Coronavirus and being isolated from a loved one

Last month I wrote about the coronavirus pandemic and answered two questions families supporting a loved one are grappling with: How do we hand-wash more and how do we self-isolate?

For families who aren’t in the same household, however, they are living through many weeks, which may potentially become months, without physically seeing their loved ones. If a family member is in a care home that isolation period may be the longest any of us experience, since care homes are - as we have seen - incredibly vulnerable to coronavirus outbreaks. 

Indeed, the impact of coronavirus on care homes and the devastation being wreaked in terms of illness and death amongst residents (as well as the huge risks many staff are taking if they don’t have adequate personal protective equipment) is on a scale that even on the current estimations is truly horrific.

Fears for a loved one in a care home

For numerous families, reading these stories will only magnify their own immense fears for the health of their loved ones in care homes, and many will feel utterly powerless and dreading every ring on their phone. Although we never lived through anything like this with my dad, there is no doubt that I know the fear of illness well, since dad was hospitalised numerous times in the last nine years of his life. 

For us, the dreaded phone calls would often come in the middle of the night and would usually be because dad had a worsening chest or bladder infection. Time after time dad pulled through until the last, catastrophic bout of pneumonia that eventually overwhelmed him.

With care homes currently in strict lockdowns, the ban on visiting has both emotional and practical ramifications. The longest I ever went without seeing my dad during his nine years in care homes would have been around three weeks when one of his care homes had a norovirus outbreak, and it was characterised by constant worry.

The pain of separation 

Fast forward to 2020, and most families are faced with being apart for far longer. The pain this separation will be causing many people was something I thought about whilst reflecting on my dad’s 93rd birthday earlier this month. We were lucky to be able to spend every birthday with my dad, but so many people will be unable to do that during this pandemic. 

The stark feeling facing many families will be the anxiety that it could be their loved one’s last birthday and they won’t have those memories of being together. Whilst this may sound trivial to some in the face of the threat of coronavirus, the loss of the celebration of these milestones together only enforces the painful separation. And of course if a loved one is approaching the end of their life and you aren’t able to see them, the effect on grieving families is immense. We can buy many things and do a huge amount as 21st century citizens, but we cannot buy time, nor replace the physical touch of hand in hand or cheek on cheek.

Ways to keep in touch with your loved one when you are apart

Much has been said about the power of the digital world to bridge the yawning chasm many families are feeling, and it is undoubtedly the best option for at least seeing each other’s faces and hearing each other’s voices through mediums like Skype, FaceTime and Zoom.

More traditional options like sending letters, cards and photographs might seem less appealing, but for the older generation and particularly if someone’s dementia is advancing, these might be more understandable and recognisable than digital options. 

Bear in mind too that as someone’s dementia progresses, a phone call may be incredibly difficult for them to contribute to as it contains none of the visual clues, like mouth movements and body language, that can help the person to understand what you are staying. And of course they cannot see you, so simply saying who you are may not be enough of a reminder.

Practical things you can do for your loved one

If you are wanting to do something more for your loved one than just keeping in touch, these would be my top three suggestions:

• Make a life story resource. It may be that one of your lockdown projects is to sort through old photographs or memorabilia at home, or do some family tree research. Commit to creating a life story resource from items you may have at home, or things you can find online about your loved one’s life. You could turn these items (using copies of any precious originals) into a life story book, box, collage for a wall or other resource. You could be more creative too, as this care worker was when she had a cushion created for a gentleman who was missing his late wife. And don’t wait until you see your loved one to give them your life story gifts - research an affordable door-to-door courier (examples here) and make it a lovely surprise for your relative to open during this lockdown.

• Make a playlist. If you know the music your loved one enjoys, begin a playlist for them. If you are unsure of some details, liaise with staff and make it a three-way remote project between yourself, your loved one and the care worker(s) supporting them.

• Send a food parcel, or package up favourite cosmetics, clothing, books, magazines, cd’s, dvd’s, hobby materials or other things your loved one will enjoy receiving. There are lots of things you can order online and have them delivered straight to your loved one, or get some extra items with your grocery shop, package them up and send them via a door-to-door courier. Again, this will make a lovely surprise.

All of these ideas, of course, won’t ever replace that personal contact, but in the face of the current restrictions I hope families will find comfort in being able to do something practical to feel more useful and to ease those long days until they meet again.

Next month I will continue to look at the issues raised by the coronavirus pandemic. Until then:

• Keep safe
• Stay at home
• Keep your distance from others
• Look after yourselves
• And stay well.

You can follow me on Twitter: @bethyb1886
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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...

You can follow me on Twitter: @bethyb1886

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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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Celebrating longevity

Hearing the tributes this week to Reg Dean, the gentleman who had been the UK’s oldest man until he passed away at the tender age of 110 years and 63 days, reminded me of the amazing stories behind the faces of every older person in villages, towns and cities across the UK and further afield.

Reg had been a church minister, serving as an army chaplain in Burma during World War II, was married 3 times, worked as a teacher, wrote short stories, founded the Dalesmen Male Voice Choir, took up painting at the age of 80 and was a vegetarian for more than 30 years. He lived through two World Wars and 24 British Prime Ministers, attributing his longevity to a mysterious medicine given to him by an Indian doctor and being, as he put it, “A member of the August fellowship known as 'lazy bones'."

The gentleman who succeeds him as the UK’s new oldest man is Ralph Tarrant, a great great granddad of over 109 years with an equally engrossing story and some great anecdotes. He still enjoys walking, and although he now needs a stick he is proud to claim that he can still "go like the clappers.” He lives independently, does his own shopping, enjoys cooking, and says he feels “really smashing” for his age.

Ralph’s advice on longevity is simple.  He says there is "no need to live too carefully” and having enjoyed 79 years of marriage before his wife died aged 102, he claims that the key to a long and happy union is to “give each other hell every chance you get.”

Many people may look at Ralph, and Reg before him, and just see wrinkled faces, bodies not moving quite as quickly as they once did, and a person they perceive has no relevance to the ‘modern’ age, but my view is completely different. Just by researching their stories these men have proven to be enlightening, entertaining, and an example to us all of how to grow old gracefully.

Society is generally fearful of old age, perceiving it to be about increasing aches and pains, immobility, losing functioning and independence and ultimately ending up just waiting to die. These men prove that it doesn’t have to be like that, and whilst their longevity may be more aspirational than achievable for many people whose lifestyles or genetic makeup mean that they will never live for as long, or as healthily, as Reg and Ralph have been able to, I hope that their example helps to change the face of ageing into something more positive and desirable.

From an educational point of view, both men are also from a generation who worked for everything, saved before they spent, and endured great hardships during previous wars and recessions. Crucially, their generation also knew the value of things. They appreciated what they had and looked after what they were able to gain through their endeavours. They were never obsessed by celebrity, a ‘must-have’ culture or the temptations of excessive credit.

Thankfully Reg and Ralph have not only lived long and full lives, but have also been able to share their stories and maintain control over their day-to-day life, unlike the many people, often much younger, for whom health problems mean a very different experience as they age. Without the ability to speak up for themselves, defend their rights, fight for what they need and maintain their place within society, many older people are often ignored, mistreated or consigned to the scrapheap.

But consider this. Imagine if every wrinkle on an older person’s body represented a story to tell, an anecdote to recall, or a snipet of knowledge or advice that could change the course of a younger person’s life for the better? In our commercialised society, a ‘product’ capable of providing information of that magnitude AND entertaining the recipient would have a very high value indeed.

Yet so many older people don’t feel valued, and for everyone who might celebrate their existence, there will be others who feel that they are an unnecessary burden. I would argue, however, that we need to harness the wisdom, experience, knowledge and human spirit that lives within people like Ralph, and Reg before him.

By doing that not only do we celebrate their longevity and learn from their lives, we also help to change the image of their generation amongst the younger population. Men like Ralph provide the voices for their peers who through failing health cannot speak up as they once did, and by flying the flag for our older generations, these inspirational characters might just help to change the way ALL older people are viewed and treated.

Until next time...

You can follow me on Twitter: @bethyb1886

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My dementia wish list

Welcome to 2013, the beginning of another new year and no doubt another set of targets for the tick box culture in health and social care. 2013 promises to be an important time for dementia, with the need to build on the awareness generated in 2012 and put all of the promising words and rhetoric into action, to bring real and lasting change to the lives of people with dementia now and in the future.

Currently there are over 800,000 people with dementia in the UK, and over 35 million people worldwide. For me the greatest voice in dementia awareness, education, policy and implementation in 2013 must be theirs, their families and carers past and present – people with first-hand experience of what dementia is really like and what is really needed to improve the lives of those who are living with it.

As someone whose dad had dementia for 19 years and who sadly lost him to it in 2012, here is my dementia wish list for 2013:

(In no particular order)

1)      Dignity and respect for all
It costs nothing and must be the foundation of all aspects of dementia care.

2)      Understanding
People with dementia are still people, with thoughts, feelings, emotions and sensitivities. Understanding what living in their world involves is vital to improving their quality of life.

3)      Personalisation
Treat each person as an individual and tailor their care to them. Appreciate their past, support their present and help to make their future the best it can be.

4)      Compassion
Kindness costs nothing and yet changes so much, not just for the person who is being shown compassion but for the person giving it. What is good for people with dementia is good for all of us.

5)      Opportunity and diversity
We all want a sense of achievement and people with dementia are no different. They still want to have the chance to do the things that they love, or try new hobbies and activities, and they should be encouraged and facilitated to do this.

6)      Belief and positivity
There is so much we can do to improve the lives of people with dementia so that this disease is no longer seen as a black hole of nothing, stigma is reduced, and people are less fearful about admitting that they have dementia symptoms and need some extra help.

7)      Fairness and independence
Our modern world of self-service and technology can be baffling for people with dementia. The systems of daily living must be flexible to accommodate people with dementia so that they can remain as independent as possible.

8)      Involvement
Don’t ignore people with dementia, talk about them rather than with them or assume that they have nothing to contribute. Remember the saying ‘Nothing about us without us’.

9)      Embracing experience
Society can be very dismissive of older people, especially those with dementia, and the contribution that they can make to their communities. As a result many older people are made to feel that they are an unwanted burden. Yet they are a great asset to their communities and can teach us so much – it is time to listen and learn.

10)   Action, not just words
So much was said about dementia in 2012. Indeed the disease has never had such a high profile. This must not just be a short-lived ‘trendy’ topic to dip in and out of however. The problems people with dementia have within the health and social care systems and wider society are reflective of the issues troubling many others. Sustainable long-term solutions to issues ranging from social care funding to care in hospitals, standards in care homes to supporting people within their own homes, diagnosis to end-of-life care are all desperately needed and long overdue.

Until next time...

You can follow me on Twitter: @bethyb1886

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NCD (Otherwise known as dementia)

It was only ever going to be a matter of time before the increased profile of dementia brought about a renaming of it. Thanks to the American Psychiatric Association (Representing 36,000 physician leaders in mental health) their newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will, from May 2013, term dementia as ‘major or minor neurocognitive disorder’.

Why? It is believed that the term dementia is stigmatising to people living with it and is not well accepted. The idea of the new terminology is to focus on the decline from a previous level of functioning as opposed to a deficit. It is also designed to better reflect the variations in the different dementias, rather than emphasising the need for memory impairment to be present for a diagnosis to be made (in some forms of dementia, memory problems are not the first symptom).

It is also worth pointing out that dementia has been successfully renamed in Japan (The old word for dementia ‘chihou’ meant stupid. The New word ‘ninchisho’ introduced in 2004 means cognitive impairment). So all well and good then. Or is it? If you are scratching your head in amazement, believe me you are not the only one. Science meets semantics meets political correctness meets, in my case, frustration. I do not believe that this is a helpful step forward. It is playing with words and creating unnecessary debate whilst the real issues, that are frankly much more difficult to tackle than name changes, compete for attention.

It is true that many people avoid seeking a diagnosis through fear and stigma, but changing a name will not remove that. The root of fearfulness comes from the concerns people have that there will be no support for them as they navigate their way through their journey with this disease, a journey that most never expected to make and are not prepared for. Supporting someone in their present situation, and helping them to plan for the future, is where every effort and resource should be directed if we are really serious about improving the lives of people with dementia.

There is an argument that the Latin origins of the word dementia are in themselves stigmatising. I suspect, however, that most people do not go home and look up dementia in the dictionary when they have a diagnosis of it. Certainly when my father was diagnosed we were united with him in not dwelling on the label attached to his symptoms. We were far more concerned about what the future would hold - how could we support him, where would we find support ourselves, and how would we adjust to the huge change in all our lives?

As for dad, he was only interested in walking, eating, talking, singing and getting on with things – we never sat and discussed the definition of dementia with him and he was totally unmoved by references to it. We had absolutely no problem in telling friends and family that he had dementia (by the time dad was diagnosed he did not have the ability to tell people himself). On breaking that news, my view was that if anyone had an issue with it that was their affair; I had no time or energy to waste on those with small-minded attitudes.

Dementia in itself may not be a perfect word for our present day understanding of this disease, but there comes a point when you have to accept that there may never be a perfect way to describe symptoms that most people will find distressing no matter what you call them. Major or minor neurocognitive disorder will no doubt also find objections. Adding ‘disorder’ to the proposed new name for dementia has its own negative connotations, the introduction of the words ‘major’ and ‘minor’ could confuse people about the severity of their neurocognitive disorder and long-term prognosis, whilst the sheer mouthful of the full name will bemuse many. At best this will lead to the abbreviation NCD, and in many cases, it will result in the explanation, “Otherwise known as dementia.”

If dementia could be associated with care, compassion, kindness, understanding, fairness and opportunity then I think the word would be seen in a similar light to the way in which cancer is now. So much good work is being done to raise the profile of dementia, and I am a firm believer that in all matters of awareness, care and training we should keep language simple (as I wrote about here). Working to explain what dementia means from a practical point of view, and how people can genuinely live well with it is actually far more relevant than the umbrella term for a group of symptoms.

Personally I have no vested interest in decisions over terminology. Whatever the disease we currently know as dementia is called in the future will not affect what I do – my interest is broadly in our older population, particularly people with dementia and their families, and how we can make their lives better. Having walked their path, I know what was important to me over the 19 years of my father’s dementia, and what his symptoms were called did not enter into that.

All of this makes me wonder who would be the winners from ‘re-branding’ dementia? Pharmaceutical companies? Advertising and marketing executives? Businesses that make and print promotional materials? People who are paid to sit in rooms and dream up new ideas? In fact pretty much everyone bar the people who really matter - people with dementia and their families. I suspect that they will just roll their eyes, bemoan the spending of precious budgets on calling dementia something else, and continue to struggle on in their daily lives. Sadly for many, struggle is the optimum word in that sentence, and alleviating that is where all our focus, energy and money should be directed.

Until next time...

You can follow me on Twitter: @bethyb1886

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Fear factor

Reading how frightened people feel about spending time with someone who has dementia, even when they are related to them, seems so incredibly sad to me. Perhaps it is because I can honestly never remember a time when I was fearful of seeing my dad, or because despite all the hours I have spent in the company of people with dementia I have never once felt threatened or out of my comfort zone. Then again, maybe you think that I have just been lucky.

It was certainly not the case that my dad had an easy ride with his dementia during the 19 years he lived with it, and as a result neither did we. For the majority of that time he was a strong, imposing man who could move independently, speak very loudly and be abrupt, rude or even offensive.  When he entered a more passive stage of being completely dependant on others and lost his conversational ability, we would spend many hours together that were characterised by me observing him and trying to work out what he was thinking, wanting or needing.

As a family we felt the sadness, anger, desperation and complete bewilderment that all relatives feel at having a loved one with dementia. However, what I never saw when I looked at my father was stigma; indeed I never even consciously thought about his dementia, dad was just dad. Very different to the man he had been prior to developing dementia of course, but still dad.

If you see stigma you feel fear, the two are intrinsically linked. Many public opinion surveys now tell us that dementia is the most feared disease in the world. Cancer and HIV were once where dementia is now, but with improved treatments for both people feel that there is hope, not just fear. Where dementia is concerned, they can only see fear:  the terror of developing it themselves and losing the life that they know, or the pain of seeing someone they love living with dementia.

Fear breeds fear – for so long people with dementia have been locked away, segregated from society, breeding fear of the disease though a lack of understanding or exposure to what dementia really is. Even though the disease is now coming out of the shadows, it is impossible to predict how long it will take for people with dementia to be accepted within society rather than ostracised and shunned as many still are.

When someone’s own relatives feel too fearful of their loved one’s dementia to spend time with them you know that stigma is alive and well and living in our communities. It is also the case that many people like their own ordered lives, and dementia is the ultimate in being disorderly. It is unpredictable, and relatives can wonder how to approach their loved one, talk to them or engage with them. My best advice to cope with this is also the simplest advice – see the person.

However changed someone appears to be, they are still the person you love underneath. You may need to be very imaginative to discover that, but I have never met anyone with dementia whose true self cannot be reached with thoughtful, loving perseverance from a dedicated family. As a relative you may endure a lot of heartache to find that peace, but giving up could ultimately leave you living the rest of your life with regret.

Having lost my dad to dementia, I can honestly say that I am so very, very grateful for the time we had together. Yes it was time clouded by the disease – it robbed him of so much – but dementia never got in the way of us spending time together. I could have let it of course, there are often times when it is easier to walk away than take a path that you know will hurt you, but it is important to see beyond your immediate feelings and emotions.

Dementia only gives you so long with your relative before time is up. Allowing your fear of the disease to keep you from making the most of that time is something that one day you will not be able to remedy, whereas fear can always be conquered. Being self-conscious about how you should act around someone with dementia, or fearful of what they might say or do is so very unimportant when you sit and think about the bigger picture of life and all that it brings.

If I ever had a fear with regard to my dad, it was a fear for the day when he would no longer be there. It was never a fear of him not recognising me, not answering me, not responding to me hugging him or bringing him his favourite food, it was a fear that one day I would no longer be able to just sit and have a cup of tea with him. Believe me, when that day comes, you wish more than anything to go back to any amount of ‘awkwardness’ just to live in the moment, breathe the same air and know that you love that person so much you would do anything for them. My dad has passed away, but for everyone who still has their loved one with them, take in those moments, pour as much life into them as you possibly can and never let fear win.

Until next time...

You can follow me on Twitter: @bethyb1886

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Putting your head above the parapet

Anyone who knows me will confirm that I am not afraid to speak up, firmly but fairly, if something is wrong. With TV programmes and magazines extolling the rights of the consumer, complaining about goods and services is something most people will do without hesitation. When it comes to complaints about issues of health and social care, however, a chilling fear of the malevolent intentions others may have as a result of what you are going to do or say can put you in that most impossible of positions – do you speak up, and if you do, will there be unexpected consequences?

Over the course of my father’s 19 years with vascular dementia there were numerous occasions when things went wrong, particularly in care homes. Small issues like missing clothes, giving the wrong food or drinks, or not showering him enough were easy to tackle with staff who, whilst often overworked, were generally conscientious and wanted to put things right, but much bigger problems proved far more difficult to deal with.

As a loving, caring family, you want the best for your relative, wherever they are and whoever is looking after them. People with advanced dementia cannot speak up for themselves, and whether your battles are with care home management, hospitals, care agencies, PCT’s or social services, it can easily become an all-consuming, personal quest for the care, justice and fairness your loved one deserves.

Generally most official complaints procedures would like you to start and end your complaint with the lowest level manager that they can delegate your issue to. Often, however, this person will not have the authority to overturn decisions or will try and wrap your problems in red tape, with protocols, procedures and lengthy time scales. Going higher up the management structure will often result in more bureaucracy, if indeed you can ever actually speak to and develop an understanding with someone who can make the changes you want.

Complains in health and social care are generally very personal, yet you are often left dealing with people who have no personal feeling for the subject in question and therefore no understanding of where you are coming from. Frustrated and exhausted, do you resort to more public methods to fix the broken part of the system that you are in?

Many people have asked me why I never started D4Dementia sooner – 19 years, they say, is a long time for my father to have had dementia, and sharing those experiences along the way could have helped and supported many others on their own dementia journey at that time. Whilst this is very true, and our story has many positive aspects, starting the work I am doing now when my father was still alive would have also meant publically exposing when things went wrong, a concept that filled me with a genuine fear that my father’s care would suffer.

The care system can be very political, secretive and unnerving, and when dad’s care deteriorated  to a point where he was suffering (as I wrote about here), whilst I was tempted to make his case an example to the UK, at the same time I felt the price he may pay would be unbearable. As it was, involving senior management from the care provider, and eventually CQC and other agencies in the months prior to my father’s death, left us ostracised, isolated and the subject of lies and rumours from the home management. Furthermore, given the circumstances in which the pneumonia that killed my father manifested itself, I will now always wonder if he was targeted as a resident with a family that they simply wanted to get rid of.

There is a pervasive fear amongst families of older people who cannot speak up, or indeed amongst the elderly who could speak up themselves but live in fear of doing so, that the lives of the older generation are considered to be worth less than their younger counterparts. Many elderly people often feel very vulnerable, alone and frightened, languishing in hospital beds or in care homes with problems that they would like to voice but fears that their care will suffer if they ‘get someone into trouble’.

Anonymous whistle blowing is great in theory, but often the channels for doing this are unknown or not trusted, and as a result underused. Regulatory bodies that are designed to protect vulnerable people, like CQC, can be unapproachable and unhelpful, and as we all know, sometimes it even takes undercover reporters to expose bad care.

When you put your head above the parapet you should be assured of knowing that you will be listened to and action taken swiftly and fairly. Driving up standards only happens by finding and eradicating instances where people are at risk of harm, abuse or even death. Complaining about bad practices, decisions, poor care or management should be something people feel that they can do freely and in confidence. Sadly many people do not, and if my father was still alive I would not be sharing our experiences with you now, so there is still much to learn and change about the way the UK approaches complaints about the most important issues of all, those of life and death.

Until next time...

You can follow me on Twitter: @bethyb1886

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Dementia’s emotional rollercoaster

Living with dementia is one of the toughest challenges any family can face. Emotions become raw and brutally exposed, and the constant question of, “Why did our loved one develop this?” is a harrowing, often daily, exercise in trying to understand that which cannot be understood.

Amongst the many families I have met going through their own unique dementia journey with a loved one, some common emotional themes have developed, five of which I am going to explore in this blog. Interestingly, given that many people feel dementia takes away the closeness they once had with their loved one, all of these emotions are common in the person with dementia too, so maybe we are not so far away from each other when it comes to the deepest feelings after all.

DENIAL

The early stages of dementia are, for many people, all about hoping that what they think is happening is not actually happening at all. They want it to be a figment of their imagination, an over-reaction to some erratic, worrying behaviour that they have experienced, a normal part of ageing, or a case of the person in question being far too educated, important or active to develop dementia.

The belief that this happens to ‘other’ people can become a huge obstacle in seeking help when someone is struggling with symptoms that are affecting their daily life, but it must be borne in mind that this disease is no respecter of background, education, career attainment or personal success. From the wealthiest, most influential people, to those who have struggled all of their lives to makes ends meet; dementia can strike anyone. There is no shame in it, and no reason to hide no matter how much pride you feel.

My father went 10 years without a diagnosis, but at a very early point when his symptoms became evident to a non-medical lady who clearly knew far more than we did, her view was that he was in the early stages of Alzheimer’s. Our reaction was something along the lines of, “What on earth is she talking about?” followed by, “She can’t possibly be right.”

LACK OF UNDERSTANDING

Denial often goes hand-in-hand with a lack of understanding about what exactly dementia is. When dad’s diagnosis finally arrived in many ways it joined up the dots, and everything that had happened in those previous 10 years suddenly had an explanation attached; except that we still did not really know what on earth dementia was.

At that point you then find yourself reading up and trying to understand, questioning the professionals charged with your loved one’s care, and almost secretly hoping that they are wrong and everything will go ‘back to normal’.

Of course that does not happen, your understanding slowly grows over the years, and your ability to spot the early signs of dementia in others (just like the lady who thought that dad had Alzheimer’s) becomes very finely tuned. A true grasp of dementia, its twists and turns, vagaries and anomalies, frustrations and yes, even joys, only comes with the time the journey with this disease takes.

FEAR

Families often put off getting a diagnosis out of fear for what dementia will mean for the future. Fear of the disease is one of the biggest obstacles in tackling it because it feeds stigma, prevents understanding, and leaves people feeling helpless and not in control; effectively it puts you in a vicious circle.

Confronting your fears by seeking a diagnosis is not easy. You may not even have a choice in the end – we didn’t. Dad’s diagnosis came by chance when he had been admitted to hospital after collapsing at home from a stroke. At the time our fears were for his physical condition; we were coping with the shock of finding him on the floor and the worry of whether he would get better.

After all that, in some ways a diagnosis was a relief but the fear does not automatically go, in fact it often gets a lot stronger. Once you realise that dementia is a journey you will be going on whether you feel prepared (you won’t) or not, fear can regularly creep into your everyday life. For me, however, as dad’s dementia progressed, fear of the disease was replaced by fear of the phone call to say that he was ill with a chest or bladder infection and needed urgent medical care.

A SENSE OF LOSS

This is one of the most common, reoccurring, and troubling emotions that families going through dementia with a loved one experience. You feel you are slowly losing the person you knew, you cannot communicate or do the things together that you used to, and you are effectively grieving for your loss whilst your loved one is still alive. It is all the more distressing when you confront the realisation that as dementia is a terminal illness you will, at some point, grieve all over again.

It has been said that in dementia the mind passes away long before the body does. It is a profound statement but one that does not take into account the power personalised, compassionate care can have in helping those living with dementia to express themselves and maintain the bonds that they have with their family. Even when you become accustomed to dementia, if indeed you ever do, I won’t pretend that dark days do not happen when you feel overwhelmed with sadness, grief-stricken and helpless, but care that enables your relative to feel reassured, loved and valued will bring many more happy days than sad ones.

GUILT

This is an emotion that so many families experience if the time ever comes when their relative needs to go into care. At this point families have often been struggling on at home, trying to care for their loved one, or a crisis point has occurred that means residential care is the only viable option.

Whether you have been caring for your loved one day in day out, or you have lived miles apart and been wracked with guilt that you have not been able to do more for them, moving someone so precious and loved by you into a communal establishment can feel life-changing. It can also seem like the final step in accepting that your relative is battling a disease that means that they need an extra level of care, and that this may well be their final home.

The guilt that you cannot care for them for whatever reason can be very troubling, and often goes side-by-side with massive concerns about whether you have done the right thing, and how your loved one will adjust and be cared for. As in all things related to dementia, however, I have always felt that the disease persecutes enough, without adding additional punishment on yourself. Never be hard on yourself or your nearest and dearest; you will need each other and all the strength you can muster in the weeks, months and years ahead, and crucially, your loved one with dementia will need everything you can give them too.

Until next time...

You can follow me on Twitter: @bethyb1886

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