The corners of your mind

I’m a bit of a fan of all things vintage, as you might have gathered given my love of our older generations. Music is no exception to this rule, hence the title of this blog post coming from a much loved song, ‘The way we were’.

 

 

I’ve always felt that the lyrics to this song are a rather poignant reminder of how life changes through the years. It also has important meanings in relation to our memories, the invisible library that lives within our brain and chronicles our lives. Should dementia ever set in, that library becomes muddled, and eventually toms of knowledge are like books that have been borrowed from the library and never returned. The person with dementia then becomes a bit like a frantic librarian, trying desperately to remember where they have stored the particular segment of knowledge that is required.

I wrote in 'Loving our elders and betters' about how, when an older person dies, "It is as if a library has burnt down." Many people would argue that dementia is like a slow burn, very gradually turning memories to cinders, often initially with little physical evidence of the ‘fire’ taking place. Given the choice I think some people facing such a future would rather experience a giant inferno that engulfs their lives with such rapidity that they have no idea that it has even happened, but dementia is rarely like that.

It teases the mind, allowing us to retain selected memories, often those going back many years, but not always the most useful ones. Those crucial practical memories of how to undertake and successfully complete tasks may go very early, as can memories of what we did or said a minute, hour, day or week ago. The precious memories of key life events, and key individuals in our lives, may also end up being filed under absent.

Being deprived of that last set of memories is particularly painful because they characterise our lives and us as individuals. They act as a safety blanket, giving us a place to meander into during those quiet moments of reflection, or provide thoughts of positivity and strength when we are feeling vulnerable or worried. We want to be able to remember people, places and things that are important to us, knowledge we have studied hard to acquire or experiences we want to be able to pass on, but dementia has other ideas.

Memory problems are something we generally – and wrongly - associate with ageing, as I wrote about here. Moreover, I think that throughout our lives many of us are guilty of taking our own memory for granted, and in our interactions with others we readily expect their mind to perform with seamless speed and accuracy. We don’t have time or patience for a hunt around someone else's personal library – we want our information instantly, and not being able to deliver that often leads to the belief that someone is unintelligent, useless, worthless or stupid.

However dementia, and the way in which it can affect our memories, can hit anyone and not just in old age. Having a previously brilliant brain is no guarantee that you won’t get dementia. I’ve met leading doctors, academics and businessmen who are living with dementia – all had hugely admired brains that have now been ravaged. My dad, whilst never a man of high academic standing, had a truly impressive mind – his knowledge of the countryside, farming and animals was second to none. His wisdom was a gift that as a child I never really appreciated. Now it’s gone, I miss it more than words can say.

The corners of our minds harbour things that we may think we will never need, but each memory has its place and importance and being without any of them will adversely affect our lives at some point. We talk a lot about memory ‘loss’ in dementia like it is something that can be found again. Sadly even for people who achieve respite or improvement from their symptoms through therapeutic interventions, they are still living with a terminal disease that is characterised by eventual decline.

What I admire most, however, is the way in which many people with dementia try to guard against this, always working to prevent dementia steeling more books from their memory library. I think as outsiders looking in, we often don’t realise just how hard people with dementia try in order to maintain normality and keep all of those important memories alive. For many, notebooks and post-it notes become their allies – the feeling being that what cannot be remembered must be written down.

Increasingly I think technology (smartphones, tablets and other handheld devices) will have a role to play, particularly for people who are diagnosed with younger onset dementia and are already used to leading very technological lives. However, I think nothing will ever really beat our loved ones for helping to keep memories alive and effectively providing a 'Back Up Brain'* for us all, regardless of whether we develop dementia or not.

Dementia has the power to literally re-write and remove our memories, twisting, confusing and manipulating those precious nuggets of understanding and experience that we build up over our lives. As the song tells us, "Memories may be beautiful and yet, what’s too painful to remember, we simply choose to forget." Having that choice is a wonderful thing that we should never take for granted. 

Until next time...

You can follow me on Twitter: @bethyb1886

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*Back Up Brain – BUB –  is a phrase borrowed from my inspirational friend Kate Swaffer, an Australian lady living with young-onset dementia for whom her husband is her primary BUB. I would recommend checking out Kate’s blog http://kateswaffer.com/daily-blog/.

Being a pain detective

One of the questions I’m asked a lot in relation to dementia care is around how we find out if someone is in pain. In advanced dementia, when potentially a person cannot articulate clearly if they are in pain, and if they are, where that pain is located, it can be really difficult for those caring for them to ensure that they have the care they need.

We experienced examples of this with my dad. When he was first diagnosed with vascular dementia he was still walking and talking and generally getting into various scrapes. He had a few trips to A&E to be patched up when he fell, including one occasion when he split a blood vessel in his head and had to have emergency staples to close the wound (and when I say emergency I mean that there was no time for local anaesthetic – dad didn’t even flinch).

He was becoming increasing unsteady on his feet and aside from the effect dementia was having on his body, we also knew that there was an unrelated physical cause: Dad’s knee was gradually wearing away - he had been due a knee replacement operation for many years. Eventually he became unable to articulate when his knee was particularly painful or ask for pain relief, and with the risk posed by general anaesthetic he wasn’t suitable for the replacement operation.

It became a ‘guessing game’ to work out when he needed pain relief. On the one hand the nurses looking after him felt he was more likely to need it when he was walking (which he frequently did and couldn’t be dissuaded from), but we also knew that for many years previously dad had often complained about his knee more when he did nothing and it began to ‘seize up’ – hence often being restless in bed.

My dad was never one to make a fuss or take medication unless absolutely necessary (indigestion remedies and throat pastels aside!) and that didn’t change when he was living with dementia. He would dismiss any suggestion that he was struggling with his knee or that walking had become painful, then one day he just stopped walking – we put it down to the knee finally giving up and potentially his brain also giving up on trying to walk.

Of course pain relief problems don’t just exist in relation to joints. Dad would develop bladder infections: Anyone who’s had a UTI will know that they can be very painful, and their effects can rapidly escalate if a person is left in a soiled incontinence pad (see my blog post on incontinence here). Dad would sometimes hold his head – did that mean he had a headache? The atmosphere in his care home was often very oppressive, and occasionally family members would have headaches whilst visiting dad, so it wasn’t inconceivable that he may have one too. When dad became unwell with upper respiratory infections he was often given paracetamol, mostly to control his temperature, but it is highly likely that he was also suffering with a sore throat and possibly ear or sinus pain too; we never knew if his low dose of paracetamol was enough to give him relief from all of his symptoms.

However, perhaps the most startling example of the ‘guessing game’ relating to dad’s pain management came during one particular inpatient experience. Dad was in hospital for pneumonia and had recovered quite well from initially being very ill. The ward staff were used to dad being quiet, but as he began to feel better he became more vocal. On routinely checking dad’s notes we noticed he’d been written up for morphine and was being given other pain medication. We asked why, and were told that as he was making so much noise he must be in pain.

We pointed out that dad was most likely hungry. We suggested giving him some food (something hospital staff were generally very reluctant to do due to his swallowing problem). Unsurprisingly, once his tummy was full, dad was contented. The noise he was making was the only way he knew to articulate his hunger, which only goes to prove how easy it is to misinterpret what someone with dementia is trying to alert you to when they are unable to communicate that with clear conversation.

The key to understanding when someone with dementia is in pain is often down to knowledge of the person. If they can speak to you clearly and concisely that’s great, and certainly in the earlier stages of dementia that should be possible, but one of the problems we encountered with my dad was the differences that developed between what he said and what he meant.

So for example, someone can say they are not in pain when they actually are. They aren’t trying to deliberately mislead you; they may simply not understand the question, be unable to find the words to reply accurately, or indeed may not want to be a burden or ‘put you to any trouble’. They may not recognise a feeling they have as a pain, or could become confused about what is meant by the word pain.

The key to being a good pain detective is multifaceted. You need to understand the person’s history – do they have any known conditions or problems that would suggest that they could be in pain? Have there been any recent incidents or infections that could be causing pain, or is there any possibility that there could be but you don’t know about them? Has their behaviour pattern changed? Have you studied their expressions and body language?

The last two points are especially important when you are trying to detect pain. If you are examining the person, watch them closely to see if they behave unusually (that is unusually for them), or produce facial expressions or other body language that isn’t usual for them. Holding their hand whilst doing a physical examination may produce involuntary movements from them that suggest pain in the area you are examining.

It’s important never to assume someone is in pain, but also not to assume they aren’t if anything about their movement, mood, interaction or general health and wellbeing has changed. People have been known to continue moving when they have a broken bone and for that broken bone to go unnoticed as a result. It’s also important not to overmedicate, or assume that palliative pain relief is needed when any doubt exists as to whether someone is nearing the end of their life.

The side effects of any pain relief medication also need to be taken into account if other changes in a person become evident during the time they are receiving this medication. Anything that is likely to make someone drowsy or upset their stomach will mean they require close supervision. Medication should also be regularly reviewed to see if it is still necessary; in my view it is poor practice to simply leave a person on a medication unless there is a clear need for that medication.

We should never lose sight of the fact that just because someone is living with dementia it doesn’t mean that they don’t feel physical pain. Not being able to articulate something doesn’t mean you don’t feel it and aren’t longing for someone to make that pain go away. Our role is to help people with dementia to have the best quality of life possible, and minimising physical pain is a big part of that.

Until next time...

You can follow me on Twitter: @bethyb1886

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On the move

For everyone who is fortunate enough to be able to move around independently, I would estimate that most take that for granted. Likewise, I would suggest that one of the key ideas people have about ageing is that immobility is likely to come hand in hand with getting older.

Along with wearing dentures, losing your driving licence, becoming incontinent and living with dementia, immobility is right up there in most people’s vision of what ‘being old’ is like. It’s a hugely stigmatised view of course, since many people live a very long life without encountering any of these problems. Indeed I once knew a lady in her 90’s who was still driving her little Mini around, was perfectly able to get to the toilet when she required it, still had all her own teeth, and most definitely didn’t have dementia.

Nevertheless, the image of the older person with their walking stick or zimmer frame looms large in most people’s vision of ageing and indeed of living with dementia. It is worth pointing out, however, that I’ve known many people who never really had mobility problems during their years with dementia, and only became confided to bed when they became ill with an infection that they died from shortly afterwards.

Supporting mobility is a key aspect of helping a person to live well with dementia. The exercise is good for their general health, the independence is good for their mind, and mobility ensures a sense of normality is retained when many other aspects of their life may be changing. That’s not to say that being mobile doesn’t present risks, particularly around the desire to walk a lot (as I wrote about here) and the potential for falls and accidents that can result in broken bones, cuts and bruises. All of these can take a longer to heal for an older person, and if a hip is seriously broken it can be a threat to someone’s life.

These risk factors often lead to worries about a person’s safety and security if their mobility is actively encouraged, but we shouldn’t become too risk adverse. Mobility is vital part of a person’s life that as families and professionals we should make sure we support. Keeping people seated or in bed simply to protect them from the potential for injury is likely to do a huge amount of harm to their physical and mental wellbeing, and even more so if restraints are used.

Seeing immobility as some kind of cosy cotton wool world is totally inaccurate. If someone becomes immobile it produces a whole range of added problems, most notably around pressure sores and increased risk of infections. My father had far more chest infections when he became immobile, and his GP was firmly of the belief that his lack of movement was contributing to his inability to effectively remove the secretions from his airways. Imagine being unwell with chest, bladder or stomach problems and unable to move – a fairly unpleasant thought for anyone to contemplate.

Maintaining an individual’s mobility when they are living with dementia does, however, produce challenges. If a person becomes unsteady on their feet and requires a walking aid, trying to support them to learn how to use that correctly can be very difficult. Keeping people mobile if they are beginning to struggle with independent mobility also requires a huge amount of commitment from professionals and/or family members.

In care settings, including hospitals, you need high staffing levels to ensure that there is enough support to help people to move around. Movement often takes time and patience and cannot be rushed. In almost every care setting there are never enough physiotherapists, occupational therapists and indeed supporting care staff who are ready, willing and able to help someone to walk down the corridor, go to the loo or indeed venture further.

Even if an individual does eventually become immobile, that doesn’t mean that they should be dumped in a room and left there all day, or excluded from events or activities simply because no one has time to give them the opportunity to move. One of the big problems in my dad’s care home was always the lack of wheelchairs; you would often have to beg and borrow in order to find a wheelchair for him to be moved from his room. It would be utterly unacceptable for someone to not have clean clothes or food in a care home, but apparently it’s perfectly acceptable to restrict their chance to move around just because they are unable to walk anymore.

Immobility has huge implications for a person’s quality of life. It can affect the opportunities they have for engagement, fun, new experiences and environments, and the pursuit of hobbies and interests. It is also likely to affect emotions, often producing frustration, anger or boredom. Indeed, whenever you feel someone who is immobile is producing ‘challenging behaviour’ ask yourself how you might feel in their circumstances. Some people can even lose the will to live through immobility.

For many years the Paralympic movement has shown us what people can do when they are restricted by mobility or movement (see my blog on the positive approach of Paralympians), yet we often see older people, people living in care homes and particularly people with dementia, assume immobility is a natural part of their life and simply give up on helping them to maintain their mobility. I’m not suggesting our older generations are likely to want to become Olympians (well you never know!), but they should be given every opportunity to keep moving, however much they can and for as long as they can. After all, wouldn’t you want the same chance afforded to you?

Until next time...

You can follow me on Twitter: @bethyb1886

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A rallying call!

For the start of 2013 I wrote 'My dementia wish list’. Arguably I could just re-blog that for the start of 2014, since everything I described in that post is just as relevant now as it was 12 months ago.

Does that mean 2013 was a failure in terms of achieving those aims? Some may argue yes, but I’m not naïve enough to believe that those 10 objectives can be met in just one year. In my mind they remain a benchmark against which we should all be judged, and I include myself in that.

So many people talk about the end of the Christmas holidays conveniently forgetting that for many people the last two weeks haven’t been a holiday. For family carers and many front-line health and social care staff, Christmas Day, New Year’s Day and the other 363 days of the year are interchangeable; the relentlessness of what these individuals do, combined with their dedication and selflessness is what keeps our most vulnerable people safe, well and happy. If we recognise nothing else in 2014 it should be that.

Sadly with existing budget cuts, and more in the pipeline for 2014, services are closing or being restructured in a way that often appears to bear little resemblance to what might benefit family carers and frontline staff. Granted I’m biased after my experiences with my father, but I do genuinely believe that there are some things a civilised society should hold sacred, and looking after its most vulnerable people, and those who are charged with caring for them, to the best of that society’s ability should be sacrosanct.

Of course if evolution makes it possible to do things better and spend less money in the process that is a win-win for all, but the shear logistical requirements of health and social care will always have a high price tag, and to only see that rather than the requirements of the people accessing desperately needed support is the mind-set of someone who has never needed help for themselves or a loved one.

That mind-set is also completely at odds with the experiences many readers of this blog have had. A glance at the top 5 most-read posts on D4Dementia offers a very interesting insight into the priorities my readers have:

5) End-of-life care: A very personal story

4) Hydrated and happy (Dehydration)

3) So how much do you know about dementia? (Awareness)

2) The voices of experience (Experts by experience)

1) Hard to swallow (Swallowing problems/dysphagia)

The social media activity around my blog has shown, time and time again, that the posts involving practical advice on how to cope with common experiences of caring for a person with dementia (as delivered by ‘Hard to swallow’ and ‘Hydrated and happy’) are as widely read by professionals as they are family carers - indeed perhaps even MORE widely read by professionals.

Likewise the need to understand what good end-of-life care looks like will affect us all at some point, and as much as it is a difficult and potentially even a taboo topic, people from all walks of life are driven to seek out that advice. Then, of course, there are posts 2 and 3 on my list that exist to remind everyone about the value of the lived experience, and the need for basic awareness delivered in a meaningful way from said experts by experience.

The popularity of these five posts alone, alongside a look at the search terms statistics that tell me what individuals are searching for when they find D4Dementia, proves just how much this information is needed and how interchangeable it is (IE: not confided solely to those who are caring for a person with dementia). It doesn’t take much more of a leap of faith to link that need for information with the real-world need for care and support.

Fast forward another 12 months and I suspect that at the start of 2015 this may have become an even more desperate situation for many people. What of course will be looming on the horizon by then will be the UK General Election, expected in May 2015. In order to ensure that the needs of the UK's most vulnerable people, and those who care for them be they family members or professionals, are not forgotten, 2014 will be a pivotal year to continue to highlight the difficulties that they are facing and push for the care, help and support that they need.

If I could give you a rallying call for 2014 it would probably read ‘Let’s be united and determined’. In my mind there is no greater challenge for the year ahead than to ensure that health and social care is given the priority anyone who has needed it, or worked in it, knows it deserves.

Until next time...

You can follow me on Twitter: @bethyb1886

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Reflections on 2013

Reflecting on a whole year is never an easy task. So many different events, milestones, and most importantly people have contributed to the last 12 months, each leaving me with that most precious gift – a memory.

My collection of memories for 2013 is fairly eclectic – I’ve spoken at conferences, run workshops, taken part in debates and appeared on radio and TV. I’ve become a Dementia Friends Champion and a member of the Dementia Action Alliance, as well as fundraising for Dementia UK and Alzheimer’s Society. I’ve become an Ambassador for BRACE, won ‘Best Independent Voice on Older People’s Issues’ at the Older People in the Media Awards, and made a film that was shown at the first ever G8 Dementia Summit.

Attending the Summit, and having tea with the Prime Minister afterwards, is arguably the most high-profile memory of 2013, but could it also be the one that has the most impact in the years ahead? I was asked after the Summit whether I thought the G8 would stick to their commitment to, “Find a cure or disease-altering therapy by 2025.” My answer is that it is up to all of us who are passionate about dementia to ensure that they do.

But for this, my last D4Dementia blog post of 2013, I want to share some memories with you that aren’t going to make huge headlines but will live in my heart and mind for a long time. So, in no particular order:

Meeting Kate Swaffer: Arguably the greatest privilege of the year, and certainly one that I’ve spoken about extensively since, was meeting Kate, an online friend who became a real life friend over a #dementiachallengers lunch in London. Kate’s grace, poise, humour, kindness and wisdom is inspirational - she also happens to be living with dementia. Kate, along with the lovely people who featured in the G8 films (Hilary, Trevor and Peter), are shining a vital light into what living with dementia REALLY means.

Moral of the story: Think myths and stigma about dementia and then think again.

Our Memory Café:  It’s been a tough year for dementia services in my area. Our Singing for the Brain (SFTB) closed down, and our Memory Café is mostly being propped up by people attending from the local care home. Alongside the sadness of hearing about the deterioration of some of our friends from SFTB, came the joy of seeing ladies from the local care home singing along to some of their favourite tunes at our impromptu music group at the Café. As one of the ladies said, “I thought I was only going to get a cup of tea. I didn’t know we would have singing too. Thank you so much.”

Moral of the story: Sometimes the small things in life bring the most pleasure (and don’t require huge sums of money to deliver).

My dad’s last care home: I’m somewhat ashamed to admit that since we cleared out my dad’s room following his death in April 2012, we hadn’t been back to the care home that looked after him in the last two weeks of his life. That isn’t because we didn’t want to, but despite the loveliness of the home I still picture answering the door to the undertakers and seeing dad being wheeled out of the home on their trolley. However, when I was asked if I could show a colleague from NHSIQ around a good care home, there was nowhere else I could have taken her. It was emotional to be back there again, but the huge smiles, hugs and warm welcome from the amazing people working at the care home reminded me yet again what a special place it is.

Moral of the story: For all the negative reports you hear about social care, there are far more good places and people that are never spoken about.

Finally…

People: I’ve met such a huge array of people this year – politicians, health and social care professionals, managers, civil servants, business owners, academics, families from all walks of life, and many inspirational people who are living with dementia. From the youngest to the oldest, from those who are extremely knowledgeable about dementia to those who feel completely baffled and are desperately seeking help, it’s fair to say that each and every person has managed to inform and educate me in some way.

Moral of the story:  We all have something to offer, and to dismiss others is to do ourselves a great disservice.

So, it is with my precious collection of memories from 2013 that I close this blog post by wishing you all a very happy Christmas and a peaceful, healthy and fulfilling 2014. My next D4Dementia blog will be in January, and I’ve taken the difficult decision that D4Dementia will become fortnightly from next year, so suffice to say it will take me somewhat longer to reach my next century of blog posts. What won't change, however, is my passion for raising awareness of dementia, tackling 'difficult' topics, and providing positive and practical advice.

Thank you all for your amazing support over the last 12 months.

Until 2014...

You can follow me on Twitter: @bethyb1886

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G8 Dementia Summit – Our time is now

 

Me and my dad in 1980...

...and 2011

The first ever G8 Summit on Dementia will take place in London today. A historic moment that finally demonstrates an acknowledgement from the world that dementia is THE global health and care priority that governments worldwide are grappling with.

Looking beyond the big vehicles of government and global politics that will dominate the headlines today though, and actually what I see is people. Most individuals in that room will be there because their job demands it, but when they leave their offices, get out of their ministerial cars and close their own front doors, they are first and foremost people.

I hope today’s Summit has a real humanity about it, because like every global focus on something that afflicts the body, it is about raw humanity. It’s about life and death, degeneration and pain, and the hope that we can do something better for people who are experiencing that now and in the future.

Whilst recording my personal experiences of dementia for one of the films that will be shown at the Summit today (you can watch my film here), I broke down in tears. Whilst I may cry in private in those moments that still sting me following my father’s passing after 19 years with vascular dementia, I have never cried in public whilst on a ‘work’ assignment. Professionalism demands that my message has controlled emotion, not the sort of breakdowns associated with those who are grieving – tears suggest you want sympathy, when actually I want action.

Yet in that studio the moment got to me in a way that no other moment quite had in a public arena. The cameras stopped, and looking back now, I wonder how many people who have lost a loved one to dementia had wished in those dark and difficult moments that the world could stop, just like those cameras did. Many of the people watching my recording were also moist around their eyes, on my journey home those emotions were still simmering under the surface, and even now as I watch the film I feel tearful.

Despite all of my public speaking engagements, nothing really prepared me for what sitting in front of those cameras, talking about my personal experiences of my dad’s dementia, would really be like. I hope that despite all of their years as hardened politicians, civil servants and business moguls that nothing really prepares the delegates at today’s Summit either.

If I could ask one thing it would be that everyone in Lancaster House today arrives with a clear mind and a willingness to embrace the message of humanity that I anticipate will be set early on by hearing the personal accounts of people who have dementia, and those who have cared for a loved one with dementia. My message, although sad, has hope in it too, and my wish more than anything is for that hope to shine through.

We need a fresh look at how we approach dementia. How we care for people living with it, how we support them and their families, and how we give everyone who is touched by dementia some of my hope. In short ,a strategy that goes beyond partisan boundaries and political colours and puts people with dementia and their families at its heart: an outcome that is about people and humanity.

In my mind it is also about delivering something that de-stigmatises and empowers people living with dementia and their families. I fear a rush of headlines that depict dementia in the same way that you would wars and disasters. I can tell you now, as someone whose father lived with dementia for 19 years, I largely avoided any dementia related media coverage in that time. That which I couldn’t avoid often demonised people living with dementia, yet my father was a loving, intelligent, family man, not some raging brute who needed to be caged and forgotten about.

Gravitas in the argument around dementia doesn’t come from using ever more extreme language in describing it. Nor does it make improvements in care and support, treatments, prevention and cure any more likely – if it did then they would be here by now. It comes from humanity. From seeing people with dementia as people. The politician who takes his children to visit their gran in her care home. The businessman whose mum has just had a fall at home and is feeling really confused. Me and my dad.

I don’t want to call the G8 Dementia Summit a once in a lifetime opportunity, because I believe the chance to make a difference exists every day, whether you are a scientist, a politician, a journalist, a medic or a care worker. Whatever profession we choose we are still people, subject to human frailty, and foolish if we are not mindful that if dementia doesn’t affect our grandparents or our parents, it might just affect us or our children.

Our time to make a difference is now.

Until next time...

Watch the live stream of the summit here: http://dementiachallenge.dh.gov.uk/

You can follow me on Twitter: @bethyb1886

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G8 Dementia Summit - My dad’s message

My dad

I often wonder what life would be like if my dad was still alive. If he had never developed dementia I imagine him still growing a few veggies, reading his books, sitting in his chair enjoying box sets of the old TV programmes he loved so much, watching the Arsenal (he would be happy with the way the season is going so far), listening to favourite music with my mum and them both singing at the tops of their voices, and regularly tucking into the meals he most enjoyed (traditional meat and two veg being the number one - he didn't share my passion for pasta and curry).

Dad would be 86 now, and I think he would still have been pushing himself as hard as he could. My dad was never a man to give up or give in, including in the years that he lived with dementia. He always said that there was no such word as can’t. “Can’t means won’t, and won’t has to be made to,” he would say. An interesting idea to throw into the mix with the G8 Dementia Summit in mind.

Dementia robbed me of my dad. I can only guess what he would be doing now, I will never know for certain. He lies in a wooden box six feet under the ground; all I have left are my memories and the chance to imagine what life might have been like if we were still together. Of course we all have to die of something at some point, but a 19-year struggle with vascular dementia, a slow and often painful decline resulting in complete dependency finally ended by aspirating on your own vomit five times (resulting in a catastrophic pneumonia that engulfs your body over a four week period) isn’t, I would venture to suggest, the way in which most people would like to go when their time comes.

For my dad read many more mums and dads, grandmas and granddads, aunties and uncles, cousins, brothers and sisters and, because dementia can affect younger people too, sons and daughters. People from all walks of life, all ethnicities, religions and sexualities – no family is immune from watching a loved one developing, living and eventually dying with dementia.

Is it worse than watching a loved one living with any other disease or condition? I can’t honestly answer that since I’ve never cared for someone with any other terminal disease, but I can tell you that it takes a hell of a lot out of you. Even though you find strengths to compensate, they don't make up for the deficiencies that can feel overwhelming, or help you to deal with the emotional rollercoaster that you find yourself on, most starkly illustrated by the sense of loss that pretty much every person I’ve known who has been personally affected by dementia will talk about.

In the future many more families will be experiencing those same feelings that we did. Alongside the emotional toll will come the financial toll, which I imagine will be talked about extensively by the G8 on 11 December. In truth, I suspect much of the impetus for this Summit and the popularity it has found with other nations is, ultimately, down to money. Dementia costs governments a fortune – more than cancer, heart disease and stroke combined in the UK alone - and it will only cost them more in the future if the predicted rises in the numbers of people living with dementia are correct. If they can find a way to treat the many different types of dementia better, or indeed cure or prevent even just the most common ones, it would have a huge financial benefit.

Any family would welcome better treatments, and even more so a way to prevent or cure their loved one’s dementia, but looking back over those 19 years with my dad what we really wanted more than anything in the world was to understand how to care for him to give him the best quality of life possible. We had little choice but to accept that he had dementia, and in a constantly changing landscape we didn’t have time to cling to hopes that he could be cured. We just wanted him to feel happy and well cared for.

As it happened, through luck or judgement, I’d say we actually made a pretty good job of that in the end, but I think of every family who are currently poking around in that dark wilderness of feeling totally baffled and bewildered and my heart sinks. Surely in 2013 we can offer people with dementia and their families a personalised plan of care that puts them, rather than dementia, in control once more.

Looking back at what I imagine my dad would be doing now if he was still alive and hadn’t developed dementia, I realise that even WITH dementia he could, and should, have been able to continue to do all of the things that he loved, even if they needed to be modified for him. A loss of memory is not a loss of life, and yet lack of awareness, understanding and knowledge puts up so many barriers to that golden aim of ‘living well with dementia’. All of those can, in some way, be addressed by the G8 Dementia Summit.

To the Health and Science Ministers, advisors, bureaucrats and business leaders at Lancaster House who will be searching for common ground and a positive way forward for people with dementia -  potentially hitting a few stumbling blocks along the way - I think my dad’s message to you would be this: “Can’t means won’t, and won’t has to be made to.”

Until next time...

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