Resolve to ask people with dementia what THEY want

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. For my last blog of 2019, I want to look at how we listen to and respect the viewpoints of people with dementia.

In July 2015, I wrote a blog post entitled: 'Why don't we listen to people with dementia?'. In that blog I said:

“If we are ever to move beyond stigma and discrimination and towards a truly world-class model of support and care for people with dementia, then giving people with dementia a voice and listening to what they have to say really is the only place to start.”

It was, therefore, with some amazement that I read a report about the UK Dementia Congress debate last month entitled, ‘Environmental lies in care homes play an important role in delivering person centred care’. The Journal of Dementia Care said the following about the debate:

“When can you lie to a care home resident? It was a hotly contested issue at UKDC last week, where delegates debated the use of “environmental lies” in care settings, such as fake windows with painted views, “bus stops” to which no bus ever comes, and disguised doors. “As a person with dementia when I go into a care home I do not want them to lie, either in the environment they create or in their actions,” said Keith Oliver, who opposed the motion that deceptive décor can play an important role in delivering person-centred care. It was an impassioned performance from Oliver, who has young onset dementia, which helped sway the audience from favouring environmental lies at the start of the debate to being firmly against by the end. But independent nurse consultant Lynne Phair, fought valiantly in favour of the motion and said there could be a therapeutic value in meeting the person with dementia in their own reality. Phair added: “Environmental lies must be used wisely.” But there was a resounding victory for the motion's opposers – also including Professor Graham Stokes – who had 54% of the audience behind them by the end (compared with 33% at start), while the proposers – also including family member Catherine Naj Dyke - had 37% on their side by the end (40% at the beginning).”

For me, the quote from Keith Oliver says it all, and frankly not only would I have supported Keith had I been at the debate but I wouldn’t have had the temerity to argue against him (which would make me a useless debater!) even if I felt fake environments were a good idea (which I don’t) for one simple reason - He is living with dementia, I am not. My natural standpoint is to show deference to any person living with dementia, putting aside my personal viewpoints and remembering what my dad always told me: “Respect your elders and betters.”

Keith’s views, I suspect, are echoed by many people living with dementia, including the numerous individuals who are living with dementia in care homes and largely don’t have a voice. From my experiences with my dad, I know he found the fake letterbox, door knocker and doorknob put onto his care home bedroom door utterly baffling, and why wouldn’t you? They didn’t function as these items normally would, and they seemed to have been added purely for decoration following a dementia consultant being engaged to ‘improve’ the environment. Sadly, what this consultant didn’t factor in was the amount of confusion and frustration such changes would cause.

In my work with care homes, I have never advocated for the implementation of fake environments. I have always felt, and seen this borne out numerous times, that if the care and support is good enough, if staff really understand dementia and are well trained and supported in their work, then the needs of residents living with dementia will not only be met but continually exceeded.

The money spent on fake environments, which is often considerable, is always likely to be better spent investing in staff. It is people that make the difference in dementia care, nothing is more important than the human element, and to reinforce this I go back to the point I made at the National Care Forum (NCF) Managers Conference last month, and which was reported on by the NCF's Nathan Jones: 

“A hotel environment is just window dressing if the care is not there.”

The type of environmental changes I support are based on bringing the person’s life story alive. I love to see environmental life story work that enables people to be reminded of things in their lives that make them happy or proud. After all, most of us like being surrounded by family photos, mementoes from holidays, and career, hobby, sporting or musical passions or achievements. Most people fill their homes with items that are personal to them, and that is the most apt way to create a supportive environment for a person living with dementia. Even if it’s only within their own bedroom in a care home it is better than the stark, plain, hospital-like rooms that so many people with dementia exist in within care homes, and certainly better than deliberately introducing items or decorations that depict something utterly fake. 

As I said in my September 2016 blog, 'Life story work - The gift that keeps on giving':

“Documenting memories and turning them into vibrant resources that tell their own unique story has a magical quality about it that I can’t put into words – you really just have to try it.”

So, if you run a care home and are planning some environmental changes in 2020 (or beyond), resolve to: Find out what people living with dementia actually want (ask them! And if the people you support aren't able to help, contact organisations like DEEP or Dementia Alliance International), prioritise life story work for anyone you support who wants to participate in that, and always keep it real, not fake.

Thank you for all your support in 2019. Until 2020...

You can follow me on Twitter: @bethyb1886
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Myths and lessons

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at awareness.

My first D4Dementia World Alzheimer’s Month blog in September 2012 was entitled, ‘So how much do you know about dementia?’ In the blog, which remains one of my most popular to date, I sought to bust myths about dementia and talk about what dementia had taught me. The myth-busting is particularly interesting to look back on as the blog was written before Dementia Friends - one of the key initiatives to raise awareness of dementia - was launched. Some of the messages from that blog went on to be incorporated into Dementia Friends and have become mainstream knowledge, but they are still worth repeating:

• Dementia is not a normal part of ageing (types of dementia are caused by diseases of the brain). 
• There is so much more to dementia than just forgetting things (dementia symptoms are multi-faceted, vary hugely and are individual to each person).
• Dementia doesn't just happen when people get older (young onset dementia, defined as dementia in someone under 65, is increasing and dementia can even occur in children, although this is rare).
• People with dementia are still people, not a disease. 
• Dementia is not contagious. 
• Those living with dementia still want to lead active and full lives and not be locked away and forgotten about (most people want to be cared for at home, not in communal establishments).
• People with dementia can make a positive contribution to society if supported to do so.
• You can live well, or live as well as possible, with dementia.

I followed the myth-busting with some personal reflections about what my dad’s dementia had taught me:

• To appreciate the smallest things in life, since they become extremely precious (a simple “Hello” from my dad in his final few months brought a massive smile to my face). 
• To make the most of every day (good days and bad days become an ever-present feature with dementia, and when the good ones come along you want to make the most of them). 
• To never give up (yes there isn’t a cure yet, but there is a lot you can do to make someone’s life with dementia a more positive experience than it would have been ten, twenty or thirty years ago). 
• Finally, in my case, to share our experiences with the world (everything my dad went through is there to inform, educate and influence others. He would have wanted to make a real and lasting difference, and hopefully through me that will be his legacy).

Despite there being seven years between writing that 2012 blog and today, and a multitude of other experiences gained primarily through my work but also from people I’ve known personally, I cannot better those last four points - they sum up so much of what I talk about regularly. 

Appreciating the smallest things in life feeds into the principle of taking notice, one of the Five Ways to Wellbeing that have been pioneered by the New Economics Foundation and are widely recognised as key aspects of supporting good mental health. In 2012 I gave the example of my dad saying a simple “Hello” to me in the last months of his life, but I’ve since heard about even more precious, seemingly ‘small’ moments, not least a lady whose husband (who was living with dementia) told her he loved her - quite unexpectedly as he wasn’t given for such proclamations she said - just hours before a major stroke left him unable to speak another word for the rest of his life.

Making the most of every day was, in my dad’s case, particularly notable when we were supporting him in things that reflected the happiest memories from his life. Examples of that included listening (and singing) to music he loved, looking at books he’d enjoyed in his life (including reading a poetry book about love in the last days of his life), enjoying favourite foods (roast beef), or talking about some of his favourite memories of his life and looking at items that reflected those, which in my dad’s case were his notable achievements as a farmer. We, of course, knew my dad’s life story and so were able to facilitate all of this interaction, but for professionals currently supporting a person that they don’t know as well I would wholeheartedly recommend life story work – it really is the gift that keeps on giving.

Never giving up for me means being really person and relationship centred in your approach to supporting the person. If you spend a lot of time focusing on the big picture of dementia (the minimal treatments and lack of a cure) and the stark reality of dementia as a progressive and terminal disease, you can very quickly feel like giving up. Whereas if you get back to thinking about the person, what might make their life happier or more comfortable right now, you can find a sense of positivity and achievement. A classic example of this comes from a gentleman I met who every Friday would bring 3 roses to his wife in her care home. I was curious as to the significance of the day and the number of roses so I asked him. He said the roses (which always had to be different colours) represented their 3 children, all of whom had been born on a Friday. He said his wife couldn’t remember their names now, so the roses (roses were his wife’s favourite flower) had become her way of feeling close to her children (two of whom now lived abroad). She would hold, caress and study each of the roses and they’d have conversations about ‘red’ rose, ‘pink’ rose and ‘yellow’ rose, with him weaving in details about their children’s lives to make the conversation more meaningful.

Sharing experiences remains one of my greatest passions. Telling my dad’s story and the stories of the many other people I’ve met who are ageing and/or living with dementia is the most powerful way I’ve found in 7+ years to illustrate the health and care experiences individuals and families are having. I’ve seen first-hand how illuminating and inspiring personal experiences are for professionals involved in care and support, and I personally believe it should be mandatory for all dementia training to include these experiences. For this World Alzheimer’s Month, if you’re looking for some inspiration beyond this blog hunt down one of the many blogs, books, films or recordings that people with dementia have made or contributed to and you’ll see why nothing beats hearing from those actually LIVING with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886
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It could be you

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at the reality of being an unpaid family carer.

I’ve blogged for Carers Week every year since D4Dementia began, and while I was looking back at the start of D4Dementia for the blog’s 7th birthday, I revisited the two blogs I published during Carers Week 2012.

‘The carers job description’ was the more hard-hitting of the two, highlighting the relentless and exhausting aspects of being an unpaid family carer, while ‘Be inspired, be very inspired’ was the complete opposite as I talked about how amazing carers are.

While many blog posts may be reactionary and news-led, these two stand the test of time with quotes that remain as true today as they were then. I began ‘The carers job description’ by saying:

“If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer?”

The reality of isolation, lack of support and having to fight systems every step of the way is a story I have heard countless times since - often, of course, from family carers whose loved ones have dementia, but also from numerous people in other caring roles including carers whose loved ones have different health conditions, sandwich carers and parent carers.

I’ve seen carers break down talking about the struggles they face, and asking simple questions like, “Why can’t this be easier?” and, “I have no idea what to do and no one to ask.” In a public arena, arguably one of the most powerful carer stories I have ever heard came from Sheila Wainwright, excerpts of which I shared in my 2013 blog, 'Caring for carers':

“Sheila told of the ‘Shear daily misery’ of their life, how ‘No one’ answered her questions, and that over the years ‘Many people came and went, and came and went’ but there was simply no continuity of support for her or her husband. Sheila admitted that she was, 'Planning how to end our lives before a call to the Admiral Nurse Dementia Helpline saved my life.’ Her husband eventually passed away in hospital after an agonising end to his life, with Sheila movingly recalling the actions of a nurse as her husband was finally at rest, ‘That sprig of flowers put on his chest when he died was one kindness I will never forget.’”

I went on to say in 'Caring for carers':

“It can never be acceptable that we wait until someone’s death before we show kindness to their carer who has valiantly stood by their side as, in Sheila’s words, her husband, ‘Screaming and snarled, pooed in the shower and pushed it down the drain, lost the ability to walk and talk, and went from 13 stone to just 7 stone when he passed away.’”

Sheila’s story has stayed with me ever since, and has been joined by stories from many other carers, past and present, who I’ve met in the months and years since I wrote ‘Be inspired, be very inspired’ but who that blog could easily have been written about, particularly when I said:

“There is something that touches your soul when you hear the individual stories of how people care for those they love the most.”

These personal accounts are incredibly hard-hitting, but what we all need to appreciate is that while carer’s stories shape our understanding and provide an immensely powerful narrative that we’ve seen countless times, not least in the recent BBC Panorama programmes ‘Crisis in Care – Who Cares?’ and ‘Crisis in Care – Who Pays?’, for the people living those lives they are a real, raw reality, not something to read or watch, agree with and then at best leave the issues they raise at the bottom of society’s ‘to do’ list. As I said in ‘Be inspired, be very inspired’:

“If you are caring for someone right now, don’t ever underestimate the amazing contribution you make to society. Anyone who does not recognise that has never walked in your shoes, but may well do so one day and will then see just what this unique role entails.”

As the thoughts of charities, businesses and organisations turn to carers again for Carers Week, which is themed this year around isolation, the stats are stark:

• One in three unpaid carers (32 per cent) looking after a loved one who is older, disabled or seriously ill has felt lonely or isolated because they are uncomfortable talking to friends about their caring role. 
• (32 per cent) say they feel socially isolated at work because of their caring responsibilities.
• (74%) feel their caring role isn't understood or valued by their community. An unwillingness to talk about caring has for many carers created a barrier to their inclusion at work, home and in public life.

(Data from https://www.carersweek.org/media-and-updates/item/487547-carers-week-2019-launch)

Add in the human emotions that lie behind those statistics and I think we can all agree that more must be done to support carers. The problem, of course, is that those who understand what being a carer really means have been saying as much for years. When this will result in actual concrete support services that aren’t a postcode lottery remains to be seen, but those who ignore this issue do so at their peril. 

There are currently 6.5 million people in the UK who are carers. Every day another 6,000 people take on a caring responsibility and there are predicted to be 9m carers by 2037. So, to quote a famous lottery slogan: “It could be you.”

Until next time...

You can follow me on Twitter: @bethyb1886
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Experiences of loss

With over 200 blogs on D4Dementia now, some of them approaching 7 years old next month, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at loss.

Losing my dad

One of my most popular and shared blogs on D4Dementia is ‘End-of-life care: A very personal story’. I wrote the blog less than two months after my dad had died, and with my emotions still very raw I began the blog by saying:

"Planting up my father’s grave recently, I found my mind wandering back to our last few days with him, painful in so many ways and yet hugely comforting as well. Nothing is more important to me than knowing that we spent all day every day with dad during that time, that we were with him at the very end, and that he had what I would describe as outstanding end-of-life care."

I’ve been back to plant up dad’s grave many times since I wrote that blog, most recently last week to give it some spring colour as we marked what would have been dad’s 92^nd birthday. That was the first time our daughter could really participate in the gardening, and my feelings watching her digging little holes and helping to arrange the plants are something I can’t quite find the words to describe. It’s the closest she will ever get to my dad, which is a huge sadness as I know my dad would have adored being a grandpa and he never got that chance. The emotions may not be as raw now, but dad’s physical absence from our lives means that there will always be a missing piece in our family jigsaw. 

Loss from a distance

Very sadly I’ve had further personal experience of loss recently as my father-in-law passed away in South Africa, just 15 days before the 7th anniversary of my own dad’s passing and having lived and died from the same type of dementia – vascular dementia. Experiencing bereavement from a distance, having not been there to support my in-laws, as well as supporting my other half as he comes to terms with the loss of his dad, is the strangest mix of emotions, and the timing in particular has brought back many memories of my own dad’s passing. 

Distant bereavement means that you don’t have all of the practicalities to attend to, and you don’t feel remotely useful. Life is expected to carry on, and yet it isn’t the same and won’t ever be. Our parents shape our lives and the people we are – losing a figure so influential in your life is like having the rug pulled out from under you, and seven years on from losing my dad I have realised that you can never replace that carpet of stability and wisdom. All you can do is celebrate all that person gave you, and how they’ve helped you to become the individual you are.

Losing a new life

In my work life I draw on the strengths my dad gave me a huge amount, especially when dealing with any topic that involves loss. There is no denying the need to talk about advanced care planning, palliative and end of life care, loss, grief and bereavement, but while my personal experiences positively influence me as a trainer and writer they can also be painful to revisit in many different ways. 

One particular example of recent work, albeit ghost-written so I can’t signpost you to it as the author, was around how life story work can bring up thoughts and the associated feelings of bereavement(s) an older person experienced when they were younger. One of the most powerful ways I illustrated this was by drawing on the experiences of a lady I knew in her 80’s, who had heartbreakingly recalled a miscarriage as a young 20-something woman. 

At the time I never imagined this would resonate with me, but having had a miscarriage at 10 weeks last month I now know that an experience like that changes you. Other women older than me have told me they’ve never forgotten how they felt at the loss of the life they’d had growing inside them, and all I can really say is that in terms of pregnancy it reminded me of the title of a blog I wrote in 2014, ‘A loss of innocence’.

A loss of innocence not because I didn’t know miscarriages can happen, indeed my own mother had one before having me and I know many other women who’ve had miscarriages amongst my circle of family and friends, but because I will never view pregnancy, should it ever happen for us again, in the same way. As I said in my ‘A loss of innocence’ blog:

“Life is not and will never be as it was, and unlike many aspects of our existence this is something that we have no control over.”

For that lady in her 80’s recalling a loss of new life 60 years ago, as real then as the day it happened, is proof that living with loss is a lifetime’s work. Despite dementia taking many of this lady’s memories, it had left that one perfectly intact and able to torment her if the right care and support wasn't in place to help her overcome reliving those experiences whenever she saw a pregnant lady or a baby, having never been able to have children herself.

I’ve come to realise that any loss changes you, and perhaps the most important message about loss is that you don’t forget, and that’s ok. You can’t erase loss from your life however it has touched you; all you can do is find ways to acknowledge your loss and to live with it.

Until next time...

You can follow me on Twitter: @bethyb1886
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What to do for 'the best'

Last year I wrote a popular blog post entitled ‘Five things I wish I'd known before my dad's dementia’. Point two was entitled ‘What to do for the best’ and said:

"The great problem when my dad was living with dementia is that I wasn't a researcher, or an observer of all things 'dementia'. I never Googled what other people's dad's who were living with dementia really enjoyed. Nor did I attend dementia groups, access social media extensively, or read dementia books or blogs (so the fact that you are reading this means you are one step ahead of where I was!). 

I learnt what worked for my dad eventually but it was often through trial and error, and when I think back so much time was wasted. For example, I would never have persevered with ensuring my dad had TV in his room: in hindsight I would have scrapped the TV on day one and replaced it with the CD player and music collection that brought infinitely more joy to his life. I’d have made the environmental changes that personalised dad’s room much quicker, and the life story work staff asked for my help with and I took ages to dig out photos and make the memory box, I’d have done that quicker too. 

We'd buy things, like CD's, for birthdays and Christmases thinking it was nice to space out the gifts. Big mistake. Dementia is terminal, you are 'on the clock' as it were. Get as many lovely things as you can afford and enjoy every single one of them as soon as possible so you have them for as long as possible. My dad was never into big birthday or Christmas celebrations, and looking back maybe he was onto something with that."

I often receive emails from family members outlining their situation and asking me what to do for 'the best', and my ‘Five things I wish I'd known before my dad's dementia’ post prompted a few more of those emails, so here are my thoughts on what to do for 'the best':

Don’t beat yourself up

Wanting to know what to do for ‘the best’ is a really common feeling that most of us have in relation to a variety of situations. A natural human instinct is to want to avoid getting things ‘wrong’, but when I was growing up my parents always said: “He who never made a mistake never made anything.” There is no such thing as the perfect way to support a loved one with dementia, so don’t beat yourself up.

'The best' in your situation is unique to your situation

Whenever anyone asks me what is for 'the best' in relation to their loved one with dementia my opening suggestion is always to remember that ‘the best’ in your situation will be unique to your situation. My best, your best and everyone else’s best is entirely individual to them. This phrase really underpins that: “When you’ve met one person with dementia, you’ve met one person with dementia.” Ultimately, there is no definitive rule book on what the best care and support looks like - I was guided more by instinct than knowledge, and sometimes that’s no bad thing.

Sometimes a desire to do our ‘best’ can lead to our worst

Reading the accounts of people living with dementia in the last few years has made me realise that as care partners we can unintentionally become very caught up in the desire to do our ‘best’, sometimes stifling the person with dementia, disabling or disempowering them, which is far from 'the best' for anyone but hard to recognise when we are living in the moment. I’ve only really learnt this lesson as a result of following the work of empowerment groups like DEEP and DAI, realising the 'I'm doing this for the best' trap is easy to fall into and one I fell into myself with my dad sometimes.

As Wendy Mitchell says in her book, 'Somebody I used to know':

"They were one of those typical couples, the ones where the wife takes the lead; she takes his coat from his arms, she folds it over, sits him down, checks on him - once, twice - then goes off to fetch a cup of tea. I see it a lot, wherever I go. I know they're only trying to help, so why does it always look to me as if these husbands - or wives - are so much more advanced in their disease than me, someone who has no one to fetch and carry for me, to finish my sentences, to decide that I can't even manage the small chores that are still very much physically and mentally possible."

Being the best YOU can be is enough

I was by my own admission far from perfect in supporting my dad, but I was the best I could be, and I’ve realised since dad's death that you can be no more than that. When dad was alive the decisions came thick and fast, from small things to big things and everything in-between. I would constantly wonder, “Is this for the best?” about everything from signing a consent form to deliberating about medication, or taking the ‘risk’ of supporting dad to eat when healthcare professionals questioned if he could cope with anything orally due to his dysphagia. Comparing yourself to others, as I’ve known some relatives to do, will only lead to feelings of failure, or the opposite - an exalted view of how great you are at supporting your loved one. Neither is helpful. This quote sums it up perfectly:

Coping with the feeling you haven’t done your 'best'

Sometimes I run information and knowledge session for the relatives of people who are supported by care providers. These often involve a lot of sharing of our individual stories, and sometimes become understandably very emotional for all of us. One of the biggest contributors to not feeling you are doing or have done 'the best' for your loved one is when professional care and support is needed. My view: asking for help doesn't mean you're a failure. We desperately need to move away from the rhetoric that being a family carer means doing everything for your loved one, alone, for the rest of their life, no matter what. Doing your 'best' should never be a byword for burning yourself out.

Until next time...

You can follow me on Twitter: @bethyb1886
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A celebration of what is possible

As another September brings World Alzheimer’s Month, there is always the temptation to write a blog that points out how much we still need to do to improve awareness, care and support for people who are living with dementia and their families and friends.

For this World Alzheimer’s Month, however, I have cause for celebration. Over 6 years ago I began D4Dementia to, “Provide support and advice to those faced with similar situations (to those we faced with my dad), inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.” My inspiration was to share some of the positive aspects of my dad’s life and for others to learn from them. As I wrote more posts, I also shared aspects of my dad’s care and support that weren’t good enough, again with the intention that others may learn something. As the years have gone by I’ve diversified from blogging to do more and more training and mentoring to make that mission real, and in September 2018 my educational work has achieved the quality mark of Skills for Care Endorsement.

For many people who already have endorsement or another accreditation this may seem routine, but for me it’s something I never imagined was possible. I’m not an academic, backed by a major educational institution. I’m a former carer to my dad, and everything I’ve done since he died has been based on our experiences - a regular family turned upside down by dementia.

I wanted to create a legacy for my dad that wasn’t about mourning his loss however keenly I still feel it, or about beating a drum of hate for the people who let him down so badly when he was at his most vulnerable. I wanted to create positive change - I felt passionately then, as I do now, that if I could help just one person living with dementia, or one family supporting a loved one with dementia, or one professional working in dementia care and support, to find the information and advice that they needed then I’d done something amazing.

I’ve since read and heard similar aspirations from so many other people affected by dementia, most notably recently from reading Wendy Mitchell’s phenomenal book, ‘Somebody I used to know’. The desire to help just one person, to scatter crumbs of hope and positivity, however small those crumbs might be and however uncertain you are of how far they might travel, gives those of us who’ve had any sort of experience of dementia a feeling that there is something good that can come out of a diagnosis and a reality that changes life forever, and in my dad’s case robbed us of him far earlier than we might otherwise have been.

Reflecting on my endorsement as a training provider, it isn’t just for me. It’s not just for my dad either, although I hope and believe that he would be very proud. It’s for every person who’s ever felt a passion to use their experiences of dementia, or any other health condition, to help others but have wondered if A) anyone would be interested in their experiences, and B) whether they have the courage or confidence to share them.

I think we are conditioned from an early age - thanks to the school system - to view education as something delivered by people with far more qualifications than us in institutions with a track record of producing learning that is intended to equip students for whatever life holds for them. Little value is placed on lived experience, which is why I always dismissed applying for any quality mark for my training as something unattainable. It's only thanks to the encouragement of my family that I made that first tentative enquiry.

I hope my experience of endorsement shows that lived experience is now being recognised for the value I’ve always believed it has. Since I began my training and mentoring work I've known from feedback - and most importantly results -  that what I was doing had immense merit and quality, but going through a rigorous process of proving that to an organisation like Skills for Care means that it isn’t just me saying what I do is good, or my lovely clients or colleagues writing me testimonials (which I’m extremely grateful for) - it’s an independent and highly-regarded organisation saying it.

More than me proving a point, however, I hope it encourages others to realise that personal experiences have the power to educate to a level that is worthy of accreditation. Earlier this year I read with immense interest about the training offered by York Minds and Voices with a course entitled: ‘A good life with dementia.’ This is a course, delivered by people living with dementia for people living with dementia. A simple but groundbreaking concept.

This course embodies the peer support element that I believe is absolutely vital in good post-diagnostic support, and I was fascinated to follow its progress. I very much hope that inspired by what York Minds and Voices did earlier this year, training courses like this will become the norm – created and delivered by people living with dementia, financially supported by health and social care organisations and commissioners, and ultimately with the chance to become accredited to show the world their true merit. There can be no greater educators about dementia, or any other health condition, than those living with it.

I am committed to including the experiences and voices of people living with dementia in my training, whether it’s through quotes, showing films, or I hope one day with more personal involvement from people living with dementia. And of course my dad’s experiences are interwoven throughout everything I do - you might think that 6+ years after his death they would have become irrelevant, but in many respects so little has meaningfully changed in care and support, attitudes and beliefs, experiences and outcomes.

My thanks go to all of my clients and colleagues who have supported my application for endorsement, to Skills for Care for considering and ultimately endorsing my application, and to everyone who reads this blog, follows me on social media or has championed my work. Most of all though, I thank every person I’ve met living with dementia and their family members who have taught me something about their lived experience, and of course to my dad. Those last 19 years of his life featured some of the toughest challenges I have ever - and probably will ever – face, but I learnt more than I ever imagined possible, and the privilege of keeping my dad’s legacy alive by sharing those lessons is something I hold very dear.

Until next time...

You can follow me on Twitter: @bethyb1886
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Kathy’s story - Living with a learning disability and dementia

Imagine reaching your 40’s or 50’s having lived your whole life in the shadows of discrimination, exclusion, social stigma and poor treatment within many health and social care services... and then developing dementia. You’re younger than the majority of people who live with dementia and your dementia is likely (either through our perceptions or the circumstances of your health) to progress more rapidly. You are now part of one of the most seldom heard groups in society** - People living with a learning disability and dementia.

This is an issue close to my heart: My longest serving consultancy client of nearly 5 years are learning disability provider MacIntyre. I count many of the amazing people they support and their awesome staff as both colleagues and friends, but it wasn’t MacIntyre who originally introduced me to what life can be like when you’re a younger person with a learning disability and dementia.

On the day my dad moved into the care home that he would go on to spend over 8 years in, we met Kathy*. She was a bubbly, smiley, caring lady, clearly much younger than my dad and every other resident in the care home. She loved to ask questions and talk to anyone who would spend time with her.

Kathy wasn’t living with Down’s Syndrome, which is the learning disability most people associate with the development of Alzheimer’s Disease. Her only visitor was her sister, an older lady, devoted to her younger sibling and fiercely protective of her. Kathy’s sister was one of the most active and vocal contributors to resident’s meetings, making her a firm ally of ours. I’m sure she told me more about the disabilities and health issues that had dominated Kathy’s earlier life on one of our numerous chats over a cuppa, but I don’t recall the details.

Kathy’s room was in the corner at the end of the corridor, almost as if she was somehow set apart from the other residents - I never knew if that was deliberate or not. Kathy spent a lot of time in her room, making multiple clothing changes in a day and immersed with her toys and dolls. It was one of the most cosy rooms in the care home with every spare space filled, including having a bird feeder outside and plants on the windowsill that Kathy tended every day.

It’s been over 6 years since my dad died, but I still remember Kathy. She had a sparkle, but also a sadness. To be in a care home, surrounded by people significantly older than her, with staff who were mostly wonderful but without much time to spend with her (and the time they did spend with her was very much about tasks and functions) didn’t seem like the right environment for Kathy. She needed interaction, occupation (as did everyone!) and to socialise with her peers. 

Without her sister Kathy’s life would have been almost nondescript. Just another learning disability statistic, put into an aged care home that in the local area had a reputation for taking people other care homes wouldn’t take. Kathy’s sister was the person who had filled Kathy’s room with the things she loved, bought the clothes Kathy loved to keep changing into and the foodie treats that brightened up the long days.

Granted, the care home was better than Kathy living in one of the infamous long-stay hospitals, but that is a comparison that only looks favourable because long-stay hospitals really are the lowest dominator in terms of care and support provision for people with a learning disability. Back when my dad was alive I thought that was all Kathy could hope for, then in 2013 I began working with MacIntyre and was introduced to supported living, lifelong learning, person-centred approaches, Great Interactions, and the gold-standard of involving people in their care and support. The rest, as they say, is history.

I wish Kathy had known MacIntyre. I wish every person living with a learning disability, and especially people with LD who are developing dementia, could know MacIntyre. I’ll admit I’m bias; I’ve been heavily involved in their dementia work so of course I’m a huge supporter, but it really is groundbreaking as I wrote about here: ‘Watch And Learn: People With Learning Disabilities Leading The Way’ and here: ‘A Marriage Of Learning Disabilities And Dementia’.

But why does it matter you might wonder? Surely people like Kathy are few and far between? In fact, quite the opposite is true. People with a learning disability are living longer than ever before, but have a greater chance of developing dementia, with the link between Down’s Syndrome and Alzheimer’s Disease that I mentioned earlier being the biggest-known risk factor. Research and knowledge about LD and dementia remains patchy though, in common with so much about how as a society we view the importance of people with learning disabilities within our communities. 

Things are changing and heading in a more positive direction, but it shames us all that statistics like those calculated by the LeDeR (Learning Disabilities Mortality Review) programme tell us that a man with a learning disability dies 23 years younger than men in the general population, and that a woman with a learning disability dies 29 years younger than women in the general population. The median (when collecting data, this is the middle value, obtained from separating the higher half of the data sample from the lower half) age of death for a man with LD is 59 and for a woman is 56.

Those ages of course mean that if a person with a learning disability is going to develop dementia the majority will do so as a younger person, and in addition will likely face barriers in:

• Identifying their dementia (including diagnostic overshadowing, where a person’s dementia symptoms are written off as learning disability ‘behaviours’)
• Receiving a timely diagnosis (including difficulty accessing memory clinics and other specialist dementia services).
• Being offered treatments (including non-pharmacological interventions, like music therapy and life story work, which a person with a learning disability may never experience).
• Accessing age-appropriate, specialised care and support. 

I don’t know what happened to Kathy. My dad left the care home they shared on a cold March night by ambulance with an aspiration pneumonia that he never recovered from. He became a subject of safeguarding, and we went to clear his room shortly afterwards, the last time I saw Kathy. Her health, like my dad’s and everyone else’s, had deteriorated, she’d been hospitalised for bowel blockages and other stomach related issues, was immobile, and much of her spirit and communication abilities had become lost in the constant upheavals that characterised her life. The care home went on to be rated inadequate by CQC and has now closed.

Kathy had a life, but not the life she could or should have had, something far too many people with a learning disability experience. I’ve seen both sides of how we support people with a learning disability and dementia, and my appeal to anyone designing care and support services for our ageing learning disability population is to utalise best practice - it’s out there, shared by MacIntyre and others for all to learn from. It’s replicable, it’s achievable, and most of all it’s inspirational, because if we can get support for a person with a learning disability and dementia right, we can improve how everyone lives with dementia.

Until next time...

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*Name changed to protect identity.

**September 2017 saw the launch of the Dementia Action Alliance's (DAA) 'From Seldom Heard to Seen and Heard' Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I'm a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilising my extensive knowledge and experience of working with people who have a learning disability and dementia. I wrote about BAME communities in my October 2017 blog, and people who are living in rural communities in my March 2018 blog.