Welcome to the Advocacy and Dementia Blog for Stoke-on-Trent and North Staffordshire. Providing information on the Advocacy Project and the Peer Advocacy Support group. Providing a voice for people living with dementia. *We do not endorse the content of any advert shown on this site.*
We’re DEEPly grateful for our DEEP support network, we cross pollinated and ended up with 18 participants to our open Peer Support Group meeting on Friday 22nd January.
This meeting was facilitated by people living with dementia sharing and comparing their experiences and dementia pathways with each other around the country. It was interesting to note how each person diagnosed with dementia had a different review period (between 3-12 months) yet not one of them had regular review meetings with their GP. The only participant within the 18 who had regular reviews was from across the pond in Canada. This was a very interesting meeting with action points needed to be taken onboard.
We will be back to our smaller Peer Support Group this week to check in with each other on a smaller level. Members mentioned how valuable opening our doors is, and would like to continue to do this on a regular basis inviting guests from across the DEEP network.
The peer support given in this meeting was incomparable with participants at different points in their pathway they were able to support those who were in their early stages. Several members commented how they feel more comfortable opening up to people with similar experiences, living with dementia. The importance of peer support is echoed throughout the country. We have extended our current project to all of our guests to make sure we get a range of perspectives with no boundaries on towns, counties or even countries!
15/01/21 DEEP network guests
<p class="has-drop-cap" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80">Our Beth Johnson Foundation Peer Support Group has opened its doors to different guests throughout the DEEP network to join our weekly meetings. One of the benefits of Zooming is getting to meet people from all over the world without the jet lag. Our Beth Johnson Foundation Peer Support Group has opened its doors to different guests throughout the DEEP network to join our weekly meetings. One of the benefits of Zooming is getting to meet people from all over the world without the jet lag.
In today’s meeting we had Joy, Wayne from Kent and Bill all the way from Canada to share, talk and be a part of essential peer support. We also had a guest from the Alzheimer’s Society Veronica who has an interest in the value to peer support groups to join us and ask questions about how we work.
If you’re a regular blog post reader you’ll know we are working on a new project for the DEEP network relating to COVID and Dementia – we’re lucky enough to have our guests on board with this project and they will be joining our sub-group meetings in the future, how exciting!
Happy New Year to all. It was our first meeting back after the unusual festive period and the first of 2021. We after some time catching up and our usual meeting agenda we have some exciting projects on the horizon. So keep your eyes peeled for updates regarding those.
Being a part of the DEEP network comes with a lot of benefits but one we are most grateful for is the support from members across the country. We are opening up our usual weekly meetings to other members to get involved! Over the coming weeks we have visitors from near and far, we’re looking forward to it!
We all wish you a very Happy New Year and a promising 2021 with meeting up hopefully in the close future.
2020 has been a very unusual year for everyone but here at the Beth Johnson Foundation Peer Support group we definitely haven’t let it stop us. A little overview of everything we have achieved during 2020 and a promising outlook for 2021.
At the start of the year we had a new Project Co-ordinator Laura, who due to COVID-19 has been with the Foundation for 10 months now and still has never met most of our members in person. This did not stop them from giving her the warmest welcome to the group. We had our first ever virtual Zoom meeting on April 27th 2020 and it was all go from there! We decided to meet bi-weekly instead of monthly to keep in touch and share experiences during these strange times. We quickly put together out Top Tips and Tricks on living well with dementia during lockdown, which sharing with the world allowed others to use them and hopefully make a difference.
June soon flew round and the group felt they needed more time to discuss all the topics that were coming up in the zoom meetings. Together we decided to now meet every week on a Friday at 11am, ‘It’s like going the pub with your mates and having a good chat but without buying the weekly round?! In June we also had our film premier with Bigger House and the DEEP network which showcased member’s individual films made about their pathway with dementia. Meeting members of the network all over the UK and being a part of our biggest Zoom meeting with over 40 members!
Did you hear the new name for the month of September? Our group wrote letters, send photos, created social media platforms to stay connected to each other. We questioned the governments saying of ‘Social Distancing’ while respecting its attributes of course. We thought how can it be we are social distancing when we are being more social than ever with new members joining us, existing members overcoming technology issues and joining the group online? We may be physically distanced in Social September but definitely not socially distanced!
October and November provided us with the Arts! We reminisced through the use of childhood photos and mischievous stories about miniskirts to bell bottoms, fresh perms to kiss-curls, need we say more?! We also had performances on Zoom from B Arts telephone theatre and a Story Telling virtual workshop.
With us half way through December – we were guilty of celebrating early this year with Festive Fridays taking place from the 4th of December onwards! This will continue throughout the month to brighten up these dark days, both in relation to daylight and recent events. Building a strong peer support group has helped each individual tackle personal hurdles and overcome problems as a whole group.
We would like to wish everyone a very merry Christmas and a prosperous New Year. We are looking promising into the future to meet again, raise a glass and appreciate the little things again.
What a busy morning we have had! We had the pleasure of being joined by two guests from other DEEP Groups Julie and Stephen. They had a taster of what our BJF Peer Support Group gets up to in our Zoom sessions, we’ll leave the judgement up to them!
This week we had a 10 minute demonstration of EFT (Emotional Freedom Tapping) by our member Sue. We focused on reducing chocolate cravings, a brave and difficult choice if we do say so.. This technique she shared has helped her deal with a whole range of emotions including anxiety. The session was shared in hope that it might help others during this stressful time – thankyou Sue!
We have a busy December ahead of us joining other groups, attending new activities and Zoom parties all round. Keep your eyes peeled.
Our Peer support group decided to dress up in their best festive outfits with smiles all round. From Santa hats, Reindeer antlers, Pugs with hats on and sparkly cardigans they definitely spread some Christmas cheer! We may not be able to meet face to face yet, but our group know the importance of spreading happiness from a far.
We managed to discuss some important tools in which they have been using throughout their pathway and the pandemic so keep your eyes peels for exciting announcements to come.
What is it like living with dementia and living as well as you can with dementia? Members of our Peer support group show in this short film what living well with dementia means to them. BJF peer support group members highlight in this short film how being a member of the Peer support group has helped them to live well with their dementia. They demonstrate in this short film how beneficial it is to have peer support from others living with dementia.
If you are living with dementia or know someone who is and might benefit from joining our Peer support group please contact Betty.machin@bjf.org.uk or telephone 07961752111.
Our peer support group got together as usual on Friday but with a scary twist! Each member came in fancy dress to celebrate a belated Halloween and Friday 13th! Members old and new took part in this weeks theme whilst deciding on next weeks. Members who are unable to join the meeting regularly are still receiving photos, letters and group updates via post and members are even ringing each other for weekly catch ups! Communication is important to everyone during this time, and our peer support group members are taking it upon themselves to stay connected one way or another!
Keep your eyes peeled for our weekly updated on what our Peer Support Group has been getting up to!
A bit of a different morning with morning for our peer support group. We had a special guest Sophia Hatfield from Stute Theatre performing ‘you don’t know me’ an immersive audio play inspired by real stories of care. A beautiful audio theatre usually performed over the telephone reaching those people without technology. She was able to adapt this performance to our group via Zoom!
Some of the members experiences below..
“The performance was very good, very professional!”
“Very emotional at the end, I enjoyed it a lot,”
“It was so touching I wanted it to go on forever and ever, there are loads of messages in the play from the carers point of view and those who are being cared for. It was very touching I really did enjoy it!”
“It made me think of people I have lost or similar things I have been though, it has really made me think, a very good performance”
“The thing is we are all in the same boat and some things are a taboo subject but you have to say what you think while you can. A very good reflection of tough subjects.”
“I really enjoyed the stoke accent – you were all right duck!”
A huge thank you to Sophia and Stute theatre for the opportunity to listen to such a fantastic piece of audio theatre. Knowing that this can be reached in everyone’s phone via landline is a heartwarming thought.
Time for reflection on our relaxing morning we think!
COVID-19 effects are difficult to express verbally by someone living with dementia. The feeling of being well or unwell, discomfort are simply not distinguished. Some information given is not understood or misunderstood. The role of the media has played a big part in all of this. The continuous reports of death by COVID-19 to person living with dementia has dominated the news. Isolation has also had an impact on a person living with dementia on a daily basis. I found writing the right words and following a conversation challenging and frustrating, it sounds like I’m looking for sympathy, far from it, in fact I’m living well with dementia.
The lockdown, where it has had a negative effect it has also become a celebration of love and fond memories. I felt that it is a blessing in disguise. It has taught me to be kind and with using the modern technology I have been more active than ever. I have kept myself busy by joining different organisations for the cause and gained a lot of respect and appreciation.
The peer support group, that I am a founding member of, have been connecting via zoom and the support of the Beth Johnson Foundation has been beneficial; to each and every one of us. I have also been involved with other organisations to highlight the needs of the effects of COVID-19 and lockdown for a person living with dementia. I would like to add a quote:
“the future depends on what you do today.”
People not taking the steps needed to prevent the spread of the virus is of concern. People living with dementia find it difficult to understand the necessary precautions.
Physically socialising is important for people living with dementia and COVID-19 has made this impossible. Losing friends, not being able to go out, loss of confidence and financial situations have all contributed to the feeling of being alone and worthless. I believe that social distance should be changed to physical distance, because social contact with COVID-19 is needed more than ever through the use of zoom, WhatsApp, teams are useful tools to stay connected.
