Wednesday 6 February 2013

Part 2) When a label isn't enough

***This is a two part blog post***

Please read: Part 1) When a label isn't enough

Supporting someone throughout their dementia journey is vital
Supporting someone throughout their dementia journey is vital
Regardless of how much the government needs clear statistics of exactly how many people have dementia in the UK, presumably so that they can plan and fund services accordingly (we hope!), this must not come at the expense of the individual. Which is why, whilst I am pro early-diagnosis for those who seek it, I am completely against screening (or case finding) the population for dementia under the current proposals for doing this.

The plan that is currently in the public domain is for GP’s to assess all patients over 75 for dementia within their routine appointments. This means that you could turn up to see your GP with a problematic ingrowing toenail and then be asked questions about your memory. Moreover, since this is not an official screening programme, unlike for example the tests ladies are invited to attend for breast and cervical cancer, the patient will not have the opportunity to plan to take a family member or trusted friend to the appointment with them to provide support.

This covert tactic of screening (case finding) the population is both fundamentally wrong and goes against the principles of patient choice. It also undermines the patient’s relationship with their doctor, potentially destroying trust, and could lead to patients avoiding seeing their GP for health problems that could require urgent care or issues, like for example with vascular health, that could in the end lead to dementia if untreated. The only option left open to patients who need to see their doctor but do not wish to answer questions about their memory will be to refuse to comment (which still ticks the box that requires the investigation to have been attempted).

Within hospital settings, doctors are already required to assess all patients over 75 who have been in hospital more than 72 hours to see if they have dementia. Doctors are meant to use their discretion as to the ability of the patient to undergo such questioning if they are still very poorly, but with the NHS chronically overstretched, again this is likely to turn into another box-ticking exercise.

At this point, I should stress that in both primary care and acute medicine, it is of course possible that dementia may be contributing to the condition that the person has presented with, and therefore investigations for dementia in those cases would be necessary to treat the person holistically and are entirely appropriate and justifiable. However, random assessments based on age, without informed consent or the chance to have someone close to you present, are in my view unethical.

Screening is also not supported by the current guidance from the National Screening Service – their view is that an accurate method for screening the population for Alzheimer’s disease (just one form of dementia – imagine the complexity of screening for the many different dementias) doesn’t currently exist. If they are right, these covert plans could lead to many false positive results, a huge amount of unnecessary anguish and drugs being taken that shouldn’t be, as well as potentially life-changing decisions being made as a result of entirely inaccurate assessments.

I am also concerned that focusing on diagnosis in this very mandatory way, based largely on someone’s age, brings up other issues. It helps to re-enforce the viewpoint within the health and social care systems and the wider population that dementia is a condition of old-age, which it certainly isn’t exclusively at all. By doing this it means that potentially people with early-onset dementia (dementia in someone under 65) could be ignored because their age demographic doesn’t fit the ‘considered norm’.

I also personally feel it is very disrespectful to our older generation to subject them to this type of widespread scrutiny, or case finding as it is otherwise known, that I suspect may well be very unwelcome – indeed has anyone even asked this huge swathe of the population if they agree with this proposal? Dementia is a stigmatised condition and many people, especially older people, have very negative viewpoints about it and huge fears about developing it. Like most of us, they will increasingly know of someone with dementia, and may have heard extremely negative stories about their care and support. The last thing they want is to feel as though they are being herded like sheep into a particular pen. The health service really must grasp the concept that everyone is an individual and act upon that in every aspect of healthcare, rather than having one-size fits all tick-box exercises for everything.

Creating awareness, busting myths, tackling stigma, improving the breadth of specialist dementia services, removing the postcode lottery around accessing services, sorting out adult social care funding so that the system is fair and equitable, providing carers with the support that they need, and investing in therapies that make a tangible difference to people’s symptoms and improves their quality of life will naturally help to change perceptions of dementia, and encourage members of the public to come forward of their own accord to ask for help if they, or their family, feel it is needed.

At present, many people who are already diagnosed, and their carers, receive little or no help with understanding dementia, day-to-day living, or planning for the future. Placing potentially thousands more people into that vacuous trap is not helpful to anyone other than those who want to gather statistics. You may argue that accurate statistics are needed to plan services, but we do currently have a number for people diagnosed with dementia and we have so far done nothing to plan or implement services that support all of them, or from what I hear, even a majority of them.

So why are dementia diagnosis rates so patchy around the country? I don’t believe that this is as a result of there being a widespread ‘no cure so no point getting/giving a diagnosis’ culture. I suggest this correlates with the levels of awareness and support in those areas. If local health and social care services are run by sympathetic people with extensive training or professional interest in dementia, of course people with dementia who come into contact with those services are more likely to be diagnosed quicker and receive better care, reassurance and advice.

Equally, if local dementia activists have done a wonderful job of raising awareness, and numerous thriving community services exist and are well supported by local businesses and media, the ‘dementia message’ will seep into many more homes and dementia will not scare people in that community in the way that it might in others. If people hear about the good care and support that their friends, colleagues and neighbours have had when they first noticed dementia symptoms, they are more likely to seek help themselves if they develop problems.

In the end, like most things in health and social care, dementia diagnosis rates come down to your postcode. Perhaps the irony of these massive differences in the diagnosis rates between different health authorities only further highlights the need for ‘dementia friendly communities’ across the UK. If these truly existed within every community, dementia diagnosis rates would undoubtedly rise because people would feel comfortable talking about, and living with, dementia. Likewise, if we had effective, long-running  countrywide public awareness campaigns, like those mounted for certain types of cancer, again people would think, assess, understand and be more willing to come forward.

There are no quick fixes to turning the UK into a country where people with dementia are not stigmatised, where they and their carers are fully supported, where a diagnosis isn’t simply a useless label, and where communities are truly dementia friendly. This ill-thought-out screening/case finding plan is not the answer. Early diagnosis must involve patient choice and, crucially, post-diagnosis support. Built into that there must be involvement and support for those closest to the person with dementia, if the person wants that, at every stage of the dementia journey, from diagnosis to end-of-life, in order to make each individual dementia journey the best it can possibly be.

Bring all these factors together, and dementia diagnosis, care and support would be revolutionised in the most person-focused, carer-focused environment imaginable. The question is, can the UK rise to the challenge?

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886


  1. A very thought-provoking argument Beth and I would agree that any screening should be open, maybe at an annual health review so that, as you say, people have the opportunity to take someone with them. Dementia and the threat of it is a very scary prospect for many people and despite recent publicity I would say both sufferers and their families often are in denial. I agree that this condition is probably one that calls for the rules of confidentiality to be more flexible, especially where the sufferer may be at risk.

  2. We agree that generalised "screening" is not the way forward.
    When a patient presents with symptoms, there are various ways a GP can assess - for more on this check out our blog article on the difference between subjective and objective memory loss.

    Age is the most important factor; international prevalence rates for dementia are:
    65 to 69 1.4%
    70 to 74 2.8%
    75 to 79 5.6%
    80 to 84 11.1%
    85+ 23.6%

    In our experience, some patients and families benefit from a "diagnostic label", others don't - the skill in doctoring is both diagnostic accuracy as well as empathy and contextualisation to personalise care and treatment.

    We think GPs are an important part of the "dementia solution" and have just published a blog article explaining why.

    But patients are important too - many with early/mild dementia symptoms have a mixed presentation, and to provide accurate treatment and drug intervention requires an accurate diagnosis. "Why have only half my Aricept patients responded?" is one of the questions we get from GPs. The answer is that only half of the patients have dementia which is caused by Alzheimer's, the other half have dementia caused by something else and the diagnosis is incorrect!

    Just yesterday we had another patient referred to us with a "confirmed diagnosis" of vascular dementia/Alzheimer's. What they've actually got is something quite different and the drugs need to be changed.

    GPs need proper support so that they can do an excellent job for their patients.