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
Like D4Dementia on Facebook

Diagnosis – The day and the aftermath

Given that dementia is one of the most feared, if indeed not THE most feared disease in the UK and beyond, you could probably turn the moment of diagnosis (worldwide a new diagnosis of dementia is made every four seconds) into the basis of a horror story.

It is truly the news that no one wants to hear, and however much it can help to explain that which seemed unexplainable, it is for any individual and their family a life-changing moment. You may well feel angry, numb or very emotional. There may be tears, or it may be all about trying to maintain a stiff upper lip. In the hours, days, weeks and months ahead there will be questions, so many questions, and potentially a scarcity of answers. Of course some questions are unanswerable, the most notable being “Why me, why us?”

Then there will be the decisions, which you may be advised not to rush, and yet may feel you want to get out of the way just so that you don’t have to continually mull them over in your mind. How are you going to break the news to your family and friends? Do you even want to tell them? What about advanced care planning? Can you face making plans for a time when your dementia will be advanced and you aren’t able to participate in planning in the way that you can at the moment? Do you have a will and a Lasting Power of Attorney in place?

Add into that potential areas of conflict with your partner or those closest to you. Maybe they want to tell people about your dementia but you don’t want anyone to know. Maybe you don’t want to call what you’ve been diagnosed with ‘dementia’ through fear of stigma, but your partner does. Maybe your family want to access help and support services that you don’t feel ready to be a part of yet.

If coping with all of this wasn’t enough, crushing moments when you cannot hide from the truth can crop up unexpectedly and with alarming regularity. Handing in your driver’s licence. Visiting your GP. Having your ‘behaviour’ explained by your partner to people who have no idea about dementia, or a very stigmatised view. The sympathy that flows when people hear about your diagnosis – sympathy that you know is well-intentioned but makes you feel even more like a patient. Or the fact that friends and family stop talking to you and only talk to your partner. Even small things, like applying for travel insurance, can remind you of your diagnosed status.

Inside your head you may be thinking that you’ve let everyone down. You may feel as though you’ve been robbed of your future and the plans you had to enjoy your life. You may dread the thought of needing care, or of having to watch your partner caring for you. You may be wondering where you will live and how you will afford to pay your bills. Indeed, may just want to scream, cry and kick something (not the cat!).

For people who’ve been diagnosed with young-onset or early-onset dementia (dementia in someone under 65) there are often additional considerations. You may have to decide how to tell your employer. You may be facing losing your job and potentially not being able to pay your mortgage, and likewise for your partner if you need them to help care for you. You may still have dependent children who are relying on you, or ageing parents who need you to be caring for them in their mature years.

In short, a diagnosis of dementia has a ripple effect throughout every aspect of life that affects not just the person with dementia but everyone who knows and loves them. For most people, that life-changing moment of diagnosis will come during an appointment with a consultant specialising in dementia (an old-age psychiatrist), in potentially a very clinical setting, often with little offered in the way of help and support largely because the clinician hasn’t been given resources to signpost you to.

It may come after many months of waiting following your initial consultation with your GP, and will usually be as a result of extensive tests at your local Memory Clinic. It may not be a shock, or it may be the biggest shock you’ve ever had, but it’s important to remember that whilst so many aspects of your life may be set to change over time, fundamentally you walk out of that consultation room the same person who walked in.

A diagnosis should never mean that you go from being a vibrant, hopeful person to someone who cannot see a way out of the fog. Everything that you could do before you walked into that room you can still do when you come out of it, and if you are to live well with dementia you need to keep on doing as much as you possibly can for as long as you possibly can. It’s easy to get blogged down in the really tough stuff, most notably wondering how you may decline in the future, but if any disease should make you want to live for the moment, it’s dementia.

My dad astounded many a medic by living for 19 years with dementia, and having quality of life very late on. Back when my dad was diagnosed we didn’t have Memory Clinics, and due to the haphazard nature of how dad’s dementia was supported (or rather not supported) during the first ten years of his life with the disease, dad’s diagnosis came while he was an inpatient in the local hospital, with his ‘team’ diagnosing and us as his family simply being informed that he had been moved to an Elderly Mentally Infirm (EMI) Unit. When we asked why he had being moved, we were bluntly told, “He has dementia.” Only after demanding to see one of the consultant psychiatrists in charge of the unit did we understand a little more, but I can honestly say that pretty much we just had to ‘learn on the job’ , and we were still learning nine years later when he passed away.

In many respects, that is the nature of dementia. A few people have a very rapid progression into the advanced stages of the disease, and indeed pass away quite quickly afterwards. For most people, however, the decline is far slower, enabling a huge amount of occupation and enjoyment in life that provides priceless memories. My hope is that as we improve awareness, understanding, care and support that everyone’s experiences of diagnosis and the aftermath will be less of a horror story and more of an inspiring story.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook