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...

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Missing the morning chorus - Life with hearing loss

Hearing is one of the senses that I believe many people take for granted. I think the general assumption most of us make is that we are hearing everything, or at least everything we think we need to hear, and that hearing loss is something that hasn’t happened to us.

I had a bit of a wakeup call regarding my hearing earlier this year. I first noticed it when I was struggling to hear our baby crying upstairs, and it scared me – was I losing my hearing? As it turned out my hearing ‘loss’ was due to a build-up of wax, a common problem that anyone can be affected by, but it did make me think, particularly about how older people who are living with age-related hearing loss might experience the world around them.

The problem with age-related hearing loss, and the reason so many people struggle to recognise hearing loss as they get older, is because for the vast majority of individuals affected it is such a slow deterioration that they just don’t realise they are starting to miss parts of sounds. As time goes on it becomes more widespread, but the person is so used to missing sounds they just don’t realise that the richness of the audible world around them is slowly diminishing.

This has been of particular interest to me lately, as my mum has recently been fitted with hearing aids. I accompanied mum to her first appointment, and the result of her hearing loss hit me hard when the audiologist was playing birdsong to my mum and she couldn’t hear it (without hearing aids), but I could hear it clearly. Imagine a world where you don’t hear the morning chorus?

So if my otherwise fit and healthy 70+ year-old mum can need hearing aids, how many other people are likely to? The answer is probably quite a few, and certainly more people than those who are currently fitted with hearing aids. Sadly, hearing loss remains stigmatised in a way that correcting your eyesight isn’t. Wearing glasses, or contact lenses, is a way of life for many people I know, but suggest wearing a hearing aid to a person who doesn’t believe that they have hearing loss and you may as well be suggesting they have giant comic ears mounted on the side of their head.

Many misconceptions contribute to the stigma associated with hearing loss, including:

·        Feeling like a failure. It’s not a failure on the part of the individual that they aren’t hearing as well as they used to – for most people, age-related hearing loss is simply about the fine workings of the ear beginning to wear out, purely because they’ve been used so much. A sign of a life well-lived I’d say.

·        Fear of being ‘tested’. Having a hearing test is no different to a sight test in terms of the fact that there is no ‘right’ and ‘wrong’. It’s a healthcare assessment that is designed to diagnose any problems you’re having.

·        Audiologists want to sell you something you don’t need. A professional audiologist is there to help – if you don’t have hearing loss, or hearing aids won’t help you, then they should be honest about that and if they aren’t, seek a second opinion.

 

One of the biggest problems with gradual age-related hearing loss is that it’s often those around the person with hearing loss who become very frustrated with the person’s inability to hear things that others are hearing easily. Any child with a parent who has hearing loss will be tempted to resort to nagging them to go to an audiologist, I did, but educating yourself (something else I did) is much more helpful when creating a more constructive conversation.

The most extreme example of the consequences of age-related hearing loss that I’ve encountered concerned a person who went to see their doctor because their family believed that they were developing dementia. On putting the person through an audible memory test, the person scored so badly that the doctor also believed that they had dementia. It was only when the person’s hearing loss was discovered, corrected, and they were re-tested that it became clear that they hadn’t heard half of the memory test and therefore could never have answered correctly.

Hearing loss can be very isolating, particularly in social situations, sometimes making a person avoid going out if others are getting irritable with them. It can ruin the enjoyment of TV, the radio, going to the cinema and attending concerts: Imagine only hearing parts of your favourite piece of music. And as I’ve already mentioned those subtle sounds of everyday life, like birdsong, can be lost, leaving a person’s world far less rich than it might otherwise be.

There are also problems when sounds become distorted, or key sounds that a person needs to react to urgently are lost, like the sound of an upcoming car when you’re crossing the road. Untreated hearing loss is even being associated with an increased risk of dementia, with research presented in the USA earlier this year looking into the findings of physician Frank Lin.

Hearing loss, like other sensory losses, for a person who is already living with dementia can cause additional problems in providing that person with care and support. If an individual can't hear what you're saying, or enjoy things like music, then it's likely to severely impact upon their life. Even if the person's hearing loss has been diagnosed and treated (with hearing aids) years before they developed dementia, it's a well-known problem that a person may refuse to wear hearing aids, alongside glasses and dentures, as their dementia advances. My dad, whilst he had perfect hearing, refused to wear his glasses and dentures for the majority of his years with dementia.

If things had worked out differently for my dad and he'd had hearing problems, I'd have probably been the first person trying to persuade him to have a hearing test. So if you know someone whose hearing isn't quite what it was, or you are that person, have a test and find out. The miracle of hearing is too good to only hear half of life.

Until next time...

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Deprivation and dementia

When you consider the experience of living with dementia, I think it’s fair to say that if you are a wealthy person living in a leafy, affluent, secure location your experience of life with dementia will be different to a person from a deprived inner-city area with no money (and possibly debt), living in unsuitable housing conditions in an area rife with crime. The basics of eating well, keeping warm and being able to get out and about when you are living in deprivation are likely to be challenging enough, before you even think about throwing dementia into the mix.

People from socio-economically deprived backgrounds are at increased risk of other health problems, both physical and mental, that may make them more susceptible to developing dementia (for example cardiovascular disease that could lead to vascular dementia), and are more likely to experience difficulties taking care of themselves, putting them at higher risk of infections, falls and problems associated with managing other conditions, for example diabetes.

They are also more likely to be diagnosed later when their dementia symptoms are more advanced, and often at a crisis point, most notably as a result of an emergency admission to hospital. This is due to lots of factors, but key ones are a lack of information about dementia symptoms and difficulty accessing services. People experiencing socio-economic deprivation are often more isolated than people from more affluent backgrounds, and may feel public services are judgmental rather than supportive towards them due to their circumstances.

Further down the line, there are also likely to be issues around accessing social care, for example homecare, which may mean a person struggles on at home alone for longer than they should, ending up reaching a crisis point as a result. To an extent this is true regardless of your circumstances, but it can be a particularly acute problem for people from deprived areas. If the person with dementia has a family carer, the carer is also likely to experience a far more difficult caring role due to lack of identification, information and support. Just accessing online resources, like this blog, won’t be possible if you can’t afford a device and an internet connection at home, or are unable to get to a library to use facilities there.

Out of sight, out of mind is often how socio-economically deprived people are seen by others and treated by society as a whole. Living with dementia is unexplainably tough for anyone, but much more difficult if you can’t see your GP when you need to, can’t access the wealth of information available online, don’t know how to and can’t afford to make your home environment more dementia-friendly (with signage, lighting and other assistive products), and can’t manage other health conditions, eat well and exercise your body, physically and mentally, to help yourself to live as well as possible with dementia.

Symptomatically, there are other important considerations too. Aside from the focus on memory problems so associated with dementia, one of the key issues a person with dementia can experience is a difficulty looking after their home and themselves. If your home is damp, poorly maintained and without adequate facilities to cook and wash, not having the cognitive ability to recognise this and take action can have significant health consequences, and could even result in death. Equally, living in a deprived area could put a person with dementia more at risk of crime if they are seen as a ‘soft target’ – another reason to want to hide away from others, pushing a person into an even more isolated life.

Taking all of these factors into account, the ramifications of socio-economic deprivation on a person with dementia are widespread and extremely serious . Yet these issues are largely ignored. Maybe this is because poverty is something that has always lurked in the shadows of society, or maybe it’s because there are just too many factors that need addressing when you consider how you might improve the life of a person with dementia who is living in deprivation – it’s not just about their health, it's about their housing, access to services, financial situation and even their education.

For commentators, it’s easy to turn your back. A person who is newly diagnosed and living in a damp, cockroach infested high-rise, inner-city flat, without enough hot water for a shower or to clean their clothes, who lives on the breadline (or below it), just isn’t as attractive as interviewing a person with dementia who lives in a comfortable semi in suburbia, with nice home furnishings and family photos on the sideboard.

Yet poverty plus dementia puts the ‘Big D’ into a totally different focus. You are unlikely to be able to live well with dementia, and will probably die younger than a person of the same age with the same type of dementia who has a more affluent life. End of life care in deprived circumstances is also likely to be far removed from what anyone might call a ‘good death’.

Ultimately, you could claim that in these austere times such disadvantage is inevitable. Harsh critics might even argue if it really matters: after all, living with dementia can be unmentionably tough no matter what your circumstances. But when I look back over my dad’s 19 years with dementia, I know we had a better experience than many people precisely because of living in a more affluent and secure part of the UK, with our own personal resources as well as the education and ability to access care and support.

For all of that I am very grateful, but imagining us in deprived circumstances puts a whole new outlook on everything we went through. Austerity shouldn’t be a watchword for neglect. Nor should your living circumstances determine how dementia affects you. Equality for all is a nice catchphrase, but this is one of many areas in dementia care and support where it is sorely lacking.

Until next time...

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Driving, dementia, and doing the right thing

Whenever dementia diagnosis is discussed, one of the major barriers that explains why people delay seeking a diagnosis is the fear of giving up driving.

It is understandable and something I can relate to. I live in a very rural part of England - not having a car and being able to drive would be severely isolating for me, but driving is about more than just freedom and the ability to shop, socialise and pursue hobbies and activities that you enjoy. It is also about a way of life.

For most people, passing their driving test is one of those significant life moments, a signal for a young person that they've gone from being a dependent child to an independent adult. Most people cherish this status, and if you've had your license for the majority of your life, being faced with losing it can be a bitter pill to swallow. Not only that, but it can make you feel very 'child' like again at a time when other changes in your life are leaving you with the sensation of being stripped of your adulthood.

There are a lot of misconceptions about driving and dementia. A diagnosis, in itself, doesn't necessary mean that you instantly stop driving. There are a myriad of medical complexities, everything from the type of dementia a person has and how it is affecting them (everyone is affected differently, even two people who have the same type of dementia may experience different symptoms), to how early the person has been diagnosed (they may have very mild symptoms, or their symptoms may be significantly advanced, or indeed anywhere in-between).

With the suggestion that medical science may be able to predict much earlier presentations of different types of dementia in the future, the chances are that changes in the brain that indicate very early forms of certain types of dementia could mean more people are diagnosed in the years to come at a time when they are still medically fit to drive.

And that is the key to the issue about driving. To my mind, it is a simple question about a person's fitness to drive. There are many different medical conditions that can make you unfit to drive, as well as different medications. The interactions between different conditions and medications are also important to understand. Dementia alone may not stop you driving immediately, particularly if you have been diagnosed quite early. It really depends on your individual circumstances.

As every UK driver knows, they have to inform DVLA (Driver and Vehicle Licensing Agency) of any medical conditions that may affect their ability to drive, and also inform their insurance company. If the person doesn't want to voluntarily surrender their license, there has to be a medical report compiled by their doctor to help the DVLA make their decision about that person's fitness to drive. The outcome will be that either the license will be revoked (you need to be retested in order to get a license again) or renewed for a fixed duration before another review.

At every stage, the compliance of the driver is preferable to make the process as seamless as possible, but what happens when the driver doesn't feel that there is any medical reason to contact the DVLA? They may be symptomatic but not diagnosed with dementia, or indeed may have received a diagnosis but be struggling to accept it.

This is a conundrum that many families face. Sometimes family members recognise the problems the person is having with their driving before the person does themselves. Even if the person is noticing issues like getting lost in otherwise familiar places, being unsure of how to operate a previously familiar car, or having 'near-misses' whilst on the road, they may just dismiss it, or try to hide their problems out of embarrassment or fear.

Families often find themselves in the position of arbiters on their loved one's ability to drive, caught between not wanting to report their loved one's declining driving skills but at the same time being worried for their relative's safety and the safety of others. If the person who is experiencing symptoms that are affecting their driving is also the main driver in a partnership, and either their partner only drives infrequently or not at all, losing their license could have significant implications for their partner/carer/family too.

It is, by any stretch of the imagination, an unpleasant situation to find yourself in. It can cause huge arguments in relationships and the wider family, can result in family members going behind their loved one's back to take steps to revoke their license or take their car away, and can cast a very long shadow that makes a person hostile towards seeking help if they have undiagnosed dementia symptoms.

Of course everyone is different - some people pragmatically face up to difficulties with driving and voluntarily give up their license before they might be formally required to do so. But even talking to people in memory clinics who've been diagnosed with a type of dementia, the topic of driving still brings up strong opinions.

In my dad's case, during the 10 years he lived with dementia prior to his diagnosis, he became an unsafe driver. He didn't recognise his shortcomings, however, and wanted to continue to drive. Everything came to a head when he demonstrated his intention to continue to drive by sending his car to the garage for some very expensive repairs that were needed to make the car roadworthy.

Not only could he not afford the repairs (but didn't realise he couldn't afford the repairs), had the car come home ready to drive he would have been a danger to himself and to other people on the roads. In the face of very dogmatic conversation (dad lost his reasoning skills very early on in his dementia), I had no choice but to have the car sent for scrap. Any other outcome was either going to result, at best, in debt, and at worst in an accident.

I didn't like having to take the action I did, nor did it make me particularly popular for a while, but I felt a strong responsibility not just to my dad but also to other road users. You could argue it was paternalistic of me, and I wouldn't disagree, but to this day I would defend the decision I took. My only regret is that dad didn't make the decision that had to be taken himself. It would have been infinitely preferable for all concerned if he had.

Sadly I will never know if the symptoms of dad's dementia prevented him making that decision, or if he would have always resisted any notion of giving up driving for any medical reason, not just vascular dementia. At the time it was another of those very confusing, isolating moments that you have as a family with a loved one who has undiagnosed dementia where you grapple with the dicey question of, 'What is the right thing to do?'

It's not a question I would wish on other families, and but for me, finding the answer was one that ultimately came down to the legalities of fitness to drive. It is illegal to drive a car when you are not medically fit to do so, and driving, whilst hugely important in the lives of so many people and something none of us necessarily 'want' to give up, isn't worth pursing if you cannot do it safely.

Until next time...

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Why awareness of dementia isn’t enough

Dementia Awareness Week (#DAW2016) is arguably the most dementia-focused week of the year in the UK. It’s a time for launching initiatives, publications, products and services, and for charities, organisations and businesses to raise the profile of their work. Indeed, Dementia Awareness Week was the trigger for me to begin this blog four years ago.

Amongst all of this coverage, the headline message remains fairly consistent: If you think you may have dementia, or are concerned that someone you know might have dementia, please see a GP. In essence that’s a very simple action, but it is bound up in so many other issues, emotions and concerns.

Seeking a diagnosis in 2016

Whilst in the UK we’ve become rather adept at talking about the diagnosis of dementia, or the perceived lack of it (depending on what you believe about prevalence statistics), what we are still very poor in delivering is the holistic package of care and support that should wrap around a person with dementia, and their family, when the time is right for them to seek that assistance.

We wonder why people don’t want to seek a diagnosis like having a diagnosis has become some sort of reward that people should be grateful for, but the reality is very different. Whilst for some people having a diagnosis helps to answer questions about their health that are causing them concern, for those who go undiagnosed, the question is potentially as simple as this: Why would you seek a diagnosis if you don’t feel confident in receiving the aftercare and support you need and deserve?

To find the answer as to why people don’t come forward as soon as they experience symptoms you have to look at three intertwined issues: Awareness, Stigma and Support.

AWARENESS

As a country the UK has become one of the leading nations in raising awareness of dementia. Through campaigns, most notably Dementia Friends, myths have been busted – “Dementia is not a natural part of the ageing process” – and it’s safe to say that more people know about the symptoms of dementia than ever before.

Sadly, with awareness also comes an appetite for headlines such as those proclaiming dementia to be the most feared health condition in the UK. For the record, I don’t doubt that it is the most feared health condition, but the problem with fear is it will inevitably put people off from seeking help if they notice dementia symptoms in themselves or a loved one. The more fear is ramped up, the less effective those more measured awareness-raising messages become.

STIGMA

Again, I think a lot has been done to counter stigma, most notably by people who are living with dementia speaking out and joining leading campaigns – not to mention beginning their own campaigns (examples include Dementia Engagement and Empowerment Project and Dementia Alliance International). Their voice is absolutely vital in helping to show that it is possible to live well with dementia, and that a diagnosis doesn’t mean your life is over.

The problem remains, however, that amongst older generations people still associate dementia with outdated ideas about ‘madness’ and asylums, and that is constantly reinforced by stories of bad dementia care homes and home care, poor treatment of people who are living with dementia in hospitals, ‘bed-blocking’, elder abuse, family carers who are unsupported, and a disregard for the end-of-life wishes of people with dementia. Equally, if you are a younger person with symptoms of dementia, you may feel that dementia is only something 'older people get' (a widely-held belief, but of course untrue).

SUPPORT

Whilst there are pockets of great practice in supporting people with dementia in the UK, this is confined to a patchy postcode lottery that leaves people with dementia and their families at the whims of local commissioners of health and social care services, and whatever provision is delivered by charities and community interest companies in their locality.

Yes, there is a desire from government for everyone to receive the care and support that is right for their individual circumstances (See the implementation plan for the Prime Minister’s Challenge on Dementia 2020), but the reality is very different. Changing this reality is, for me, the key to making the UK the best country in the world to live with dementia.

Offering a value-added dementia diagnosis

A value-added diagnosis offers cutting edge care and support that is about real choice and control (not just the misguided perception that you have choice and control), occupation and involvement (not tokenistic gestures), refining daily living skills (enabling rather than disabling), making transportation accessible (driving, using public transport and having the confidence to go on holiday and do the things that the person wants to do) and modifying the environment of the person’s home and community (to provide both symptomatic relief for problems like orientation, and also help the person to remain comfortable at home and when out and about).

Finally, every one of these approaches must be personalised and holistic, taking into account individual wishes, wider family circumstances, and any other health conditions the person has now, or may develop in the future.

It’s rehabilitation more than medication (in the absence of more reliable drugs to treat the different forms of dementia). It’s family orientated and far more of a social model than a medical one (doctors  have their role to play, but dementia specialist nurses and OT’s are generally more needed, and the expertise of social care professionals is paramount). And it is never, ever, one size fits all.

Ultimately to deliver this is about prioritisation and funding. But it’s also about belief in dementia care and support that is designed like this. It’s about ditching the old model of dependency and giving up (and I urge you to read Kate Swaffer’s experiences of this) and offering a value-added diagnosis that motivates people to come forward when they have symptoms of dementia.

More than just awareness

It is so much more than just awareness, but in many ways that is what makes it so important. Please use #DAW2016 to spread these messages, but don’t stop when the hashtag is old news. Dementia needs this platform every week – I strongly believe that positive change will continue to evolve, but all of us with a personal and/or professional passion for dementia has to own that change for it to happen.

"Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has." Margaret Mead, American Anthrapologist

Until next time...

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Supporting a person with anxiety

Anxiety is commonly mentioned as one of a raft of symptoms linked to the development and progression of dementia. It is thought that dementia can both exacerbate anxiety in those who have a history of being anxious, and also bring about anxiety in people who were previously never known to be anxious. In short, anxiety and dementia are often inextricably linked.

What interests me when thinking about anxiety and dementia is how the actions of those individuals around a person with dementia may, or may not, contribute to the promotion of anxiety in the person who is living with dementia. In my opinion, a common mistake when thinking about the manifestation of many symptoms of dementia is that they all exclusively originate as a result of the damage that the person’s brain is going through, when other factors could also contribute or at very least enhance many symptoms of dementia.

As I’m not a scientist, I’m not about to align this theory with findings from some extensive research study I’ve undertaken. My viewpoints are based on personal experiences with my dad and other people who are living with dementia, observations made in my personal and professional life, and good old fashioned common sense, which I often feel is severely lacking in much of what is thought and taught in relation to dementia.

The difficulty with anxiety is that it has a tendency to set in motion a snowball effect. Very early on, when family members start to notice changes in their loved one, they may well become anxious. The mind has a habit of fast-forwarding to worst case scenarios at the onset of any type of health-related concern that could have long term, irreparable consequences. Anxiety can be difficult to hide, even at this juncture, and could therefore affect the person who may, or may not, be developing dementia.

Meanwhile, if the person who is potentially developing dementia picks up on either their family’s anxiety, or begins to feel their own anxiety at disconcerting events - like forgetting names, the location of places or objects, dates and times, or struggling to maintain their daily routine - then anxiety is already doing its unpleasant work and putting everyone on edge.

Some people cope with anxiety by trying to prove that they can do what is making them anxious, which for a person with dementia may only make them more anxious and prone to what they might feel is ‘making a mistake’. Other people cope by hiding away from what is making them anxious, which can result in not participating in things that they normally would participate in which is then seen as withdrawal, another symptom of dementia. 

In almost any scenario related to anxiety and dementia, there is also the possibility for elements of depression to set in, which again are very counterproductive. Bringing all this together into the diagnostic process for dementia can result in a fairly gloomy prediction of what post-diagnostic life is likely to entail. This is perhaps best summed up by Kate Swaffer, a lady living with dementia, who has trademarked the term ‘Prescribed Disengagement’. Anyone receiving that type of ‘treatment’ is bound to feel lots of negative emotions, including anxiety.

Anxiety isn’t just linked to our mental processes either. It can manifest itself in many unpleasant physical ways, like loss of appetite, nausea, stomach pains, diarrhoea or vomiting, and through outbreaks of spots, itchy or sweaty skin, headaches, shortness of breath and exacerbation of a wide range of pre-existing conditions. Quite a few of these physical signs can also go towards contributing to a fairly negative assessment of a person’s prognosis in relation to dementia.

Even if anxiety doesn’t bite as a person is developing dementia, it may strike later on, in fact anxiety is often seen as a contributing factor to ‘challenging behaviour’, or as I prefer to describe it, unmet needs. My dad had problems with anxiety during periods in hospital, an environment that heightened his confusion and made him naturally anxious. Equally, in one my dad’s care homes, I distinctly remember a lady who had days of pacing the corridors looking exceptionally anxious and believing she had killed somebody.

The problem with anxiety, whether you have dementia or not, is that it is rarely rational. Add in the unpredictability of dementia and it makes anxiety much more difficult to cope with. If people around the person with dementia are also anxious, that only makes matters worse. So for example, individuals around a person with dementia might: 

·        Be unsure of how to speak to the person or react to something that they are saying – see my blog post 'Talking the talk' for some help and advice.

·        Be fearful of what a person with dementia might do – this goes back to the way in which ‘challenging behaviour’ is viewed. See my blog post 'Fear factor' for an exploration of fear and dementia.

·        Feel out of their depth or overwhelmed at the prospect of caring for or supporting a person with dementia – this is where training becomes so important

If you’re experiencing any of these feelings or situations, then any anxiety you’re going through is likely to be pretty transparent and therefore obvious to the person with dementia. It’s completely wrong to assume that just because a person’s dementia may have advanced to a point where there are significant problems with communication, or communication is non-existent, that the person with dementia doesn’t pick up on the words, actions, emotions and feelings of those around them – my belief is that the ability to sense how others are feeling remains with a person until the end of their life.

 

Helping a person with dementia to feel less anxious is about calm reassurance, and putting your feelings to one side in order to focus on the person with dementia, their needs, and how you can best support them. This will never be achieved if you’re an anxious wreck. If you are a person who feels out of their depth through lack of knowledge, ensure you plug those gaps through whatever means are available to you. 

 

If your anxiety is rooted more in fearfulness of what the person with dementia might do, coping with this is about trying to understand the world from the perspective of the person with dementia. What is happening around them, either with other people or the environment, that could affect how they react, and what could you do to make them feel more reassured?

 

If you’re a family member who is unwittingly projecting your anxiety about the future onto your loved one, take a step back and look at whether this is helpful for either of you. Your own health will undoubtedly suffer as a result of this type of anxiety, and I’ve already covered how negatively it may affect your loved one.

 

Without wishing to in any way hide from the realities of how dementia progresses, I think it’s important to remember to live in the moment, focus on what you have in that moment and any changes, however small or apparently insignificant, that you could make to enhance that moment. This is positive action that should help to relieve both your own anxiety and any anxiety the person with dementia has either picked up from you or is feeling independently of you.

 

Sadly there is no magic solution to anxiety in dementia care, but empathy, compassion, positivity, and being both person-centred in your approach and living in the moment are ways in which temporary and sometimes permanent relief can be found for all concerned.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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The ‘stages’ of dementia

I had a very refreshing conversation recently with someone running a care company about the 'stages' of dementia. In this person's view, the way in which the medical model defines dementia by different stages isn't helpful for a more human understanding of what dementia really is and how it progresses. Unsurprisingly, I agreed.

The stages of dementia are generally defined as follows:

Mild/Early Stage: Characterised by the onset of a range of dementia symptoms – these could be anything from memory loss to confusion. I describe some common dementia symptoms in my blog post ‘What is dementia’. This is generally considered to be the stage at which dementia should be diagnosed.

Moderate/Mid Stage: Symptoms experienced in the mild/early stage are increasingly severe, and changes in behaviour can become more marked and difficult to cope with, both for the person with dementia and those caring for them. If a person is diagnosed at this stage, it’s considered by many medics to be a late diagnosis.

Severe/End Stage: This stage is characterised by further deterioration of previous symptoms, but is particularly marked by physical frailty – for example the person may become immobile, incontinent, have swallowing problems, experience weight loss, be at an increased risk of infections, and have severely limited or non-existent verbal communication.

I've actually never been a fan of compartmentalising, which is how I see the concept of stages in dementia. For me it's fraught with problems for the following reasons:

1. No two people experience dementia in the same way, even if they are diagnosed with the same type of dementia (and there are over 100 different types of dementia).
2. Dementia is notorious for giving a person good days and bad days, so in the staging model a person could appear to be mid stage one day and more early stage the next day, making staging very unreliable as a concept. This is even more applicable if the person has other conditions, alongside their dementia, which can fluctuate.
3. Severe/end stage dementia is often confused with end-of-life, which would be encapsulated within it, but in reality a person could fit into the severe/end stage category for far longer than a few days, weeks or months. Technically my dad would have been severe/end stage for at least 6 years, but in the earlier part of those 6 years his dementia manifested itself in a way that meant he bordered both moderate/mid stage and severe/end stage. This only serves to further highlight the shortcomings of viewing dementia through a rigid staging model.

What is immediately obvious to me is that given the complexity of dementia, referring to stages has the ability to drastically mislead care professionals and families, and could, at worst, affect decisions about care and support that may adversely impact upon the person with dementia. The concept of stages also encourages comparisons to be made about people who technically fit into the same stage, but are in fact completely different in how they are experiencing their dementia and reacting to it, which can only make the minefield of care and support more baffling.

Looking at dementia through the prism of stages destroys concepts like individuality and being person-centred, because it assumes all people who are living with dementia are one homogenous group, which they most definitely are not. I also feel staging has the ability to affect whether a person receives positive care and support throughout their life with dementia – for example, would an individual considered to be in severe/end stage dementia be offered as many positive care and support options as a person in 'moderate/mid stage' dementia? They certainly should be, but I suspect that the association of end-of-life with severe/end stage dementia might restrict more positive care and support because the person is seen as being less in need now that they are coming to the end of their life (which as I've already pointed out in my dad's case, can be far from true).

Staging also has the ability to dampen hope, which concerns me greatly. When I talk about hope, I’m not talking about notions of a cure for dementia tomorrow, or unrealistic expectations for a person's recovery from having significant symptoms of dementia to being back to their pre-diagnosis self. Hope, for me, is about giving families and professionals the drive and determination to make the life of the person with dementia happy, fulfilled and reflective of everything that person enjoys, with a massive emphasis on living in the moment and enjoying the good days.

Mentally that is difficult to align with the stages of dementia, because again, the concepts associated with progressing from one stage to another are inevitably likely to cause those around the person to lose a little hope, perhaps feel deflated, blame themselves for not doing more to keep that person at the previous stage for longer, and enhance the feelings of loss that are very common for families and family carers.

Given the negative connotations regarding the stages of dementia, it’s all the more unsettling that many families I’ve known, both personally and professionally, have been encouraged to become very focused on the stages of dementia, when in reality the juncture that their loved one has reached with their dementia at any given time isn’t what is important. Encouraging families to focus on what is possible, what their loved one can do, and how they can provide optimum care and support is far more helpful.

Perhaps even more worryingly, I’ve known medical staff who use the staging model to justify recommendations or decisions about care that families can often feel compelled to agree with because they’re being told that their loved one has reached a certain stage of their dementia. When my dad was immobile, incontinent and living with dysphagia (swallowing problems – more information here), we met doctors who questioned his quality of life and predicted his imminent demise due to his end stage dementia. Without a family to advocate for what he could do and did enjoy, he would have been compartmentalised in a way that effectively wrote him off as a human being.

I’m not in any way seeking to deny that dementia is characterised by deterioration and is terminal, but I also strongly feel that an antidote to the concept of staging is long overdue. For me, this would simply be:

See each person with dementia as an individual in their own right, and if you must assess them, assess them in the context of the moment in time when you are assessing them, keeping a completely open mind as to what the rest of that day, week, month or year might bring for that person. More than anything the person with dementia needs appropriate care and support, not a misleading label.

Or to put it another way, in the words of Helga Rohra, a lady living with dementia:

“The faces of dementia, rather than the stages of dementia.”

Until next time...

You can follow me on Twitter: @bethyb1886

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