Tag Archives: dementia friendly

Meeting to promote ‘Join Dementia Research’

Last week I was fortunate enough to be asked to speak at a meeting being held in Wakefield: the National Institute of Health Research Patient, Carer and Public Involvement away day. They were developing their strategy for the year ahead.

I attended with Sarah Daniels, Dementia Research Project Manager, as a lay member of Join Dementia Research. We were there to promote the forthcoming national launch of Join Dementia Research which is taking place on Tuesday 24th February. Both of us are involved with the launch down in London on that day – more to follow next week.

We decided that I’d go first with a talk about my journey and difficulty finding research:

I have a vested interest in research being carried out in the field of dementia. Being diagnosed with a progressive, deteriorating terminal illness focuses the mind on the here and now. If you were to ask those living with dementia what areas they deem to be most important within research, you would be presented with a myriad of options – but none more important than ‘a cure’ to this most stubborn medical enigma. I’m not naïve enough to think that if a cure were found tomorrow that it would mend those parts of my brain that are broken, but it would rid my daughters and all the generations below me of that ‘inevitability’ that a diagnosis brings.

I spoke of the post code lottery that appears to exist in whether patients are offered research at the point of diagnosis. No clinician on my journey broached the subject of research – I had to go looking for it. I knew from my attendance at the Royal College of Physicians, where I  met researchers, that they found it difficult to recruit volunteers, yet here I was having difficulty finding research – crazy.

Join Dementia Research’ is all set to address these issues, as it’s got the potential to become a ‘one-stop shop’ for researchers and willing volunteers. Now, clinicians will have no excuse for not encouraging patients to take part in research. Where once they would have to assess their applicability, now they will only need to hand over a Join Dementia Research leaflet and offer words of encouragement. This will empower the public sign up for themselves.I want to promote and encourage people to register their interest, but also encourage health professionals to approach and encourage their patients to register as well.

We also need to encourage those diagnosed with early onset to state in their Lasting Power of Attorney the advantage of documenting their willingness to take part in research once they lose mental capacity, if they so wish – to talk to their family about their wish. This would take away any ethical dilemmas faced by families in the future and give researchers access to those who are difficult to find at present.

The war on cancer and the amount of funding given to cancer research has seen a revolution in treatments being available – a cancer diagnosis is no longer the death sentence is was 40 years ago. We need the same to happen in the field of dementia research and Join Dementia Research will give us the tool to be able to bring together researchers with willing volunteers.

After Sarah delivered her presentation we were met with many questions – always a good sign. It evoked dialogue and discussion and they invited us to stay for lunch – another good sign and very nice too – so it was a very worthwhile visit.

More  on the launch next week………….

10 positive things people have said to me

 

Top 10 positive comments people have said to me – in no particular order:

1. “We’re so proud of you”

2. “You’re still you and I’ll always love you even when you can’t remember my name!”

3. ” What can we do to keep you well at work?” – sadly not by the right person but at least someone said it:)

4. “You’re so positive”

5. “What can we do to help?”

6. “Would you like to comment on a plan to help those with dementia?”

7. Would you like to attend a conference to give your perspective as someone with dementia?”

8. “You’ve changed my view of those who have dementia”

9. “Can you think of what we could do that might help others with dementia”?

and finally

10. “Why don’t you do a blog!” – the best of all:)

To all those people, especially Sarah and Gemma, thank you:)

If you find it difficult to know what to say to someone living with dementia, some of these questions may be a useful starting point.

 

Billy the Cat considers a dementia friendly holiday

Me sulking
Me sulking

Wendy left the iPad lying around again, so I thought I’d grab the opportunity to put paw to keyboard as I’m not happy.

They’re sending me to the cattery again…..they think I don’t know…..but I’ve seen the signs….
The first was Stuart squeezing himself into the salopettes and then the next few days/weeks spending all day on the bike. I’d never book a holiday straight after Christmas – although come to think of it, I’d never book a holiday..They should take a mouse leaf out of my book and simply have a constant supply of biscuits on the go – no more, no less. He now he looks ‘svelte, sleek, streamline and ready for the slopes’ (I’m sure those were the words he used)………

Gemma’s perfectly formed so no need for drastic exercise action ( what do you mean, ‘creep!” I have to keep in one of their good books!) but for ages now, all she’s done is monitor the snow forecast in some far off place instead of concentrating on me. Worse of all, I’ve seen the horrible house cum cage thingy they squeeze me into to get me to said cattery.

It got me thinking. I hate being away from home, as well they know, so I wonder what we need to do for Wendy? I think she’d go on holiday without a struggle so no need for horrible cage thingy. However I do think she’d need familiar things around her. I’d like my empty cardboard box with me – I’d let Wendy borrow it if she really wanted to. What? Why wouldn’t she want to borrow my empty cardboard box??!!!
A holiday can be enjoyable for anyone (so I’m told!). With careful planning there’s no reason why it can’t be just as enjoyable for those living with dementia. The main things to consider appear to be:

Be realistic on the amount of time to spend away. Wendy loves weekends away – any more and I miss she misses me too much.

If travelling with a carer to family or friends, discuss how best they can help before you go. People are often more than willing to help if they know beforehand. It’s also an opportunity for the carer to get a break and helping hand – never forget the carer.

Some people living with dementia can find it difficult to cope in new surroundings – involve them from the start. The experience can be very different according to the stage of dementia. Wendy would like lots of printed maps – visual and in words and not to be rushed.
Make sure they carry the name and address of where you’re staying at all times.

If staying in a hotel, a small friendly hotel is often better than a large one with lots of confusing floors and corridors. Be honest with them if you’re at all worried. If they’re worth visiting they’ll be more than accommodating and understanding, if they’re not, steer clear.

Each individual is different but crowded places are usually best left to the crowds.

Make the person feel safe and secure.

The earlier you start preparing for the holiday, the less stressful it will be.

Make sure you have ordered enough medication to last the holiday.

If going abroad – check the insurance covers any accident or illness linked to dementia

Wendy likes walking alone on the fells in the Lake District – she may now need to take compass, maps, GPS equipment, tent, flare gun and survival kit in case she gets lost or if all else fails, just tie a long piece of string round her wrist to haul her back in – ha!

Plan, plan, plan – don’t leave anything until the last minute. Be organised and enjoy.
I mentioned at the beginning that Wendy might like familiar things around her – maybe she could take me! Mental note to self to make oneself indispensable for cuddles……..
The Alzheimer’s society have a great fact sheet on the subject that goes into far more detail:

Travelling_and_going_on_holiday_factsheet

After all I’m just a cat – a very unhappy cat who’s being abandoned for the week. I can dream though…….

Me and my friend Bruce
Me and my friend Bruce

p.s. I’ll send you a postcard next week from my hotel prison cell

Alzheimer’s Press release December 16th 2014

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News Release​ from Alzheimer’s Society Tuesday December 16th

Hundreds of thousands with dementia facing exclusion this Christmas

• 71 per cent of people affected by dementia think a lack of understanding has caused people with dementia to be left out at Christmas
• Two thirds of people with dementia receive fewer invitations following their diagnosis
• Dementia Friends advert starring Chris Martin and Amanda Holden, alongside Gina Shaw, a person living with dementia, is back on TV screens calling for people to become a Dementia Friend this Christmas

This festive period, people living with dementia are at significant risk of being isolated, according to new findings revealed by Alzheimer’s Society. New figures released today (16 December) reveal that a lack of understanding about the condition has led to those with dementia being excluded during what should be a joyful time of year.

A new study, among people affected by dementia, was carried out by Alzheimer’s Society and reveals that:

• Half (49 per cent) of those caring for somebody with dementia believe Christmas is an isolating time for people with the condition
• Nearly two thirds (63 per cent) of people with dementia have found that Christmas invitations have dried up since their diagnosis
• 47 per cent feel that people didn’t have time to include those living with dementia at Christmas
• 71 per cent of carers think that a lack of understanding is causing people with dementia to be excluded at Christmas
• Almost half (47 per cent) of people with dementia admit that their biggest worry is how family and friends will react to unusual behaviour

Nearly 80 per cent of people with dementia name shopping as their favourite activity in their local area, yet 63 per cent of those polled do not believe that shops are doing enough to help people with dementia.

Alzheimer’s Society and Public Health England (PHE) are calling on people to join the half a million individuals and over thirty businesses who are already helping to make this Christmas a dementia friendly one by becoming Dementia Friends. Twenty of these businesses are on the high street and include Argos, Barclays, Homebase, Lloyds Banking Group, Santander and M&S.

A  Dementia Friend is someone who has learnt a bit more about what it is like to have dementia, and the small ways they can support someone living with the condition. Retailers are encouraging their employees to become Dementia Friends, and providing guidance on supporting customers with dementia, including paying for goods and talking on the phone. Many staff who are Dementia Friends will be on hand to support customers affected by the condition when doing their Christmas shopping this year.

A new guide, also published today by Alzheimer’s Society and PHE, contains tips on how best to support people with dementia at Christmas – both at home and in the community. From singing traditional songs to having a quiet room set aside at a party, there are many ways to include people living with dementia at Christmas time. To download a copy of the guide, visit http://www.alzheimers.org.uk/christmasguide

Jeremy Hughes, Chief Executive at Alzheimer’s Society said:

‘Christmas is usually a time when families, friends and communities get together but people affected by dementia can struggle to take part or get left out altogether. It can be particularly painful when invitations to social events dry up because friends and neighbours fear dementia and don’t know how to act.

The more people understand about dementia and become Dementia Friends, the more we can reduce the stigma and enable people living with the condition to feel more confident about taking part in their local community.’
Celebrity Dementia Friend, Fiona Phillips, is an ambassador for the Alzheimer’s Society. In 2006 her mother, who lived with Alzheimer’s, passed away. Her father was diagnosed with the disease shortly afterwards and died in 2012. She said:

‘I know first-hand the devastating impact Alzheimer’s has on those living with the disease and their families. Christmas is such a wonderful time of year but it can also be very stressful.

‘It’s so important for friends and families to support each other, both emotionally and practically. Just being on the end of the phone or offering to help with the shopping can be a big help for someone caring for a person living with dementia.’

Tom Walden (29) from London thinks that Dementia Friends in local shops will have a really positive impact on his parents. His father Peter has frontotemporal dementia and motor neurone disease, which means that Tom’s mother Brenda often finds shopping with Peter a struggle. Tom said:

‘We need to increase public understanding of dementia as people still don’t know that there are many different types of dementia with a range of symptoms and behaviours. My dad is prone to wandering off when he’s out and about with my mother, and has lost his ability to speak, but because he doesn’t display any memory loss, people don’t tend to realise that he has dementia and often find his actions rude or disconcerting.
Professor Kevin Fenton, National Director of Health and Wellbeing at Public Health England, said:

‘In the excitement of Christmas, communities and individuals often overlook the needs of people with dementia. It is, however, encouraging to see the growing support for those living with the condition, through the fact that there are now more than half a million Dementia Friends and over thirty supporting organisations.

Through little actions, such as having more patience and not leaving out those affected by the condition, Dementia Friends can make a big difference to the lives of people with dementia, at Christmas time and throughout the year.’

By 2015, there will be 850,000 people with dementia in the UK. Dementia Friends was launched to tackle the stigma and lack of understanding that means many people with the condition experience loneliness and social exclusion.

Anyone can become a Dementia Friend by watching a short online video or attending a face-to-face session. To find out more visit http://www.dementiafriends.org.uk

 

From all those with dementia

This is one man's house in Melksham, Wiltshire! He does it for charity :)
Festive pic: this is one man’s house in Melksham, Wiltshire! He does it for charity 🙂

From all those with dementia:

Don’t be offended if I get your name wrong this Christmas – what does it matter

Don’t be offended if I put the wrong names on the wrong parcel – it’ll make opening them all the more fun

Don’t keep correcting me if I get things wrong – does it matter?

Don’t be offended if I can’t join in the constant chatter – if you don’t all speak at once I’ll find it easier.

Don’t be offended if I want a bit of peace and quiet

Don’t be offended if I can’t keep up with all the games and quizzes as I can’t think of the answers quick enough.

Don’t be offended if I can’t watch a film all the way through without losing the plot or falling asleep

Don’t get the hump if I don’t remember what you bought me

I can give a thank you hug

I can accept a hug

I can ‘enjoy’

I can be content in my own little world surrounded by those I love.

I can be asked ‘what do you want to do?’

I can be happy just being me

Come to think of it, you don’t have to have dementia for those things to apply – see we’re not that much different from everyone else…………let’s look after each other this Christmas.

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Dementia friendly performance of ‘White Christmas’ review

I received an invitation via my blog from Nicky Taylor – Community Development Manger at West Yorkshire Playhouse in Leeds, to attend a dementia friendly performance of White Christmas.

I wouldn’t have chosen a crowded theatre with loud music and flashing lights normally but I was intrigued to see how they could make such a show dementia friendly.

The fact that they thought to create a different environment is wonderful. The fact that they thought to include those with dementia is even more wonderful. After all, the show contained so many songs for all ages but would be more familiar to the older generations and bring back happy memories.

I arrived to find lots of people dressed in red all ready to help – the fact that they stood out was helpful. They were all so friendly and smiley. We had a sing song before the production that many joined in and enjoyed.

They’d made slight adjustments to lighting and sound to make it softer. They had flexible seating arrangements so if you needed more space you could ask for it. You could request that the seat next to you remained free. There were areas in the auditorium where you could wander walk around. They’d provided a quiet area if it all got too much and you needed a breather. They seemed to have thought of everything. They couldn’t do anything about the steep steps down into the auditorium but so many helpers were on hand that it didn’t look too much of a struggle for anyone and no-one was rushed.

It was a wonderful production. What made it was all the people on hand to help. Their brightly coloured red tops stood out perfectly and they all wore their names. The signage was clear and frequent.

I stand and applaud Nicky Taylor and her band of merry men and women helpers for showing such an initiative, let’s hope more companies follow suit – thank you from all those who attended with dementia and their carers

http://www.dementiafriends.org.uk

http://www.wyp.org.uk/what%27s-on/2014/white-christmas/

Billy the cat prepares for a dementia friendly Christmas

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Wendy’s out Christmas shopping so I’ve commandeered the iPad to write my blog:)……..well if she leaves it switched on what does she expect!

I knew the month of December had arrived when Stuart got this huge box down from the loft. Once emptied of all the huge branches and baubles, it makes an excellent den – never quite understand why humans insist on filling boxes when they’re so much more useful empty…….

I sat in said box and supervised Stuart putting up the tree – I remember as a kitten climbing up said tree as I thought we needed to start a new tradition of ‘Cat on top of tree’ instead of fairy, but it didn’t take on…I tried again this year, but either the tree is less sturdy or my biscuit consumption has got out of hand as I’d only got halfway up when the tree started to take on a jaunty angle and I thought it best to retreat to the safety of my box.

Humans really need to take a leaf out of my box book, when considering those with dementia at what can be a very noisy, busy, chaotic time of year. So here are my tips for providing a cat dementia friendly Christmas……:

Never take us shopping when the shops are heaving – too much noise and crowds cause confusion and disorientates.

Before the big day, check they’re not going to run out of medication – order well before – must remind Wendy to read this…

Some theatres are now doing dementia friendly performances – see if your local theatre is one – not sure what ‘Cats not allowed’ is all about though…..

If you’re going to a Carol concert – make sure it’s one that sings the old carols that they will be familiar with so they can join in.

Make sure me and Wendy have a quiet area in your house where we can feel happy to go if things get too noisy and confusing. We need our cuddle time.

Safety first – I like nothing more than to have lots of paper and boxes lying around but those with dementia have a tendency to fall over anyway and can easily go flying if there’s obstacles all over the place and I don’t want you leaving me alone on Christmas day to take someone to A&E……

Allow them to help if they want to (although Wendy would insist I write here that this doesn’t have to be compulsory as Stuart makes a mean Christmas dinner totally unaided…) but others may enjoy cooking – think and plan ahead so they can help if they want to.

Don’t be offended if they’ve put the wrong name on the wrong parcel – what does it matter – it makes it all the more fun opening them! You can never have too many parcels marked with a ‘Billy’ tag – hint hint……

Don’t move their possessions around to make space for others – they like consistency and panic if things aren’t where they expect them to be

And finally – Don’t be offended if people with dementia want to spend quiet time with their pets – we’re a wonderful calming influence.

Include don’t exclude – Adapt the Christmas environment to be dementia friendly. Plan ahead, don’t make a fuss, make it normal…

Dementia friendly performance of ‘White Christmas’ 16th December

I’ve received an invitation via my blog from Nicky Taylor – Community Development Manger at West Yorkshire Playhouse in Leeds – to attend a dementia friendly performance of White Christmas.

I wouldn’t have chosen a crowded theatre with loud music and flashing lights normally but I’m  intrigued to see how they could make such a show dementia friendly.

It’s on Tuesday 16th December at 2pm with singing at 12.30 prior to the show. Take a look at their website if you’re local. Go on the website (address below) and when you’ve clicked on White Christmas, scroll down to the bottom of the page to see the link to the dementia friendly performance.

http://www.wyp.org.uk

The fact that they thought to create a different environment is wonderful. The fact that they thought to include those with dementia at redesigning the performance is even more wonderful. After all, the show contained so many songs for all ages but would be more familiar to the older generations and bring back happy memories.

I stand and applaud you for showing such an initiative, let’s hope more companies follow suit. I’ll report back next Wednesday!

p.s. Leeds was also the first place to introduce an ‘autistic friendly’ shopping experience at Toys R Us and have since cascaded it to their other stores. I thank all towns and companies who support inclusiveness by finding ways of solving a situation rather than ignoring it.

Dementia Friends Roadshow!

Helen Gilbert – Head Of Patient Services at Leeds Teaching Hospital, has just become a dementia champion. It is the same Helen that I mentioned on a previous blog – the Apple guru – who guided me through the maze of the iPad technology.

She is now about to embark on training all her managers on Dementia Awareness with the added twist of me giving the opportunity to deliver a speech at the end.  The training will not only be from the perspective of the patient but now from the employees perspective as well. Helen use to be my manager in our previous world, and has been wonderfully supportive since hearing of my diagnosis and is now doing everything she can to raise awareness.

Her decision to attend a Dementia Friends training session and becoming a Dementia Friend Champion was purely coincidental, as she was already aware of the need for training with regards to patients and only took on the stance from an employee perspective when she heard about me. At last, someone doing something positive and practical. As I’ve said before, I work for the NHS, in one of the largest Trusts in the country, employing 15,000 people. Statistics say that I can’t possibly be the only employee affected in some way by dementia.

The powers that be will only get brownie points from me if they put something into action, talking about it doesn’t count.

Well, Helen can have a bucket full of brownie points. She held her  first brilliant dementia awareness session  yesterday. About 30 managers attended. I also attended in my capacity as a team leader and interacted with the other managers during the session. At the end, Helen read out my ‘Memory Poem’ and then introduced me as its author. I stood up and announced that although I was use to standing in front of an audience of Ward Managers and Matrons as an expert in eRostering and staffing, I was standing in front of them today as an expert in Alzheimer’s. I went on to explain, as Helen had said, that dementia isn’t age related and isn’t just patient related. Our hope is that this was powerful enough to steer their thoughts around ‘awareness’ in general for staff and patients alike and acknowledging all age groups may be affected. I hope they went back to their areas with renewed vision. More talks organised for the New Year!

I’m sure they got lots out of the session – if you haven’t already become a dementia friend please sign up today – it’s so simple – web address below.

https://www.dementiafriends.org.uk/

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