Finding love again

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, 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 love.

I finished my January 2019 blog with a quote that talked about how a person who is struggling to express themselves, perhaps because of their dementia, is:

“Ultimately looking for understanding, appreciation and love.”

Of course that could be said for all of us regardless of the circumstances surrounding our health, but a diagnosis of dementia brings the importance of love and expressing love into an even sharper focus, as I described in my 2014 blog, ‘Amour’:

“Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.”

But that isn’t to say it’s always easy to express love or feel love when dementia is part of life. Last year I met a lady who very candidly spoke about her relationship with her mother, who is living with dementia, saying that she found it very hard to love her mother now.

Many people might harshly judge this lady for a comment like that, but on further exploration it was clear it was a remark that came from a place of immense love and a longing for that love to be reciprocated. The lady felt bereft because of her perception that her mother didn’t love her, but when we reflected on her time with her mother, it became clear that she was missing very subtle signs of her mother’s love, purely because they weren’t the obvious expressions of it that she’d been used to her whole life.

This lady viewed the changes in her mother only through a negative lens. She spoke about her mother’s repetitive speech, her lack of interest in previous hobbies, how she no longer wanted to eat foods she’d always enjoyed and how she constantly walked, making her daughter feel that she just wanted to get away from her.

But we found a flip side to this. The repetitive speech was an opportunity for the lady to reinforce the information her mother needed, and that could come from a place of love if she realised the trust her mother was placing in her to provide that information in a calm and consistent way.

The lack of enthusiasm for previous hobbies could be interpreted as an opportunity to try new things, finding common interests that they could enjoy together, and likewise with trying new foods. We also talked about walking, and the joy that could be found in walking together, exploring the environment and taking notice of the details around them, something that is known to be very good for improving wellbeing.

Like many people, this daughter saw her mother’s walking through the negative concept of wandering (not a phrase I like or agree with), which is a topic I wrote about in my 2012 blog ‘Going Places’:

“Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in. It may be a world from their childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.” 

For this lady’s mother, walking was something she needed and wanted to do, not something to be in any way suppressed as her daughter thought it perhaps should be. Supporting someone you love to do something that they love is in itself an act of love. Not one with big declarations or fancy ribbons attached, but one that is far more meaningful when you consider that many people who are living with dementia and want to do things like walking are prevented, sometimes forcibly, from doing so.

I think, and hope, that I helped this lady to find a different perspective to the one of desolation and isolation that she was feeling. Accepting that dementia sometimes changes our perception of loving and being loved is a tough realisation, but it is one that provides a degree of peace, and sometimes even hope – hope that you can still have those moments of connection with the person you love, however fleeting those moments may be, and feel that surge of emotion that only love can give you.

As I said in my Amour blog:

“During those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through.”

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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The forgotten workforce

In all of the meetings I’ve attended about unpaid carers in the 6+ years since my own caring role for my dad ended, the most common themes have been: A) How do we identify carers? And B) How do we assess carer’s needs? The end result of the latter is generally to offer respite, somewhere along the line a leaflet (or a whole pack of leaflets) might be given, and possibly there'll be some signposting to a charity who are running a local carers group. Box ticked. Job done.

What a contrast to the paid care and support workforce, who in England need to complete the Care Certificate (which is comprised of 15 standards) and regularly update themselves in mandatory training topics such as health and safety, infection control and manual handling. In addition, all good care providers offering specialist support for people with dementia, learning disabilities and other complex conditions will provide in-depth and on-going training to support their staff. Only last month for Dementia Awareness Week, I blogged about the training and mentoring I provide to health and social care staff.

Two roles, one huge discrepancy

With this huge discrepancy in the levels of training and support provided, you might think that paid care and support workers and unpaid family carers (or you may prefer another term like ‘care partner’, ‘caregiver’ or ‘supporter’ - I know from everything I’ve done to promote appropriate dementia language that words matter) have very different roles, but not so. Unpaid carers/care partners frequently undertake all of the elements of care and support that paid care and support workers do, but mostly in highly unsuitable domestic homes that are ill-equipped to support a person with high dependency needs, and with the additional and extremely complex element of the emotional ties that they have to the person who needs care and support.

An estimated 6.5 million people in the UK do this for a family member or friend who has a disability, illness, mental health problem or who needs additional help as they age. Imagine if we had 6.5 million paid care and support staff working for home care agencies, care homes and the like who had never been trained in any aspect of their role and were relying on guidance from a leaflet or their own internet research (for free online courses such as these). There would be uproar. As it is many professionals don’t receive education to the extent required for their role when they’ve had training!

I know that my blog is read my numerous unpaid carers/care partners who have contacted me either looking for information or advice, or thanking me for what they have found within my 200+ posts. A few more may find my blog in the days ahead, as its UK Carers Week 2018, and whilst I’m very happy that I can provide help and support, it is a damming indictment that in 2018 there is no formal training programme for this 6.5 million strong forgotten workforce.

It seems that the discrepancies between paid and unpaid caring are considered ok because unpaid caring happens behind private front doors, and if you’ve no idea what you’re doing no one cares until a crisis occurs and you rock up at A&E.

Education – the key to remaining healthy and connected

The theme of this year’s Carers Week is how we enable carers/care partners to remain healthy and connected. For me, carer breakdown has always been a huge topic - I’ve lost count of the times I’ve said that a person with dementia is most likely to end up utilizing professional care services when immobility or incontinence leave their carer/care partner unable to cope. 

Thinking about immobility for a moment, I’m reminded of a story I was told about a lady who frequently visited a relative in a care home with her husband. Her husband had dementia, and was gradually losing his mobility. His wife was struggling to cope with supporting him to get in and out of the car – care staff spotted this one day and invited the lady to join their next manual handling training. Equipped with that knowledge, the wife was able to safely support her husband and protect her body from the common strains that can leave a carer/care partner unable to provide care and support.

Regarding incontinence, I often find myself reflecting on the film ‘Still Alice’, when Alice goes to her holiday home with her husband and is caught short trying to find the toilet. Alice and her husband are immensely distressed. From that moment, the seed that goes on to becoming urinary incontinence and potentially double incontinence is sown. Yet with some support to create an enabling environment, Alice can continue to find the toilet independently and remain continent for longer.

These are just two examples of very small, very simple interventions that can support families to do what most of us would want to do – help our loved one live a good life with dementia or any other condition that they are diagnosed with. But it’s utterly bonkers to think that any family can do that without any education or knowledge - lifelong learning, rooted in the personal experiences of former carers/care partners, for the duration of a carer/care partner’s life is essential. Even when a family member comes from a professional health or care background they often struggle, simply because care and support in a domestic home, when your shifts are 24/7, is about navigating numerous relentless difficulties without anyone to support you.

Knowledge is permanent respite from inexperience

The idea that a family carer/care partner just needs some ‘respite’ to get back on track is, I think, very insulting. Many families don’t want their loved one to go into a care home, or any other respite ‘solution’ temporarily. It’s not a ‘holiday’ for either person – just an upheaval fraught with worry, and a fear that one day the person will go into residential care and not be able to return home. I know that feeling all too well – when my dad went into hospital after we found him collapsed on the floor at home he never entered his front door again.

I’m sure that with the Carers Week theme of keeping carers/care partners healthy and connected there will be a lot of focus on areas like carer health checks, drop in clinics, social support groups and the like. But I know from my experiences with my dad that there is no substitute for knowledge. If there was, we wouldn’t set so much store by sending our children to school for the best part of 13 years of their young lives (and often far longer in higher education). And if the knowledge I’d gained as a carer/care partner was superfluous and insignificant, I wouldn’t have started this blog to share our experiences to help other families (and D4Dementia wouldn’t be so widely read).

Until next time...

You can follow me on Twitter: @bethyb1886
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Action for dementia care and support - Being person and relationship centred

Welcome to the second of my five blog posts for UK Dementia Action Week 2018 (DAW2018). 

This year Dementia Awareness Week is renamed Dementia Action Week to reflect the need for action for people affected by dementia rather than only focusing on awareness.

In this spirit, I’m sharing the ‘Key Messages’ from my dementia care and support training modules. The training, devised entirely by me and heavily based on personal experiences from my dad's life with dementia and the many other people I've met who are living with dementia, is something I've delivered to numerous frontline social care staff as a standalone learning experience or to supplement the bespoke training and mentoring that I provide to individual services and organisations.

I've never shared these materials online before, and I'm hoping by doing so now I will inspire positive action amongst health and social care providers who are supporting people living with dementia and their families.

Day 2: Being person and relationship centred

My second module is called ‘Person and relationship centred care and support' and covers: 

• The foundations of person-centred care and support
• Individuality, choice and control
• Understanding the person and their preferences, qualities, needs, abilities, interests and aspirations
• Individualising support
• Wellbeing
• The foundations of relationship-centred care and support
• Working with families
• Person and relationship centred care and support as a therapy to alleviate distress
• Key staff skills

It concludes with:

For me these key messages, whilst very basic to many of us, are something every person providing care and support for anyone affected by dementia should live and breathe by.

Of course, there is so much more to what is in a 3-hour training session than I could convey in a short blog, but to give you a flavour of what this is like in 'real life' the module is the start of opening up conversations about what person and relationship centred care and support is, and how staff can provide it for the people they are currently supporting. 

Everything I do asks learners to put themselves into the shoes of the person, so in this module learners think about the preferences, qualities, needs, abilities, interests and aspirations of a person they support, and they break down how they would provide person-centred care and support in 'real life' scenarios.

**ACTION FOR HEALTH AND SOCIAL CARE PROVIDERS**

PLEASE PRINT THE KEY MESSAGES IMAGE ABOVE AND PIN IT ONTO A NOTICEBOARD THAT ALL OF YOUR STAFF CAN SEE.

For more information on my training and mentoring consultancy work, please see my website: http://www.bethbritton.com.

Tomorrow (23 May 2018) I will look at 'Communication and dementia'.

Until then...

You can follow me on Twitter: @bethyb1886
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Living with dementia in a rural community

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 utilizing 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 for this post, I want to think about the challenges for people with dementia who are living in rural communities.

It’s a topic close to my heart - I’ve always lived in rural areas, and currently live over 11 miles from my nearest town. My dad was a farmer with a passion for the countryside, and he fostered my love of rural life, nature and the environment from an early age.

But whilst I love rural living, I’m also well aware that it isn’t without its challenges. Although rural communities can often be amazing at pulling together and looking after their own, there is no doubt that many people can also be very isolated and lonely if they become ‘cut off’ or reclusive.

For a person developing dementia, particularly if they live alone, that can lead to numerous problems. My dad went ten years without a diagnosis, and whilst I would be the first to admit that there were many factors that contributed to that timescale, I do wonder if living miles from healthcare services made him someone who was ‘out of sight and out of mind’.

Dad’s local town was 9 miles away, and although he was on a bus route the services weren’t as frequent as in urban areas. During his 10 years without a diagnosis dad stopped driving which made him even more dependent, not only on public transport but on his family too. I didn’t learn to drive until after dad’s diagnosis, by which time he was living in a care home, so it wasn’t like I was much use on the transport front either.

Had dad received a timely diagnosis, and had services existed back then that he or I had wanted to access (groups and therapies for dad, or for me, carers services), our involvement would have been dependent upon us having suitable transport that got us to these services at the right time. For many people living in rural communities, these are sometimes problems that prove insurmountable.

Reflecting now, I also see how lucky we were that dad didn’t get into serious difficulties living surrounded by fields (the garden backed onto open farmland), ditches and streams whilst he was developing dementia. The countryside was very picturesque, but had dad decided to go out walking and then become unable to find his way home, it’s quite possible no one would have seen him, let alone found him, potentially until it was too late.

Urban areas tend to have more landmarks, in terms of buildings and points of interest. There are also many more CCTV cameras and members of the public who might see someone with dementia who has got lost whilst walking. Finding a person with dementia who is confused and disorientated in that environment is possibly easier than in the countryside.

My dad was living on the edge of a small village, so we weren’t completely cut off from civilisation, but many people living in rural areas may be far more isolated down a dirt track without another house in sight. If bad weather then hits the potential for difficulties or disasters becomes considerably greater.

Of course it isn’t just about hazards and problems. Many people living in rural areas benefit from cleaner air, more open spaces and opportunities to absorb themselves in outdoor pursuits that improve their wellbeing. Even being able to sit by a window and look out onto open fields and watch the animals and birds, enjoying how the changing seasons alter the natural landscape, is something many people in urban areas may crave.

Isolation and loneliness isn’t just reserved for individuals living in the countryside either. It’s often said that you can be surrounded by people in a town or city and yet still be the loneliest person in the world. Just because you have countless neighbours all around you, doesn’t mean anyone will actually knock on your door.

But I do firmly believe that people living with dementia in rural locations face some specific challenges, particularly around accessing services and support and remaining safe and well (although not resorting to being risk adverse), that require all of us to consider how we are reaching out to these individuals and communities and making our services and support accessible. Yes, some dementia friendly community work has happened in rural areas, but certainly not in all of them, or even the majority.

Where I live is currently undertaking a neighbourhood development plan survey, and one of the areas I’ve highlighted in the lack of retirement and extra care housing, and residential care services, for our ageing population. People who live in rural areas have every right to reside in the location of their choosing - they shouldn’t be forced to move to an urban area if they don’t want to just because their needs are changing and there is a lack of services and support in their locality.

Of course there are always challenges to find staff, and run health, social care and third sector services in rural areas that are sufficiently used that they remain viable, but as a country we need to become much more innovative about supporting people in every community, regardless of how rural they are, to lead the life they want, including when they are living with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886
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Home sweet home

I seem to have found myself quoting a particular statistic so much in the last few weeks that it is now imprinted in my mind:

Alzheimer’s Society: Fix Dementia Care Homecare report 

I include this stat in my dementia training for health and social care professionals, which might seem strange since many social care staff that I train and mentor are working in care home environments, but this one statistical sentence opens up so many extremely interesting discussions about the role of ‘home’ in our lives, the links to independence, choice and control, and the feelings and emotions evoked by ‘home’.

The role of ‘home’ in our lives

Why such an overwhelming number of people would want to remain at home is unsurprising. Our homes are meant to be our place of safety and security, places we personalise, feel comfortable, where we can truly be ourselves and do as we want.

So what about the 15% of people who don’t necessarily want to remain at home - do they not have all of those feelings about their home? They may well do, but those feelings are possibly tempered by concerns about family members providing care and support, or the person is living alone and considering a communal home due to fears about isolation and loneliness.

‘Home’ is a really interesting concept in dementia care. As a person’s dementia develops, the role of the person’s home can change: The person may form an attachment to their home that becomes overwhelming to the point that they won’t venture out, if the person does venture out they may not be able to find their way home again (even if they’ve lived in the same neighbourhood for many years), and sometimes home can become an alien place that the person no longer recognises, even though nothing has changed in numerous years.

Home, in the person’s mind, may become somewhere they lived in their childhood or earlier life, which could lead the person to go out to try and find that home again. “Please take me home,” may also be a frequently used phrase if the person is somewhere they don’t recognise, like a hospital, care home, or their own home that simply doesn’t feel like theirs any longer.

When ‘home’ is the problem

Often we assume that so long as the person remains at home, being part of that 85%, they will cope fairly well with their dementia. Yet the person’s home, for all its perceived familiarity and comfort, can sometimes unwittingly contribute to symptoms like disorientation and frustration.

Environmental changes are rarely high on the priority list when families are caught up in thinking about the person’s immediate care and support needs. Sadly, the knock-on effect of this lack of environmental awareness is family members, friends or neighbours gradually doing more and more for the person (and/or a crisis occurring), which can negatively impact upon those providing unpaid care and is even worse for the person with dementia.

In that utopian world where everyone has good post-diagnostic support - which I would argue is a human right - the person and their support network would be assisted to look at how the home is working for the person, with the end result being the creation of a more enabling environment (using the world-leading research from the University of Stirling as a benchmark), where the person’s independence could be preserved for as long as possible and their need for care and support reduced.

The home might be modified to include:

•   Word and picture signage to help the person navigate around their home, and instructions to enable the person to operate household items (or even just to be able to make THEIR guests a cup of tea rather than the guests taking over and doing it themselves).

•   Clear door and drawer fronts so that the person can see what is inside a cupboard or drawer.

•   Colour contrasts across the home but particularly in the bathroom so everything isn’t white.

•   A layout that reflects how the person currently moves around their home, and changes as the person’s needs change - for example, you might remove internal doors to avoid the appearance of barriers or the fear of what is behind a door when it's shut.

•   Lighting that supports understanding of daytime (especially when it’s really dull outside) and nighttime.

•   Technology that helps to support the person’s independence - a dementia clock, for example, could help the person know what the day/time is so that they can orientate themselves.

•   Accessible and enjoyable outside space - for many people, this aspect of ‘home’ is more important than the building.

When ‘home’ moves

So what happens if there is no option and ‘home’ has to change? Care homes are often seen as prisons, but your own home can equally become a place of confinement, which has led me firmly to the belief that what imprisons people with dementia isn’t necessarily buildings, but the attitudes of those around them.

That really gets to the heart of why I talk about that Alzheimer’s Society statistic so much. I want staff to be challenged to think about what home really means for each person they are supporting, and to think about anything and everything that we can do to make the person’s current circumstances, which may not be of their choosing (my dad certainly wouldn’t have chosen to go into a care home) the very best they can be.

This can happen in a variety of different ways, but broadly speaking it’s about maximising the person’s choice and control all day every day, promoting and nurturing their independence, understanding and really embracing the person’s life story in a myriad of guises, and perhaps most significantly of all, validating the person’s sense of what their home is, why it’s important to them, and getting as close as possible to providing the happy feelings they associate with their concept of home.

The ultimate interpretation of ‘home’

That last point is vital, because for everything that I’ve said about the building and contents that we call ‘home’, it’s the feelings and emotions that come from the people a home is shared with (a childhood with parents and maybe siblings, a young adult life as a newlywed, or the home where a person brought up their children) that make up the ‘sweetness’ in the title of this blog.

In those bygone days the building itself wasn’t necessarily the safety and security, that came from the person’s mum and dad, husband or wife. The comfort came from the cuddles and love that was shared. The fun came from the laughter and mess of a young family. The personalisation came from choosing furnishings and decorating as a young couple, and the freedom to be ourselves came from being completely at ease with those the home was shared with.

Whilst that ‘sweetness’ may be associated with many years ago, we can ensure it is never airbrushed out of the person’s life today. After all, would you want your ‘home’ lost forever?

Until next time...

You can follow me on Twitter: @bethyb1886

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The failure of post-diagnosis support

It’s not often that the content of TV programmes stays with me, but the recent BBC ‘Hospital’ series, following the fortunes of patients and staff at Imperial Trust’s hospitals in London, and ‘Granddad, dementia and me’ that I wrote about last month, both fall into that category.

Documentaries can teach us a lot, and even allowing for the selective nature of TV editing and the luxury of being a passive viewer rather than a stressed subject with a camera pointing at you, I feel it’s important that the learning from these two programmes isn’t lost.

The third episode of ‘Hospital’ featured two gentlemen living with dementia. Firstly we were introduced to Carl:

Narrator: “75-year-old Carl has dementia. His family brought him to A&E after he became aggressive at home. Yesterday morning he walked out of the hospital and was missing for 13 hours. The police found him wandering the streets alone and brought him back to A&E.”

Dr Barbara Cleaver, Emergency Medicine Consultant: “Three people to look after him at the moment including security because he is in an unfamiliar environment, it’s noisy, it’s bright, there’s lots going on. I suspect that’s really playing into his underlying diagnosis and making things much worse for him.”

Narrator: “For his own safety, Carl is being held in room Q, the space reserved for psychiatric patients.”

My alternative commentary would be:

“Carl, a gentleman living with dementia, was missing his wife who for her own health needed a break from 24/7 unsupported caring. Carl, confused and frustrated that he couldn’t find his wife, lashed out at those around him through no fault of his own, and without the skills and support they needed, family members took Carl to a place they thought he would be safe. Carl, however, became disorientated in this alien environment and went to look for his wife for reassurance and familiarity.”

Later, we were introduced to Stanley:

Narrator: “85-year-old Stanley has vascular dementia. This is his 4th admission in three months. Around 25% medical patients treated annually by the Trust have dementia. They are accommodated in a specialist ward until their social care can be arranged.”

My alternative commentary would be:

“Stanley, poorly supported in the community, has had repeated inpatient stays. At present Stanley does not require acute medical treatment, and would undoubtedly have lived far better with his dementia had his family and social care been properly resourced to support Stanley from his diagnosis onwards.”

Were Carl and Stanley featured because their stories are somehow usual? Sadly I suspect quite the opposite. Carl and Stanley are the norm. The failure in post-diagnosis support for people living with dementia and their families is something I have written about countless times. Not only is it a disgrace that families end up in the situations faced by Carl and Stanley, it is also a complete false economy.

My dad was diagnosed 14 years ago. Since then we’ve had numerous dementia-related initiatives from different governments and significant investment into dementia education for healthcare professionals via Health Education England. And yet we still have:

·       People attending A&E because it’s the only place guaranteed to ‘do’ something for them when their family can’t cope with ‘aggression’ or the person has been found ‘wandering’ (not my choice of language)

·       People with dementia being placed in rooms intended for psychiatric patients (that are not remotely dementia friendly)

·       Medical and security staff seemingly untrained in supporting a person with dementia (and loads of stigmatizing language)

·       People remaining stuck in hospital because care packages are so difficult to arrange

·       Family carers at their wits end, wanting to care for their loved one but utterly unsupported

·       No signs of dementia friendly environments (in people's own homes or health/social care facilities)

 

·       No mention of some of the good work that has been done to help people in hospital, like 'This is me' and John's Campaign.

Add in what we saw in ‘Granddad, dementia and me’ where the gentleman featured who was living with dementia, Tom, was drugged and sectioned, and overall in both programmes precious little sign of any choice, control, empowerment, peer support, occupation or activity, life story work and other non-pharmacological treatments, positive behaviour support or, frankly, anything I would be proud of (beyond the outcome shown in Tom story) and I honestly question how much REAL progress has been made in the last 14 years.

By the time a person attends A&E, there have potentially been numerous red-flags that the family needed support. A dementia diagnosis in itself is the first of these. Once things get so out of control that the person is in hospital (which is one of the worst possible environments for a person with dementia - it will only increase the person's confusion and disorientation making them upset and/or angry), the effect on everyone involved isn’t favourable.

Some simple preventative advice and support could at best avoid, or at least significantly delay, a person ever ending up in a crisis situation. Why do we not educate families, at diagnosis and continually thereafter, about (in no particular order):

·       Making their home dementia friendly

·       Accessing peer support and empowerment

·       Occupation and activity - The myriad of different options to keep busy and how to access them

·       Collating and using life stories and other non-pharmacological therapies to support a person experiencing changed behaviour

·       Training: For the person with dementia and anyone in the family unit who wants it. Knowledge is power for many people. Knowing what is happening in the person’s brain, how those changes could affect the person and ways of providing optimal care and support (including self-care for the person with dementia)

·        Carer resilience - Ways of coping, identifying when you aren’t coping and sources of support when you aren’t coping (that actually exist and respond)

Instead, as episode three of ‘Hospital’ concluded, we learnt that Carl was now being cared for in an acute mental health unit and visited daily by his wife, and Stanley was settling in well to his care home. Would either of these gentlemen have chosen these two places of residence? I doubt it. And from the perspective of the tax payer, both are very expensive options (Stanley’s care home costs £1700 a week, plus because of his ‘complex needs’, an additional £2300 for one-to-one care. It is funded by NHS Continuing Healthcare. We never learn what Carl’s acute mental health bed costs).

Worst of all though, is the cost in personal anguish for these two gentleman and their families. We’ve only very briefly dipped into their stories, but they represent examples being replicated every day of how a diagnosis of dementia can needlessly lead to lives unravelling, all for the want of a holistic, long-term package of what is comparatively low-level post-diagnosis support.

 

Ask yourself: For a country aiming to be the best place in the world for people with dementia to live, is that the best we can do?

Until next time...

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