Hello reader

Welcome Message from Sally

You can find the link for more information and the link to the Panorama documentary on the subject.  I also got involved in the debate about how the journey with dementia has been portrayed in a recent TV advert by the Alzheimer’s Society

There is no one story that can represent all of you.  It’s good for you to be honest about how awful dementia can be but also to share any happy moments and experiences.  We’re thrilled that Diana, who cares for her husband Malcolm, has written a piece for us this month and hope that more of you will in future bulletins.

There is lots coming up for carers over the next few months  from walks, meals, to talks about legal issues and hospital care.  Two TDS carers are presenting at a conference for psychiatrists.  We’re turning the tables and asking them to listen to carer experts!

We also hope you might spread the word about our members with dementia who are going to walk the Manchester 10k as part of a TDS team.  Any sponsorship you can bring in will be very much appreciated.

We are sad to be losing two of our wonderful Dementia Support Co-ordinators, Zsuzsi, who wants to progress her career in music therapy, and Rukaiya.  We wish them well and know that their group members, in particular, will miss them enormously.  Julie, our temporary Business Support Officer, has set up her own business which is booming, and she is leaving us to take that on to greater heights.

At the same time we are welcoming three new staff members, Martine, Caroline and Shabnam as well as two new trustees.  They will all introduce themselves in due course.

Sally

You’re invited to our 10th birthday party!

Get your glad rags on and celebrate with us at the TDS 10th Birthday party!

You are invited to join us for an early evening meal, dance and celebration. Get up and boogie, relax with friends and enjoy a delcious hot Caribbean curry. Carers, members living with dementia, volunteers, supporters, donors and partners are all invited to join us for this evening of celebration.

Tickets are free, but if you can make a small donation to our charity that would be very much appreciated. Your donation will be spent on our vital services and will not be used to cover the cost of the party, which we are paying for ourselves.

This is a drop-in event so don’t worry if you can’t stay for the whole duration - you can come and go as you please!

Reserve your tickets using the button below, email [email protected] or call 0161 226 7186.

Coming up for carers April & May 2024

April

May

Beyond Conversations: Diana’s experience with Empowering Conversations

As a carer I have recently completed this Empowered Conversations follow-on course on Zoom. It was enlightening, and I was asked by Sally to review my experience as it may be something others would find useful in the future. Before attending the course I was unsure that it would be relevant at all as my husband and I connect well with words and gestures.

The course was to encourage us to be curious about other forms of communications and to observe what our loved one may be bring to communicate to us.

Now, when I arrive at the care home, he is happy and well. I arrive smiling and relaxed and we are now able to share our love though it were the beginning of our relationship.

So what did the course give to me?

Firstly, I was pleased that the other attendees were all very open and sharing. Three of us were wives of the person with dementia, and one person was the husband, and one was caring for her mother. I respect their privacy, but I learnt a lot from all their contributions.

One of the first videos we watched on the course showed a baby responding to its mother using only gestures. Baby also copied Mum’s movements, and was seen to be very happy with this. Mother then presented with a blank, unresponsive face. Baby tried hard to initiate hand signals and became very upset at the non-response.

On reflection, I remembered times when I visited Malcolm showing him photos on my phone. If he is not interested I may sit there and answer a few texts.

Perhaps I am ignoring his gestures and unintelligble comments? I have discontinued that habit and he gets undivided attention.

A video which I found very depressing but ultimately very useful was a video of a patient in the end stages of their dementia journey, bed-bound and without any speech or giving any responses to what the nurses were saying. The second video showed the nurse stroking the patient’s head and connecting only by non-verbal means. The patient responded by turning toward the nurse as opposed to turning away.

We were left to comtemplate on what we had learned from the video. It was a lovely interaction and very moving. I still find it to be a very distressing thought that this could be the end stage for my lovely husband.

That week I decided to try to connect with Malcolm non-verbally. On the Monday, the two of us had been in A&E for 22 hours when his catheter was blocked with a blood clot. He was understandably exhausted, and was of course more inclinced to drop off to sleep than communicate with anybody.

We always have lots of hugs and kisses and he loves to be tickled or have a foot massage. He also does lots of pointing gestures which I do not understand. This day, he tapped on the table. I copied the rhythm and he was delighted! He tapped a more complicated one - thanks to Zsuzsi and practice in the Moss Side group drumming circles. We continued the game and he laughed and thoroughly enjoyed it.

Music is so powerful, and I have always used this to calm his agitation or brighten his mood.

I also sing to him when he is walking and it makes it easier for him - more like a dance. Last week I was singing ‘On Ilkley Moor Baht’at’ and he loved the word ‘tat’, which he kept repeating. It made me laugh, and he was overjoyed.

Encouraged, I tried to get him to listen to some of his favourite classical pieces. Short response time and he soon lost interest. I kept trying, and started the 1812 Overture right from the beginning. There was recognition. He started ‘ba ba ba ba ba bum bum’. He kept the rhythm going throughout the piece.

I was more than happy with the connection and came away singing all the way home.

So the course has helped me a lot. I am now more curious about the things we can do and not always fretting about the things we have lost. Love is still there and I do believe that that is transmitted without words and is also very powerful.

Diana

Staff changes - goodbyes and welcomes!

We’re saying ‘see you later’ to some amazing staff members this month.

And we say welcome to …

Book your place for Ghyll Head 2024!

TDS is taking a small group of carers to the outdoor activity centre at Ghyll Head. Two nights of relaxtion in beautiful surroundings, with all meals cooked for you! A fun weekend away where you can choose when to relax, or when to have an outdoor adventure with friends.

You might have read the fantastic poem that Kay wrote in a previous issue of the TDS Newsletter. If you haven’t you can hear her read it on the video we made to show the impact this weekend has for our carers to the trust that funded the 2023 trip

A place on our Ghyll Head Trip costs £180pp, and includes transport to and from Ghyll Head, all your meals, and all activities while we are on site.

A non-refundable deposit of £60pp secures your place. Spread the cost with monthly instalments of £60 (April, May, June) to be paid before 28th June.

Advances in dementia research and drug treatments

You might have seen a lot in the media recently – that there will soon be a way of detecting dementia-related brain changes very early on.  There are also intra-venous drugs that can be given to attack the abnormal proteins associated with Alzheimer’s disease.  Having regular infusions of these drugs has been shown to slow the progression of Alzheimer’s.

This is interesting an exciting news as there have been very few advances in treatment for the last 20-30 years.

You can watch an episode of Panorama, broadcast in February, that explains this.

On that episode you’ll also see film clips of our Walk & Talk Group – although, sadly, we didn’t get any credit for their visit to the group!

The other good website that explains about the diagnostic blood tests is Alzheimer’s Research UK

Versus Arthritis need people in Manchcester to get in touch

This could potentially involve a number of things: your story may be featured in the media, they might organise some photography and / or video with you, or you could be featured in their emails and social media/website content.

They’re also currently in talks with the BBC who are looking to follow the stories of people waiting for treatment in the Manchester area.

Anyone who would like to be involved would be supported throughout the process, and there will never be any pressure to take part in anything you aren’t comfortable with.

Does this sound like something you might be interested in? If so, please get in touch with Erin at [email protected], and they will arrange a time to have a chat with you.

The ‘fun’ in fundraising! Our amazing fundraisers are working hard to raise money for TDS!

We’ll be celebrating our 10th birthday this year, and ten years of enabling Manchester people to live positively with dementia. Our fabulous fundraising supporters have been hopping, running, walking and abseiling to raise vital funds for our essential dementia services - here’s to another ten years!

Kay is abseiling the Palazzo Tower

Kay is one of our fearless TDS supporters gearing up to take on the ultimate challenge: abseiling down the towering Palazzo Tower at The Trafford Centre on Saturday 29th June 2024! And guess what? She's doing it all to raise vital funds for Together Dementia Support!

Kay's journey with Together Dementia Support began in 2020, and her lovely mum has been a member of our Longsight and North Manchester groups. Kay has been a regular face at our carer support sessions, both seeking guidance for herself and supporting other carers on their journeys.

Now, it's our turn to show Kay some love and support! Let's rally behind this incredible woman as she faces her fears and makes a difference for a cause close to her heart. Every donation, no matter how big or small, will make a real impact in the lives of those affected by dementia.

So, join us in cheering on Kay, sending her positive vibes, and if you can, please consider donating to her fundraiser! Together, we can ensure that Together Dementia Support continues to shine bright and provide vital support to those in need.

Dennis & Hilary are taking on the Manchester 10k for Together Dementia Support!

Meet Dennis and Hilary, our daring duo ready to take on the Great Manchester Run for Together Dementia Support!

Despite living with dementia, they are lacing up their shoes and hitting the pavement to make a difference! Dennis is a former ultra-marathon runner and Hilary loves to walk. They are both supported by our Together at Home service.

Show your support for Hilary and Dennis and help us support more people affected by dementia. Every step counts!

Alexandra is scared of heights and facing her fears for Together Dementia Support

I am abseiling for charity!!

Am I scared of heights? Yes.

Am I nuts? Yes … but its for a good cause!

I work full time and am a part time carer for my dad. The news was a shock when he got diagnosed as I was praying it was something cureable. It’s been a struggle with highs and lows, thousands of paperworks having to be filled in but although it’s extremely stressful I am simply repaying the care he did for me and my sister when we were little.

Before diagnosis, he was living alone, coping with this alone and extremely depressed and anxious. Thanks to Together Dementia Support, they have helped us find a free council-funded day care for him to visit weekly as well as AgeUK and Diverse Living. This all wouldn't have been possible without the help of a TDS Dementia Support Co-ordinator.

Not only am I less stressed knowing that my dad has somewhere to go in the day and I dont have to panic about him going wandering or being lonely, they have provided me 121 care and advice and I am ever so greatful for.

Yes it’s tough, but we are dealing with it and coping and its great to see the smile back on my dad’s face now hes not so lonely due to these classes.

We’re recruiting new Carer Champions

We are looking to recruit a team of volunteers to become Carer Champions. This team will work closely with the TDS Carer Support Co-ordinators to help support our growing caseload of carers. It is an important and exciting role for you to share your expertise, valued knowledge, skills and wisdom with others. 

If you have ever taken part in our Carer Training Course or used the Carers WhatsApp Group, you will likely have seen our wonderful Carer Champion, Margaret, supporting carers through their caring journey. We need more kind, patient, helpful carers like her to support more people on their journeys.

If you have lived experience as an unpaid carer then please consider becoming a Carer Champion and make a real difference to the lives of others whilst sharing your knowledge and expertise. 

You will draw on your own experience as a carer to support carers by making regular contact with your match or matches. TDS ask that you commit to 4 hours a month, and this could be split to fit into your own life, an hour a week or two hours fortnightly, as phone calls or zoom catch ups or even an afternoon of four hours to enable you to visit the carer or help with appointments. 

People are at the centre of everything we do at TDS, and we are committed to supporting our carers through this challenging time in a supportive, approachable and non-judgmental way. 

What does a Carer Champion do?

• Support carers with practical and / or emotional support

• Serve as a voice for our carers and enhance their overall support system

• Form empathetic peer relationships

• Offer peer support by sharing appropriate lived experience

• Share practical advice

• Maintain a professional manner and follow TDS values and policies

• Commit to a minimum of four hours per month

If you are interested, please email [email protected] with Carer Champion as Subject. 

Free NHS delirium onling training for family members and carers

Delivered alongside carers with lived experience

Thursday 16 May 2024, 4.30 - 6.40pm
Microsoft Teams (online)

Delirium causes a short-term confused state and can develop over hours or days. It is a sign of an underlying illness. Older people and people living with dementia are at greater risk of developing delirium.

The training will cover:

• What is delirium?

• How to prevent delirium

• Identifying the causes and signs

• Getting help when you need it

For more information

See our delirium top tips for carers and family members guide

You can find out more about our delirium programme here

Any questions e-mail [email protected] 

Open to all family members and carers

To book, please e-mail [email protected] 

Carers Active April - discounted memberships for unpaid carers at Better leisure centres

GLL is collaborating with Carers UK to support their Active April campaign.

The membership offer will run from 1 April - 14 May and provide anytime access to a Better leisure facility at a discounted rate of £30 per month. This includes access to gym, swimming, fitness classes and the health suite. This promotion is available to anyone in receipt of Carer’s Allowance or members of Carers UK.

Throughout April Carers UK will also provide a range of online physical activity sessions and information on staying active. Signing up for Carers UK is free and you can signup online minutes

Dementia trivia