Are individuals living with dementia “recipients” of care?

Language is very important. Only this week, the media was stuffed full of talk of dementia being a ‘horrible disease’, and people ‘suffering’.

A recent Telegraph article cited, “Health Secretary Jeremy Hunt says it is “utterly shocking” that only half of people suffering from dementia are being formally diagnosed.”

Society has a certain image of dementia. It really is no use denying that this image is horribly negative, and feeding on this fear can be low-hanging fruit for raising funds through charity.

In this scheme of thinking, those with the dementia are only viewed through the prism of their illness, and this is often reduced to the image of its last and most tragic phases.

It is as if as soon as a diagnosis of a progressive dementia is made, the person in question, it is perceived by the rest of society, automatically becomes incapable of taking any autonomous decisions, loses his/her personality and identity and immediately needs to be cared for.

Language

In reality, however, this illness can develop quite slowly: between the moment when it is diagnosed and the terminal phase, there may be years of development. Moreover, people living with the illness can rarely have the opportunity to express their thoughts and feelings about it: there is communication about them, but only rarely with them. The individual sadly disappears behind the blanket label of an illness.

The term “suffering”, however, sounds negative, and does not support the concept of “personhood”, and certainly does not fit with a philosophy of “hope” and “wellness”.

The way the NHS has latterly been structured as a market also reinforces this customer-supplier master-servile relationship. Dementia care is a ‘service’ you can pay for, with or without a personal health budget.

The dominant notion itself that the need of people with dementia to socialise should be met by “services” is disempowering, for the concept of service incorporates the notions of “providers” and “recipients”; of the “helpers” and “the helped”, of “us” and them”.

These notions further perpetuate the stigmatising assumption that people with dementia are only able to participate in relationships as “receivers”, and that relating to them is a problem for those who do not have the disease: they further advance the widespread perception that people with dementia are, essentially, a “burden” on their families and society.

This term “burden” can perhaps help validate the ‘burden’ some caregivers experience, but should not be assumed and should be avoided when speaking in generalities such as public presentations.

This language and terminology are in desperate need of change, and the prevailing perception of people past the first stages of dementia as just receivers of care, and users of services, needs drastic reframing.

The truth is that, as the symptoms of the disease progress, people with dementia can still play an active role in society, if provided with support, and this support can very often be provided by fellow citizens, rather than by professionals paid to deliver a service.

The purpose of person-centred language is to recognise the impact of language on thoughts and actions, to ensure language does not diminish the uniqueness and intrinsic value of each person.

Personhood is pivotal. This is the standing or status that is bestowed upon one human being by others in the context of relationship and social being. It implies recognition, respect and trust.

The aim is to create the positive conditions where the person can live without stigma; where people are treated with warmth and authenticity, listened to without judgment and are given opportunity for self-expression.

There are, however, ways to ‘reframe’ this debate.

Framing is a fast developing concept, as much in communication sciences as in other disciplines. This is partly due to the fact that it is a rather flexible approach that lends itself to many applications.

New framework

When there is a question relating to knowing how a particular subject is presented, in the media for instance, framing immediately springs to mind.

Instead of painting the illness as a homogenous and unchanging totality, it would be preferable to place the accent on its progressive and developmental nature.

One can put the accent on continuing to be a real person despite the decline due to the illness: acknowledge the personality, the identity and the life journey of those with a progressive dementia.

One can also develop empowerment and social inclusion with people with a progressive dementia. Such individuals are more than passive and dependent consumers of help and care services. They have resources that should be mobilized. The principle of inclusion implies that society is composed of all its citizens. However, this needs competent leadership.

Let those who living with dementia speak. It will provide others with one of the most powerful counter-examples in relation to the current dominant image, which often makes the individual disappear behind his/her illness.

Let your respect for those living with the dementia be obvious in what you have to say.

It is useful also never to forget that people with Alzheimer’s disease also have their own life story, their own personality and character. This is because their long-term memories are relatively preserved, due to a phenomenon first characterised by the French neurologist Ribot in the 1880s. Enable these aspects to be expressed too.

Those who disseminate messages, especially via texts designed to influence people, may deliberately choose a frame that the reader is supposed to pick up and appropriate so as to henceforth view reality in this way.

Given that frames form part of any culture, many of them are common to both the sender and the recipient of a given message.

The question of whether framing is a conscious process remains open to discussion: how far will the writer of a given text deliberately choose a frame that serves his own interests?

As we approach the G8 leading on the subject of what is important in dementia diagnosis, research and care, it is all the more important that we frame the discussion properly.

There are so many stakeholders in English dementia policy, it can be quite uncertain know where the current dementia policy has come from.

David Cameron has often argued that ‘it is not where you’ve come from, it’s where you’re going to’. If one of the goals is destigmatising dementia in society, how we articulate the present debate today is vital to our progress tomorrow.

This means not talking about ‘horrible’ and ‘suffering’ in a way as to encourage ‘moral panic’.

This means treating people with dementia, living at all stages with any particular condition, with the dignity they deserve; this will enormously help carers too.

Jeremy Hunt’s message on dementia should have been ‘screened’ for damaging myths

My presumption is that I wish to be extremely positive about HM Government’s own volition about leading the G8 with the subject of dementia.

Also, the “Prime Minister’s Dementia Challenge”, which sets out a roadmap for dementia for this year and next, has been a success which I much admire.

David Cameron and Jeremy Hunt, and their team, must rightly be applauded.

However, some accidental problems with the latest message appear to have crept in unfortunately.

The article in the Telegraph says that, “Health Secretary Jeremy Hunt says it is “utterly shocking” that only half of people suffering from dementia are being formally diagnosed.”

You can watch the video here.

Recently in English policy a skirmish over screening has been temporarily staved off by certain stakeholders avoiding ‘the S word’.

They have decided to plump for the ‘C-word instead’.

“Case-finding”

But in fairness Jeremy Hunt MP, Secretary of State for Health, in the actual “piece to camera” does not use the word “suffering”.

This is particularly ironic as Hunt later says, “”We’ve got to overcome the stigma.”

A major thrust of dementia must be to destigmatise dementia, by emphasise the myriad of things which can be done to help individuals living with dementia, like improvements of the house and the outside environment, non-statutory advocacy or dementia friendly communities.

Hunt’s attempts to overcome the stigma are, unfortunately, somewhat mitigated by his claim that,

“Dementia is a really horrible condition.”

Hunt mentions that “This is not surprisingly because memory is an intrinsic part of all of this.”

The meme that memory problems are synonymous with dementia remains a persistent toxic misrepresentation.

Not all memory problems are dementia (depression can cause profound memory problems.)

Not all dementia presents with memory problems. One of the most common forms of dementia in the age group below 60 is the behavioural variant of frontotemporal dementia.

This presents typically with an insidious change in behaviour and personality, often not noticed by the person himself or herself (but noticed by somebody close by.)

Even some of such individuals can present with plum-normal brain scans.

Advanced MRI brain scans

This small fact would aggravate hugely physics experts to sit on dementia clinical steering groups perhaps, if they knew.

A number of parliamentarians have recently emphasised the need for prevention.

This is indeed a worthy claim.

“You can change your lifestyle to help to stave off the diagnosis.”

However the evidence for this claim is extremely scant.

Non-clinicians in policy must not give false hope to members of society.

This is extremely irresponsible.

Hunt continues, “GPs have been reluctant to give a diagnosis as they’ve thought that ‘nothing is really going to happen'”

There has been in recent years a language depicting war, between GPs and persons with a possible diagnosis of dementia.

There is a very damaging myth, perpetuated by some influential people in the third sector, that GPs are actively withholding a dementia diagnosis in some people.

This claim undermines the credibility and probity of medical professionals, but GPs are relatively defenceless against such a slur.

Hunt says, “If people are worried, come and talk to your GP.”

A moral dementia policy is giving correct support including non-pharmacological interventions to support people living with dementia, as well as support for carers who often experience significant pressures in caring themselves.

People need to be accurately diagnosed with dementia. A wrong ‘label’ of dementia, for a person with no dementia, can do much harm.

Nonetheless, the idea of identifying correctly new people with dementia such that they can be given the right support is a commendable one.

It’s essential though that we do not enmesh this with this policy goal becoming targets, and clinicians being thrown off track by perverse incentives which are not directly beneficial to patients of the NHS.

#G8summit: Hazel Blears MP (@HazelBlearsMP) praises patients and carers, and calls for research into living well with dementia

On Thursday 28 November 2013, MPs debated the G8 summit on dementia. The debate was chosen by the Backbench Business Committee following a representation from Tracey Crouch. The application for debate was also sponsored by Hazel Blears and Paul Burstow.

This discussion, by parliamentarians, was in fact a very fair and balanced consideration of the practical issues facing the contemporary scene of dementia.

A lot has hopefully moved on from the attitude that, “Dot has gone a bit dotty”.

Diagnosis of the dementias is only part of the story.

The subsequent ‘treatment’ and ‘cure’ for dementia have been actively debated, but this parliamentary debate acknowledged that we have come on ‘leaps and bounds’ for enabling individuals with dementia potentially to live positively with dementia.

There’s clearly a complex parapluie of factors at play here. Does a current lack of cure for dementia lead to more stigma, or does stigma contribute to a current lack of cure for dementia?

Beyond the Prime Minister’s Dementia Challenge, there will need to be a long-term dementia strategy to expire next year, it is argued.

The UK is leading the discussion of dementia for the G8, but embarrassingly does not have a strategy yet for 2025 compared to some of its international colleagues.

There has been an increase in investment in dementia research, but this has come from a very low base, representing less than 1% of the annual science budget. It is hoped that this budget will increase, including funding for prevention as well as quality-of-life and wellbeing.

A great thing about this debate was its acknowledgement that not all dementia is Alzheimer’s disease; this is crucial for us to consider how best to allocate monies for research into other types of dementia too, such as the frontotemporal dementias.

brain areas

Another brilliant aspect was an appreciation that there needs to be support for carers, for avoidance of ‘crises’ – including support for the ‘Dementia Action Alliance’ – in the run-up to the #G8 dementia and beyond.

You can watch this excellent debate here.

Hazel Blears (@HazelBlearsMP) is the Labour MP for Salford. Her submission to the #G8 debate, as provided in Hansard, is as follows. Hazel is well known to be a ‘champion’ for dementia.

Hazel Blears (Salford and Eccles) (Lab): It is a great pleasure to follow the hon. Member for Chatham and Aylesford (Tracey Crouch), my colleague on the all-party group. It is also a great pleasure to see you in the Chair, Madam Deputy Speaker. This is my first opportunity to contribute to a debate under your chairmanship, and I would like to congratulate you on your election.

While I am handing out congratulations, I would like to congratulate the Prime Minister, too, on the personal commitment he has shown on dementia. [Interruption.] Credit where it is due. Those who have the presidency of the G8 have an opportunity to name a subject around which they would like to mobilise the international community. In playing his card at the G8, the Prime Minister has chosen dementia. I commend him for taking that action. I believe that international collaboration will be the way to achieve the next big leap forward, particularly on the research agenda. I support what the Prime Minister said at Prime Minister’s questions yesterday—that this issue is not a matter only for world leaders, important though they are; it is a matter for every single person in the community, whether they be a world leader, a health Minister or an ordinary citizen. Everybody has a role to play.

I shall start with the people who have dementia, along with their families and their carers. When we promote policy, do collaboration or talk about international research, we must constantly remind ourselves that the people with the disease and their carers and families are usually the most expert people in the system. Therefore, the services that we provide, the quality of care and the innovations we develop have to be shaped and guided by those people. We must empower them to make their voices heard in this debate. When we bring together our creativity, our imagination and the huge brain power in the research community, we must always bring to this issue, too, our own humanity. We must remember that people with dementia are valuable and loved human beings. If we can keep that at the forefront of our minds, we will make progress and be doing absolutely the right thing.

During Question Time yesterday I mentioned a lady called Joy Watson. I met her a little while ago. She is only 55, but she has early-onset dementia. Her family was devastated. When she went into shops, she might be a little confused over her change or what she needed to order, and the shops—and sometimes the customers—would be irritated with her, tutting and asking her to hurry up. She took to wearing a badge, which she designed herself, saying “I have got Alzheimer’s; please be patient with me”. She should not need to do that. Nowadays there is a scheme—I think it is called the purple angel scheme, and Joy is promoting it—so that people can wear a purple angel on their T-shirts as a means of raising awareness in every single part of our community.

In Salford, we have worked on this agenda for a number of years. We have just formed our dementia action alliance, with 30 organisations now committed to action plans to make us, I hope, the first dementia-friendly community in Greater Manchester. As well as health, education and housing bodies, we have the Lowry arts centre and our shopping centres included in the scheme. I think we have the first private-hire taxi firm in the country to be involved in this, Mainline Sevens taxis. It has trained 400 drivers and has an account system so that people with dementia do not have to fiddle with their money when they get in a taxi. All those groups are now dementia aware. That shows the really practical things that can be done.On the research side, I am delighted to say that tomorrow, Salford university will launch the Salford Institute for Dementia, bringing together the faculty of health and social care with departments dealing with the built environment, computers, IT, arts and media—showing the multidisciplinary approach that will apply. That group will draw together and disseminate research on living well with dementia. I think this is a fabulous academic development.

Hazel Blears therefore congratulated the Prime Minister for choosing dementia as a topic he wished to talk about.

It is noteworthy that patients themselves and their carers are the most expert in these complex conditions, and their voices must be heard.

Few will disagree with this.