Category Archives: Dementia

My yesterdays are disappearing and my tomorrows are uncertain

By Steve, Leeds Older People’s Forum Community Correspondent

Hi my Name is Steve I’m 69 years old and I would like to explain what it is like to experience a decline in your ability to think, remember and make decisions.

I found it very interesting the way Gary A. a member of US against Alzheimer’s explains about the condition:

“Early stage Alzheimer’s begins with episodes of memory lapse progressing to a diminished ability to reason and problem solve at a level achieved in the past.  As you re-evaluate what you now have control over, you must adjust in order to meet your needs via different pathways than you had previously.  Your choices are different and unfamiliar.” *

Carpe Diem

This is my third year of treatment and they still do not know the type of Dementia I have due to the complexity of my case. Still, you must learn to live with it and seize the day.

Still Alice

On 14th February 2018 I went to the West Yorkshire Play House to see a play about Dementia. It’s a heart-breaking story, and the cast perform it with grace and commitment.

No one more so than Sharon Small, who, in a wonderfully unguarded performance, captures the increasing frustration and panic of a capable woman.

As the illness takes hold, she gets lost in her own house and goes to work in her dressing gown; “I miss myself,” she says simply.

What Do I Live For?

My yesterdays are disappearing and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I will forget that I stood before you and gave this speech.

But just because I forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.

It was just at this point in the play I realised that this was a pivotal point in the play for me this was a story of my own journey with Dementia.

Seize The Day

I urge you to go and see this play as every three minutes someone will be diagnosed with dementia. Everyone is busy, and I understand this along with other commitments you will always find a reason not to do something. Listen to the voice in your head and go you will not be disappointed.

This is one memory I will try to remember for as long as I can.

* https://www.usagainstalzheimers.org/stories/7200

Making a difference with Dementia

By Sarah Goodyear, Dementia Friendly Leeds Campaign Manager

‘See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination’.
– Ralph Marston

Dementia can bring stereotypes. Many people have preconceptions about what a person with dementia can and can’t do. You can’t work, you can’t go out alone, you can’t do new things. Yet I know a group of people who might surprise you.

In Leeds we have a ‘DEEP group’. No, it’s not about discussing really deep topics. It stands for ‘Dementia Engagement and Empowerment Project’. It aims to empower people with dementia to increase awareness and services locally.

Our local Leeds group is called ‘Up and Go’. Our group members live with dementia and give guidance to businesses and services in Leeds. They also raise more positive awareness about living with dementia.

“I will forget today, but that doesn’t mean that today doesn’t matter”
– Lisa Genova, Still Alice

On 16th October 2017, four members of ‘Up and Go’ DEEP group and our Dementia Friendly Volunteer, Rebecca, took part in the student ‘Tech Challenge’. This challenge is run by Premier Farnell in partnership with Leeds Beckett University and Ahead Partnership.

It brings together students from colleges and schools across Yorkshire. They design and create innovative technology for people living with a condition.

The students are encouraged to talk to a group of people living with the condition chosen for that challenge. This year, the condition was dementia.

“I’ve got lots of ideas for the students. I’ve been writing them down”
– Marlene (DEEP member)

We arrived at Leeds Beckett at 10am and were led into a lovely, grand room and given a lovely, grand cuppa. We then split into two groups to talk to students about dementia throughout the day.

The students asked our member’s for their own experiences of dementia. The students also received feedback on their technology ideas. Below are some of the insightful questions and answers we had throughout the day.

How does dementia affect you?
  • Marlene: I forget to put oven gloves and burn myself. I also can’t judge how full liquid is in a regular cup – coloured cups are easier. Black mats are also difficult, they look like holes.
  • Bob: Me too, black mats are difficult. I poke them with my stick to check sometimes! I can get lost too. I know Leeds like the back of my hand, but sometimes it just goes and I don’t know the name of where I’m going. Have to keep calm when it happens, as stress makes it worse.
Do you have any coping strategies?
  • Marlene: I have a memory dog, she helps me a lot. I also leave things together. So a warm coat is always with the dog lead to help me remember it.
  • Bob: I leave notes for myself in doorways so I know I’ll look at them. I write them the night before and I write the date. Even though I won’t remember the date later on, I feel better if I know the date first thing in the morning.
What do you think to the idea of a light sensor for the oven Marlene? Or an app on your phone to track where you’ve come from Bob?
  • Marlene: Yes that sounds useful. Something to get my attention – I only have a small sticker on there at the moment and it’s easy to miss.
  • Bob: Yes that would be helpful to get back to a place, or for a regular trip.
How has your life changed since diagnosis?
  • Bob: When I was first diagnosed many years ago I thought that was it. But then I joined the dementia peer support network and it was the best thing I could have done. I’ve got good friendships with people I would never have met otherwise. I’ve started painting which I really enjoy. I lead a happy life.
  • Marlene: I don’t feel that different really, I’ve just carried on as normal. Stayed independent. I deliver dementia friends sessions, I go to talks and meetings. I go out with the dog. Just normal things. Because I’m still me.
 “We’ve really enjoyed today. Nice to think you might make a difference”

Peter and Nancy (DEEP members): It was wonderful to see the two generations working together to create new technology. But it was also wonderful to see the new understanding the students left with.

I saw the look of surprise on some students faces when they realised how active, independent and tech-savvy people with dementia can be. Of course, not all people with dementia do use technology, but some do. Avoiding any assumptions about dementia is vital.

“Thank you very much for your time”

Student: One of my favourite moments of the day was when a student group were leaving for lunch, and Bob reached out to shake a student’s hand. The student thanked him for his time. It was a lovely moment of connection and mutual respect.

I left even more aware of how dementia affects each person very differently. One person might have challenges with how they see things. Others may have challenges with navigating, or with language use.

Dementia can be very challenging. But it is a condition. It is part of a person, that’s all. People with dementia are still unique people. And all people, whether old, young, and living with dementia or not, have the ability to do remarkable things.

We are all really looking forward to seeing the technology the students come up with in the final competition next week.

 Useful Links

Language Use – A handy guide on what language to use when describing dementia

Environment Guide – Giving tips on how to make a building or space more accessible

Dementia Diaries – Hear people with dementia’s voices and opinions from across the UK

www.opforum.org.uk/dementiaOur website with more resources and support in becoming more dementia friendly in Leeds

Circles of Support – Supporting People Living with Dementia

New Project at MAECare

maecare-logo

By Jenny Nayak, Project Worker (Circles of Support) Moor Allerton Elderly Care

What are the Aims of Circles of Support?

The aim of Circles of Support with a person with dementia is to improve their well-being by increasing their social network and so prevent illness, isolation and loneliness.  It aims to support and help people to live in their own homes for as long as possible.  Circles is also beneficial for carers as they feel supported and less alone.

What is a Circle of Support?

A Circle of Support is a group of people who provide support to a person to enable them to think about what they would like to do in their life and how to bring about any changes. The group can include family members, friends, volunteers and professionals; whoever the person identifies as key people in their life. One person is typically identified as the key person to help coordinate the group and ensure that the person who needs the support is at the centre of the discussions.

How does it Work?

A Circles of Support approach   uses person centred thinking which means that the person with       dementia is central to the group. The key person who set up the group ensures that all identified people know what each other is doing to support the person with dementia. The group meet regularly in person or using IT to ensure the person’s wishes are being carried out.

How did Circles of Support Develop?

Circles of Support for people living with dementia was piloted in the South of England over a three year period.  This Project was evaluated and found to have a significant effect on improving the quality of life of a person living with dementia. We want to find out if this method will make a difference in our area. The Circles of Support project at MAECare is funded by the Clinical Commissioning Group for two years until May 2018.

Who is Involved?

Jenny Nayak is the Project Worker for Circles of Support and employed for 21 hours a week.  She will work with people living with dementia and their families in order to develop their social network and improve their quality of life.

How is the Project Funded?

Circles of Support Project is funded by Leeds North Clinical Commissioning Group through the Third Sector Health Grants.

For more information please contact Jenny Nayak on 0113 266 0371 (Mon, Tues, Thurs) jenny@maecare.org.uk

‘Lost in Memories’

A theatre project about dementia and caring

Capture

By Delia Muir

Would you like to use your expertise to help create a play?

Would you like to raise awareness and start conversations about dementia?

What is the project about?

‘Lost in Memories’ is a collaborative theatre project. A group of researchers, theatre makers, carers and people with dementia are working together to develop a play. The play will draw on research about dementia as well as stories from local people.

How can I get involved?

We are looking for people with dementia as well as carers and family members. We are working with people in a number of different ways. You can:

  • Take part in accessible, interactive workshops
  • Have an informal conversation with one of our team
  • Help to promote the play or come along to watch

This is a flexible project and we hope to cater to everyone’s individual needs. No previous experience of theatre is needed and nobody will be forced to perform at any point.

Due to funding restrictions, we have limited space at the development workshops.

Dates for your diary

  • Development Workshop 1 – 14th Sept 2016, 12:00 – 3:00pm
  • Development Workshop 2 – 11th October 2016, 12:00- 3:00pm
  • Performance – 19th November 2016, 1:30pm – Tickets available soon! All activities will take place in Leeds.

Please get in touch for more information.

Working together

By working with people who have real life experience of the topic, we aim to create a play that is relevant, engaging and dementia friendly.

Contact

If you would like to take part or know more then please contact: Delia Muir (0113) 343 8609 Email d.p.muir@leeds.ac.uk

Wellcome Trust Logo

Dementia Friendly Garden in Rothwell

Here is Peter Smith’s update on progress with a dementia friendly garden:

“I approached Leeds Parks and Countryside two years ago,and a lot of research has gone into the idea of a dementia friendly garden,with the involvement of Stirling University, Dementia Studies Department.

A lot of thought has gone into it being a pleasant and safe outdoor space,with a free flowing loop around the garden. It is large enough to be of interest and move around,but small enough to feel safe.

There will be wide flat path,with no steps or trip hazards,plenty of seating with arm and back rests,plus single seats for those who may prefer this option.It is intended to have attractive planting to stimulate interest,with smells and warm colours, and bamboos and grasses that rustle in the breeze.

The benefits of access to outdoors are well known to improve physical and mental health,as well as exercise reducing symptoms of stress, anxiety and depression.

We believe the garden to be the first dementia friendly garden in a public park,and the cost for this one will be £30,000. As with many projects funding is a major issue,and the garden is no exception,obviously any sponsors will receive the the publicity deserved.

The knock on effect will be that Parks and Countryside will then offer,where ever there is a public park in Leeds,an area to any group or organisation,which can be designated as a dementia friendly garden.

Arts, Theatre and BME (Black & Minority Ethnic) communities

 By Ripaljeet Kaur, Touchstone BME Dementia Worker
Touchstone LogoTouchstone’s BME Dementia service has worked in collaboration with many organisations on different projects. The one collaboration which is growing stronger as time goes by is with West Yorkshire Playhouse.

They have also produced a ‘Dementia Friendly performance’ guide in which Touchstone’s Bme Dementia service members are featured which shows their commitment to work with BME (Black & Minority Ethnic) communities.

If you would like to see the guide, please follow the link below.

https://www.wyp.org.uk/about/creative-engagement/older-people/dementia-friendly-performances/

About Touchstone

BME Dementia GroupAt Touchstone we have South Asian Dementia café, “Hamari Yaadain” which means “Our memories”. Our first ever visit to the playhouse was to watch ‘The dearranged marriage’.

Then we watched dementia friendly performance of ‘Chitty Chitty Bang Bang’ amazingly people remembered watching the movie with their kids when they were young.

We definitely pushed people out of their comfort zone to go watch these plays, but it was great to see how it brought back memories from the past for people and started conversations.

Joint project with West Yorkshire Playhouse

Laila The MusicalRecently, we did a small joint project with Nicky Taylor, Community Development manager at West Yorkshire Playhouse as part of their ‘Our Time’ initiative. Our dementia café members went to watch ‘Laila the Musical’ play by Rifco Arts which they all enjoyed a lot.

One of the attendees said,

“When I was young, there was a book on this love story which I have read”. Then, we visited playhouse again to recollect the memories from the show which brought up discussions around love, relationships etc.

Then, members enjoyed creative movement session with music. It was lovely to see someone living with dementia getting involved and enjoying himself.

The future

We are hoping to engage people from ethnic minorities in more arts and cultural activities in the future. Thank you to Nicky for making our visit very comfortable as everyone really enjoyed themselves.

Arts and Dementia in Leeds  

On 25 April Art Development and Leeds City Council, West Yorkshire Playhouse (WYPH) and Leeds Older people’s Forum hosted an event aimed at recruiting more arts organisations to the cause of making Leeds a more Dementia Friendly place.

The city already has plenty to shout about with WYPH programming dementia friendly performances of plays such as Chitty Chitty Bang Bang and creating more than 100 new Dementia Friends; Royal Armouries and Marks and Spencer Archive have been running Dementia Cafes based around their collections, which helps aid participation.

Dementia Friendly Performances

Nicky Taylor, WYPH, recalled a conversation with a carer who had attended a dementia friendly performance, she had explained that whilst her mum couldn’t remember that they had been to see a play the happiness that she felt stayed with her for much longer.

Dementia Champion

Carl Newbould, Royal Armouries, trained as a Dementia Champion in order to train RA staff as Dementia Friends. Being Dementia Friends enables staff to provide a service to people living with dementia and their carers. Carl talked about how people living with dementia have the right to be able to access the city’s cultural attractions.

Dementia Cafe

Katie Entwistle, Marks and Spencer Archive, runs a Dementia Café. One woman’s memories were unlocked whilst handling some of the items from the archive. She talked about how she had worked in a clothing factory making M&S garments.

Leeds Dementia Action Alliance

In sharing successes it is hoped that some of the 29 arts organisations at the event will become a Leeds Dementia Action Alliance member. Many already had some great dementia friendly ideas. All participated in an information session led by Nicky Taylor as part of the event, leaving as Dementia Friends.

We’ll keep you posted on progress!

Irish Memory Loss Research Project

Photo credit: Gavin Freeborn
Photo credit: Gavin Freeborn

Leeds Irish Health & Homes are looking at ways of helping Irish people cope better with the practical and emotional challenges of memory loss and seeing whether there are any gaps in current services.

We are running a small research project and want to talk to as many people as we can to get a better understanding of what memory loss means for people of Irish origin.

  •  If you feel you could help us and are: Irish or of Irish heritage?
  • Have personal experience or have friends or family with memory loss?
  • Belong to a community group or association that come into contact with older Irish people and their families?

If you have an interest in helping make services better for people with memory loss please contact Jim Mulhern in confidence, on (0113) 262 5614 or email jim.mulhern@lihh.org