Hello reader

In November’s issue:

• Welcome message from Sally

• Where are things up to with research into the treatment of Alzheimer’s type dementia?

• Changes to TDS services

• Dementia training day for nursing students: Insights from TDS Carers

• Young Onset Dementia Conference, 2024, in Yorkshire

• Goodbyes and welcomes

• Memorial Walk

• Cringle Park Tree Planting

• Crumpsall Church Christmas Fair

• Christmas at the Cathedral

• Wanted: raffle prizes; eBay, easy fundraising

• Christmas shop: cards, calendar 2025 et al

Welcome Message from Sally

Where are things up to with research into the treatment of Alzheimer’s type dementia? You might well ask! 

Two new drugs, donanemab and lecanamb,  have been approved by the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) but then not given approval by Nice (the health spending watchdog)to prescribe them.  The National Institute for Health and Care Excellence (Nice) said their benefits were too small to justify their costs, while there have also been concerns over potential side-effects - such as brain swelling and bleeding.

For some, including Prof Rob Howard of University College London, the decision underscores the need to focus on ensuring people with Alzheimer’s have access to diagnoses, therapy, social care and existing drugs that can help with symptoms of the disease.

But while others agree such support is crucial, they are optimistic that disease-modifying drugs could play a role. According to Alzheimer’s Research UK, about 130 drugs are under development, three-quarters of which aim to delay, slow or reverse the disease.

“There are many promising treatments coming through the pipeline,” said Prof Tara Spires-Jones, a neurodegeneration expert at the University of Edinburgh.

There seem to be 3 types of drug that can slow the progression of Alzheimer’s type dementia:

1. Drugs that target the abnormal protein called amyloid (such as donanemab).  Other drugs of this type seem to be promising and don’t have the serious side effects that donanemab has.

2. Drugs that target both amyloid and the other abnormal protein, Tau. One of these drugs actually switches off the gene that gives rise to Tau.

3. Drugs that reduce inflammation in the brain, called liraglutide and semaglutide (better known for their use in weight-loss jabs).  Prof charles Marshall of Queen Mary University of London said:  “It is possible that for amyloid-lowering treatments to be more effective, we need to give them alongside treatments that target other components of Alzheimer’s disease such as tau protein or brain imflammation”.

Although these drugs may come too late for you, if you already have a diagnosis, we feel this is really heartening news and is likely to delay or prevent Alzheimer’s altogether in the future.  Whether there will also be more effective treatments to prevent vascular, Lewy Body and other less-common dementias, remains to be seen but it’s expected that increased investment into dementia treatments, generally, will lead to greater knowledge about all the brain diseases.

In the meantime, we’re all encouraged to do the basics to take care of our brains.  It may be too late or impossible to change your educational history or the levels of air pollution where you live but dealing with hearing loss, isolation, high cholesterol and inactivity are all, to an extent, within our grasp.

The 14 risk factors are:

Researchers calculate that if, as a society and as individuals, we could completely address these 14 health and lifestyle factors it could prevent or delay nearly half (45%) of dementia cases.

Changes to our Services

We’re sorry if you’ve been a little confused about changes to our services over the last month or so.

Several months ago it was suggested to us that we should set ourselves up as a provider from which Manchester City Council might buy services.  For instance, a Social Worker might agree that the person with dementia needs daytime activity and so refer and pay for them to come to one of our groups or receive our Together At Home service.

Since we, as a charity, need to earn more money to keep our services going, we thought this might be a good option for us and we did lots of consultation and planning.

In fact, our group in north Manchester has increased its length and now runs from 11.30-3pm.  The group have been enjoying a lovely hot lunch each Friday and seem to like the new programme. This has coincided with us starting a Music Café at that group (open to all), in partnership with Manchester Camerata.

However, since we’ve had no word from the council that they are ready to start purchasing services from us, we’ve decided to keep our other groups as before, happily running for 2 hrs and for virtually the same cost.

We’re sorry about the uncertainty and we wish we could control our income and future direction more but, unfortunately, as for other charities, this isn’t the case.

Carers’ Christmas Events

Read on to find out what exciting things we have coming up for carers throughout the festive period:

Dementia Training Day for Nursing Students: Insights from out TDS Carers

On October 24th, a significant event took place at the University of Manchester, where Anna and four awesome carers—Wendy, Louise, Cath, and Miranda—came together to provide invaluable insights to student nurses about the realities of being an unpaid carer for individuals living with dementia. The unit was called ‘Dementia: empowering and creative practice’. It was an elective unit for our second year undergraduate student nurses working in adult, mental health and children’s nursing fields.

The morning was both emotional and enlightening, as each carer bravely shared their personal stories, highlighting the challenges and triumphs they face daily. Their passion and commitment resonated deeply with the student nurses, who were visibly moved by the heartfelt accounts.

The carers emphasized the importance of understanding their perspective, particularly during times of distress. They articulated how healthcare professionals can better support them, fostering a more compassionate and effective healthcare environment.

The feedback in the afternoon was amazing – the students reported gaining a real insight into the experiences of family carers and made them really think about the support needs they have as carers as well as those of the people they care for. Some reported not really understanding just how challenging it must be for carers and how their needs and knowledge often goes unheard – especially in hospitals. They were really moved by the honesty of all our speakers.

This training day served as a crucial reminder that the next generation of healthcare professionals has the potential to drive meaningful change within the health service. By considering the experiences of carers, student nurses can develop a more holistic approach to patient care, ultimately benefiting both patients and their families.

So thank you Wendy, Louise, Cath and Miranda for taking the time out of your already-busy days.

Young Onset Dementia Conference, 2024, in Yorkshire

Jo, one of our Dementia Support Co-Ordinators, attended the Young Onset Dementia Conference earlier in October.  As Jo is very eager and bold, she bent the ear of Professor Martin Green OBE.  He is the Chief Executive of Care England, so is very interested in the dementia world.

Martin talked about the new 10 year forward plan for Young Onset Dementia. He explained that there was research and data collection that currently was underestimating the number of younger people living with young onset dementia in UK: there are 70,000 recorded cases at present.

The North Yorkshire Dementia Forward group have designed and executed an exemplar model of care for young onset dementia that they hope will be utilised across the country. Martin had submitted this plan to all local authorities. In Manchester this was sent to Andy Burnham, Greater Manchester Mayor, who is now co-chair of the board of the Integrated Care Partnership in Greater Manchester. The hope is that each region will incorporate the model locally rather than regionally, adapted to each local circumstances. This model has not yet been released to others in the section. We’ll share that model when it becomes available.

There needs to be clear understanding about the difference and impact of young onset dementia in particular on whole families. This includes clear approaches and proper financial support at a time in their lives when they are laying foundations for the future i.e. pensions; plans to do things once children grow up; mortgages and work. There needs to be resources to support them to live well but these are more expensive than normal care, so local authorities need to recognise that specialist care is needed. North Yorkshire are also raising funds via their U & ME initiative to create a Centre of Excellence for Young Onset Dementia. Launched on 24^th October 2024: YODA day (Young Onset Dementia Awareness) their Campaign Objectives are to:

1. Raise awareness, and keep people living with young onset dementia doing what they love for as long as possible.

2. Deliver a pioneering, specialist, age appropriate care and support model for Yorkshire.

Our Fabulous Forgetful Friends group are currently not funded. We have younger members in the group, and one of the younger members is now on the Dementia strategy working group which. Is great. However although the invitation to attend meetings was there the infrastructure to enable people with Dementia to fully participate was not.  It’s one step forward and one step back!

Our Fabulous Forgetful Friends have members between the ages of 54 – 87! all of who want to make a difference to all people living with dementia in Manchester. We are open to new members. If you are interested, please contact [email protected]

Changes to the staff team: fond farewells…

We are very sorry to be very saying farewell to our wonderful Carers Support Manager Anna Hulme this month –  Anna is leaving TDS on the 21^st November for a new role as a Service Manager with the Penderels Trust in Salford. 

Anna has worked with TDS for 3 years and has truly helped TDS to develop the Carers work to where it is today – the Dementia Cafes, Carers Zooms and Walks, the growth in Carers work for the rest of the team and all her relationship building within the Greater Manchester NHS teams.

She has been such a positive person to have in the team and a supportive reliable support for so many of you – she has set such a strong precedent for our Carers work.  We all feel sad to say goodbye but at the same time we wish her the very best in her next chapter and know she’ll keep in touch with us.

And warm welcomes…

Together Dementia Support: Memorial Walk

In October, TDS organised a memorial walk to remember some of the lovely people we have lost over the last year. We were joined by carers, friends and family to share some memories, support and a few tears. We were not blessed with good weather, but everyone was hardy and walked around Alexandra Park regardless, sprinkling forget-me-not seeds in honour of loved ones.

Thank you to everyone that joined, both those who have lost loved ones and to other members of our TDS community who came to support.

Below a poem by Helen Lowrie Marshall, with which we finished the walk:

Afterglow

I’d like the memory of me to be a happy one.
I’d like to leave an afterglow of smiles when life is done.
I’d like to leave an echo whispering softly down the ways,
Of happy times and laughing times and bright and sunny days.
I’d like the tears of those who grieve, to dry before the sun;
Of happy memories that I leave when life is done.

Thank you very much to Friends of Alexandra Park for providing use of the beautiful Chorlton Lodge so that we could dry off and warm up with some hot drinks and biscuits.

Cringle Park Tree Planting!

On a surprisingly sunny October Wednesday, members from our Walk & Talk group alongside our Longsight group took to The City of Trees initiative special planting event designed to engage and uplift individuals living with dementia. Read on for Holly’s account of our afternoon in the park…

Set in the lovely Cringle Park in Levenshulme, the groups enjoyed their session surrounded by nature; this event was more than just a chance to plant trees; it was an opportunity for our members of the group to immerse themselves into nature again. The session stimulated memories, and promoted the therapeutic benefits of gardening and being in green space..

The act of planting trees allowed participants to connect with the earth and engage in a purposeful activity that sparked joy and creativity. Even the members who weren’t able to physically plant the trees enjoyed being able to ‘’supervise’’ the hard work going on.

Throughout the day everyone was able to share stories about their favourite trees and plants from their past, and there really is something about camping chairs and a hot brew that makes people feel like part of a group. One member said that it felt like they were on a camping trip and that she ‘’could sit here all day and watch the world go by’’.

The City of Trees Planting day was a resounding success, leaving everyone with not just newly planted trees, but also cherished memories and strengthened bonds. As we continue to support individuals living with dementia, events like these remind us of the power of nature and community in fostering well-being.

Upcoming Events:

And be sure to come and join us for a magical afternoon on Sunday 15th December, 2-4pm, for our Christmas at the Cathedral Event!

Those who attend last year will remember an afternoon of family friendly festivities, music from two of our TDS choirs (and more!), refreshments, and a chance to come together as a community ahead of Christmas.

Bring the loved ones you care for, bring your families, friends, grandchildren…all are welcome. The more the merrier!

Tickets are on sale now!

🎫 £15 for adults
👴 £10 for TDS members
👩‍👦‍👦 £3 for Under 16’s

Wanted: Christmas Raffle Prizes!

We are looking for good quality gifts for our Christmas raffle which will be drawn at our Christmas at the Cathedral event soon 15th December.

Hampers, bottles of wine or spirits, boxed toiletries, perfume, or theatre tickets and weekends away - in fact anything that might make a good raffle prize.

If you would like to donate a prize, please contact Christine on: [email protected]

Perhaps you don’t have anything suitable for our raffle but you might have some good quality bric a brac that we could sell on our eBay shop. As Christmas will soon be upon us, remember us if you are gifted unwanted presents.

Your unwanted gift may be just what someone else would like. Head over to our eBay shop to see what we are currently offering:

If you’ve got questions, or have gifts you’d like to donate, please contact:
[email protected] 

FREE fundraising for TDS with ‘Easy Fundraising’

So many of us shop online more than in person now, so why not take two minutes (really, it's THAT simple) to set up an account with 'Easy Fundraising' and raise FREE donations for Together Dementia Support every time you shop online with over 4,300 retailers including Ebay, M&S, and Sainsburys!

The system takes advantage of advert 'clicks', so if you click through to one of the 3,400 retailers and purchase something, the retailer 'pays' to your chosen charity as it would pay for the successful advertising on any other website...!

Even better, add the reminder button on your web browser to make it even easier to remember to go to your chosen shop via the easyfundraising link!

TDS Christmas Cards on sale now!

Our lovely charity Christmas cards are on sale now! They cost just £3.99 for a set of 10 cards and envelopes.

What better way to remember friends and family this Christmas while knowing you are supporting Together Dementia Support at the same time? We have five designs: Nordic Bird House, Praying Angel, Four Candles, Fluffy Robin on Ice and a TDS camper van with Father Christmas, a snowman and a reindeer! The message inside is “With Best Wishes for Christmas and the New Year.”

And coming soon…our 2025 Calendar!

Our 2025 Together Dementia Support Calendar for £5.00. It is now available to pre-order. So make sure you get yours now, either for yourself or as a present.

For these and more items to shop, pop along to our Christmas shop: