Tag Archives: Older People

Dementia: The One Stop Guide – an essential handbook for everyone with an interest in dementia

Dementia: The One-Stop Guide: June Andrews.

I wish I’d had this book when I first came across dementia. In plain English and a lovely human down to earth style, Professor Andrews has written a practical guide that will be an invaluable resource for everyone affected by dementia. I love the practical focus: how to stay well as long as possible and avoid going downhill faster than you need to. That’s the reality of the challenge of dementia for people who have it, who worry about having it, carers and professionals.

Dementia brings many questions and many challenges. Have I got dementia? How can I stay in my own home and live independently as long as possible? I’m worried about my Mum’s memory, what do I do? For many of us, it’s a lonely journey, lurching from crisis to crisis, making it up as we go along, feeling lonely and unsupported. This book will help us get through, to take control and help us stop seeing dementia as the end of a useful and meaningful life. It doesn’t have to be.

Dementia: The One Stop Guide brings together science, practice and the lived experience of dementia to guide the reader through many of the ups and downs that living with dementia brings and provides practical realistic suggestions for what to do.

Quotes from people living and working with dementia made me laugh, made me cry, made me grind my teeth with frustration and, most importantly, helped me realise I wasn’t alone. Hearing the voices of people who have dementia is particularly powerful, giving an insight into what dementia is really like, starting to break down the stigma and barriers that can be as damaging as the disease itself. Helping us see a person with choices and options not the helpless victim or sufferer.

You can see how to reduce your risk of dementia and how to take control and start making plans if you get a diagnosis. Of course none of us know the moment or what lies ahead, so reducing the risk and planning for our older age are things that are worth doing whether you’ve got dementia or not. Theres information on things from getting Power of Attorney (which everyone should do, none of us know the moment) to how to make your house dementia friendly so you can stay there longer (simple suggestions that won’t make your house look like a primary school).

If I had this book I know I’d have fought harder to stop my Dad getting anti psychotics and I’d have been much better equipped to stop the hospital admissions that we all want to avoid. Trying to get my parents out of hospital when they no longer needed treatment was incredibly hard and as a result of their protracted stays, my  Mum and Dad went downhill much faster than they needed to. This book will help you challenge decisions and sheds some light on the real drivers of ‘bed blocking’ in the NHS which is so unfairly blamed on older people.

The bit on working out the system is a bit frustrating – every part of the country, every areas seems to be different, it’s hard to see the logic behind the way things work. But that I’m afraid simply reflects the way the system works. It does help to know that it’s not just you being thick and there are useful hints about how to keep your head above the choppy waters of our health and social care system. Our politicians and policy makers should read that section and work out a better way of doing things – please.

With the help of this book, you can plan ahead; get practical ideas that will help you or the one you love or support live happily and independently for longer with much less stress all round. For people with dementia and carers it will help you have more confidence dealing with professionals and it does help to know you’re not alone in feeling confused, invisible or frustrated. It will help you take control and keep control.

If you’re a professional or volunteer working with people with dementia, their carers and families, this will help you too. It will show how important you are to making life good for people living with dementia. How the way you treat them and their carers can make a massive difference. It can also help you raise awareness and support people better too.

This book is a resource for everyone and if I had my way it’d be in every library, every surgery, every day centre and care home and every one living with dementia would have their own copy. Simples.

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Dementia Friendly East Lothian: Reflections on 2014

Dementia Friendly East Lothian exists to make life better for people living with dementia. Over 2014, we’ve grown into a diverse collaborative of folk across East Lothian and beyond, all sharing a common cause and passion.  A lot has been achieved this year and I wanted to capture the essence of 2014 and say a massive thank you to everyone who has been part of making it happen.

It all started with a simple question: What’s it like to live here if you have or care for someone with dementia? What’s it like going shopping, meeting friends, getting a haircut, having a coffee?  Where are the good places to go are if you have dementia? Across the board, whether it was going to the farm shop, visiting a stately home, or going to the vet or a gym, it’s clear; it’s people that make places and services dementia friendly. A warm smile, patience and understanding if things go a bit awry or take a bit longer than usual, and respect are what make the difference.

In our conversations across  East Lothian,  themes soon emerged.  Just like everyone else, people with dementia  want places to go, friends to see and things to do.  They want to keep active; have meaningful lives and be connected across generations and across the community. People living with dementia want to keep on doing the things they do every day for as long as possible. They want to be respected and valued members of the community. People want to live with dementia.

It’s clear that dementia friendly places and services are here already across our communities, we know what they look like, so how do we make them happen everywhere?

Dementia Friendly East Lothian works on the simple fact that people make change happen, very often despite everything. We are all about people. We open and grow conversations which engage people in communities, shops and businesses to talk about dementia. We chap on doors, we talk about our experiences of dementia as we go about our business in the communities we live in. We work with local media, organisations and networks to take the conversation wider and deeper into communities.

As the buzz about dementia grows, local people get in touch to find out more or ask what they can do to help.  Community events draw folk in to share their views and experiences and find out more; people share pictures and ideas via our Facebook page. Others want to get involved and we talk about what dementia friendly means to them. We go with the flow of the community and allow time for word to spread through local networks. Local champions and leaders emerge and get active, things start to happen.  Dementia Friendly East Lothian  simply helps to keep the conversations going, make links and do whatever we can to oil the wheels from taking the note at a meeting to doing the washing up after an event.

Over the last year, 9 communities have expressed an interest in becoming dementia friendly; 6 are now actively engaged in local conversations, 4 have had community events.  We’ve got over 400 followers on Facebook and an e mail list of over 200 organisations. Local papers have featured Dementia Friendly activities regularly though the year and we’ve been covered by local radio stations.  In November we held our first collaborative learning event where people from across East Lothian came together to talk about what they’ve been doing and what we can do next.

The buzz has turned into action and life is getting better for people with dementia:

  • People with dementia told us that they lost contact with friends when they went into residential care. Now care homes in North Berwick take residents round to each other for  tea so friends can stay in touch.
  • People with dementia wanted things to do and places to go. North Berwick and Haddington libraries set up drop in cafes and Sporting Memories groups and have done dementia training to make their services  accessible to everyone locally.
  • People with dementia wanted fun and laughter with their friends and family: Luminate gave us money for 2 community events in Haddington and North Berwick Day Centre  for over 100 older people, many with dementia, and their friends.
  • People wanted better links with other generations:  Strive, Dunbar Day Centre  and Dunbar Grammar School organised an intergenerational tea dance. In Haddington, pupils from Knox Academy organised a Christmas Carol Concert with Haddington Day Care Centre. North Berwick Brownies regularly visit Fidra Nursing Home and other Brownies are planning to visit other local care homes

There’s lots of great things in the pipeline from community cafes to sponsored walks to swimming sessions and local people and organisations are raising funds to support dementia friendly work in their own community. People are accessing training on dementia and using the new Dementia Friends scheme. And that’s on top of the great work that’s already going on in Day Centres, Care Homes, schools, libraries and churches up and down the county.

So what about 2015? There’s work to be done to strengthen the voices of people living with dementia so they have a greater influence and say on the things that matter to them. Some communities across the UK have local forums where people with dementia come together with decision makers and service providers to improve things. That might be an option for East Lothian too. Our Dementia Friendly Communities are growing apace and Dementia Friendly East Lothian is there to support them and new communities be the type of Dementia Friendly Community they want to be. We help communities share experiences and learn from what’s being done in East Lothian and beyond.

The best thing about 2014 has been seeing the wellspring of generosity of spirit of people across East Lothian to make a difference; to make life better for their friends, neighbours and communities in whatever way the can.  People have given their caring, their time, energy, creativity and money to make things happen. New relationships and understandings have been built. And we have done this ourselves. This is not a top down initiative, it comes from the heart of our communities, we are making this happen because we care.

A massive and heartfelt thank you to everyone who has done something to help make East Lothian a bit more dementia friendly this year. Whether you’re picked up a leaflet, baked a pancake or tiffin, spent time with someone with dementia, done some dementia training, smiled a bit more or become a dementia friend, thank you for helping to making our world a better place.

Wishing you all a very happy and healthy 2015. May it bring you everything you’d wish for yourselves. And of course a year in which East Lothian will become even more Dementia Friendly!

Suex

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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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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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