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good morning everyone
Good morning everyone. Thank you for joining us
Good morning all.Pradip Mistry - Chair Thurrock Dementia Action Alliance.
hello I am a therapeutic nurse working a dementia assessment unit and my colleague who is a therapeutic assistant
I feel that post diagnostic care is like the post code lottery and I think it needs to be mandatory for mental health clinics to contact the patient to make at least one phone call a year not just
how old is your husband please ?
very young with such a diagnosis
You are amazing for fighting your corner Amar. Many people would not be able to do what you are doing. Thank you for fighting on behalf of all of us. Well done
Good morning everyone. I’m Naomi Glover. I’m a specialist in Brain Health and Applied Neuroscience and working to develop evidence-based interventions to reduce the risk of dementia and improve outcomes for those who have a diagnosis. I have a professional and personal interest in this field having also lost my father to Alzheimer’s disease. Sending warm wishes to all those affected by dementia and thanks for working to improve outcomes.
That is brilliant news Amar, I'm so pleased you have been able to get the support for your husband at his place of work, it's so interesting to hear people living with/supporting a loved one with dementia and the practical support needed in place to support it outside of the home.
Hello Occupational Therapist working in Adult and Community Services.
Perhaps Royal Mail should consider having Dementia Friendly training for all their staff.
All credit to you for your support and tenacity. I wonder how many people in this situation would have given up? Thank goodness you haven't
What do you think would be the most important thing that employees can do to support people with dementia or people in your husbands position?
AmarAre you able to get support from your family, friends and community? I am working to create greater awareness in Minority communities
Sorry I meant employers
How can we ensure that Dementia Services are not eaten up ,at the expense of other physical health services? Is there any national legislation that protects these services? When money is to be saved by CCGs, Dementia and Old Age services are hit. We had 40 Dementia beds in 2005,now down to 11 ! I am from Suffolk . Would value opinions of other attendees please .I understand we have a national Dementia Strategy,does this cary any weight with CCGs?
what organisation do you work for Pradip?
Dementia Friends should be on EVERY induction in EVERY organisation
Amar have you also heard of TIDE - Together in Dementia Everyday who offer some brilliant courses about looking after yourself?
Should be but is not unfortunately
Astrid I work with Pan Essex Dementia Action Alliances supported by Alzheimers Society. Who do you work with?
allway the same from them
Pradip I work for Carers Support West Sussex and we are currently preparing some resources in other languages for dementia carers - we have also created a local toolkit carer for carers.. if you let me have your email I'll send info - would be good to share any resources we can?
Amar the centre should be able to help in lots of ways depending on the services they offer - we do everything from statutory carer assessments, and counselling to grants and local support groups
hi, My name is Ruth. I work for East and North Herts NHS Trust. I am the Admiral Nurse , dementia nurse specialist. All our staff including nurses, doctors, therapists, porters, housekeepers have to complete dementia awareness training as mandatory - since this was introduced in Sept over 2300 staff have completed it and compliance will be checked at their appraisal. Front line staff are offered more detailed (tier 2 training)
Dementia Champions aren't hard to achieve in businesses. Most people know someone affected by dementia. You just need to opportunity to start the conversation. Our team in South East Essex would always be willing to offer support too Amar.
Gina your an inspiration, so positive
yes me aswell
Oh Gina. How incredibly brave to admit that. I hope you have an opportunity to share how you feel with someone.
HI Gina, You are amazing, who are you main supports during the week ?
thank you so much, Gina, for sharing your story, for being courageous and honest and showing us your strengths
love your positive attitude Gina your an inspiration x
Gina how you've embraced life and gone for it is inspirational, you are fantastic!
Gina, good on you for finding things that you can still do and sharing your journey and awareness of dementia. Keep doing the things that you are doing
You are amazing Gina! You've rebuilt your life, so inspiring.
Amarjeet,Thank you for reaching out. Let's connect and explore ways of creating awareness in the South Asian communities. You will make an excellent role model to share your experiences.Please email me on Pradip@lifesmistry.co.ukMany thanks
good 4 u
Wonderful to her your story Gina. Your positive attitide is a great strength. Sorry to hear of the limited support offerd followig your diagnosis.
Gina Thank you for sharing your experiences, You are incredibly generous !
Thank you Gina very interesting 🙂
Gina, what an inspirational story. I’m so sorry that rehabilitation services are still so sadly lacking in dementia unlike other chronic neurological conditions like MS. We need to get much better at this.
I feel privileged to be able to hear your story today - thank you
u are heiping us now
you're helping people still
You are helping so many people now too by sharing your story, thank you
AstrideI have resources we could share.Please drop me your email to Pradip@lifesmistry.co.uk
Tim, Thank you for sharing. You are so inspiring with how you have managed your life.
Tim can you tell us more about receiving your diagnosis via the internet
it's so great to hear you've adapted and settled in response to your diagnosis Tim, can I ask how did people act around you when you told them, did they understand what it mean't?
Hi, i am a social worker/care coordinator and an under 65's with dementia specialist, have been in my job for over four years now. I would be hard pushed to change my job as whilst it is an awful disease and can be very challenging there is amazing life stories and i build great relationships with my adults who amaze me.
Some people I meet , including carers are very reluctant to seek support from others in similar situations. Any suggestions of what to say to encourage this social contact?
As well as support, you have all mentioned routine or structure - how would you advise others to keep a routine going after diagnosis?
I am a nurse at a memory service and would like to learn from your experience
Tim you speak so honestly too. Thank you too for sharing with those of us, who may have been affected by dementia but aren't diagnosed with it. cant imagine how hard that was to receive the diagnosis like that.
Absolutely agree Nigel
Hi Tim thank you for telling your journey, do you think that some people are scared to talk about dementia especailly becuase of your age ?
Thank you Tim...yes to what you just said Nigel about a national way forward about standards
have you been offered medication ?
It sounds as though there is still very little support for diagnosis and treatment in dementia services. Has anyone had access to rehabilitation such as Cognitive Stimulation Therapy? Cognitive rehabilitation? Reminiscence work? These are all recommended by the NHS and there is a growing evidence base for using lifestyle factors in brain health.
In Northern Ireland the Memory Service is set up to offer post diagnostic support. Everyone is offered this support after diagnosis and ongoing contact is aimed for 6 monthly basis afterwards.
Thank you Tim
Thank you so much for sharing your experiences Tim, it sounds like you have fantastic family support but what support would have been helpful from memory assessment services?
I think people expect those with dementia to 'behave' in a certain way, how hard has it been for each of you to almost prove the diagnosis to those around you?
question to the panel: would knowing more about dementia before you had symptoms helped? is post diagnostic info enough?
In my role, I find that families have been struggling when a person with dementia has come into hospital and they just don't know about the support available in the community
Nigel, was there anything in particular that helped with motivation to have this lifestyle change? Anything I can take with me to try and support other people too?
thank you. Showing positivity and supporting people to live well
That looks delicious Nigel
we are all coming to yours for lunch
you are an inspiration
what time do yu want us round for dinner Nigel :-)
i would like to thank every one that has talked about thre dementia its so good to listen to others that are not afraid to talk about it as we all know if we dont speak up for ourselvs no one else will with Dementia after diagnosis you are mostly on your own no follow up no walk in centerrs it not easy but we have to learn to live with it and try to fight back, its zooms like this that brings it to the front so well done the 3 Nations Dementia \working Group geep up the excelent wok that you do JAMES (jim)
this is wonderful, this is brilliant and looks yummy, losing weight is very hard so huge high five to you !!!!
Looks fantastic food Nigel. It looks very much in line with the MIND diet which has a growing evidence to reduce cognitive decline even in those who have Alzheimer’s.
My goodness! I'm not sure how I got invited to attend this session but I'm so glad I did! I am one of those sorts of 'annoying' Occupational therapist type women!!! I'm also in my 60's with a family history of Dementia and wondering what my future holds. So professionally and personally, I have to say to all of the speakers how inspirational they are and thank you for sharing your stories. Thank you and well done.
Tim, I cannot imagine getting diagnosis in that way. I got my diagnosis face to face and it was traumatic. My spouse was my rock. I have 4 firm friends from school days that were great. And, I suspect, as you found' , am more able to have a "good" life
We are annoying!! Don't take no for an answer!
Its great to hear your positive message Nigel, and those meals look tip top. Although the sad thing is it depends on getting the right professionals with an understanding of the condition, it's unfortunate the support offered isn't universal across the country.
All the panalists are amazing...what a fantastic session. Thank you for your generosity and openness in sharing your experiences :)
Thank you for sharing this Nigel, such an inspiration to us all that you can learn new skills after diagnosis. Thank you to all the speakers today for raising the awareness of what post diagnostic support is working and not working
Thank you so much to all of the presenters. Very very interesting. Hopefully shows the positive impacts that Dementia Navigators and Occupational Therapists can have
Thank you Nigel and all the panel. amazing to listen and see you all.
Thank you all for sharing these inspirational talks
As an OT working in memory rehab services in NI this is wonderful to hear.
I am glad I attended this session, you are helping us professionals more than you know by sharing your experiences.
I agree completely with Elizabeth, thank you everyone
Diet has a growing evidence as one of the ‘magic bullet’s for dementia care. Also exercise, social connection, learning new things (building cognitive reserve).
Totally agree with Elizabeth's comment, thankyou so much for sharing your experiences with us
OT's need to have the time of offer this type of servce and not all regions offer this level of assessment or support. I would loive to see this increased and OT services, should be promoted locally if possible.
I'm another Occupational Therapist and my mantra is 'a healthy human being is a healthy human DOING. Engaging is activities that make your life meaningful is crucial to living a good life. Thank you to all the panel for sharing your experiences.
Thank you all for sharing your experiances, your insprational this has been so intreresting ☺️
This has been one of the most fascinating experiences of my career to date, thank you for the insight and understanding, we help to care for loved ones with dementia (currently all over 70 years), so many families are lost, hearing you all has given me so much to think about, thank you and hope you all have the most wonderful Christmas and a safe future.
Thank you for inspiring me to keep going in my role as a memory nurse, I do think also OT are a key to rehabilitation after diagnosis...
Thank you so much to all those who have shared their insights today. Sending you all my warmest wishes for Christmas and the future.
thank you all
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realy enjoyed the zoom sorry must go
please may i have this recording sent to me so i can share with my team Dementia Intensive Support Team much appreciated Thank you so much
what stands out is all of your positivity. That is no mean feat and can be hard to maintain. So you are all inspirational and if I ever get a diagnosis I hope I can be as positive as you all. Merry crimbo.
thank you great insightful sessiom
Can we access this re cording please? I would like all of my colleagues to have the benefit of your experiences.
I can't thank you enough for sharing your experiences - it has been a pleasure to 'meet' you all - and has inspired me to fight more for post-diagnostic support. Thank you.
Nigel - are the recordings shared with us? i'd love to be able to share with my colleagues
Wonderful session, thank you soooooo much for this
Our next webinar will be on the 18th Jan on the topic of "Learning Disability & Dementia"
Great session all
Thank you all for sharing your amazing experiences. It makes my work worthwhile just listening to your stories.Nigel thank you too.
thank you so much, seasons greetings to you all x
n wishing you all a merry Christmas and a safe and healthy new year
Thank you so much.