Delivering a dementia diagnosis

There are many times in a person’s life with dementia that are described as pivotal. Often these are the difficult, crisis occasions that create the negative narrative that is so commonly associated with dementia. But after my recent personal experiences of dementia in my wider family, I’ve found myself reflecting on what I feel is arguably one of the most, if not THE most pivotal moment in a person’s life with dementia - their diagnosis.

As I’ve written about many times, my dad’s diagnosis took ten years, involved a catalogue of missed opportunities, a crisis that could have killed him, and ultimately when we finally heard the words that he’d been formally diagnosed with dementia, they came when we visited him in hospital and found his bed empty. The nurse said he’d been moved to the Elderly Mentally Infirm (EMI) Unit having been diagnosed with dementia.

Fast forward 14.5 years and for most people in the UK things have improved. We now have memory clinics, and the voluntary Memory Services National Accreditation Programme (MSNAP) from the Royal College of Psychiatrists that involves regular peer reviews (I am an MSNAP Peer Reviewer). Multidisciplinary teams staff these clinics, bringing a wealth of different skills and experiences that are vital in giving patients the very best diagnostic experience.

But not everyone has the type of experience I’ve seen in some of the best memory clinics in England, and when the experience isn’t good the effects last long after the doctor has delivered their clinical judgement. Listening to the diagnostic experience one of my in-laws had in South Africa last year left me with a mixture of sadness and anger - no person should have such a poor experience given all of the best practice examples available from many different countries (including the UK), and bear in mind that we are talking about private healthcare here, where the person is the very definition of a consumer.

My feelings left me reflecting on what a good experience really looks like from the person’s perspective, and I want to share those thoughts with you for this, my first D4Dementia blog of 2018. Whether you are a person concerned you may be developing dementia and could be seeking an explanation for your symptoms in the coming months, a relative worried about a loved one who you may go on to accompany to diagnostic appointments, or a clinician responsible for any part of the diagnostic pathway, I hope this list will help you.

1)     The person must own their diagnosis

This is the singularly most important aspect of diagnosis. Dementia remains stigmatised, particularly amongst older generations who still remember the asylums and labels of ‘madness’ that may have formed their viewpoint of dementia many years ago. The person needs to be personally involved and addressed at every point in the diagnostic process, and when the final verdict is delivered, it has to be communicated to the person first and foremost, in the most appropriate way for that person and by the most appropriate clinician. Anything less than this and the risk of the person not believing or trusting in the diagnostic process and the outcome of it will massively increase, which in turn can have long-term ramifications.

2)     Family can help... and hinder

It’s often said that a dementia diagnosis isn’t just given to the person, but to their whole family and wider network. Whilst as a daughter whose father lived with dementia I would agree with that, there is always a temptation to involve family members in the diagnostic process more than the person themselves, sidelining the very individual who is potentially living with dementia. Clinicians often choose to speak to family members because it’s perceived as easier and the information being gathered is seen as more reliable. At best that’s insulting. At worst it pits family members against their loved one with dementia. Marginalising the person is likely to leave that individual feeling that everyone is ganging up against them, which is a recipe for destroying relationships at the very time when they need to be at their strongest.

3)     The diagnostic process must be fair and thorough

For a person to believe and trust in their diagnosis, the process must be comprehensive, transparent, never rushed and totally individualised. Attempting even preliminary investigations when the person is unwell with another condition or infection is, in my view, utterly unacceptable. The person must be at their best to know in their own mind that they are able to give of their best in tests. Equally from a clinical perspective, you want an accurate measurement of the person’s baseline or, if you are tracking from a baseline, an accurate picture of where the person is now. Diagnosing just to tick a box, earn a financial reward (as has been available in the past in England) or prescribe certain drugs is never, ever justifiable.

4) A few words that change a person’s life

I’ve been very lucky in my work with MSNAP to hear from many people living with dementia and their family members who’ve had nothing but praise for the doctors, nurses, therapists and advisors who they’ve encountered during their diagnostic experience. How the diagnosis is delivered is a key marker we look for during MSNAP peer reviews and with good reason. An empathetic clinician who delivers the news of a dementia diagnosis with kindness and clarity, tailoring the level of information to the person, understanding what a momentous moment it is for the person, and allowing time and space for their carefully-chosen words to sink in is a clinician others less adept in these situations could learn a huge amount from.

5) Don’t abandon the person and their family

I couldn’t write a blog about diagnosis and not touch on one of the aspects of dementia care and support that I am most passionate about - post-diagnostic support. Even when a diagnostic process has fulfilled all of the aspects I’ve outlined above, the weeks and months after the person’s diagnosis can leave the individual and their family feeling abandoned and having to cope alone. This is when the risk of depression for all concerned can exponentially increase, and life can begin to unravel pretty rapidly and most definitely not in the direction of ‘living well’. Accessing peer support (including through DEEP and DAI), carer support, making environmental modifications, exploring rehabilitation, reablement and therapies to combat distressing symptoms are just a few ways to ensure that a good diagnostic experience is followed by an equally positive post-diagnostic experience.

Until next time...

You can follow me on Twitter: @bethyb1886
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One million friends, but we need specialists too

Like many people who have supported the Dementia Friends initiative, I was delighted to hear the announcement that the target of creating one million Dementia Friends was recently reached.

Dementia Friends is the UK Government's initiative, in partnership with the Alzheimer's Society, to increase basic awareness of dementia within, initially, England but now also in Wales and Scotland. To become a Dementia Friend you undertake training, either in person or online, and are asked to commit to an action as a result of your increased knowledge of dementia. To become a person who delivers the training - a Champion - you complete a one day course and are then equipped with resources to go back to your community and hold face-to-face training sessions.

I trained as a Champion in May 2013, and although I wouldn't say that every aspect of Dementia Friends is perfect, its benefits should be recognised. Increasing dementia awareness, even at the most basic level, is generally a positive step forward. Likewise, giving people something to belong to by giving them a badge, and a real sense of joining a social movement for change is also a positive example to set.

Sporting my Dementia Friends badge

Some of the main problems with Dementia Friends have come from the name itself, which some people have misinterpreted as suggesting that people who become Dementia Friends then go out and befriend random strangers who are living with dementia. Equally, the idea that people are 'trained' gives the impression that this is comprehensive dementia training which replaces other forms of more in-depth, and potentially costly, education.

To be fair to those who have pioneered Dementia Friends, both of these common myths are roundly condemned by the official literature that accompanies the initiative, but never-the-less, I still encounter health and social care organisations who believe that giving their staff Dementia Friends training means they have trained them in dementia care. They have not.

Dementia Friends isn't without its critics, and equally its hardened enthusiasts. I sit somewhere in the middle. I like the basic concept, the positive way it's been embraced by people who have never even thought about dementia, and I am happy to wear my badge. Indeed it goes everywhere with me and has proven to be a great conversation starter.

But where to now? The next target is to create another three million Dementia Friends, which certainly demonstrates ambition, but while we increase the community-wide understanding of dementia, there remains a question mark over how much money is going into the specialist support that is desperately needed.

The training of health and social care professionals is still clearly not at the level it needs to be, and may be many years away from universal tangible improvements, no one really knows. The quality of training in health and social care settings is hugely variable, and the new Care Certificate will only go some way towards bridging that. The vast majority of training still never really gets to student's heart and soul in a way that will be utterly unforgettable, and will permanently improve their practice and inspire them to deliver the very best care. Such an impact is as vital for newcomers in health and social care as it is for those who have been working in these professions for numerous years.

For people who are living with dementia and their carer(s) and families, access to dementia support workers, befrienders and other associated facilitators and providers of support and information is patchy and their skills aren't universal, so if you happen to be assigned a hugely knowledgeable and empathetic individual that’s great, but you may very well never meet such a person. Equally, there is no national programme to offer training to people with dementia or their carer(s) in a bid to help them to live as well as possible throughout their life with dementia.

The idea of dementia coordinators to help those affected by dementia navigate the services they might want to access has long been muted, but again, this isn't universally available. There is an expectation that GP's coordinate, but you can't do that effectively in 10 minute appointments, and besides, many GP's would argue that they need more specialist training in dementia to take on such a role. 

Primary care and community (district) nurses are potentially ideally placed to provide specialist dementia support, especially in the case of community nurses who are visiting people at home. However, there is no national scheme to recruit and train the additional numbers of nurses who would be needed in order to provide this type of service to everyone who wants it, and besides, where would the money come from?

Then of course there are Admiral Nurses - specialist dementia nurses who are to dementia what Macmillan nurses are to cancer. Admiral Nurses have been credited with providing invaluable support to families affected by dementia, in some cases even saving carers from potential suicide, but they are not trained by the NHS or Social Care. Admiral Nurses are provided by Dementia UK - a charity who are dwarfed in matters of dementia policy and strategy by the Alzheimer's Society. 

Admiral Nurses are seen by many people as an expensive option, but evaluation exercises are starting to prove otherwise, and frankly even if they are an expensive option, if they provide the support that families need then I would suggest that in a compassionate society that’s aiming to lead the world in dementia care and support, it is a price worth paying.

The money that has been invested into creating the social model of dementia awareness (£2.4m is quoted in this press release announcing Dementia Friends, while Public Health England issued a call for advertising agencies to pitch for the ‘Dementia Movement’ brief in 2013) may have been well spent considering targets have been reached. It can only be hoped that our communities are enhanced by having this greater understanding of dementia. 

My fear, however, is that without the specialists to call upon for each and every person affected by dementia, the overall aim of enabling people to live well with dementia will be lost. I’m sure that life for my dad would have been improved through living in the age of one million Dementia Friends, but I also know that through the many difficult challenges we faced, the decisions we had no idea how to make and the questions we had that went unanswered, that families affected by dementia often need a bit more than just a friend.

Until next time...

You can follow me on Twitter: @bethyb1886

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