More than (Dementia) Friends

There’s not many times I look over the Border and think ‘I wish we had that’.  So I was delighted when Dementia Friends launched in Scotland and even happier to get my badge. Already a great success, Dementia Friends is a wonderful resource and a very quick and easy way of helping folk find out more about dementia; a boon for our aspiring Dementia Friendly Communities.

But it’s just a start, we need more.

In the world of paid caring, they already have quite a developed approach to using people to make change happen. Health and social care services staff have a Dementia Champions Programme which supports people to act as change agents. There are also Dementia Ambassadors who help spread knowledge and understanding about dementia.

When I read about these schemes I wanted to help, after all, walking alongside our loved ones with dementia gives us a very keen appreciation of the importance of respect and understanding amongst the paid workforce as well as the community dimension. We’ve got concrete experience of what makes a difference and are a powerful force for change. We can tell you in words of one syllable why a smile matters.

I was amazed to find that the scheme doesn’t include unpaid carers, I can’t be a champion or ambassador. I was gobsmacked. They should biting our hands off. In the words of the late great Ian Dury, what a waste.

A few e mails and I soon found people who got it and  I was introduced to the Equal Partners in Care ( EPIC) programme. It’s all about helping paid staff in health and social care settings work more closely and effectively with carers.

A short while later, Val from my Mum’s care home (who’s a Dementia Ambassador),  Scott (Mum’s then key worker) and me were interviewed by Gill for EPIC. We each talked about how by working together Mum got great care, I was happy and Val and Scott loved their jobs. It’s just better for everyone in every way.

It felt like a celebration and a chance to say how much we value each other.  Like when Mum gets upset when I leave, Scott comes over and says ‘Goodness gracious me!’ Mum giggles and says ‘Great balls of fire!’ And the pair of them, and everyone else in earshot, beam. Mum sees his smiling face, feels at home and waves me off quite happily. I leave knowing Mum is happy and safe. I never leave with that horrible guilt and worry about what happens when the door closes behind me. I don’t want anyone to leave a loved one like that.

I couldn’t do their job, but I am so glad people like Val and the other staff are round to help me and Mum through. They walk beside us and I can’t begin to explain how that helps.

It’s so important that the voices and lived experiences of people affected by dementia are part of the change process in health settings not just in the community. Friends are great, but we also need powerful Ambassadors and Champions; a growing number of people living with dementia across Scotland want to have their say and we all need to be included.  We are an important part of the change process. Most people who live with dementia – before or after a diagnosis, unpaid carer or family member – are in a community. People in residential care and hospitals are still part of our communities. The paid carers of the future and people who might get dementia in the future are in our communities, in schools, jobs, shops. We have to be a more powerful part of the equation.

The world needs to change too and we need to do it together.

So welcome to Scotland Dementia Friends. Now let’s have the rest. Please.

Cheers

Sue

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Tooth and claw

I’ve never met someone who lives with dementia who hasn’t got a horror story or two about teeth or toenails. These small, but potentially troublesome bits of body can be a veritable nightmare when you’re caring for someone with dementia and they are usually the bits that the health and care systems don’t want to touch with a bargepole. If anything exemplifies the need for health and social care integration and a focus on prevention it has to be teeth and toenails. If you’re eating your breakfast, look away now. No I won’t use photos but the mental images are just as bad.

Teeth. The very thought of teeth and dementia makes my jaws clench. A lifetime of 6 monthly dental visits, hygienists and daily brushing and flossing counted for nought when dementia set in. Mum not only forgot to brush her teeth, but the 15 minute care slots in the morning and bedtime were just not long enough to even begin to tackle teeth, how could they be?  Over a period of 3 or 4 years, those chocolate biscuits and the excessive amount of cake older people are fed all the time took their toll (see a future rant about cake and older years!).

By the time Mum got into the care home and a daily dental regime was put in place, the damage was well and truly done. Mum has had more fillings in these last few years than her whole life and then teeth started to fall out. She would be heart broken if she knew, she always brought us up to take care of our teeth. If we ever got to the stage of her needing all her teeth out (God forbid) false teeth are likely to be a problem – what if Mum can’t remember that she’s got false teeth and takes them out or gets a fright with them in?

It’s not vanity. An infection is a nightmare. It may get missed because people assume it’s just the dementia;  if you’re living independently at home with dementia taking antibiotics correctly is unworkable (even with carer visits). You have to watch carefully for signs of pain whilst your loved one is eating – not conducive to a relaxing meal. All too easily a minor bit of tooth decay becomes something serious with a hospital visit looming at the end of it.

Our local dentists are great and know well how to support Mum, they really do epitomise person centred care. They explain what’s going to happen and explain what they’re doing as they do it. They are calm and very very patient. But what if something hurts and Mum asks them to stop mid treatment and won’t let them continue? As I’ve got power of attorney I’d have to decide about restraint, of my Mum. It doesn’t feel right. Luckily Mum knows exactly what to do when she gets in the dentist’s chair and she’s very good at doing what she’s told – it’s become one of our family jokes. What’s it going to be like for my and future generations when dentists are dealing with complicated things like implants, root canals and bridges.

A lot of carers I speak to have found their own dental health suffers along with everything else, creating a whole new generation of problems now and for our older years. I too have had more tooth problems as a carer than all through the rest of my life.

Toenails are another bugbear. They’re not physically or psychologically like finger nails. They’re often quite hard to cut, hard to reach and are tucked away from sight in socks and shoes. Folk are often embarrassed about their feet and a bit wary of who gets close to them (sometimes with good reason!). Toenails are fiddly and feet can be sore or tickle, toenail cutting becomes a skilled job. Unnoticed toenails can grow and start causing all sorts of problems from falls to cellulitis – both of which happened to Mum more than once. Yet again, A&E looms with all it brings with it.

Luckily Mum and I have survived another dental nightmare, thank goodness. Fingers crossed that’s it for now.

Take care

Sue

Sue

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Suicide’s not painless

This is National Suicide Prevention Week and World Suicide Prevention Day was last Wednesday.  A good time to reflect on how lucky most of us are to have a sense of well being.  Many years ago I used to be a Samaritan. One of my best and closest friends had died suddenly (not suicide) and I determined to do something to mark her leaving the planet. It was like a personal marker in my life that meant I would never forget her or our friendship.

I’d always thought Samaritans were amazing, never thought i`’d be good enough, but I signed up, was lucky enough to be selected and started my (very excellent) training. I was a Samaritan for quite a while until I realised that I was starting to feel more like a caller than a Samaritan. Time to move on.

Samaritans, and I’m sure other services too, give something very precious, a safe place for people to speak about suicide, to say the words that they can’t say to loved ones, the words that rattle round inside the head making so much noise that everything else is drowned out.  People who phone or call in sometimes talk, sometimes cry and sometimes sit silently, often a mix of all of these. Some rant and scream. No one is judged, no one is pressurised to cheer up, no one’s told it’ll be okay. They can just be.

I heard a radio programme a few months ago about a clinic that ran on the same lines. A man who had been very suicidal spoke of the relief of being able to talk about his suicidal feelings and how that helped him move on, become happier and more positive about his life. The counsellors, doctors and all the rest walked alongside him and kept him company as he went on his journey. It worked.

In East Lothian, where I live, there were 13 suicides – 10 males, 3 females. 746 people in Scotland. 800,000 across the world killed themselves that year. All these numbers are probably underestimates.  Despite this, suicide is usually invisible, you do get some clues like flowers on railway crossings or the tops of cliffs. So poignant, so desperate.

I imagine what it must be like to throw yourself in front of a train and I can’t. I imagine what it must be like when someone you love takes their own life. I know people who have experienced that who struggle to cope with what’s happened. What must they feel when folk ‘tut tut’ on the train because there’s been a delay. I think about the train drivers and lorry drivers and all the people who are affected by suicide.

What to do? Talk about it. Ask people. Read the signs. Asking someone if they feel suicidal can be an immense relief, it won’t put ideas into their heads, it doesn’t work like that. Talking about feeling suicidal is one of the best ways to prevent it, to take the pressure off, to come alongside another human being who’s in a very dark place. It’s hard, but love is about going into scary places with the one you care about.

Help is available. GPs are an obvious support, and if the receptionist/doctor knows that suicide is involved people should be seen as soon as possible that day. If the GP is out of hours, call NHS24 on 111, they will do exactly the same as the GP. Samaritans 08457 90 90 90 or Breathing Space 0800 83 85 87 are there to help. You don’t have to speak, you don’t have to be alone.

At the end of National Suicide Prevention Week, please pause and think about how you can help. We all can make a difference, caring for each other, supporting each other. Simple, human.

Take good care

Sue

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To Boldly Go: Old Age – the final frontier?

We’ve been watching that programme about Boomers on the tv. I’m a Baby Boomer. When I was wee my comics were full of visions of a future in which we flew round in space ships, wore silver suits and had pills for breakfast. Up there above us were new worlds and different cultures, ripe for exploration just like in DR Who, Star Trek and Lost in Space. Those programmes fuelled our imaginations.

We watched rockets with dogs, chimps and humans fire off into the night sky and saw grainy pictures of people bouncing on the moon. Nothing was impossible, no barrier was unsurmountable, no feat of endeavour was unachievable.

That spirit of adventure and possibilities has stayed with us Boomers. We challenged gender roles, class barriers, racism and even gravity and now we’re challenging the ageing process. As my generation heads towards our later golden years, we’re still smashing through barriers and pushing the limits.  Rockstars are still rocking into their 70s.  Runners still running into their 90s and beyond. Punks are still cerise and spiky haired, no blue rinse and pinnie for us, we’re in short skirts, skinny jeans and high heels.

It’s a fabulous energy to live with, full of hope and derring do, so different to our parents’ lives in many ways.

I know I’m not alone in wondering how on earth  care services are going to cope with a whole load of white haired Boomers who are used to having choices, used to being independent. We expect to be able to go outside and see our friends. We expect to be physically and socially active, to listen to our choice in music, to watch what we want, to eat what we choose when we choose, to do things that some folk might think are a bit risky. It’s not just the numbers of us that needs some thought, we’re different in every which way. And we’re just the tip of the iceberg, generations after us will have their own expectations and foibles too. The whole care system is going to have to keep on changing and responding ad infinitum.

The challenge is massive but exhilarating. If services begin to cope with us boomers then they will be on a journey of change that will help generations to come. Self Directed Support will, when it’s had time to bed in, help give us choice and control of our later years, helping to match the diversity of people. Social media and digital technology will help us stay in touch with our friends and keep us entertained. We’ll expect to be up to date with news and digital developments. We’ll want to tune in and switch on.

Some of the bits of the complicated jigsaw are in pace already – thought nowhere near bedded in. Person centred approaches will help us be seen as unique individuals with aspirations and hopes regardless of our age. Self directed support will help us be consumers, clients and shapers of decisions that affect our lives, help us keep in control. Assets based working will help folk see we have lots to give, rich networks and skills and capabilities, we are not helps needy old folk. It’s going to talk time to get all the bits in place and working, and massive culture change. I can see it already in the Day Centres and my Mum’s Care Home. Activity Coordinators are now becoming the norm not an added luxury and my Mum is doing things now she’d never done before. But I worry about how we will tackle the inequalities between those of us who have a lifetime of being the ‘haves’ and those who have had a lifetime of being the ‘have nots’. We’ll be fighting injustice and inequality to the end I think.

Change rarely happens smoothly and us Boomers may well have to do a bit of complaining and protesting to get change to happen. We’re up for that! We’ve marched, boycotted, gone on strike and protested in many many ways to tell the world that things need to change, I can’t imagine we’ll stop yet – there’s life in the old Boomers yet!

So watch out as Bay Boomers tackle the (almost) final frontier – old age. As ever we’ll be going boldly.

Take Care

Sue

 

 

 

 

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An (accessible) room and a kettle

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It really doesn’t take very much to change the world. All you need is a cause, a room and a kettle and anything can happen.  It’s that simple; find a way to bring folk together in common cause and things will never be the same again.

It’s certainly working for us in East Lothian where we’ve now got 3 Dementia Friendly conversations up and running and more hoping to start off too. These conversations are changing things, though as befits a complex messy world, it’s not happening in a simple linear way!

As we get more experience, a pattern is emerging and I’m starting to relax and trust the process. First find your passion, something that really matters to you and you want to do something about. Then find people who care about the same issue and also want to make things happen. Share your dreams widely and freely. Talk to people in the streets, in shops, as you go about your daily business, if they’re interested you’ll soon tell. If it looks like a go-er, start planning; bring the wider community in, talk about what each individual can do to make things change. Find your room, make a date and get that kettle on.

images-2Those of us who truly believe that if we build it, they will come, know exactly what I’m talking about. This is about creating a community field of dreams. It starts with enthusiasm, passion, vision – they act like magnets, provide a coordinating principle, a centre of gravity – pick you imagery to suit.

At first it can seem a bit disorganised and scary. You can’t set up much of an agenda because every conversation is unique and has to go its own way. The usual ways of running meetings don’t work and there are no formal rules or procedures. But the coming together of people to change the world has an order of its own. Gatherings have to be value based – mutual respect and listening really matter. Gatherings have to have a purpose, even if that takes time to emerge. Conversations have be facilitated and structured so that everyone can contribute in some way or another, so they flow, evolve and progress into action.

Plans slowly begin to crystallise, we start talking about how to bring others into our discussions, they bring new ideas, new contacts, new resources. Conversations are rooted in our local community, our local people, our local places, our local issues. They are real and meaningful and grounded in the reality of places and people.

Someone’s on a group that’s working to improve the High Street, maybe we could integrate some dementia friendly thinking in at an early stage. And this is the perfect time because that’d help everyone and save costly mistakes. Someone else is developing a new service which would fit so well for people with dementia with just a small tweak or two, with a bit of training they think they could make a big difference here. What if the Youth Project and the Day Centre got together to organise a music event, that would be really special and would help build understanding and friendships across the community.

We start to talk about how to take things a bit further, we get ambitious. A chat with someone who works with the schools so we can reach more young people and hear what they think about getting older in their community. A group passionate about physical activity gets together to look at how we can remove barriers.  Local organisations and services offer us rooms we can use for meetings and help with printing. We organise a community event to bring everyone together and involve the Business Association. We work out the big things that we can’t do ourselves and find someone to help us. 

Several years ago a wise friend said that if we wanted to make the vision of the Christie Commission a reality we had to find out what makes change happen. It’s oh so clear to me now. People make change happen. I make change happen. You make change happen. We make change happen.  Changing the world doesn’t start with systems and processes;  you can’t change the world just by putting the word in a job description, If it was that easy. we’d all have done it years ago.

The proof of the pudding is in the eating and Dementia Friendly East Lothian is making change happen. Small changes will make big differences, but we need to address the big things too if we are to ensure we get the services and communities that we want and need.  

How far can we get? We don’t know yet, we’re not even thinking about limitations, we’re being positive. In the words of another wise friend, we’ll proceed until apprehended.

And all made by people with just a kettle and a room. #GODO

Cheers

Sue 

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Carer Brain – Looking Inside the Brain of a Carer….

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It’s Carers Week and there’s lots of stuff around about how us carers manage to juggle caring with a whole range of other things. Some folks manage, some struggle, some topple over the edge. There are many powerful stories about our trials and tribulations and the hard work we put in to making it work for the people we love.

What’s not always as visible is what caring does to our heads and as a psychologist I’m very interested in that, so I thought I’d do a spot of reflective thinking about the impact that caring has had on me and how I think.

  • When you’re a carer things are pretty black and white and priorities are crystal clear, especially at crunch times.  Caring for parents with dementia and other illnesses means that at any moment anything can happen. A fall, an exploding microwave, a lost key, a distressed and frightened phone call.
  • When you’re a carer, you dread what’s coming, you’re always expecting something to happen.  I still freeze when the phone rings, especially at care home getting up times and late at night. Is this the call? My heart stops, dreading who might be on the other end.  One morning on the way to work I got ‘the call’ about Dad. One day it will come for Mum.
  • When you’re a carer your head is full of lists and appointments. You have total responsibility for someone else’s life. It’s not just my dentist, optician and GP appointments, the hospital appointments that come with health problems and the general ageing process. Pick up medication, buy milk, do the washing, pay the Day Centre.
  • When you’re a carer, things can get pretty emotional.  Walking alongside loved ones who live with dementia brings with it all that is the best and worst of being human. The journey takes us to the heights and the depths of our emotional life. Love and concern  for my wee Mum can come rushing in at any time, almost bowling me off my feet. Mum’s bravery, her resilience and determination to find a way round dementia, her fight to stay independent and in control, her vulnerability, the kindness of her carers and friends, the thought of where dementia will take her, the worry that I might get it. Of course I’m emotional, of course at times it gets too much. 
  • When you’re a carer you’re always asking favours and always grateful for small kindnesses and mercies, you owe everybody.  The carer Fiona who read Mum my daily diary note in the morning and initialled it so I knew she’d done that; Alf, the neighbour who kept a friendly eye on things.  The boss who never asked any questions if I had to leave early or flex my working for hospital visits.
  • And of course there’s the guilt that haunts you whatever you do.  Although Mum might forget I’m her daughter, she still knows and loves me. At this stage in her journey, I can make her happy just by holding her hand and making her smile. I feel constant guilt that I’m having a run, walking on the beach with Ali, writing this blog, doing dementia friendly work when I have a Mum who I should be with. I will have life long guilt that somehow I am to blame for the awful experience Dad had in a nursing home until we got  him up to Fidra in North Berwick and he had 6 final, happy months.

None of these are unique to caring for parents, or dementia or disability, all of these are a normal part of caring, full stop. What people can fail to appreciate is the intense vulnerability of people with dementias; their total dependence on how they are treated by the people around them and that vulnerability increases day by day. A large part of being a carer protecting our loved ones from the inadequacies of the health and social care system, a system which often removes the humanity from the people who work in it. That’s what Christie was about for me, reminding us that it’s really all about people and how we treat each other. Outcomes don’t happen by magic, people are what it is all about and caring for people dementia means there is no way of avoiding this simple truth.

I didn’t truly understand what vulnerability meant until I saw Mum, tiny and frail in the corner of a hospital ward where she’d been most of the day after having been ‘discharged’. Someone forgot to tell me. She sat there in her nightie, trying to be invisible; the fear, confusion and pain in her eyes haunt me still.  I’d been at work, catching up on things and arrived for evening visiting thinking she’d been safe and cared for.  Every day until Mum went into the Abbey, her lovely care home, I rang her from work at 9am.  By 9 she’d be up, got herself sorted and would be expecting the carers. I wanted her to have a friendly loving voice to greet her in the morning and help her orientate to the day ahead. But there were many mornings  when there was a crisis I had to deal with there and then; the carer hadn’t come so she’d not had medicines; there was a leak in the bathroom; she’d had a nightmare she believed was real; she was searching her 3 rooms for my Dad. There were times when I had to put the phone down on a very confused and frightened woman, praying that the carers would turn up soon because I had work to do, planning my exit if they didn’t. Then I’d have to walk into a meeting as if there was nothing wrong.  Sometimes I just couldn’t compartmentalise enough.

Carers often live on the edge of a precipice; anything can happen at any time, you have to be always alert, always ready to act, hoping for the best, expecting the worst.  None of us know what will happen next, the difference is that for many carers we’ve a pretty good idea of what’s ahead, and it’s scary.

Now that Mum’s in a lovely care home, I’m not her only carer. Looking back I wonder how on earth I coped when I had a full time job and Mum was ‘living independently’.  I suppose the answer is that in the end I didn’t, I had to leave my work and my health and well being were pretty well messed up.  Lots of carers try their best to make it all work and just can’t, lots of us leave our jobs because we can’t stretch things any further, we go ping.  Caring undermines our health, takes up massive amounts of time, energy and brain power.

Caring takes over your brain, hijacks your emotions and gradually your confidence and your capability can get undermined.  When you can no longer do the things  you’ve always taken for granted, when you find your tolerance and resilience flagging, confidence plummets. Caring can take its toll and something has to give.

BUT now that my caring role is manageable and we are Mother and daughter again, I can look back and reassess.

  • I know my priorities and can be quite ruthless in deciding what to do and when to do it
  • I can juggle time, thoughts and diaries like a demon and when things go splat I just deal with it and carry on.
  • I am agile, I can adapt to almost anything that comes my way
  • I am gradually re building my confidence.

Caring for parents with dementia has been one of the most remarkable experiences of my life.  It has highlighted to me that what really matters is how we treat our fellow humans, especially the ones that are most vulnerable and sensitive. We’re all cheered by a smile and depressed by a telling off, people with dementia just show it better.

Carers of course need more formal support too and with our ageing population more and more of us will be carers at some point in our lives. And more and more of us will probably need cared for in our later years. The country can’t afford to lose carers from the workforce because we’re knackered or have to give up our jobs from ill health. The health services can’t afford lots of worn out sick carers who have given so much caring for others they can’t care for themselves. We’re going to need understanding, good quality services for our loved ones; support to help us stay in work or return to work after our caring role is done.  It’s do able and essential – a lot’s  been done for parents (though parents/carers of disabled children struggle and don’t get the support they deserve), surely it can only be a matter of time before we start to adapt things so that caring at the other end of life is supported too. Fingers crossed.

 

Take care

 

Sue

 

 

 

 

 

 

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Creating our vision for a Dementia Friendly North Berwick

Magic happens when people get together to change the world, so that’s what we did to create our vision for a  Dementia Friendly North Berwick.

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After 6 months of talking to people, chapping on doors and walking the streets of North Berwick we finally held our Dementia Friendly Community event on Tuesday. We reckon about 100 folk came through the doors of the Hope Rooms to help us transform our town.  What a range of people! Local shopkeepers, volunteers, people with dementia and their families and friends; care providers, policy makers and service providers all came together to talk, share their ideas and maybe sample a scone or two (baked by our fabulous North Berwick Youth Cafe – thank you guys!).  

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In the centre of the room we had large maps of North Berwick, Dirleton, Gullane and Aberlady and Laura and Andy helped folk to tell us where were the great places to go and what made them good. We have a wealth of great places to go!  Our very own North Berwick Day Centre and care homes, cafes, pubs and garden centres, museums and golf clubs and of course the beach. Even the RNLI got a mention for being friendly and taking time to explain about their work. What made a place great was the people – friendly, supportive, kind and respectful people make good places and good services great – simples.  This really is all about people.

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Sandra from the Community Centre set up a massive net for us to catch everyone’s ideas for making things better. What a catch!

People wanted:

  • Things to do and places to go – physical exercise, dancing, music and reminiscence all featured a lot, with a reminder that transport is critical and places need to be accessible and dementia friendly
  • To be treated with respect and understanding – for example by shop keepers and paid care providers, through training, information and advice
  • Advice and support for people with dementia, their families and carers, including about what’s on and legal matters and
  • Support for (unpaid) carers and their important role
  • To build more connections across generations between older and younger people in our community

A real high spot was when Helen from Fidra Nursing Home and 3 of her residents led us all in a hand jive dance to the Proclaimers 500 Miles. You can see from the faces that it was great fun and something we could all do together.

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So what next? Sandra is writing up the day so we can share all the great ideas more widely with our community. We’ll be looking for offers of help to make things happen. Who can provide some training? How can we help local shops and services? How can we support local carers more? We’ve got some really good ideas for small things that will make a big difference, and that of course is what it’s all about. 

We’ll also be talking to other communities who are interested in becoming Dementia Friendly too. We did all this with a small grant (£500) from the Community Centre and a lot of goodwill and active support from volunteers and paid staff from a whole range of bodies and organisations. Yet again it shows that changing the world is not really about money, it’s about people.

Our hope and belief is that by making our community a better more supportive place for people with Dementia we will not just improve their quality of life, we will also help people stay safely and happily in their own homes for as long as they want to.  Research shows the importance of social connections to our health and well being and we know that living with dementia can be a very scary, lonely and risky existence. I know that for my Mum, when she feels understood, respected and supported she is calmer, happier and healthier, who doesn’t?

As Mum would say, it’s all about living and not existing.

Massive thanks to everyone who made it such a great day. It really was a day to remember and the start of the next stage of our journey.

Cheers

 

Sue

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The Wheels on the Bus …..

Why is it that decision makers seem to ignore messages from research and service users about what makes services more effective and more accessible?

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I’ve lost count of the number of research findings confirming that transport is a critical factor in getting people and services together. How could it be otherwise? Services are in one place, people are in lots of other places. Transport is what brings them together. 

At the North Berwick Day Centre, our Members travel from far and wide. Some Members travel on the Day Centre Bus; some via our Volunteer Car Scheme. Some Members walk and some drive.  We’re very lucky in North Berwick to have a range of options which help people get door-to-door safe and sound so they can meet their friends and be part of a wider community. And they don’t sit in the Day Centre all day – Members go for walks round the town, have day trips and generally have a really good time with their friends. Active, stimulated, supported and connected in a very practical and real way to their community.

Older people across East Lothian (and beyond) often need help with transport. People, whether they live independently, attend Day Centres or live in Care and Nursing Homes, rely on a range of transport to stay connected to their communities, to live independently.  Buses, trains, taxis, Volunteer Car Schemes, Royal Voluntary Service, friends, family and neighbours all help our older frailer citizens get out and about and get on with their lives.

And yet it’s really hard to get funding for community transport. Why is transport seen as separate to the services and amenities we provide?  Taking services into people’s homes is not transport free – there’s a lot of miles covered by carers and others. But somehow those miles don’t seem to count, they get hidden in the overall costs. Whilst it’s fine for some services to be provided in our own home,  helping people get out and about and access local services in their towns and villages brings opportunities for friendship, chats and being part of something. It’s simple pleasures – popping into the shops, going to the drop in coffee in the Day Centre or classes in the Community Centre; shaking a wicked hoof at the Tea Dance or winning the Tomboloa in a Coffee Morning in the Hope Rooms. 

It’s not good enough just to take services to people, there are lots of advantages all round of taking people to services. Our local businesses also benefit.

What’s brought it to mind is the launch of our fund raising campaign for a new Bus. The North Berwick Day Centre Bus is on its last legs after giving fine service for many years. It’ll cost £60,000 to get a new one with all the equipment it needs to help our Members get on and off the bus and travel safely.  It’s a lot to raise but we were cheered by the arrival of our Bus-ometer courtesy of local young people working at the Space.  Here they are proudly displaying their work. Thanks lads!

 

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We have to get better at making sure that transport and services are linked better. We will work hard to raise the money for our new Bus, but that time and energy could have gone on all sorts of activities for our Members and of course not every community will have the resources to do what we’re doing.  Any brilliant ideas most welcome.

Take care

Sue

 

 

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Creating A Dementia Friendly World

For the last few months a group of us have been working to set up Dementia Friendly Towns in East Lothian – starting with North Berwick. Dementia Friendly places are springing up in quite a few locations. Up north, there’s Dementia Friendly Highlands. In Swansea and Brecon in Wales, Dementia Supportive Communities are being set up. Motherwell, Stirling, Edinburgh, York and many more towns and communities are embracing the idea of being Dementia Friendly.

Just as each and every place is different, so the approaches vary.  In Dementia Friendly Highlands and Swansea for example, local people with personal experience of services  have been the driving force behind the initiatives, they know just exactly how good or bad local their services are from direct experience and they know what is needed to make them better. They’ve  created local forums where GPs, councillors and local people get together to make improvements. The focus is on better services but through a whole community approach. The priority is that a diagnosis of dementia doesn’t mean a life cut off from everything around you, and people are helped to continue to do the things that give their lives value and meaning for as long as they wish to.

Other Dementia Friendly initiatives are led by Local Authorities, NHS or  third sector bodies like Alzheimer’s Scotland, The Dementia Services Development Centre at Stirling,  or the Joseph Rowntree Foundation and have involved training local shops and businesses and advertising campaigns to raise awareness and challenge stigma.  Dementia Friendly communities, towns and cities have done a lot to raise local awareness and thinking about what life is like for people with Dementia, their unpaid carers and families.

In North Berwick, we’re taking a very local, community-led approach. We think that  improving the quality of life for people with dementia is very much dependent on the quality of everyday life in the community. Shopkeepers, business people, churches, coffee shops, sports clubs, all the places we go everyday can do a lot to make life for people with dementia and their carers easier. This will help people keep in touch with their friends, doing the things they like doing after a diagnosis. And of course, the fast pace of life and rushing about is hard for many people, not just people with dementia, many of us would benefit from giving and getting a bit of patience and kindness!

The the initiative is being led by the North Berwick Day Centre (I’m on the Committee and my Mum had many many happy times there) and the North Berwick Community Council, with great support from East Lothian Council, Alzheimer’s Scotland, Age Scotland, Sporting Memories Network and others.

We started small, simply walking round the town asking local people about whether they think we need to do more to support people with dementia in our community. Along with the help of our local Community Learning and Development Officer Sandra, I’ve been chapping on doors up and down North Berwick High Street and beyond telling people about our hopes and aspirations and asking for their support.

It’s been a touching and humbling experience. I started off talking to the people that helped me and Mum through our journey – GPs, Dementia Nurses, Pharmacists, housing providers and of course the Day Centres and Care Homes. I just nipped into shops and businesses when I was out and about. The shoe shop where daughters often take their parents with dementia to buy shoes; the post office and the postal delivery office (there were days before we got Mum and Dad to live near us when the only person they say for days on end was the postie); the library, the bakers and the coffee shops where people pop in during the day. Dentists, opticians and the physios also said that they often wondered if patients and clients had dementia and what could they do to help, they often had long standing relationships with people over many years and knew them well.

I found knitting circles in the pub and tea dances in the Hope Rooms; local school pupils designed us flyers and logos and walkers and gardeners all  want to do their bit. So many people I’ve spoke to have been personally touched by dementia in some way and wanted to help in whatever way they can.

The messages are clear and simple – people with dementia want to keep in contact with their friends and keep doing the activities they enjoy, but it can be hard.  People told us that there are things we can do that will help keep these precious bonds and relationships in place even when the going gets tough:

  • opportunities for people across the community to do (fun)  things together;
  • transport so they can get to and fro safely and securely
  • information on dementia so people know how best to support each other.

Every single one of us wants these simple basic pleasures out of our lives, I know I will want to keep in touch with friends and keep active in whatever way I can, why do we think that a diagnosis of dementia or just getting older stops all that? It doesn’t and it’s what makes life worth living whether you’ve dementia or not.

We know from our colleagues in the Highlands and Wales that communities can come together and make a real difference, but it has to be in a way that is meaningful and manageable for local people. So to find out what people in North Berwick want, we’ve organised 2 community events on April 22 in the Hope Rooms in North Berwick. They’ll be ‘drop in’ sessions where people can come and get information and have a chat and share their hopes and aspirations for a Dementia Friendly North Berwick.  We hope it will be fun too! At the end of that day and using all the information we’ve got from talking with people, we should have a good sense of what a Dementia Friendly North Berwick would look like and how to make it happen. Over the next week we’ll be planning the drop in sessions, arranging publicity and deciding how to make use of the many generous offers of help and support we’ve had. 

Then all we have to do is to weave these good wishes and warm hearts into a beautiful tapestry of community connections and caring and help other communities have their conversations too – Simples!

Luckily we have the support and experience of our fellow travellers in Highlands and Wales to guide us. The Dementia Friendly movement shows clearly how local communities can make things happen and be part of a larger movement so that good things happen everywhere. This isn’t scaling up or rolling out, but learning , sharing and growing.  And of course, it’s not just about dementia, it’s about all of us being connected to our communities, whatever life and the ageing process send our way. 

Have a great week.

 

Take care

Sue

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How smiles can change the world

How well we’re treated has a significant impact on whether public services are effective or not. That’s not news, but is does make you wonder why there isn’t more focus on making the human interactions that underpin all our services the best they can be.  A recent study on the effectiveness of services for people with personality disorders illustrates very clearly why we should take this more seriously.

Professor Mary McMurran from Nottingham University was  the second speaker at the British Psychological Society Scottish Scientific Meeting. Her research on Early Engagement in Therapy: Lessons from Research in Personality Disorder showed that non completion of treatment is a major problem in services for people with personality disorders. For many of us in the room, it was pretty obvious that the issues she raised apply to a whole range of services for a whole range of people.

Professor McMurran outlined the scale of non completion:

  • A  fifth of patients failed to complete their treatment
  • The rate of non completion for people with personality disorders was even higher at over a quarter
  • Non completion was associated with poorer clinical outcomes which in themselves were more costly
  • Ten years after treatment, non completers cost £144K per person more than people who completed their course
  • Non completion was associated with reduced service efficiency and demoralised staff and clients
  • Levels of non completion varied a remarkable 37% to 80% across different services

Professor McMurran spoke with a wide range of experts – clinicians and service users – to identify what lay beneath these findings. Her study showed the critical importance of getting early contact and preparation right. This mean paying attention to:

1. The individual’s situation – their internal world, their motivation, their acceptance of having a problem, whether they have memory or concentration problems, all factors which can impact on their ability engage with and benefit from a programme. People have lives, there may have other events and priorities in their life. People’s ability to access the service, transport, timing, literacy, emotional literacy, whether they get support from friends and family all of these make a difference to success or failure. This is why we need person-centred services, why we need to be human. And

2. How services work  – how they communicate and build relationships with the people who use them. The nature and quality of relationships mattered too.

To build a service that maximises the chances that your client/patient/user will get involved and enhances the chances that it works requires that we:

  • Prepare to succeed.  Ensure clients/patients are clear what the treatment is about and what they can expect; work to build a therapeutic relationship and negotiate treatment goals; and  actively support people so they are empowered, confident and have the competencies required to make best use of the programme.
  • Value, respect and welcome participants.  A welcoming and pleasant reception and therapeutic environment; a warm and enthusiastic  greeting; encouraging appointment letters and clear information about what happens next. Following up why people haven’t attended and looking at how barriers to attendance can be tackled together.
  • Build a therapeutic, authentic, human relationship. Where client and therapist work together to convert the client’s problems into goals using goal-based motivational interviews, helping people chase positive outcomes  – much more motivating than avoiding negative events.
  • Stick with it. Renegotiate goals during treatment, persist when there are slips and slides, build a long term relationship of mutual trust all help promote success.

None of this should surprise us, these are the steps we take when we want to succeed in sport or almost any human activity, why should be it be different when people are making any life change? Why do we think our clients/patients respond any differently than we do ourselves?  Is this yet another example of the ‘them and us’ thinking that pervades far too much of our public service thinking?

Over the last wee while I have had experiences that have made me feel unvalued, unwanted, not in control and somehow wanting:

  • Several scary, almost rude, formal letters ordering me to attend for X or Y – even if  accompanied by a friendly plain english booklet, the message about who’s in control was very clear.
  • Staff who ignored me and Mum when we walked in for appointments and only acknowledged us when our number came up on the screen and it was our turn to be processed
  • The assumption that me and Mum can attend any meeting anywhere, any time in places we’ve never heard of and that neither of us have anything else important to do

So many of us just put up with it and hide our responses. Mum’s Alzheimer’s means she can’t do that. Mum’s response to poor service is tangible. Her memory might not work but she can see through the false smiles and the averted gaze and the disinterested comment. Mum can pick up all the things that people try to hide and she will become anxious, sometimes downright frightened; she worries she’s a nuisance, concerned that people are in a hurry and she’s holding them back. She trembles, stumbles, gets anxious and upset, gets breathless and sick. Mum’s emotional intelligence is acute, maybe it’s compensating for her memory, and she responds accordingly. The whole experience is difficult all round and I know has led to her condition being seen as more serious than it is.

Compare and contrast with what it’s like when  we’ve been warmly welcomed with a smile and a ‘hello’; where people checked we’re okay and not lost or needing a hand and taken time to reassure Mum.  Mum is relaxed, she can follow what’s going on, she can follow instructions. One of my favourite times was taking Mum to the opticians in North Berwick. She loved answering the questions and getting them right, she was totally on the ball and never panicked once. All because of the way Mum was treated.

It makes a big different to me too. I love it when I go into Mum’s Care Home or our local Day Centre and I’m greeted like a friend, a part of the team, a member of our extended family by people who know and care about my Mum. I love it when the staff and volunteers ask how Mum is even thought she’s not been there for a while and are genuinely pleased she’s well. I feel I’m part of a circle of care and that those words actually mean something. This is what co-production, if you want another buzz word, feels like.  It’s when Mum, me and Mum’s carers work together and she knows that. Mum loves it when we’re all friends and she sees us talking together, it makes her happy and safe,  life is simple and makes sense.

If you’ve got Alzheimer’s life can be very confusing and upsetting when there’s lots of different people doing different things. In the Abbey, Mum doesn’t need to worry about roles, job titles or even names, we’re all people care for her, together. Believe me that makes life infinitely better for everyone and you know what? it doesn’t cost a penny. You know what? It’s good for everyone, Mum, the staff and me. Professor McMurran’s research suggest it is also likely to save us money.

So why doesn’t this happen everywhere? (a key challenge raised for us all  by the Christie Commission).  I don’t know anyone in the care system who doesn’t want to make the world a better place, so what’s going on? What  is it about our systems that change decent, hardworking human beings (us) into ‘them’?  No one benefits.

Of course if there were easy answers, the world would be a different place, but there are things we can all do that will change the world. It all starts with a smile, eye contact, a warm welcome. If we could greet every patient, every client, every carer with a warm welcoming smile we’d have made a really important start and we’d all feel much better for it. And who knows what exciting changes might come next.

Go on, make everyone’s day!

Take care and 🙂

Sue

 

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February 25, 2014 · 3:56 pm