Why we need a renovated dementia strategy for England

Leaders establish the vision for the future and set the strategy for getting there.

John P. Kotter

I believe two critical errors were made in the leadership of the current English dementia strategy from the current Government.

Firstly, a culture reigned of wanting to produce high volume low quality dementia diagnoses at any cost, even incentivised in the official NHS England programmes.

Secondly, wilful blindness was paid to the devastating cuts in social care.

I personally will not forgive the current political leaders in dementia for these two massive cock ups.

In my first book ‘Living well with dementia: the importance of the person and the environment’ and for my second book ‘Living better with dementia: good practice and innovation for the future’, I reviewed the contemporaneous evidence for the policy in England of living better with dementia.


I am now in the process of organising my thoughts on living well with advanced dementia at home and in residential care settings.

Prof Sube Banerjee, Chair of Dementia at the Brighton and Sussex Medical School, will be writing the main Foreword for this book. Indeed, Sube has just published a paper on the shaping of the memory clinic service which signposts future directions helpfully.

Sube remarks, indeed: “We need applied health research designed to fill these important evidence gaps, resolving uncertainty, and allowing the development and delivery of efficient and effective services and policy to enable people to live well with dementia.”

I could not agree more.

The policy leads in the main charities involved with dementia in all parts of the UK I feel have been excellent.

The intentions of ‘dementia friendly communities’ are good. Indeed, many people living with dementia report a significant change in attitudes. To strengthen this concept further, taking full account of rights based approaches, it might be more accurate to frame the argument as ‘dementia inclusive communities’.

We need to ensure that primary and secondary care between themselves have sufficient resources to diagnose dementia accurately.

A lengthy diagnosis can be in effect a diagnosis denied, but it is worth, for many, waiting a bit extra to make sure the diagnosis is as accurate as it could be. An incorrect diagnosis can do considerable harm, and this is simply unacceptable when ‘substantial others’ (as termed by Wendy Hulko) also live with the diagnosis.

There has to be much better recognition of what social care practitioners offer the service for living better with dementia. The ‘year of care’ model, best articulated for diabetes, takes a strongly medical angle.

We also need to think carefully about whose needs we are truly addressing in the post-diagnostic support and for what purpose. Also, for the dementias which present as speech and language difficulties, we need a SALT service with capacity to manage.

The social care profession has been telling us for ages about the tragic consequences in privatisation of social care, and in deal breaking errors in the implementation of personal budgets. But if a future Government is worth anything it will ignore the mandarins of the Department of Health some of whom seem pretty clueless about these issues and correct the problems before the entire health and care ecosystem suffers.

If the aims of a nursing service are to provide support and coping strategies for caregivers, with a view to avoiding admissions to residential home, often unpaid family caregivers, we should be thinking about the training requirements (?is this a community psychiatric service). If the aims of the service is, rather, proactively to manage clinical medical issues, with a view to avoiding admissions to acute medical services, we should be thinking about alternative training requirements (high level of skill in general medicine).

Lessons can be drawn from Winterbourne in this jurisdiction and other jurisdictions notably America about how care in nursing homes can fail. There is no point promoting choice in nursing homes, if people in the general public feel uncomfortable with complicated metrics such as in infection rates or falls, or people are oblivious to inadequate staffing because of the ‘bottom line’.  At the other end, there is evidence for good practice in residential homes, but most of us believe that the debate has substantially come a long way beyond ‘person centred care’.

There is much to be learnt from different care settings, such as hospitals and the hospice movement, about end of life care. End of life is a specialised discipline, and there is much excellent research in this area currently being conducted. I would like knowledge from this area of medicine to be transferred seemlessly into dementia policy, thus improving research and service provision in the English dementia strategy.

We need to be much tighter on ‘dementia awareness’. We need to move the debate on from pretty graphics and presentation packages to meaningful education from people themselves trained in the workforce, or from people with genuine lived experiences. I feel massively people living with dementia have a critical rôle in designing research and services and this should be a top priority. A ‘badge’ to demonstrate dementia awareness is acceptable, but people saying they’ve had ‘training’ when they patently haven’t isn’t.

And I agree with Sube. There has to be parity of esteem. There has to be equal importance for research into living better with dementia and care, as there is for molecules and potential cures.

After the broo-ha-ha of the current election turmoil is over, I am hoping that some people can come together and help to develop a new English dementia strategy.

Maybe we can have this ready for 2016 to run until 2021?

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.

“Drop in centres”. Definitely “one to watch” in the new English dementia strategy.

Access to any sort of dementia service has become the focus of scrutiny in the English dementia strategy.

For example, NHS Bristol and Bristol City Council Health and Social Care have produced a strategy document entitled ‘Living well with dementia in Bristol’ to run 2011-2015. They helpfully provide the following table on page 32.


There is considerable interest in how much ‘support’ can be provided by the NHS and social care providers, and how much can be provided by charities and other voluntary entities.

A major faultline in policy is how the third sector can lower the barriers to entry for ‘other providers’ for dementia awareness, other than the usual suspects. There is a growing momentum that any awareness is to be welcomed, wherever it comes from, but ultimately this awareness should not be for knowledge for its own sake, but should be an application to encourage inclusivity.

And all services can be a bit rushed, especially any services, medical or legal, where the end point of funding is activity-based. But conversely what people with dementia and those closest to them, whether in an official caring rôle or otherwise, invariably mention is the need for time and patience.

“Drop-in centres” have attracted much interest of late.

They offer emotional support, companionship and practical advice to people, including individuals with dementia who wish to live well independently in the community.

They’re generally run by voluntary organisations, local councils and day centres. Drop-in centre sessions usually run for a few hours at a time, one or more times a week.

The volunteers at drop-in centres are generally there to listen and provide support to those who come along, as well as to encourage people to make friends and take part in activities that interest them. Activities are especially promoted in the NICE Quality Standard 30, a strategy document which has as its aim supporting people to live well with dementia. Activities can include things like games and quizzes, arts and crafts, exercise and relaxation classes. There might also be TV, computer and internet facilities. Some drop-in centres offer educational and life-skills workshops, on topics such as developing confidence.

Individuals who use drop-in centres often have opportunities to help make decisions about how the centre is run even, and decision-making, choice and control have become key planks of dementia whichever political party is in office.

The overall aim is to provide a friendly, relaxed and unthreatening atmosphere.

Drop-in centres support people with a very wide range of needs, including older people, young people, people with learning disabilities, deaf or blind people, refugees and asylum seekers, or People facing specific health conditions such as cancer

Many drop-in centres are also open to carers, which may include families and friends of people who have these kinds of support needs. Many people in some sort of ‘caring rôle’ do not consider themselves ‘carers’, numerous successive studies find.

Drinks and snacks are often available at drop-in centres and some also offer hot meals. Some centres can help arrange transport for people who find public transport difficult to use.

And ‘drop in’ approaches might be particularly positive for people living with dementia. Often people living with dementia find the diagnosis stigmatising, but invariably people living with dementia on receiving a diagnosis still wish to live life to the full.

There are lots of services available for people living in the community who would like companionship or support during the daytime. Day centres open for longer hours than drop-in centres and offer support to older people and adults with disabilities or mental health problems. There are lunch clubs for older people too. If you feel lonely or cut off from others in the community, or can’t leave your home very often, then you might like to benefit from “companion and befriender services” arranged through the drop-in mechanism.

‘Drop in centres’ have developed a momentum of their own in England. For example, Age UK Shropshire Telford & Wrekin have opened five Diamond Drop In Centres to support local people with dementia and memory difficulties, their families, carers and friends. Previously it was reported that carers in Faversham have access to a drop in centre in their own locality. This Kingsfield team had created the drop-in service to offer support and information for both their residents’ relatives and people in the local community who are caring for someone with dementia.

Norman McNamara, Founder of Purple Angels, announced this morning that there might be plans to launch a drop in centre in Exeter. Norman admitted to being ‘quite tearful’ at having organised a previous ‘Day Lewis – Purple Angel’ drop in centre, particularly of the busy nature of the location. But it is well known that Norman McNamara has achieved an enormous amount through a remarkable amount of personal determination, as he lives with a type of dementia called diffuse Lewy Body type. This all is a noteworthy development of a campaign which ‘thinks global acts local’. Their ‘global’ website is here.


Now it turns out that “Barchester” is in full support of the Purple Angel campaign. Norman had started this campaign in Torbay – an area with a solid reputation as a retirement destination. He began by generating awareness about dementia with local businesses and soon his iconic Purple Angel stickers started appearing in shop windows around the district to show solidarity and understanding of living with dementia

Norman 2

Many hope that ‘drop in centres’ will feature in the new English dementia strategy 2014-9.