motives’. Another view of this would be to all embracing and for it to be reframed yet again as ‘patient and family-centred care’. But note the reference to ‘care transactions’ on this page, and the construct appears more like a service to sell rather a frame of mind arguably.  And not everyone has a family.

In my final book on residential care (including care homes and nursing homes), I will reset the direction of the compass of ‘person-centred care’, a term used by Kitwood himself, to orient it more to what I think Tom Kitwood himself meant: “personhood focused relationships”, which can indeed be applied to residential care settings.

Trivialising dementia – too much inappropriate rocking of the boat?

When I wrote my highly successful book, “Living well with dementia”, using the phrase deliberately from the 2009 English dementia strategy document for England, I never knew the phrase was being bastardised so much for often very trivial initiatives in dementia.

On the other hand, I had huge delight in seeing its immediate relevance to a carers’ support group I went to last week.

I feel deeply hurt that the serious issues in my book, such as advocacy for mental capacity, the presentation of the cognitive neurology of the dementias, or the use of ambient-assisted technology have not been widely discussed amongst the wider community.

In that, I feel the book has failed.

I welcome proposals for the next Government to maximise money into actual service, and to re-establish health funding in line with other comparator countries.

Commissioning in dementia is now not based on what is best for the person for the person with dementia, but what is best for your Twitter commissioner friends.

I look forward to the Health and Wellbeing Boards playing a pivotal rôle in establishing some sort of normality for what commissioning in living well with dementia might be as a value-based outcome.

The strangehold of “shiny”, “off the shelf” “innovative packages”, in the drive for the current Government to ‘liberalise’ the financial market in dementia has acted for a cover for disturbing, unacceptable cuts in dementia service provision in the last few years.

I remember ‘boat rocking’ the first time around from the elegant work of Prof Debra Meyerson.

I do not wish to promote frontline professionals, many of whom have spent seven years at least at medical school or in their nursing training, to become lambs to the slaughter in the modern NHS and social care.

Keeping it real, we know that real frontline professionals in medicine and social care, even if they are not in a downright toxic environment requiring whistleblowing, can find it dangerous being risk appetitive.

Indeed, being risk appetitive, while great for innovation and leadership, can literally be deadly for patient safety.

The next Government has enough on its hands with enforcing care home standards and sanctioning for offences against the national minimum wage for paid carers as it is.

We have to think for a second for the vast army of paid workers in the NHS, as well as the rather well paid people who like their shiny new boxes, I feel.

The schism between the social media and what is happening at service level I think is most alarming, and perhaps symptomatic about how the health and social care services have begun to work in reality.

All too often, I am having first hand experience of busy frontline nurses being dragged in front of entrepreneurs in their local dementia economy to hear shills beginning, “I don’t have first hand experience of caring in dementia, but…”, before the hard sell.

This is tragically being reflected on the world stage too, though I do anticipate that the G7 legacy event from Japan which is looking carefully at their experience with care and support post diagnosis, next year, will be brilliant.

It is important for leaders in dementia to have authenticity.

I have severe doubts and misgivings about what gives the World Dementia Envoy the appropriate background and training in dementia for him to be in this important post.

It is all too easy for ‘thought leaders’ in corporate-like medical charities to have no formal qualifications or training in medicine, nursing, or social care, and opine nonetheless about weighty issues to do with policy.

I am concerned that the global ‘dementia friendly communities’ policy plank appears to have been straightjacketed through one charity in England, when it is patently obvious that various other charities such as the Joseph Rowntree Foundation have made a powerful contribution.

The media have largely not engaged in a discussion about living well with dementia, but engaged simply with Dementia Friends or a story arising out of that.

I am alarmed about the lack of plurality in the dementia research sector.

I think the All Party Parliamentary Group (“APPG”) for dementia have done some valuable work, but their lack of momentum on specialist nurses including Admiral nurses, spearheaded by the charity Dementia UK, seriously offends me.

I am sick of how the notion of ‘involvement’ of people with dementia has been abused in service provision mostly, although I am encouraged very much by initiatives such as from DEEP and Innovations in Dementia.

I think there have been genuine improvements in engaging people with dementia in research, through a body of work faithfully peer-reviewed in the Dementia Journal looking at heavy issues such as the meaning of real consent.

I am now going to draw the line of tokenistic involvement of people with dementia to front projects without any meaningful inclusion.

And in fairness, this tokenistic involvement is, I am aware, happening in various jurisdictions, not just England.

All too often, “co-production” has become code for ‘exploitation’ rather than ‘active partnership’.

The prevalence of dementia is actually falling in England, it is now thought.

The ‘dementia challenge’ was our challenge to making sure that we adequately safeguarded against people rent seeking from dementia since 2012.

In that, I think we have spectacularly failed.

I am overall very encouraged, however, with the success of the huge amount of work which has been done, including from the highly influential Alzheimer’s Society, and from the communitarian activism of “The Purple Angels”.

All this ‘radicalism’ has taken on a rather ugly, conformist twang.


Now is though time to ‘take stock’, as Baroness Sally Greengross, the current chair of the APPG on dementia, herself advised, as the new England dementia strategy is being drafted ahead of the completion of the current one in March 2015.