The views of people living better with dementia, and their closest ones, matter intensely


There’s been a long history of people having difficulty in saying what they mean by ‘integrated care’.

Such debates nearly always converge on difficulties and ‘sustainability’ of funding. In the narrowest sense, it probably means health and care coming together under operational constraints such as pooled budgets and care coordinators. In the wider sense, it probably refers to the notion of the health and wellbeing of a member of the public being determined by standards in health and care, but also in the wider environment, such as transport, leisure or housing.

I personally don’t feel we are all ‘patients’ all of the time, as this means for me we are subject to a medical intervention of some sort. To explain what I mean here, I am an alcoholic in recovery. I do not take any pills to keep me in recovery – it’s simply a way of life. That is my belief; that is my lived experience.

Recent news headlines have drawn attention to the drive towards overmedicalisation. Deborah Orr did an excellent piece on it, and Dr Aseem Malhotra has been determined in getting this the exposure it deserves.

There’s been some confusion about how hospital patients live with dementia, and it might be that a figure round 45% is at the upper end of the scale. There has nonetheless been a helpful scrutiny of the experience of people living with dementia in acute hospital settings, with an acknowledgement that enhancing health environments has a wider rôle to play. Acknowledging that individuals have distinct identities, and are not simply fodder for the NHS ‘patient flow machine’, through respect of their biographies, through life story has played a huge in changing the narrative.

I have been both a junior doctor and a patient, in fact in the same major teaching hospital in dementia in London. Ward rounds are fast, and constitute the ‘operational business’ of seeing the patient briefly armed with recent investigations. But they are in no sense of the word the doctor getting to know the patient. They’re a snapshot, in reference to what more has to be done on an admission, with a view to discharge. People with dementia end up in acute hospital for the most part not directly due to the dementia but due to a concomitant problem such as pneumonia or urinary sepsis.

‘Measuring the patient’ serves no function unless you actually want to listen carefully to, and not just ‘hear’, the experiences of people with dementia and their closest ones. That’s why it’s important to listen to people’s point of views; a carer might wish to accompany a person with dementia into hospital, and that person with dementia might want it too. And ‘views’ on a service are not the same as the ‘experience’. I know somebody’s experience of how he received the diagnosis of dementia in a busy outpatients’ clinic in a noisy environment – but I also know full well his view on it, and I’m pretty certain it has never been acted upon by his local NHS Trust to improve the service delivery. And there’s little appetite of Big Charity to want to use their research monies to investigate this.

And yet despite this, a person living with dementia is actually the expert in his dementia in his place and his time, and he’ll tell you that he is far more than his condition. It’s essential to provide an environment where people can talk about their views, beliefs, concerns and expectations in an un-rushed, unstructured way, so as to bring out the details of greatest importance or interest to patients using the NHS or people using the care services.

A huge amount of effort is put into the machinery of feedback for the NHS but my experience of buckets of complaint forms and incident forms which were simply filed in file 13. If a person with dementia feels that something has gone ‘right’, in other words he has received useful advice about design of his home environment, useful help on managing other health conditions, or felt that he is living in appropriate housing, such ‘good feedback’ should be harnessed. Admittedly, this is probably less common than complaints, but they all feed into a culture of improvement, and it’s essential that the workforce should have the values where they should wish to embrace improvements in health and care, for both research and service provision.

I believe strongly as someone who has trained in the law that rights are useless unless they acted upon. We shouldn’t be afraid to tackle poor care knowing what we know about equality and human rights through bodies such as the Equalities and Human Rights Commission, in, say, upholding dignity under a right to be free from degrading treatment. But likewise we can’t rely on the market to deliver this in a patchy piecemeal market – private providers also need support in understanding the picture. People do need support, and they do need to feel there is some immediacy about an appropriate action happening.

A big part of where things have gone wrong in certain areas of service provision or research, such as in diagnosis and post-diagnostic support of people from various ethnic groups, LBGT groups, people with longstanding intellectual difficulties, younger onset dementia, for example, is that the systems are not sufficiently flexible and do not have the capacity or resources to cope. Co-creating improvement in a spirit of partnership, not “bums on seats” on panels, must be the way forward here.

Ultimately, I want professionals, academics, commissioners, practitioners, amongst others to be able to say, “You said and we listened” from the lived experiences to inform on policy in dementia in England. Sadly, we still are a long way from that, but we’ve begun in the right direction I feel.

‘Dementia friendly’ checkouts: more than a fad?

Tesco and Asda are two of the stores which have introduced ‘dementia friendly checkouts’ in supermarkets according to two reports.

Both reports refer to ‘training’ even though the Alzheimer’s Society state clearly ‘Dementia Friends’ is about information sessions, not training Both reports refer to the ‘Dementia Friends’ programme and the Alzheimer’s Society. I myself am a ‘Dementia Friends Champion’, and indeed I am due to give an information session at BPP Law School next thursday (details here).

Dementia Awareness Week was about sharing wider knowledge about dementia, rather than promoting the Alzheimer’s Society solely though the Alzheimer’s Society should be congratulated for giving the week momentum; and the the success of this, arguably, is reflected in the diversity and quality of tweets using the hashtag.

Alzheimer’s Research UK came up with an intriguing idea – the auction of hats to raise money for research into dementias. I myself know recipients of these grants, and the work invariably is outstanding. We must be keen to promote research into care as well as cure, however, and this needs the correct political lead.


Of course, by doing ‘Dementia Friends’ you’re not supposed to be “locked in” to working only as a volunteer for the Alzheimer’s Society. There is no such exclusivity requirement. And there’s no better time than now to campaign for dementia, such as the petition here against Hull Clinical Commissioning Group in their short-sighted decision not to commission Admiral nurses (a type of clinical nurse specialist for dementia).

The ‘dementia friendly communities’ policy tranche is indeed global, and spearheaded by a number of protagonists, including Innovations in dementia and the Joseph Rowntree Foundation. At a time when there is still much stigma and prejudice against dementia in society, the aim was to provide an environment which was conducive for people living with dementia, friends or families to lead fuller lives. This is, of course, a very laudable policy aim, and involves not just the health and care systems, but the wider ‘social determinants of health’ such as retail and banking, housing and transport.

It is worth at this point considering the irony of the approach of ‘dementia friendly checkouts’ in the context of the ‘Dementia Friends’ programme. One of the five key messages of this information session programme is that ‘There is more to the person than the dementia’. This was explained to me last year in Glasgow by Joy Watson as “putting the ME in deMEntia”.


The issue is that in person-centred approaches in dementia post-diagnostic care and support people aren’t defined by a label. For example, you should be very careful about the use of the word ‘elderly’. There are some NHS Trusts that define ‘elderly’ for the purposes of their acute medical take as patients above the age of 65; others above 85. And, as Chris Roberts said to me once, the differences between people aged 55 and 65, 65 and 75, 75 and 85, can be big or small. We all know 68 year olds who appear quite ‘frail’ but 85 year olds who appear quite ‘spritely’. But the issue is that, as far as commissioning is concerned in the NHS and the voluntary sector, things tend to get defined by their labels, such as new ‘million pound frailty units’. I’ve seen it before – that policy based on fashion or trends invariably ends in tears.

I think if you chat with people what they think about supermarket checkouts you will get a proportion of people who report that they’re chaotic stressful places. Many people without dementia dislike them. I in fact dislike them, not living with dementia; which is why I buy my shopping online. I also don’t know many people who meticulously count their coins in paying for their weekly shopping, so huge banners with coins may not help.

People living with dementia often describe members of the public raising the volume of their voice at them as if they’re ‘stupid’. It could be that you have problems in recognising the shapes of coins. This is called a ‘visual agnosia’. I know the late Sir Terry Pratchett described not being able to recognise a 50p coin from its shape, which is a touch form of the same cognitive condition, called ‘tactile agnosia’, which can signpost a diagnosis of ‘posterior cortical atrophy’ type of dementia.

As Pratchett was reported to have said,

“For some, they might struggle in a supermarket with finding the right change. That nagging voice in their head willing them to understand the difference between a 5p piece and £1 and yet their brain refusing to help them. Or they might lose patience with friends or family, struggling to follow conversations.”

Again a big banner won’t help. And for people with classical Alzheimer’s disease their long term memories will be very good as opposed to their short term memories.

A more appropriate term for examples such as the ‘dementia friendly checkouts’ might be ‘dementia inclusive communities’ – and this is indeed keeping with rights-based advocacy, where stakeholders uphold their equality (and for the time being human rights) rights under the law. But there maintains for me, and many others, this stubborn strand in policy in whether it is in fact creating inclusivity or ‘otherness’ for “people with dementia”?

“People with dementia” is a homogenous term which is not only an injustice to the hundred or so different types of dementia but also an injustice to the 47 or so million people living with dementia all with different abilities in cognition. ‘People with dementia’ are most likely to have cognitive disabilities more than ‘people with bowel cancer’, but one must be mindful of the fact one would think twice about having a special shopping aisle for people with operated bowel cancer (for people with colostomy bags).

Of course, the argument is at risk of getting utterly ridiculous. But this issue became very vibrant indeed as one of the producers of the film “Still Alice” asked the people living with dementia in a crowded lecture theatre in Perth, Western Australia, to stand up to identify themselves. The general ‘feedback’ is that this stunt was generally felt to be rather humiliating, and Kate Swaffer, Co-Chair of the Dementia Alliance International (DAI), received a number of complaints about it. The DAI is the leading international group consisting only of people living with dementia.

We are in a different place with stigma and dementia to where we were with physical disability, possibly. I am physically disabled, so I feel “within my rights” to discuss this. Many people find the word ‘disabled’ and being in a wheelchair “empowering” – many disempowering. You can take your pick as to whether people with dementia want to be identified in a separate shopping aisle in a public supermarket. But this criticism is not one which I have intended to level at proponents of ‘dementia friendly supermarkets’ – it’s simply a wider policy observation as to whether, yet again, the policy promotes inclusivity or otherness. There will be people who believe that ‘all publicity is good publicity’, but you can unfortunately have the wrong type of publicity (like the wrong type of snow).

And all this does matter if we are to bridge the lived experience of all people who’ve received a diagnosis of a dementia and what the crude policy levers are trying to achieve. I do, however, wish to thank the people behind ‘dementia friendly checkouts’ for their excellent work.