Category Archives: Conferences

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Should we use ‘scare tactics’ in promoting the urgency of dementia?

 

A very fortunate happened yesterday. A London black cabbie had promised me to drive me to the ExCeL centre in London, if I paid him, to attend first day the main conference of the Alzheimer’s Association International Conference.

 

This year, there are no ‘sunny uplands’. There is normally pretty active pre-briefing of the latest phase III trial of a possible cure for dementia. Not this year.

 

But I found the atmosphere of all the junior and senior scientists to be ‘buzzing’. The amount of detail and rigour in scientific method in discovering the neural susbtrates of brain function, of relevance of Alzheimer’s disease, was phenomenal.

 

I last did my Ph.D. in Cambridge between 1997 and 2000 with Prof John Hodges, a world expert in the frontotemporal dementia form of dementia. Frontotemporal dementia is still an important cause of dementia.

 

That black cabbie told me how his mother had been ultimately diagnosed with dementia, although she was first misdiagnosed with dementia in a hospital by a locum doctor when she had a urinary tract infection. She didn’t know what day of the week it was. She thought she was in a hotel. She had heard of Margaret Thatcher though.

 

There is clearly progress being made in the accuracy of diagnosing dementia through biomarkers in cerebrospinal fluid. But I was a junior physician at the National Hospital for Neurology and Neurosurgery, it used to take me at least 30 minutes to get this sample off a patient from using a special needle. And even then that was for inpatients.

 

The aim is with a sophisticated knowledge of the molecular biology of the process causing an individual’s dementia we might be able to slow down its progression more effectively.

 

This is of course partly an admission that the current method of diagnosis by ‘clinical acumen’ is subject to too much error, but the essential issue remains that many in the UK still don’t receive their diagnosis of dementia on time. And the subsequent post diagnostic care and support, for both an individual with dementia and carer, can be not that good.

 

You can’t help feel but proud at the sheer devotion of the scientists around the world, in ‘fighting dementia’, but I on the whole wish they would simply say they love neuroscience. An orange being stripped of its segments and peel, from an advertising company for the Alzheimer’s Research UK, both attracted massive praise and some criticism.

 

Terms such as ‘burden’ still continue to exist with dementia, and there’s no doubt that there are negative aspects to dementia. But I know from close family, who are loved ones, who happen to have dementia, that there’s a lot more to them than the certainty of their diagnoses (or not).

 

 

@dr_shibley

 

 

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My session at the end of life in dementia community of practice

I will on June 14th 2017 present a session on legal and ethical principles in end of life in dementia for a community of practice run for 38 specialists, for Dementia UK and Hospice UK.

Talk 1

I will give a hour one talk on the following topics.

  • Definition of end of life
  • Legal method
  • Introduction to ethical dilemmas
  • Four ethical principles
  • Duty of care
  • Mental capacity
  • Best interests and advocates
  • Advance decisions
  • Abuse and neglect
  • Advance care planning
  • Deprivation of liberty safeguards
  • UN Convention on Rights for Persons with Disabilities
  • Artificial nutrition and hydration
  • Do not attempt resuscitation
  • Assisted suicide and euthanasia

I will then discuss with the group collective responses to eight legal and ethical scenarios.

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Revisiting the diagnosis of dementia: a response to Howard.

In yesterday’s online Lancet Psychiatry, Prof Rob Howard opined openly whether a group of frequent attenders at international conferences, living with dementia, were representative of that general population of those who had been diagnosed with dementia (Howard, 2017).

I enclose tweeted pictures of the article from the Lancet Psychiatry’s own Twitter thread here.

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One point in Howard’s argument appears to be that the ‘frequent attenders’ run the danger of making other people with dementia feel as if they are not living up to expectations, in say delivering public talks to big audiences. I think it is easy to clear up here an important potential misconception – that these people living with dementia do not hold themselves out to be ‘representatives’ of the 48 million people living with dementia. But that is not to say they do not consider themselves as part of an important social movement with important international legal rights. And many people newly diagnosed with dementia, facing quite massive upheavals in their personal and professional identity, find (rightly) hurtful the accusation of ‘you don’t look as if you have dementia’. To which, the reply has been, often: “Well, please tell me, what does a person with dementia look like?”  It is this sense of otherness, or being different, which is a barrier to full acceptance and inclusion of people with dementia (indeed one of the criticisms of ‘dementia friendly communities’ is that it unwittingly emboldens this sense of otherness). But there is no reason to disbelieve that any of the frequent attenders has been given a diagnosis of dementia in the sense that bystanders do not have access to the detailed findings their respective clinicians have. There has, for example, been a plethora of articles on how nobody should be ‘diagnosed’ at a distance – including Donald Trump (see here).

It is proposed from the literature that dementia – or major neurocognitive disorder – by definition then seems to threaten the identity and selfhood of the individual at risk, leading earlier writers to see dementia as ‘the loss of self’ or ‘loss of the person’ (Higgs and Gilleard, 2016). I would contend that the identity further imposed as a high profile public figure living with a condition further adds to issues of personhood and identity unexplored, which become problematic if at any stage a diagnosis later becomes questioned (for example for lack of response to pharmacological therapeutic agents.) Recent approaches in post-diagnostic support have indeed tried to build up a continuum of the life of a person before a diagnosis of dementia and his or current life; for example, the process of ‘life story’ has been used specifically to enable care staff to see the person behind the patient; allow family carers to uphold their relatives’ personhood; enable the voice of the person with dementia to be heard (McKeown et al., 2010). It has becoming increasingly recognised that research on the experience of receiving and living with a diagnosis of dementia is sparse, and that people newly diagnosed with dementia arguably need a mechanism of understanding and making sense of the diagnosis to help them deal with issues of loss and to make positive adjustments to their lives through employing specific coping strategies (Lee, Roen and Thornton, 2014).

A regularly exercised statistic by people wishing to raise funds for dementia, outside of the mechanism of general taxation for the NHS or social care, is that dementia is the most feared condition in adulthood (Various news agencies, 2014). For example, in one poll published in 2014, a finding was that just under four per cent said they were frightened about getting a heart condition and less than one per cent were concerned about developing diabetes, according to a survey of 500 adults aged over 50 from across the UK who were asked which condition they feared most; two thirds of people over the age of 50 fear that they will develop the condition, while just one in 10 said they were frightened about getting cancer (various news agencies, 2014). The reaction of people receiving a diagnosis of dementia below the age of 65, so-called young onset dementia, is informative. Patients perceive changes in their identity while caregivers perceive changes in the caregiver-patient relationship. Both can experience grief, isolation, and stigma (Spreadbury and Kipps, 2017). Across European Union countries stigma has been found to influence late presentation to services (through the minimisation and concealment of symptoms), delays in recognition and diagnosis after presentation (through the belief that services had little to offer), and service response to dementia (through therapeutic nihilism and pessimism regarding prognosis) (Vernooij-Dassen et al., 2005; Jolley and Benbow, 2000).

In this recent opinion article in the Lancet Psychiatry, Prof Rob Howard, chair of psychiatry at University College, London firmly argues for the importance of listening to the lived experiences of people with dementia (Howard, 2017). But the line which really strikes you from the piece is: “Put bluntly, they are not a bit like the people with dementia that I have diagnosed and treated.” In English policy, the policy and care purpose about an accurate and timely diagnosis of dementia was so that people could finally have a coherent medical explanation for their symptoms, and that through various specialties could be enabled to live with the condition, along with other comorbidities. In this view, an earlier diagnosis is meant to be of benefit to a person newly diagnosed with dementia, so that clinical care planning might be initiated, including both pharmacological and non-pharmacological interventions, as well as financial or legal guidance (for example, Rahman, 2017). In other words, the length of time actually living with dementia ‘well’ from the event of diagnosis is longer. But we do know this can be far from reality. In England, there has been much success in closing the ‘diagnosis gap’ amongst clinical commissioning groups (e.g. Fox et al., 2014). It has been long recognised that people living with dementia would often have to wait for a crisis late on in their condition or might enter a care home before receiving a formal diagnosis of dementia, and recent policy initiatives such as the Prime Minister’s Dementia Challenge 2020 have tried to remedy this (Department of Health, 2015).

Whatever the ‘rights’ and ‘wrongs’ of people with dementia being used as ambassadors for charity in dementia, akin to brand ambassadors in marketing utilised by big corporates, the intention is undoubtedly well meaning. An international stakeholder group, Dementia Alliance International, is a collective of people living with dementia setting their own agenda for quality of life of people beyond a diagnosis of dementia (https://www.dementiaallianceinternational.org). The medical profession has tended to see people with dementia in the latter ‘stages’ of dementia (although the linearity of staging of the hundreds of dementias including the dementia of Alzheimer type is hotly disputed), so there is an issue with whether advocates living with dementia are ‘like’ people normally seen in clinic. People normally admitted to secondary care are ill compared to people living with a chronic long term condition in the community with health assets optimised and illness at bay. So it might genuinely be that the medical profession is genuinely unused to the idea of people living ‘well’ with dementia (the high bar that ‘living well’ is for all of us). These issues rarely get aired in public, but now is probably the time the discussion takes place constructively and openly.

Howard states explicitly: “I have no reason to doubt that these people sincerely believe that they have dementia and I hope in turn that they will not see this piece as an attack upon them.” Encouraging people to be fully integrated in the community to inspire others to identify themselves about being able to live with dementia in a contented way is, of course, precisely the aim of English policy in the ‘dementia friendly communities’. Howard is definitely not arguing that high-profile activists with dementia are ‘living a lie’, although phenomena such as the “imposter syndrome” exist. Cohen (2015) writes of the “imposter syndrome: “the fear of being exposed, that you don’t deserve your success, aren’t as good as others – and could be “found out” at any moment.” English policy, indeed international policy, in dementia combines an odd split personality where charities in dementia try on the whole to campaign solely on the dementia identity and yet try to convey that the identity of a person is more than his or her label of dementia (hence people raising placards in photoshoots: “putting the ME back in deMEntia”). The issue that activists in dementia at international conferences is that their identity ’as having dementia’ becomes emboldened such that, once public about their diagnostic label, it would be hard for them to become ‘undiagnosed’ without the potential for loss of face.

But I do think likewise that professionals charged with making a diagnosis of dementia should not be intimidated into not reviewing their diagnoses, when so much hinges on the diagnosis. We can all agree that the disclosure of the diagnosis of dementia is indeed a life-changing event. But a diagnosis of any medical condition has to be reviewed as further information comes to light either supporting or not supporting an original diagnosis. Symptoms vary according to how advanced the biology of a condition might be. To review a diagnosis of dementia is not to suggest that a recipient of a diagnosis of dementia is a fraud, or has deliberately misled a clinician, in the same way that a change of diagnosis should not immediately lead to accusations of blame or that someone somewhere has “made a mistake” necessarily. We know that some diagnoses of dementia, especially ones of people in younger age groups, fall within a very grey area where there is considerable uncertainty, where certain investigations can indeed appear normal such as the behavioural variant of frontotemporal dementia or levy Body dementia.

Howard’s well written piece I think is important for two further reasons, if one assumes that activists with dementia appearing in high profile are doing us all a great service. Firstly, the need to keep the diagnosis under review is in all of our interests. Accurate diagnosis of most diseases that cause dementia depends on post mortem neuropathological examination, and the mismatch between in vivo and post mortem diagnoses can be stark (Love, 2005). Secondly, the possibility does genuinely remain that these high profile people living with dementia, who seem relatively mobile and articulate, do represent an important subgroup of those people living with dementia. They could represent a group of younger patients who are physically active, benefit from social networking (whether virtually or in ‘engagement’ events), and keep their brains active. All of these are indeed recommendations in promoting ‘brain health’, or slowing the rate of decline of a dementia, as reviewed in the evidence comprising the recent Blackfriars Consensus (e.g. Lincoln et al., 2014). The mere act of packing a suitcase, jumping on a train or plane and giving a presentation might have a genuine therapeutic effect as yet untested through any randomised control trial for post diagnostic support for dementia. It is known that levels of arousal and motivation and affect can be major determinants of cognitive function, for example a boost in cognitive performance in older adults has been found after a bout of exercise (reported by Johnson et al., 2016).

As such, it could be that the original diagnosis of dementia was inaccurate, and would have been fulfilled though the diagnosis of ‘mild cognitive impairment’. Since its inception in 1999 (Petersen et al., 1999), the concept of mild cognitive impairment (MCI) has evolved. The original criteria for MCI focussed on memory impairment, but during recent years, they have been expanded to define subtypes, including non-amnestic (without memory impairment), as well as single and multi-domain impaired forms (Petersen, 2004). Efficient ways of identifying the ‘at risk’ population (conversion from any pre-dementia state to dementia) are required for larger-scale research studies (Ozer et al., 2016). Internationally there is no consensus on the proportion of people with MCI who ‘convert’ to dementia, and indeed it has become the nirvana of the pharm-focused research to identify such susceptible individuals early-on through sophisticated tests such as biomarkers (e.g. Bos et al., 2017). Looking at Howard’s predicament unconstructively, it could be that some of the people he identifies could or should be ‘ambassadors’ for living well with mild cognitive impairment, but the problem exists that there is no Mild Cognitive Impairment Society.  It is perhaps worth noting here that my mere mention of this reinforces a cliff-edge phenomenon between ‘mild cognitive impairment’, where being a mild cognitive impairment is unlikely to lead to as many doors for discussing your lived experience. And yet this difference between mild cognitive impairment and dementia is simply an artefact of how senior clinicians have desired to draw up the arbitrary criteria for cognitive disorders at any one time. Looking at Howard’s observation helpfully, it could be that this group of people shines light on a possible therapeutic window when a psychosocial intervention could most benefit people facing the potential prospect of a future diagnosis of dementia. But it is still indeed the case that people who are expected to be living with dementia will find their diagnoses being questioned quite offensive.

Clinicians should not in the business of undermining people, and I feel Howard’s piece is a long way from that. On the contrary, Howard, as a senior specialist in dementia, holds an important and valid view which merits scrutiny and questioning about assumptions about living with dementia, professional, personal or otherwise. There will have been many people to have benefited from a prompt timely diagnosis of dementia, but there will be some, unfortunately, who will have received harm from receiving the wrong diagnosis (harm for being treated for the wrong illness and not being treated for the right illness). We do not collect in England how many people received a wrong diagnosis of dementia, from having made intense efforts to improve the diagnosis rate, though there is now acknowledgement that this was a policy drive which may have gone too far. Like dementia itself, the various arguments are incredibly complex.

 

 

References

Bos I, Vos SJ, Frölich L, Kornhuber J, Wiltfang J, Maier W, Peters O, Rüther E, Engelborghs S, Niemantsverdriet E, De Roeck EE, Tsolaki M, Freund-Levi Y, Johannsen P, Vandenberghe R, Lleó A, Alcolea D, Frisoni GB, Galluzzi S, Nobili F, Morbelli S, Drzezga A, Didic M, van Berckel BN, Salmon E, Bastin C, Dauby S, Santana I, Baldeiras I, de Mendonça A, Silva D, Wallin A, Nordlund A, Coloma PM, Wientzek A, Alexander M, Novak GP, Gordon MF; Alzheimer’s Disease Neuroimaging Initiative, Wallin ÅK, Hampel H, Soininen H, Herukka SK, Scheltens P, Verhey FR, Visser PJ. The frequency and influence of dementia risk factors in prodromal Alzheimer’s disease. Neurobiol Aging. 2017 Apr 8;56:33-40. doi: 10.1016/j.neurobiolaging.2017.03.034. [Epub ahead of print]

Cohen, C. (2015) Imposter syndrome: Why do so many women feel like frauds? The Telegraph 16 November 2015 http://www.telegraph.co.uk/women/work/imposter-syndrome-why-do-so-many-women-feel-like-frauds/

Department of Health (2015) Policy paper. Prime Minister’s challenge on dementia 2020https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020

Fox M, Fox C, Cruickshank W, Penhale B, Poland F, Steel N. Understanding the dementia diagnosis gap in Norfolk and Suffolk: a survey of general practitioners. Qual Prim Care. 2014;22(2):101-7.

Higgs P, Gilleard C. Interrogating personhood and dementia. Aging Ment Health. 2016 Aug;20(8):773-80. doi: 10.1080/13607863.2015.1118012. Epub 2015 Dec 28.

Howard, R. Doubts about dementia diagnoses. Lancet Psychiatry, available online 9 May 2017, https://doi.org/10.1016/S2215-0366(17)30150-5.

Johnson L, Addamo PK, Selva Raj I, Borkoles E, Wyckelsma V, Cyarto E, Polman RC. An Acute Bout of Exercise Improves the Cognitive Performance of Older Adults. J Aging Phys Act. 2016 Oct;24(4):591-598. Epub 2016 Aug 24.

Jolley DJ, Benbow SM. Stigma and Alzheimer’s disease: causes, consequences and a constructive approach. Int J Clin Pract. 2000 Mar;54(2):117-9.

Lee SM, Roen K, Thornton A. The psychological impact of a diagnosis of Alzheimer’s disease. Dementia (London). 2014 May;13(3):289-305. doi: 10.1177/1471301213497080. Epub 2013 Aug 5.

Lincoln P, Fenton K, Alessi C, Prince M, Brayne C, Wortmann M, Patel K, Deanfield J, Mwatsama M. The Blackfriars Consensus on brain health and dementia. Lancet. 2014 May 24;383(9931):1805-6. doi: 10.1016/S0140-6736(14)60758-3. Epub 2014 May 19.

Love S. Neuropathological investigation of dementia: a guide for neurologists. J Neurol Neurosurg Psychiatry. 2005 Dec;76 Suppl 5:v8-14.

McKeown J, Clarke A, Ingleton C, Ryan T, Repper J. The use of life story work with people with dementia to enhance person-centred care. Int J Older People Nurs. 2010 Jun;5(2):148-58. doi: 10.1111/j.1748-3743.2010.00219.x.

Ozer S, Young J, Champ C, Burke M. A systematic review of the diagnostic test accuracy of brief cognitive tests to detect amnestic mild cognitive impairment. Int J Geriatr Psychiatry. 2016 Nov;31(11):1139-1150. doi: 10.1002/gps.4444. Epub 2016 Feb 18.

Petersen RC. 2004. Mild cognitive impairment as a diagnostic entity. J Intern Med 256: 183–94.

Petersen RC, Smith GE, Waring SC, Ivnik RJ, Tangalos EG, Kokmen E. Mild cognitive impairment: Clinical characterization and outcome. Archives of Neurology. 1999;56(3):303–308.

Price, C. Revealed: the dementia diagnosis drive that went too far 26 February 2016 http://www.pulsetoday.co.uk/clinical/more-clinical-areas/neurology/revealed-the-dementia-diagnosis-drive-that-went-too-far/20031247.article

Rahman, S. (2017) Enhancing health and wellbeing in dementia: a person-centred integrated care approach, London: Jessica Kingsley Publishers.

Various news agencies (2014). Older people are more scared of dementia than cancer, poll finds. http://www.telegraph.co.uk/news/health/elder/11008905/Older-people-are-more-scared-of-dementia-than-cancer-poll-finds.html

Vernooij-Dassen MJ, Moniz-Cook ED, Woods RT, De Lepeleire J, Leuschner A, Zanetti O, de Rotrou J, Kenny G, Franco M, Peters V, Iliffe S. Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. Int J Geriatr Psychiatry. 2005 Apr;20(4):377-86.

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Disasters and dementia: from earthquakes to flash bulb memories

disaster

 

The “International Federation of Red Cross and Red Crescent Societies” definition of a ‘disaster’ is:

“ .. a sudden, calamitous event that seriously disrupts the functioning of a community or society and causes human, material, and economic or environmental losses that exceed the community’s or society’s ability to cope using its own resources. Though often caused by nature, disasters can have human origins.”

Disasters offer potentially valuable information about risks of dementia, as well as insights into wider brain function.

On 11 March 2011, in the early afternoon (14:46 local time), Japan was rocked by 9.0-magnitude earthquake that caused widespread damage to the country’s eastern coastal region. It lasted approximately six minutes, occurred with an epicentre of approximately 130 km (80 miles) east of Sendai City, Tohoku region.

The earthquake was so powerful it moved Honshu, Japan’s largest island, 2.4 metres east and shifted the Earth on its axis by an estimated 10 to 25 centimetres.

Hikichi and colleagues examined whether people experienced cognitive decline in the aftermath of the 2011 Great East Japan Earthquake and Tsunami, in a survey of older community-dwelling adults who lived 80 km west of the epicenter 7 mo before the earthquake and tsunami (Hikichi et al., 2016).

Approximately 2.5 years after this natural disaster, their follow-up survey gathered information from 3,594 survivors.  The association between housing damage and cognitive decline remained statistically significant in the instrumental variable analysis. Housing damage appears to be an important risk factor for cognitive decline among older survivors in natural disasters.

Dementia is a progressive condition which can affect any part of the brain. It therefore offers academics, practitioners and professionals valuable insights into how the brain functions.

But where were you when you first learned about the assassination of John F. Kennedy, the Challenger explosion, or the attack of September 11, 2001?

Variants of this question are often asked, and, usually with great enthusiasm, people reply with vivid, elaborate, and confidently held memories, memories that they claim they will never forget. These so-called “flashbulb memories” are detailed and vivid memories of attributes of the reception context of surprising and emotionally arousing public events.

Brown and Kulik (1977) showed that such autobiographical memories flashbulb memories in order to capture their impression that people had taken a photograph of themselves while learning of a public, emotionally charged event such as the Kennedy assassination.

Research on flashbulb memories that followed their now classic paper occurred, in part, because the “flashbulb nature” of FBMs seemed distinctly different from the character of other autobiographical memories.

One recent event has provided an intriguing account of memory in a person living with mild dementia. It demonstrates for me graphically the enormous complexity with which the human brain handles memory ordinarily. This person with mild dementia had been experiencing difficulties in short term memory, for recent names, lists and events. It also provides yet further evidence how the human brain handles emotion and memory through distinct neural substrates.

The attacks in Paris on the night of Friday 13 November 2015 by gunmen and suicide bombers hit a concert hall, a major stadium, restaurants and bars, almost simultaneously – and left 130 people dead and hundreds wounded.

A person living with mild Alzheimer’s disease underwent a directed interview about these “Paris attacks” (El Haj et al., 2016).

Unlike her memory about the date and month of the attacks, she provided accurate information about the year, time and places they occurred.

She also provided accurate information about how she first became aware of the attacks, where she was, with whom, what she was doing, and what time it was when she learned about them. As for the emotional characteristics of these memories, she tended to have high ratings of vividness and rehearsal. Negative emotional states and great surprise and novelty were also reported.

One reason for an interest in flash bulb memories is that their study may help psychologists understand traumatic memories. Their relevance can be seen in two further different lines of research.

First, epidemiological studies after the attack of 9/11 established that many people in the New York City area who did not directly experience the events at Ground Zero nevertheless experienced symptoms of post-traumatic stress disorder (Galea et al., 2002).

There’s currently some evidence that the part of the brain which might be implicated in vivid flashbacks in post-traumatic stress disorder may be the part of the brain which is one of the first places to shrink in Alzheimer’s disease.

(Neuroimaging research on the neurobiology of chronic post-traumatic stress disorder) has revealed structural and functional alterations in a distinct network of interconnected brain regions, see Flatten et al., 2004.)

This part of the brain is the hippocampus.

Second, brain-imaging studies showed enhanced activity levels of the amygdala after three years for those close to, but not at, Ground Zero (Sharot, Martorella, Delgado, & Phelps, 2007)

Therefore, disasters, man-made or otherwise, offer unique insights into the human brain, and are very relevant to our understanding of dementia.

 

 

Suggested reading

 

Brown R, Kulik J. Flashbulb memories. Cognition. 1977;5:73–79.

El Haj M, Gandolphe MC, Wawrziczny E, Antoine P. Flashbulb memories of Paris attacks: Recall of these events and subjective reliving of these memories in a case with Alzheimer disease. Medicine (Baltimore). 2016 Nov;95(46):e5448.

Flatten G, Perlitz V, Pestinger M, Arin T, Kohl B, Kastrau F, Schnitker R, Vohn R, Weber J, Ohnhaus M, Petzold ER, Erli HJ. Neural processing of traumatic events in subjects suffering PTSD – a case study of two surgical patients with severe accident trauma. Psychosoc Med. 2004 Jul 15;1:Doc06.

Galea S, Ahern J, Resnick H, Kilpatrick D, Bucuvalas M, Gold J, Vlahov D. Psychological sequelae of the September 11 terrorist attacks in New York City. New England Journal of Medicine. 2002;346:982–987.

Hikichi H, Aida J, Kondo K, Tsuboya T, Matsuyama Y, Subramanian SV, Kawachi I. Increased risk of dementia in the aftermath of the 2011 Great East Japan Earthquake and Tsunami. Proc Natl Acad Sci U S A. 2016 Oct 24. pii: 201607793. [Epub ahead of print]

Sharot T, Martorella EA, Delgado MR, Phelps EA. How personal experience modulates the neural circuitry of memories of September 11. Proceedings of the National Academy of Science. 2007;104:389–394.

 

@dr_shibley

 

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I will be speaking at #WHIS16 London on 25 June 2016

The World Health Innovation Summit (WHIS) now moves to the Royal College of Obstetricians and Gynaecologists on the 24th & 25th June 2016. This follows the success of the inaugural WHIS summit that took place in Carlisle, Cumbria in March of this year (23.7 million twitter impressions achieved).

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WHIS is an unique and innovative forum in that it supports our health services by bringing communities together to innovate and share knowledge to improve health care for all.

The World Health Innovation Summit aims to bring all members of our communities together to support and help our health services by providing a platform for us to come together as a community to innovate and share knowledge so we all benefit.

As with the first Cumbrian summit, the London event has a range of expert patient innovators, clinical leaders, health commentators, academics and members of the business community speaking and working with members of the community to inspire innovation in healthcare.

I sadly was unable to make it up to Cumbria in the end, due to unforeseen circumstances, but my ‘here’s one I made earlier’ specially prepared talk on innovation and dementia was shown (and received good feedback).

#WHIS16 Innovation as a response to dementia from Shibley Rahman on Vimeo.

The programme is as follows.

#WHISLondon16

Programme Day 1 – 24th June 2016

9.00am Registration & Networking

10.00am Welcome Gareth Presch, Founder

10.05am Opening Address Dr Amir Hannan, Chairperson

10.10am Olive O’Connor, Patient Innovator

10.40am Deirdre Munro, Founder Global Village Network & Soni Cox, Counsellor MBACP Accred. Supervisor. Creator & Director of My Way Code

11.30am Coffee Break

11.45am Prof Minesh Khashu

12.25pm Jacque Gerrard, Director & Joy Kemp Royal College of Midwives

1.00pm Steve Turner, MD & Founder Turn up the Volume “Patient led Clinical education”

1.30pm Lunch

2.15pm Panel Discussion Women’s Health Chair Deirdre Munro

Soni Cox (Global Mental Health), Chris McBrearty (Medical Leader), Hriitu Rana (India), Asia Omar (Sudan), Sally Godwin, Jacque Gerrard, Joy Kemp RCM Global Midwifery , Prof Minesh Khashu (Health Systems), Carmel McCalmont (Student Twinning), Natalie Corden (Student Leader), Martyn Blacklock (Wellbeing)

3.00pm Manjit K Gill, CEO – Binti Period

3.30pm Coffee Break

3.45pm Prof Glenn Roberts, Quality & Innovation Kings College London

4.15pm Carmel McCalmont, Head of Midwifery UHCW

4.45pm Founder Gareth Presch

4.55pm Closing Remarks Dr Amir Hannan Chairperson

 

Day 2 – London 25th June 2016

9.00am Registration & Networking

9.30am Welcome Gareth Presch, Founder

9.35am Opening Address Dr Amir Hannan, Chairperson

9.40am Dr Alyaa Gad, afham.TV

10.10am Paul Watson, Children’s Mental Health Nurse (special interest military children)

10.45am Martyn Blacklock, WHIS KIDS & WHIS at Work

11.30am Coffee Break

11.45am Briefing sessions  – Guest Speakers (Mummy’s Star, SilverFit and more)

12.30pm Panel Discussion Solution focused – Special Guest Chair

1.00pm Lunch

2.00pm Dr Chris McBrearty, CEO Strive Clinic

2.40pm Christiana Gardikioti, Founder Meraki People

3.15pm Coffee Break

3.30pm Hala Jawad, Community Pharmacist

 

4.10pm Dr Shibley Rahman, Author

 

4.50pm Carrie Jackson, Director, England Centre for Practice Development

5.20pm Sanchita Islam, Artist, Writer, Film maker

5.40pm Closing Remarks Dr Amir Hannan Chairperson
#togetherweinspire ‪#‎WHIS‬ ‪#‎togetherweinsprie‬

 

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#ADI2016 The force awakens

I enjoyed the opening ceremony – though some delegates remarked to me how ‘fit’ the dancers were, maybe indicative of long plane flights to get to the conference venue.

Yesterday, I remarked to the CEO of Alzheimer’s Disease International (ADI), Marc Wortman, as Marc was leaving the hotel, that the Alzheimer’s Disease International conference had ‘interesting dynamics’.

What I actually mean is this.

Speakers from Dementia Alliance International were outstanding. I think Prof Peter Mittler’s talk on how people with dementia must demand access to their rights under the UN Convention for People with Disabilities was a game changer for many. For me, it was the best lecture I’ve ever attended in my lifetime.

I mentioned to some separately that for me Prof Peter Mittler was the equivalent of a premiership footballer, in terms of lecturing ability, when many lesser mortals in comparison look in lower divisions.

I reckon I would’ve actually made it to Dennis Frost’s talk on time especially, not wandered through accidentally half-way through by accident, had Dennis not been advertised as ‘A person with dementia’. This billing on the programme was complete nonsense – as ridiculous as having ‘A person without dementia’ to describe the billing of someone like a policy wonk from WHO.

This was a worthy project which caught my eye.

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It was lovely to be recognised by so many at the conference – people whom I had never met before, as well as longstanding close friends of mine. The conference expectedly did have the atmosphere of a family wedding – with people I like and respect there.

I think Jeremy Hughes and George McNamara, senior people at the Alzheimer’s Society, gave excellent presentations. George’s one is particularly relevant to my next book, and contained many many useful avenues for future directions. I think Dementia Friends on principle has good aims, but a real concerted effort must be put now into making meaningful sense of this high cost campaign.

Dementia Alliance International (DAI) is a group essentially run by people with dementia to advocate for people with dementia. But the sheer individual brilliance of the presenters shone through – including Prof Peter Mittler and Prof Mary Radofsky whose contributions were incredibly interesting. There’s no doubt ADI hugely benefited from their presence in the conference, including in the programme list. But I do also feel this is a beginning.

The mood music has changed. DAI has a scarce resource other people want – individual expertise by people with dementia – which many people do not have. It’s clear that the future direction of dementia policy now can be ‘no decision about us without all of us’, and can move from dinosaur lobbying techniques and hospital-dominance to representing the sincere views of people living with dementia.

A day before the first full day, Glenn Rees AM, Chair of ADI, let us know that his Board had approved DAI’s proposal to promote Convention rights, and this would now become their official policy, such that it would be left up to individual national organisations as to how best implement rights-based advocacy. Rights-based approaches, including rights to independent living and right to health, have huge implications for dementia care and support worldwide.

Helga bust a gut to help me with my book signing session.

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Thanks very much to Peter Macfarlane from Wisepress for his help for this. Dale Goldhawk, Vice Chair of ADI, even bought a copy!

I had great feedback from my presentation on the awareness of international human rights. Thanks very much to John O’Keefe for chairing this.

Some photos I took are here.

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I suppose my favourite ‘times’ of conference was when Agnes Houston made a ‘selfie’ photo of herself for the first time.

And also I think Agnes and Nancy McAdam talking about how they felt really included in Scottish dementia research (#whywedoresearch) on a boat on the Danube was much fun too. A sort of “Alas Houston and McAdam” moment.

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The dementia conference is dead! Long live the meet up.

Fran O’Hara, Pam Luckock, Chris Roberts and Jayne Goodrick, about 15 people with dementia, at least 15 family carers, various people in various disciplines in dementia care including the third sector promoting living better with dementia, and other interested parties, proved it this week.

The dementia conference is dead. Long live the meet up.

We got off to a flying start. There was no ‘conference dinner’. We instead all sat where we wanted to in a rectangular circle (you get my drift). My best friend, Chris Roberts, sat next to Jeremy Hughes. I was about to take a photo of Chris talking to the person on his right, whom he really liked a lot, until I realised it was Jeremy. And I thought I’d leave Jeremy in peace – he is after all the CEO of the Alzheimer’s Society!

I adore Prof Bob Woods – his advice to Chris when he left on the last day was, “Watch out for this man!” (laughing, but pointing at ME). Bob is basically an encyclopaedia, but very nice with it. I mentioned to Bob how in fact I was citing him during my own PhD – which was a very long time ago. Bob said, “Good! Cos I started when I was 5.”

I asked Bob whether he ‘believed in’ meaningful activities – “very much so – they’re better than meaningless activities” came the reply.

I can’t really explain it – but there is a huge bond and solidarity when friends of mine living with dementia meet up and their closest ones. You can’t ‘fake it’.

Kate Roberts, Chris Roberts and Jayne Roberts did a wonderful initial session. In a brilliant talk (and it was apparently totally scripted by her), Kate (=Chris’ daughter) included, “Mum is my rock and Dad is my hero.” You could hear Jayne’s voice croak audibly with emotion.

I won’t give the ‘game away’, but George Rook gave a wonderful talk on the communication and disclosure of the diagnosis from a patient’s perspective:

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Agnes Houston’s work, discussed too by Donna Houston, was a real hit. Agnes said it had all been possible through people with dementia giving up their precious time, and with generous support from the Life Changes Trust. You see Agnes MBE is the best – Agnes will be going with family to Buckingham Palace on 18th December 2015 – and I’ll be supporting from afar.

Olwen Williams gave a very good mini-speech on a topic which I have a strong interest in – the “Future Hospitals” initiative from the Royal Colleges of Physicians, which looks at the rôle of the hospital in an integrated person-centred care system which sees people in the right place, right time and right way.

Really loved chatting with Ruth Eley for a long time for the first time. Am a big supporter of TIDE, to support family carers (like I was of the previous Dementia Action Alliance Carers Call to Action). Had a lovely chat too with Louise Langham who is the best too. Anna Gaughan, Jean Tottie and Pat Broster were of course supporting on Twitter. Good luck to the book some of them are involved with on life story – I am sure this will be an unique high quality contribution next book to be published by my own publishers of “Living better with dementia”, Jessica Kingsley Publishers.

This meeting was not as good as a conference it was much better. There was a completely flattened hierarchy – that means people who weren’t catalysts or officers in change. People addressed people as people. Simples.

There was mutual respect for other people’s background and experiences, diverse and substantial. People with dementia and closest were pivotal in the table-top activities in co-producing dementia care pathways.

Isabel and John were amazing in their graphic and technical support for their event.

The token slot for the person with dementia or carer was discarded (which often makes the situation of engagement and empowerment worse in fact.) There was no shitty question answer session where the ‘selected few’ asked their questions. No – we all had a chance to contribute.

5o% of the places of this meet up were free of charge. All people with dementia and carers were offered a chance to attend for free.

And we got a lot done.

See – it is possible!

Loved Llandudno and North Wales in general.

Well done to “Framela”, Chris and Jayne (see a previous blogpost for the full programme).

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An outstanding conference on dementia is next week in Llandudno

Next week promises to be an outstanding conference on contemporary issues in dementia care.

This will be a two day programme (24-25 November) of activity, speakers, spaces and opportunities ‘to bring real, rapid change and improve dementia care and support in North Wales, and to create more informed, inclusive communities.’

It’ll take place in Llandudno, Wales, in a beautiful venue by the seaside.

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I am looking forward to it hugely.

Persons who’ve received a diagnosis of dementia are at the heart of the event’s organisation, including Chris Roberts, Wales ambassador for the Alzheimer’s Society, George Rook and Agnes Houston MBE, Scottish Dementia Working Group.

Here’s the ‘Eventbrite’ page, but please do email the organisers in advance as there will be a high proportion of tickets for interested citizens.

It is a spectacular programme, not least because Jeremy Hughes CEO of the Alzheimer’s Society will be speaking. Given how busy Jeremy is, this is wonderful.

The programmes is as follows.

DAY 1: 24 November 2015
9.30am      Refreshments, exhibition viewing, quiet space time, Dewis
10.00am    Welcome, Chris, Jayne & Kate Roberts ‘Creating inclusive communities,
a place for everyone – what matters to us’.
Kate Swaffer will also join us via webcast from Australia.
10.30am    Jeremy Hughes, CEO, Alzheimers Society UK ‘Dementia Friends’
10.45am    ‘Using what we have’ asset-mapping dementia care & support in N Wales
Group discussion activity 1
11.50am    ‘Dementia care pathway – Identifying issues & gaps’  Group discussion activity 2
12.35am     Prof. Bob Woods, Bangor University ‘Arts and Dementia’
1.50pm       Agnes Houston, Dementia and Sensory Loss
2.05pm       George Rook, patient activist ‘In an Ideal World’
2.20pm       First participant choice session: a choice of themed workshops,
informal hosted table conversations, quiet space, exhibition, Dewis
• Young carers • Being a dementia champion/voice • Dementia choirs
• Dementia and the natural environment • Dementia + transgender
• Dementia faith /ethnicity • Dementia and memory tasks/music
• Dementia + sensory loss • Late diagnosis •
Dementia and care homes • And more…
3.40pm       Second participant choice session
4.45pm       Chris, Jayne & Kate Looking forwards together

DAY 2: 25 November 2015
9.30am     Refreshments, exhibition viewing, quiet space time, DEWIS
10.00am    Welcome – Chris and Jayne Roberts ‘Creating change together’
10.15am    Keynote speaker and Multi-sector panel presentation
The current North Wales dementia care landscape
10.30am    Reviewing the asset-map of dementia care and support in N Wales
– developing recommendations for action, group activity.
11.40am    ‘A dementia care pathway – Identifying issues and gaps’
Data review & creating recommendations for action group activity.
1.00pm     Event close – Chris & Jayne Roberts ‘Looking forwards together’

I am staying at the conference venue itself, St George’s Hotel. I have already got an extremely good impression of them from speaking to them on the phone to organise my stay.

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Celebrating the best – the National Dementia Care Awards 2015

I was honoured to be invited by Chris Roberts and his family to the National Dementia Care Awards 2015.

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Jayne Goodrick, despite the fact the family camper van broke down in full blazen glory, looked dazzling.

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I arrived at the Birmingham Hilton Metropole Hotel on Friday afternoon, where I was immediately serendipitously greeted by Lucy Frost and Emma Bulled. I was very relieved to see them both as I knew as I was in the right city. I was pleased that Brighton’s initiatives in acute hospital care had been recognised, in no small part due to Emma and Lucy and their colleagues.

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Lucy later that evening introduced me to her friend and colleague Richie who was great to chat with – Richie is a very gifted, thoughtful individual who also works at Brighton.

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Entering the event was a bit of a ‘who’s who’.

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I feel now as if I’ve got to know Dr Richard Hawkins quite well by now, having spent nearly two weeks back to back in his company (the first week being the UK Dementia Congress in Telford the other day). Richard’s great fun.

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At the front of most of our thoughts was Tim Lloyd-Yeates who sadly passed away earlier this year. I really enjoyed the presentation by Alive! which was Tim’s creation.

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Was really good to see Zoe Harris and Sally Knocker, longstanding Twitter pals.

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It was great to see the Northern Irish contingent, Joanne Agnelli, Jessie McGreevy and Gary Mitchell.

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But huge apologies for the accidental photobombing later.

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I should like to thank Jessica Harman and Fiona Robb for the huge amount of work they put into the evening, and Jessica especially for getting me access to soft drinks (as I never drink alcohol for various reasons) without any fuss or reservation at all.

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I have to say, entirely genuinely, the organisation was immaculate.

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We rarely get a chance to celebrate the best in dementia care. Too much of it comes across as firefighting, or even at worst ‘damage limitation’. It was therefore awesome to celebrate people who are at the top of the game.

I said to Joy Watson, an amazing campaigner, and nominee for most exceptional person living with dementia, jokingly, that Tony Husband was enjoying himself at the champagne reception. Joy laughed and said, “Yeah Shibley – he’s driving!”

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I think a part of dementia policy which works is ‘dementia friendly communities’. There is no doubt that Nicky Taylor and the team of West Yorkshire Playhouse were deserved winners of best innovation, for the sheer remarkable skill and attention to detail they pay over inclusivity and accessibility.

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This is all a fire cry from my memory of clinical training in the cusp of the turn of the millennium where residents with dementia were literally restrained to their chairs, abusing their fundamental human rights, and had set times at which to go to the toilet.

This is not to airbrush bad care, at all, but for us to learn from what works in a constructive manner.

It was an honour to meet Liz Cunningham who won most exceptional person living with dementia, who was praised for her outstanding initiatives in the local community.

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I think personally in future it might be sensible for all finalists to be ‘winners’ in this category. All the nominees, including Chris Roberts, Joy Watson, Ken Howard, I personally felt were outstanding – and whilst I am not one for ‘the Dodo verdict’, i.e. “everyone has won and all shall have prizes”, I felt to judge people who have a cigarette paper between them in terms of contribution to campaigning for awareness was unfair to all concerned.

Chris Roberts even got a card later on from the judges praising him for his outstanding work.

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But this was a very very nice touch by the organisers of this event.

Meanwhile, here’s “our Ken” – I reminisced with Zoe the old joke, “What do you call a well dressed man in a  suit? The defendant.”

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My impressions of the Dementia Congress conference 2015

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First thing’s first, I loved the company up there. I met people properly up there, including Prof Dawn Brooker, Prof Murna Downs, Sally Knocker, Damian Murphy and Philly Hare, whom I hadn’t really met bet before. I ‘get’ Dawn’s work, Murna has a terrific sense of humour, Sally’s completely lovely, Damian’s on the ball with his work and Philly I think has a heart of gold. I can see now why Philly and Wendy (Mitchell) get on so well. I was thrilled to see the leaders of the Lewy Body Society confidently presenting their society – lovely ambassador and work I’m very interested in (having received so many complimentary reports on Prof Ian McKeith’s clinical approach.)

I suppose I did have different expectations of the event. I expected it to be ‘hard sell’ which it wasn’t. I expected the material to be light academically (I don’t mean this in an academic snobby way) – but it wasn’t. There was a real family atmosphere. Some members of the family perhaps were not that thrilled to see me (but didn’t say so), but on the whole I had a very happy time. Some of the family I’ve been around half way round the world with – like Chris Roberts and Jayne Goodrick to Australia.

It gave me great pleasure, from a completely egotistical perspective, to direct people to my book ‘Living better with dementia: good practice and innovation for the future’ to the JKP Press stand.  It happened also to be convenient shorthand whenever somebody asked for my thoughts on an issue.

I had become fed up with the question of ‘what do you do?’ I am bound to feel fed up with this in the sense that I genuinely feel I am not ‘doing’ very much; but what I ‘do’ I enjoy so much, it doesn’t feel as if I’m ‘doing it’.  But this time I was helped along by my name badge saying I worked for ‘Ground Floor Flat’. I said jokingly on Twitter I was hosting at Congress my launch party for  a brand new innovative, person-centred care for people living alone with dementia in relation to ‘Ground Floor Flat’. 11 people retweeted it. I withdrew the tweet. [Note to editors: both my regulators despite offences of dishonesty.]

Suzy Webster and Sarah Reed laughed so much about this. I wish Suzy had been there longer, and I wished I’d been there for Sarah’s session but I think it clashed with Andrea Sutcliffe’s session. I had a coughing fit during my session, which was probably divine retribution for me asking whether dementia policy should be governed by the free market.

I was a bit disappointed with the Ministerial video. It didn’t say much I didn’t already know. I perfectly understand her not being there because of a three-line whip, but wish I had come out of that video of hers knowing something a bit more about this current government’s commitment to dementia policy. I think Jeremy Hughes answered questions very skilfully – including my one asked of a panel on personal budgets.

I have very few criticisms of this event. One session overran, was appallingly timed, not much focus on actual empirical work (very anecdotal), and then did not allow time for questions. But on the whole the sessions were academically rigorous, thought provoking and presented to a very high standard. As I tweeted at the time, the session chaired by Zoe Harris on coordination of care and personalised approaches, featuring the titans Ian McCreath and Helen Sanderson, was the best conference session I’ve ever been to (and I’ve been to very many).

The need for clinical specialist nurses was very very loud in this conference, and so it should be given the overwhelming thumping clinical evidence for their importance in outcomes especially in coordination of NHS and social care. It was totally lovely to chat with Karen Dening, Rachel Thompson, Amy Pepper and Lucy Frost.

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Steve Milton inspired me massively, in doing huge amount of work and refusing to take credit for any of it. Toby Williamson continues to inspire me as being very understated but massively over delivering. I chatted with Toby personally about a common interest in rights and disability (the brilliant Mental Health Foundation report on this under Toby was published earlier this year.) I wish I had spent more time with Peter Mittler at this conference.  But I will catch up with Peter for definite. Peter’s put a huge amount into promoting rights-based advocacy approaches; he himself had a massive rôle in the development of this policy in the inclusion sphere and the UN Convention of Rights of People with Disabilities.

People living with dementia, like Peter, are the stars of the show. I loved seeing my old friends Ken Howard, Agnes Houston, Joy Watson, Tommy Dunne, and Keith Oliver. I see Keith as a very wise man, which he is. I have found Peter Ashley’s comments incredibly useful in the past – I share totally Prof Dawn Brooker’s regret at Peter not having been able to attend conference this year.

The plenary sessions by Prof R0se-Marie Drões and Prof Martin Prince on integrated person-centred care and global perspectives were superb.

My favourite session in the end was probably Lucy Whitman’s one based around her new book ‘People with dementia speak out’. I chatted with two friends of mine I adore, Larry Gardiner and Dr Jennifer Bute. Issues came up such as the impact of the diagnosis, and how it was more important to meet the needs of the person living rather than to get knotted into a diagnostic obsession. I loved speaking with Lucy privately – a terrific force for good.

David Sheard’s talk in the main hall of conference was awesome. It unfortunately produced an Amazon order of significant weight, but was entertaining, informative and educational in equal measure, in producing a thought provoking discussion of personhood in the light of recent trends in dementia care.

I am glad that this conference gave proper conference to the importance of carers in English dementia – TIDE carers were superbly represented by Louise Langham and Jean Tottie. The carers’ influence was also felt from a distance from Rachel Niblock, tweeting furiously, and in complete solidarity with Neil Mapes’ superb presentation on a response for Age UK to provide inclusivity.

For next year, I’d really like a unifying theme for the conference, which this year’s suffered from not having one. I also felt that the conference fizzled out, albeit with outstanding parallel sessions, and maybe there should have been a common plenary for all of us (particularly to stop people getting early trains back home.)

I thought the Hawker bunch were lovely – I spoke with Mark, the editor of Journal of Dementia Care, and Richard, the Editor in Chief, who was all round brilliant. Much missed was Tim Lloyd-Yeates. I remember when Tim phoned me up to tell me of his medical diagnosis, and we chatted about how anything could happen to anyone at any time. Thanks to the organisers of this conference for a brilliant evening event, including a tribute to Tim, showcasing art. Massive thanks to Sue Benson who clearly was a glue for much of this conference of two days.

I did miss Kate Swaffer though. Kate won best leader award at a different conference. Rightly so, as my chapter on leadership in dementia in my book had her in mind.

Synchronicity.

 

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