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Signposts to dementia care: core themes for learning

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There is little doubt, whatever your views on the current provision of dementia care in England, that ‘dementia’ is much more in the public’s consciousness compared to 2012 when the Dementia Challenge was launched by the then Prime Minister of the UK. The current ‘Prime Minister’s Challenge on Dementia 2020’, referred to several times in this booklet, can be found at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/414344/pm-dementia2020.pdf. There is critically a need to align the success of the ‘Dementia Friends’ social movement (https://www.dementiafriends.org.uk),  spearheaded by the UK Alzheimer’s Society, with an improved consciousness of wider issues to do with dementia in healthcare settings beyond the traditional medical model. Putting ‘dementia friendly health and social care settings’ into practice necessitates a workforce which is literate in the key contemporary issues of dementia care beyond the biology, often identified in cutting edge research, and it is essential that all the members of the workforce are able to cut across their traditional subject interests, whether in physical health, social care, mental health, or otherwise.


In all of my dementia books, I have tried to cross traditional subject boundaries to draw on appropriate knowledge from other academic disciplines to reflect critically on the application of a strengths based person-centred approach to supporting the daily life of people with dementia. The HEDN (“A Curriculum for UK Dementia Education”) is an open forum for those who teach or manage courses related to dementia care based within Universities in the UK. As part of its commitment to improve professional education in dementia care, HEDN developed a Curriculum for Dementia Education.  This curriculum was designed to guide Higher Education providers in the key areas for inclusion in courses related to dementia care, at both pre-registration and post-qualifying levels, and is underpinned by a number of essential values and themes (https://www.dementiauk.org/for-healthcare-professionals/free-resources/download-the-curriculum-for-demenita-education/). I feel that Admiral nurses, from the leading charity Dementia UK, have been pivotal in educating the workforce, regardless of care setting, ranging from hospitals to hospices.


This booklet is designed to parallel another educational contribution as well. The “Dementia Core Skills Education and Training Framework” was originally commissioned and funded by the Department of Health and developed in collaboration by Skills for Health and Health Education England in partnership with Skills for Care (see for an overview http://www.skillsforhealth.org.uk/services/item/176-dementia-core-skills-education-and-training-framework). My main concern is that people who don’t work in dementia or meet people living beyond a diagnosis of dementia routinely may not be able to see ‘the wood from the trees’ in understanding dementia. This could be due to a plethora of reasons – not least for not having time or resources to attend expensive conferences on the subject. It is essential that research and services are not built around the needs of researchers and institutions, and failure to recognise this can easily explain why some professionals and practitioners operate in a mindset that people with dementia and care partners are passive recipients not active partners of care. My ‘signposts’ in this booklet are not commissioned by anyone for any money. So, therefore, I feel I’ve been able to speak my mind about what’s best in current practice and research. I have done this work out of goodwill entirely pro bono.



The potential target audiences differ according to different ‘tiers’:


Tier 2: Health and social care staff who regularly work with people living with dementia including staff providing direct care and support.


Tier 3: Key staff (experts) who regularly work with people living with dementia and who provide leadership in transforming care including social care managers and leaders. A recurrent goal is for the learner to be able to contribute to the development of practices and services that meet the needs of families and carers.


I should, however, like to include in this “experts” who live beyond a diagnosis or are care partners. You could do little better, as a professional or practitioner, for example than to read the blog of ‘Dementia Alliance International’, a stakeholder group of people living beyond a diagnosis of dementia and non-profit organisation.


I cannot take responsibility for the content in third party hyperlinks or papers, and this document is not to be taken as professional advice. You are strongly recommended to use this brief document as a resource of ‘signposts’ alongside any other learning you are participating in.


I have written about many of the topics one way or other in my three books on dementia, listed below:


Rahman, S. (2014) Living well with dementia: the importance of the person and the environment, Oxford: CRC Press.

Rahman, S. (2015) Living better with dementia: good practice and innovation for the future, London: Jessica Kingsley Publishers.

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


The free information provided through the Alzheimer’s Society is excellent, and meets the standard for the NHS Information Standard (https://www.alzheimers.org.uk/homepage/250/publications_about_dementia )


There are additional ways of keeping up with innovations in dementia service education and learnong: for example, “Dementia Pathfinders” http://dementiapathfinders.org.  I should like you especially to use this booklet as a ‘launchpad’ for your further studies into what dementia is, its significance for people living with dementia, friends and family. Whatever your specialty, I should strongly urge you to seek further education in dementia, in whatever form that takes. Please feel free to evaluate critically what you read here to improve the quality of discourse.


London, March 2017



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An innovative programme to encourage extensive knowledge sharing: the HE KSS/BSMS Primary Care Dementia Fellowship Programme

The HE KSS/BSMS (Health Education Kent Surrey and Sussex / Brighton and Sussex Medical School) have launched the “Primary Care Dementia Fellowship Programme”.

This is a programme for GPs, practice nurses and staff, and community nurses in Kent, Surrey and Sussex.

(Health Education Kent Surrey and Sussex will provide the funding to release Fellows to attend a regional skills development programme that will run from March to September 2014.

The Fellows will join with doctors and nurses from Kent, Surrey and Sussex (KSS) to build the knowledge and skills needed for them to create better dementia services in KSS.

Prof Sube Banerjee and Breda Flaherty of Brighton and Sussex Medical School (BSMS) are leading this initiative based on their successful experience in the NHS London Deanery.

It appears that the main aim is to build a network of Fellows who can act as ‘change catalysts’ (my words not theirs), to spread best contemporaneous practice in dementia care.

It’s important as dementia is one of the top five strategic priorities in the KSS Skills Development Strategy.

Modules will be led by Banerjee and Flaherty, with contributions from clinical experts in dementia; colleagues in social care; people in the care home sector; NGOs; persons living with dementia and carers; specialists in service development; commissioners and researchers.

I believe that such a course will have considerable competitive advantage in being totally disruptive in how traditional training for juniors in dementia is conducted.

The value is clearly in the collaborative ties between members of the network. By lowering the cultural barriers in this way, the team at Sussex have something very special here.

The set-up is perfect for boundary-less knowledge sharing, and this is enormously value as we all get to grips with what the priorities in local and national policy in dementia might be.

There are three modules running from March to June: good practice in dementia assessment and care, good practice in dementia, and changing practice.

These are followed by a ‘Next Steps’ conference and a period of evaluation and research.

Such an approach might become paradigmatic for future learning in the NHS in dementia.


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'Reasons to be cheerful' part 4. Prof Sube Banerjee's inaugural lecture in Brighton on living well with dementia.

For me the talk was like a badly needed holiday. I joked with Kay there, a colleague of Lisa, that it felt like a (happy) wedding reception.

Unknown to me, the title of Prof Banerjee’s talk is an allusion to this famous track from 1979 (when I was five). It’s “Reasons to be cheerful (part 3)” by Ian Drury and the Blockheads.

The Inaugural Lecture – Professor Sube Banerjee (“Professor of Dementia”), ‘Dementia: Reasons to be cheerful’ was held on 26 February, 2014, 6:30 pm – 8:30 pm, at Chowen Lecture Theatre, Brighton and Sussex Medical School, Sussex Campus. BN1 9PX. Details are here on the BSMS website.

I found Prof Banerjee to be a very engaging, ‘natural’ speaker.

I arrived with hours to spare, like how the late Baroness Thatcher was alleged to have done in turning up for funerals.


Brighton are very lucky to have him.

But his lecture was stellar – very humble, yet given with huge gravitas. Banerjee is one of the best lecturers of any academic rank in dementia I have ever seen in person.

Opening slide

Banerjee started off with a suitable ‘icebreaker’ joke – but the audience wasn’t at all nervous, as they all immediately warmed to him very much.


He is ‘quite a catch’. He is able to explain the complicated issues about English dementia policy in a way that is both accurate and engaging. Also, I have every confidence in his ability to attract further research funding for his various teaching and clinical initiatives in dementia for the future.

Most of all, I was particularly pleased as the narrative which he gave of English dementia policy, with regards to wellbeing, was not only accurate, but also achievable yet ambitious.

1979 was of course a big year.

SUBE1 1979

Prof Banerjee felt there were in fact many ‘reasons to be cheerful’, since Ian Drury’s remarkable track of 1979 (above), apparently issued on 20 July of that year.

Banerjee argued that the 1970s which had only given fruit to 209 papers, but things had improved ever since then.

It was the year of course Margaret Thatcher came to power on behalf of the Conservative Party.


In contrast, there have already been thousands of papers in the 2000s so far.

Banerjee also argued that “what we know is more likely to be true” which is possibly also true. However, I immediately reminisced of the famous paper in Science in 1982, “The cholinergic hypothesis of geriatric memory dysfunction”. This paper, many feel, lay the groundwork for the development of cholinesterase inhibitors such as donepezil (“Aricept”, fewer than twenty years later.

It is definitely true that ‘we are better at delineating the different forms of dementia’.

I prefer to talk of the value of people with dementia, but Banerjee presented the usual patter about the economic costs of dementia. Such stats almost invariably make it onto formal grant applications to do with dementia, to set the scene of this particular societal challenge.


I am of course a strong believer in this as my own PhD was in a new way to diagnose the behavioural variant of frontotemporal dementia. In this dementia, affecting mainly people in their 50s at onset, the behavioural and personality change noticed by friends and carers is quite marked. This is in contrast to a relative lack of memory of problems.

Not all dementias present with memory problems, and not all memory problems have a dementia as a root cause. I do happen to believe that this is still a major faultline in English dementia policy, which has repercussions of course for campaigns about ‘dementia awareness’.

A major drive in the national campaigns for England is targeted at destigmating persons with dementia, so that they are not subject to discrimination or prejudice.

The dementia friendship programmes have been particularly successful, and Banerjee correctly explained the global nature of the history of this initiative drive (from its “befriending” routes in Japan). Banerjee also gave an excellent example to do with language of dementia friendship in the elderly, which I had completely missed.

SUBE7 Japan friendships

Raising awareness of memory problems in dementia is though phenomenally important, as Alzheimer’s disease is currently thought to be the most prevalent form of dementia worldwide.

The prevalence of dementia may even have been falling in England in the last few decades to the success prevention of cardiovascular disease in primary care.

The interesting epidemiological question is whether this should have happened anyway. Anyway, it is certainly good news for the vascular dementias potentially.

That dementia is more than simply a global public health matter is self-evident.

I’m extremely happy Banerjee made reference to a document WHO/Alzheimers Disease International have given me permission to quote in my own book.


Banerjee presented a slide on the phenomenally successful public awareness campaign about memory.

SUBE12 Alz Soc campaign

Nonetheless, Banerjee did speak later passionately about the development of the Croydon memory services model for improving quality of life for persons with mild to moderate dementia.

In developing his narrative about ‘living well with dementia’, Banerjee acknowledged at the outset that the person is what matters at dementia. He specifically said it’s about what a person can do rather than what he cannot do, which is in keeping to my entire philosophy about living well with dementia.

And how do we know if what we’re doing is of any help? Banerjee has been instrumental in producing, with his research teams, acceptable and validated methods for measuring quality of life in dementia.

The DEMQOL work has been extremely helpful here, and I’m happy Banerjee made a point of signposting this interesting area of ongoing practice-oriented research work.

Banerjee of course did refer to “the usual suspects” – i.e. things you would have expected him to have spoken about, such as the National Dementia Strategy (2009) which he was instrumental in designing at the time: this strategy was called “Living well with dementia”.

SUBE4 National dementia strategy

“I’m showing you this slide BECAUSE I want YOU to realise it IS complicated”, mused Banerjee at the objectives of the current English dementia policy.

SUBE8 Dementia national strategy objectives

I asked Banerjee what he felt the appropriate ‘ingredients’ of the new strategy for dementia might be – how he would reconcile the balance between ‘cure’ and ‘care’ – “and of course, the answer is both”, he said to me wryly.

Banerjee acknowledged, which I was massively pleased about, the current ‘barriers to care’ in this jurisdiction (including the known issues about the “timely diagnosis of dementia”.

Clearly the provision at the acute end of dementia care is going to have to come under greater scrutiny.

SUBE11 Barriers to care

I increasingly have felt distinctly underwhelmed by the “medical model”, and in particular the repercussions of this medicalisation of dementia as to how grassroots supporters attempt to raise monies for dementia.

That certain antidepressants can have a lack of effect in dementia – Banerjee’s work – worries me.

That antipsychotics can have a dangerous and destructive effect for persons with dementia – also Banerjee’s work – also clearly worries me.

I am of course very proud that Prof Alistair Burns is currently reading my book focused on the interaction between the person and the environment in dementia.

Alistair Burns Shibley Rahman email

And of course I’m ecstatic that Lisa Rodrigues and Prof Sube Banerjee signed my book : a real honour for me.

book photo

I signed Lisa’s book which was most likely not as exciting for her! X

There was a great atmosphere afterwards: the little chocolate brownies were outstanding!

Being an antisocial bastard, I didn’t mingle.


BUT I had a brilliant chat with Lucy Jane Marsters (@lucyjmarsters) who gave me a little bag of ‘Dementia is my business’ badges, very thoughtfully.

SUBE 13 Badges

We both spoke about Charmaine Hardy. Charmaine was missed (and was at home, devoted to G.)

I’ve always felt that Charmaine is a top member of our community.

This apparently is a ‘Delphinium’.


A reason not to be cheerful was leaving Brighton, for many personal reasons for me.

Upset to be leaving

Not even the Shard was a ‘reason to be cheerful’, particularly.

The Shard

But when I came back, I found out that ‘Living well with dementia’ is to be a core part of the new English dementia policy.

I have, of course, just published a whole book about it.

The photograph of the poppy was of course taken by Charmaine Hardy: I have such great feedback on that one poppy in particular!

Book cover

And what does the future hold?

Over to Prof Banerjee…

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