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Thursday, 31 May 2012

Food for thought

One of the things many of us take for granted in our busy lives is the enjoyment of food. It is vital to fuel our bodies for the physical and mental exertions they face, and it is one of life’s great pleasures, but what happens if you forget about the importance of food?

Many people living with dementia develop problems with eating which are hugely distressing both for the person concerned and their carers and loved ones. Those living with dementia can lose the sensation of hunger or thirst, or conversely, overeat because they cannot distinguish when they are full. They can clamp their mouth shut, making feeding very difficult, or spit out some or all of what they are given.

As dementia progresses, those living with it can increasingly lose their ability to smell and taste, and some people then only respond well to strong flavours and aromas (and I don’t mean overcooked sprouts!). Likes and dislikes can also change frequently, and those caring for someone with dementia need to be both innovative and flexible with food, and the choices they can offer someone developing problems at mealtimes.

The colour and size of plates, style of cutlery, patterns on table cloths, and distractions in the room can all affect a person’s desire to eat. For some people portion size is the key problem, with piled up plates appearing to be an insurmountable task, whilst for others it is simply about deciphering what they would like to eat when they cannot necessarily accurately tell you.

The single most important point, however, is that like with every other aspect of dementia, every person living with it is different. What works for one person won’t work for someone else, and what works on one day can spectacularly fail the next. What I can pretty much guarantee, however, is that the higher the quality of the ingredients and the more skill with which they are prepared and presented, the greater the chance that someone living with dementia will be persuaded to eat the meals so vital to their quality of their life. It all boils down to valuing the person living with dementia and giving them something that a person without cognitive impairment would be happy to eat.

We were lucky with my dad, in the 19 years he battled dementia he generally had the appetite a horse would be proud of, only going off his food when he was suffering from an infection. He never forgot how to eat, even if he lost the ability to co-ordinate cutlery (resulting on one occasion in him using his fingers to feed himself ice cream), and mealtimes were generally happy occasions. As his dementia progressed he eventually could no longer feed himself and he relied on his carers and his family at every mealtime, and soon after that he could no longer drink for himself either, and so had to be assisted with that too, but he was a willing recipient and a joy to care for.

It is crucial for someone with dementia that they are given time when eating. Sadly care staff are often under huge pressure to get everyone fed as quickly as possible, rushing those who would otherwise eat more if given longer. Likewise the pressure on staff can result in not enough drinks being given, simply because again they do not have the time to sit with each resident while they either drink themselves or are assisted. The way in which some people are fed is also very alarming, and of course in hospitals, many people are not fed at all!

My father was a man who adored food; not in an unhealthy, developing obesity sense, he just loved good, honest, home-cooked food, and as a farmer and keen gardener he knew the value of fresh produce and organic production methods. It was, therefore, a particularly cruel twist of fate when he developed dysphagia, otherwise known as a swallowing problem.

Over the last four years of his life this became worse and worse, until in the last few weeks there was a 50/50 chance of anything taken by mouth going into either his stomach or his lungs, the latter resulting in pneumonia. He battled valiantly to eat even the most e-number laden, gluey and utterly revolting hospital food, and when he finally moved into his new nursing home, still very poorly, he briefly showed renewed enthusiasm for life with food that was homemade, lightly pureed and both looked and smelt really appetising, a real revelation in how to produce food that is perfect for someone with dysphagia.

If dad’s last care home could produce meals of such high quality, then there is no reason why all homes cannot do the same, many already do. Likewise, hospitals should be forced to fundamentally overhaul the food that they are feeding to those in their care. I was reliably informed by other patients that the standard meals were pretty disgusting, and certainly the pureed food given to my father most people wouldn’t feed to a dog (and the dog would probably refuse it anyway!).

Nutrition is not given a high enough standing in our society of fast food, ready meals, and the chemical laden products being ingested by huge swathes of the population, contributing to the many health problems people now face. It is even fed to the most vulnerable people in hospital at the very time when they need to be getting better, not worse.

For all those living with dementia, and everyone who wants to prevent developing it, a healthy, balanced diet is vital, and it is something I will post about again in more detail at a later date.

 
Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Tuesday, 29 May 2012

Can the UK rise to the challenge?

Whether you are living with dementia, caring for someone with it, have encountered dementia at some point in your life through friends or family, work within the health and social care sectors, or are someone whose life has never been touched by this cruel disease, I am sure we can all agree that living in dementia friendly communities would be beneficial for everyone.

That we don’t already is down to, amongst other things, stigma, intolerance, an inability to make allowances for anyone who falls outside of the considered 'norm', and ultimately that since dementia is believed to be a disease of the old (which it isn’t exclusively, far from it), and the older generation are not valued anywhere near enough, it is somehow considered unimportant, even an irrelevance to many. In short, something that should be hidden way until people die with it.

Now society needs to make the same leap it has in accepting other minority groups and adapt itself for those living with dementia, thus enabling them to remain valued within their communities throughout their journey with this disease. In fact with cases of dementia predicted to rise to 115 million worldwide by 2050, far from being a minority disease, dementia will be something that is affecting huge swathes of people both directly and indirectly, including those who, for now, are completely untouched by it.

Massive strides have been made to help disabled people, children, and those of different ethnic backgrounds and sexual orientations to get a fairer deal, and in the medical sphere many other diseases are now widely recognised, talked about, and those living with them are assisted to lead lives that are active and full, so it is not impossible, but it is a big task.

You realise just how far the country as a whole must go when you encounter discrimination against those living with dementia from within the very sector caring for them. On my travels as a singer in care homes last year I visited one particular nursing home; it was very large, bright, airy and outwardly extremely welcoming. I discussed my background in dementia care and they wondered if I would be prepared to come and sing for the residents of their dementia unit. They admitted that, although they knew that those residents living with dementia loved music more than any other activity, they always booked the entertainers to come and sing for the 'normal' residents on the non-dementia unit. They thought that maybe it was about time they changed that, but if I was going to come and sing for their dementia residents they would like to pay me less! My reaction isn’t printable.

In balancing the argument I would admit to having had other, far more positive experiences which I will talk about at a later date, but it is pretty damning that if the whole of our care home sector isn’t even producing dementia friendly communities from within their own walls, we have got a job on our hands to convince the population as a whole to value, appreciate, support and help people living with dementia, and all those whose lives are touched by this disease.

I actually think that, despite the odds, it is possible to make the UK a place where people who are living with dementia can lead the lives they deserve to, rather than the ones foisted upon them by prejudice and ignorance. For such a quest to be successful, however, the people at the heart of it need to be those who know what everyday life with this disease is really like.

In another blog I will write about my vision for dementia friendly communities, and what I think would improve the lives of all those for whom dementia is a reality now, or will be in the future.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Saturday, 26 May 2012

Every face tells a story

My dad's memory box
Behind every illness, every disease and every condition there is a real person, yet when it comes to dementia it is not the person living with it that needs reminding of this, it is the society they live in.

Sadly far too many people cannot see past the manifestation of the dementia. For them, the symptoms the person is displaying are all there is to that person. Everyone has a ‘Life Story’, however, and just because they don’t all make it onto ITV it does not mean that they are any less valid.

Amongst our favourite things at one of my dad’s care homes was how they encouraged relatives to compile memory boxes for their resident, which were then put on the wall directly outside their room. You could put pictures, small items of memorabilia, and anything else that represented the life the person had before they had moved into the care home.

I very proudly spent a day compiling dad’s, which consisted of numerous captioned pictures that charted his life from being a strapping young man in his 20’s with a cheeky smile, to photos of him with me and my siblings as babies. In many ways, however, it was even more enjoyable when other relatives had done theirs, and you could walk the corridors and read about the lives of residents that we had grown to know and love.

Their stories showed the love and laughter they had enjoyed, their marriages, children, holidays, careers, passions, pleasures and hobbies. I would honestly say that despite the advanced dementia many of these residents were living with, you could see glimpses of the lives they’d had in everything they now did, you just had to take the time and trouble to appreciate that.

The perfectly dressed lady who had come into the home with a wardrobe of smart work clothes and some sparkly separates; she’d had a high-powered job and enjoyed cruises with her husband. The man who loved to wander outside and was always up early; he had been a farmer. No matter who they were or where they were from, they all had THEIR story, and in many ways it was even more absorbing precisely because they could not tell it anymore; almost like looking through a window into their heart.

We would talk at length to anyone who would listen about dad’s life, his likes and dislikes, the things that made him laugh, the things that upset him, his achievements and the causes he believed in. Anything just to reinforce the point that he had a history, a life before dementia, and that the dementia, whilst it had taken so much away from him, would never be able to erase that.

Unfortunately the world is not quite as enlightened as I would like! As a family we were stared at when taking my father out on day trips: he had a tendency for making incoherent noises, something we had got so used to we never thought anything of it until we would wheel him around a public place; people would often look more than twice and then steer well clear.

Many people love to tut and disapprove, making it very clear that they think your loved one’s behaviour is either deliberate, or that you can somehow prevent them from doing whatever they are doing that it is perceived they should not be.  Imagine their displeasure when, because dad had to have all his drinks thickened during the last four years of his life, we would spoon them into him. Had I been feeding a baby no one would have batted an eyelid, but because he was an adult this caused most people to double take, whisper and turn their heads.

The lack of wriggle room in people’s perceptions is largely down to the fact that for so long dementia has been hidden away, and those living with it excluded from society. A lot of that is as a result of stigma (which I wrote about here), and tackling the misconceptions and fears associated with it will make a huge difference in the ability of society to see the person beyond the dementia.

Dementia is not who someone is. They are the same person they always were, it is just that the disease they are living with makes it harder for them to communicate their personality and uniqueness, and for society to appreciate who they really are. Too often people like to form snap judgements, but dementia will cloud that process. Remembering the person requires more considered evaluation, but it is far more rewarding.

It is also worth remembering that feelings and emotions do not ever leave a person. They may be displayed in a different manner due to the dementia, but they are no less powerful, and if society can become more mindful of that it will surely be a better place for everyone to live.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Friday, 25 May 2012

How do you do it?

The question I have probably been asked more than any other over the last few years is how do you cope with having a loved one with dementia?

There is no easy or short answer to that, but overwhelming I have replied that you 'just do'. Watching someone I love with all my heart live and die with dementia has been the most harrowing experience of my life. I would say, however, that caring for someone with dementia is also perhaps one of the greatest privileges a human being can ever have.

The person living with dementia doesn’t choose to have the disease, and as it progresses and they lose more and more control over every aspect of their body and their life, they do not choose to share that journey with you, they ultimately get no say in it. You become part of something unique and so very personal to the person living with dementia.

You have the chance to make a huge difference to their quality of life, fight for the things you know they would want, put a shield of strength and love around their vulnerability, and ultimately hold their hand and live in their heart during the hardest fight they will ever have.

It isn’t a task for everyone, and some people just cannot begin to cope with the reality of the situation their loved one is in, but for those who remain by that person’s side through thick and thin, their lives are changed forever.

For me this change is very much a positive thing. Whilst I would have given anything for my dad to have lived to a ripe old age, fit in mind and body, once his dementia kicked in we had to live with the hand we had been dealt. You can sit and feel pity and sorrow, injustice and fear, or you can just get on with it, absorb it, make every day that person lives the best it can be and when they are gone, help others to understand what dementia is, how they can prevent getting it, and for those for whom that isn’t possible, make THEIR lives the best they can be.

I learnt more about humanity, compassion, empathy and love in those years with my dad’s dementia than I believe any other experience in life could have taught me. As I have touched on before, dementia strips life back to the bare essentials, and reminds you time and time again to cherish the simple, celebrate the ordinary, and continually find a new kind of 'normal'.

As a disease, dementia is cruelty personified, but for those left behind when the dementia has claimed your loved one, there are priceless lessons learnt, invaluable experiences to share and a wealth of selflessness still to give.

If someone you love currently has dementia, I really can only say that you do get through it, even if most of the time you think you never will. You’ll laugh and cry, and when they are finally at peace, you will still just want to sit and hold their hand and have a cup of tea. A simple but amazing life.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Thursday, 24 May 2012

Singing from the same hymn sheet

Me singing to my dad, July 2011
Me singing to my dad, July 2011
Improving the quality of life for people with dementia, especially in the more advanced stages of the disease when they may have very limited communication or ability to do anything for themselves, is one of my biggest passions.

Over the many years of my father’s dementia we tried numerous different therapies to improve his wellbeing and engagement, and by far the most successful was music. It helped that he had adored music his whole life, right from when he was a chorister at Cathedral School through to my childhood when his strong, perfectly tuned voice would rise above everyone else’s at Sunday church services. For a family so vociferously against chemical cosh drugs, music was the naturally therapeutic choice for my dad.

When my father went into his first care home, like most families we got him a TV for his room, but very soon afterwards it was broken, a godsend for dad as he no longer had to sit and watch mind-numbing rubbish that he had no concept of. He still watched his favourite sports and old films on the big screen in the communal lounge, but his room became a haven of music thanks to his CD player and all the albums he amassed via Christmas and birthday presents.

Our approach wasn’t without its teething problems. We went through a phase of having to continually remind the staff not to put the radio on, as the CD player was there for dad to listen to his music, not for the younger generation to enjoy the local station blaring out modern pop tunes, but otherwise I can honestly say that the CD player was pretty much the finest thing we ever bought dad. In fact it was used so much that we actually went through three machines in the eight and a half years dad was in care.

When my father’s dementia progressed to the point where he had very little conversational ability, and latterly could say no more than a word or two, he would still listen to songs and say the lyrics at precisely the right time, proving that not only did he still know the words but he knew exactly where they fitted within the song. Dad’s expressions and reactions showed how much joy, comfort and pleasure music brought him, and you cannot ask for more than that when you are caring for someone with dementia.

Seeing the effect music had on dad persuaded me to use my singing training to go into other homes, and in 2011 I did 35 gigs in care homes, all of which had at least some audience members living with dementia. My experiences paint a very mixed picture of how different homes and providers approach music therapy sessions. Some welcomed me with open arms, their staff engaged with my show and as a result supported audience members to gain the maximum from having me there. Others used my arrival to simply dump their residents in chairs around the edge of a dimly lit room, with the hardest of hearing placed the furthest away from me, close the door, and leave me with my audience while they went to have a coffee break.

Despite most relatives wanting extensive activities programmes for their loved ones in care homes, and the availability of external entertainers and specialists to come in and supplement that, sadly it is often an under-funded area. The experience I had is that whilst my shows were very well received, activities organisers were unable to re-book me, or indeed anyone else, as either their budget had been cut or they had to fundraise.

Activities like music, art, exercise and reminiscence are vital for people with dementia, and yet they are neither valued nor supported by many care home operators, including some of the biggest companies in the country. It is often seen as easier to just sit residents in front of a TV and leave them there.

There is also a huge lack of understanding about how something as simple as putting appropriate music on can change the atmosphere amongst residents. It infuriates me when care homes play modern pop music to their residents when they could be playing music that will offer residents the chance to reminisce. Hospitals with agitated patients could use less chemical coshes if they were more innovative with music therapies. On one of my father’s hospital admissions we were fortunate enough to be given a side room with a CD player, and having brought in some of his favourite music, the change in his mood was phenomenal.

Music therapy isn’t just for people in the latter stages of dementia either. I am now involved with the Alzheimer’s Society ‘Singing for the brain’ programme, which is a fantastic initiative that provides a supportive and sociable group where people living with dementia can come with their carer and ‘sing to express, not to impress’. The focus is on joining in, feeling engaged and improving wellbeing, not on auditioning for X Factor!

Seeing the faces of everyone in the group light up with different songs and styles of singing is hugely rewarding. It reminds me so much of the work I did last year, and how groups of sleepy, agitated or incoherent residents were transformed into mini choirs when I started singing songs they loved. Some people even got up and danced, and in one home a relative told me that she had never seen such an amazing atmosphere.

In my view all care homes should provide ‘Singing for the Brain’ type sessions as a mandatory service, and the huge availability of digital music and MP3 players should promote further, more personalised, engagement for residents. I have read really interesting stories of iPod’s being used very successfully in care communities in America, and the UK needs to catch up with these technological advances. Given the fees being paid by care home residents across the country, this should be just the tip of the iceberg in terms of innovation in how therapeutic dementia care is provided.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Wednesday, 23 May 2012

Don't wait for a 'crisis point'

I heard a pretty shocking statistic at yesterday’s Alzheimer’s Society conference. Two thirds of people living with dementia NEVER get an official diagnosis; if that same statistic applied to the diagnosis of cancer, and as a result two thirds of cancer sufferers died having never been offered any treatment, the country would be in uproar.

So why the silence on dementia? There is a commonly held misconception that since there is no cure, there is no point in diagnosing someone with dementia. However, just because you cannot stop someone dying with dementia eventually does not mean that you cannot help them live well with it in the years before their passing.

My father was 'fortunate' in that he had an official diagnosis of vascular dementia, and as a result had access to specialist care for the last 9 years of his life. His diagnosis, however, only came when his dementia had progressed to a point where he needed to live in a care home. Prior to that, he had lived with dementia for about 10 years, under the noses of his GP, social services and even had a home visit from a Consultant Psychiatrist specialising in old age mental health.

We later learnt from the Psychiatrist himself that he had identified dad’s dementia during that home visit, but had been 'unable to do anything until a crisis point occurred'. Said 'crisis point' duly arrived when we found dad collapsed at home; he had been on the floor all night as a result of a stroke. He was confused, disorientated and unable to move. Without a family to look out for him and check up on him, my father may well have remained on that floor and frozen to death.

From the many accounts that I have heard, things have improved since our experiences of dad’s diagnosis. Back then we didn't have memory clinics, there was much less awareness amongst GP’s, and a lot less information available to us as a family. We had to fight for everything, and despite the improvements in many people’s experiences over recent times, there is an urgent need to streamline services across the country to ensure people do not suffer the dreaded postcode lottery when they seek help.

If a person lives with dementia for years, slowly declining, putting a massive strain on the person(s) caring for them, being at huge risk of getting into situations that put themselves or others in danger, and requiring emergency hospital admissions, then the system is failing, badly. An earlier diagnosis should enable people to live well for longer, provide support to their carers and ultimately avoid costly hospital admissions, so in theory it should be popular with policy makers. IN THEORY.

Supporting people to come forward and seek help will be one of the most significant obstacles to overcome. People suffering from memory problems, confusion, lack of reasoning, difficulties in completing tasks they previously found routine, wandering in their neighbourhood, or hiding/misplacing or mixing up things around the house are often in denial about their problems or manage to successful hide them for a long period of time.

I am a firm believer that information is power, however, and that if those experiencing symptoms and their loved ones are informed they will feel more able to come forward and seek help. It must also be borne in mind that the older generation will often have very negative viewpoints of dementia based on the stereotypes that they grew up with. Busting these myths and showing how modern society can support people living with dementia, will be a big part of giving those with symptoms and their families the courage to speak up, and when they do, we need a UK-wide dementia service that is ready to support them.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Tuesday, 22 May 2012

Dementia – You can’t catch it!

Stigma is one of the biggest problems currently facing those battling against dementia. Fear of the big D easily rivals fear of the big C, but whilst cancer campaigners have made massive strides in helping society face up to that terrifying disease, thus greatly improving diagnosis and outcomes for those living with it, dementia is still hugely misunderstood.

People with dementia are often isolated and treated with inferiority, consigned by many to no longer being seen as valuable members of society. Yet I have frequently thought, particularly recently as we continue to mourn dad’s passing, just how much dementia simplifies life. This crazy whirl that most of us live in for the majority of our lives is stripped back to the most basic needs and wants when someone is struck by dementia, particularly when they enter the more advanced stages of the disease.

In many ways, therefore, society has much it can learn from those living with dementia, not just about the disease, its diagnosis, treatments and ultimately how it might be prevented or even, hopefully, one day cured, but in the lessons dementia teaches us about what is important in life.

Dementia also brings alive in those who care for a loved one battling it the most overwhelming compassion, love, dedication and humanity; qualities that so many people often overlook in everyday life.

Yet dementia is still a largely hidden disease. Recent government initiatives, and work by organisations such as the Joseph Rowntree Foundation to create dementia friendly communities, are attempting to break down barriers, but it is still people living with dementia, their nearest and dearest, and those charged with guiding them through this minefield that have the most to offer in helping the wider population to acknowledge, confront and defeat this disease.

Over the years I’ve encountered many within my peer group who have no concept of dementia, to the point where some have thought you can catch it, or even that I must have it having spent so long caring for my father! People would avoid visiting dad rather than sit and comfort the man he had become, and sadly there are so many people living out their days in care homes who have ‘no’ family, or at least no one who can face the reality of a relative with dementia.

The notion of feeding, washing and changing an adult like you would a child is something that large parts of society find too horrific to contemplate. That someone could have no concept of where they are, who they are, or who anyone around them is, will equally see most observers recoil in horror. I don’t believe, however, that people living with dementia or their families want sympathy, we didn’t. What we have always wanted is an understanding, an acceptance and a will within society to confront this disease and defeat it.

Dementia is stigmatised, but that doesn’t mean it’s not affecting people from all walks of life every minute of every day. The “Out of sight, out of mind” attitude really won’t work with dementia. The people living with it are real individuals, all with their own unique life story, and the real disgrace is to pretend otherwise.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Monday, 21 May 2012

Continuity is key

Last week a story hit the headlines about how Jeanette Maitland’s husband Ken, who was living with dementia, had been given 106 different carers during the last year of his life. Mr Maitland, from Aberdeen, had been allocated two carers four times a day to help his wife look after him at home, but instead of regularly seeing familiar faces, the couple were confronted by a stream of new care givers, which would be baffling enough for most people but even more distressing when the person receiving the care is living with dementia.

Whilst the understanding of dementia has improved significantly in the last ten years since my father was diagnosed, the fundamental inability to grasp some of the most basic facts about this disease remain all too prevalent, and the point about continuity of care is one such example.

It cannot be overemphasised just how important it is for people with dementia to receive all, or at least the vast majority of their care, from someone (or a very small group of people) that they know and have clearly formed a bond with. As communication becomes ever more challenging, known and trusted carers become the best chance someone who is living with dementia has of articulating what they are feeling, needing and wanting, and having that care provided in a way that they respond well to.

Familiarity, warmth and trust between a carer and the person they are caring for also helps to remove fear in the most vulnerable people, promotes calm and wellbeing, and provides dignity and respect during the provision of the most sensitive personal care. It can also add some much needed love and laughter into a person’s life in the most difficult times.

In the case of my father, he experienced significant upset when he was admitted to his first nursing home some 8 years ago.  Our involvement as a family played a huge role in helping him to settle into his new environment, but ultimately it was a highly trained and intuitive nurse who spotted how dad responded particularly well to one carer, and then moved that carer onto dad’s unit just so that he could permanently work as his keyworker, that made the greatest difference. This carer became dad’s best friend, and as my father's dementia progressed, he became the voice dad didn’t have, spotting what he wanted and needed in the times we weren’t at the home, and crucially also providing a link between dad and his family during those periods.

Dad’s positivity towards this carer continued until the last time he saw him, two days before dad passed away, and proves how bonds are formed and never broken, no matter how much cognitive impairment exists.

That Mr Maitland was denied the chance to experience how continuity of care could have dramatically improved his wellbeing is shameful. Anyone actively involved in the care of a loved one with dementia quickly comes to appreciate how something as simple as having the same person regularly looking after their relative makes such a tangible difference, not only to the quality of life of the person with dementia but also the peace of mind that you feel as their family.

Sadly care workers are not valued as much as they should be in our society, and as a result it is often a profession where staff retention and longevity of service is at a premium. Mr Maitland’s experience may be an extreme example of how the system failed to provide him with even the slightest continuity of care, but it also represents the severe lack of understanding about just how vital this aspect of care provision is. The people with the skills to deliver such a specialised and personal service should be supported, and actively enabled, to perform their care giving with the same group of patients every day that they are at work.

At some point in the future I will post about the problems faced when you go from having such continuity to losing it, irrevocably. A bit like a divorce that neither party agrees to or wants!

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Sunday, 20 May 2012

Welcome to D for Dementia

Ever wanted to know what it is like to be directly affected by dementia? Or maybe you are already, or have been in the past?

My father had vascular dementia for approximately the last 19 years of his life, which began when I was just 12 years old.

As a family we saw it all on this long and painful journey, from experiencing NHS services, hospitals and care homes (including living under the failed care home provider Southern Cross), through to the day-to-day reality of watching my father living valiantly with a disease that would eventually lead to his death.

The challenges faced by each area of the healthcare system in coping with dementia, and their successes and failures, are intrinsically entwined in dad’s journey. Like so many before him and sadly so many since, dad’s diagnosis was perilously delayed, and from then it was a rollercoaster ride through the progression of the disease to finally how end-of-life care was provided in his last few days.

There are numerous permutations in how dementia, in its many forms, manifests itself. As well as living through dad’s dementia, I have met so many other wonderful people living with a form of dementia, gaining huge insight into their world, as well as confronting the challenges faced by their loved ones and the many carers and professionals who work in this specialised field.

Dad’s long journey with dementia ended in April 2012, but for me the quest to provide support and advice to those faced with similar situations, inform and educate the wider population, promote debate, and campaign for improvements in dementia care and changes to the care system in general goes on.

I hope that you will join me regularly on this blogging adventure, interact and engage, and most of all find a greater understanding of dementia within these pages.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886