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3NDWG Webinar - Dementia Activism in BAME communities - Shared screen
Duncan Jones
28:12
Good morning Nigel and all. Looking forward to this
Jude Dale
28:16
morning everyone, good to see you all
Julia Statman
29:38
Hi there brilliant to be here - really looking forward to this. Thank you
Mark Neville
30:21
Good morning everyone!
Richard White
30:24
Good Morning all, looking forward to the session. Perfectly timed with Black History Month :)
Alison Johnstone
32:07
Morning everyone, really looking forward to this session :)
Sara Mackay
32:49
Hi Mohammed. Great to have you all here today. I work to raise dementia awareness within under-represented groups/diverse communities in Wales.
Susan Collins
33:16
Good morning everyone. Really looking forward to this - very timely.
Tanya Kumar
36:14
What an inspiring group!
Helen Coates
36:39
Morning from Sheffield - delighted to be here for this!
Research and Influencing
36:40
Please put your questions to the panel in the Q&A box
Tanya Kumar
36:41
Very excited to be here.
Sara Mackay
40:10
This is such an important awareness raising session, thank you.
Rosalva Johnston
40:32
Good Morning! I am Rosalva born in Lima Peru. I am Dementia Friends Community coordinator for the Alzheimer's Society working with communities and individual to raise awareness in Essex. Is anyone here from Essex ??? :-)
Mark Neville
48:21
Hi Rosalva!
Kath Horner
49:47
hi those of you from Sheffield, are you inspired?!!
Mark Neville
50:09
Dementia Friends sessions for all faith and community leaders!
Shahid Mohammed
52:29
Morning all - great session. Just a quick point I also think that many south Asian PwD who arrived in the UK in the 50’s & ’60s often left their elder relatives back in their home country so have no experience of conditions of dementia so there is a ‘lag’ in the time its taking to start raising awareness of dementia. Also there are faith communities in which djins do exist so if they don’t get the help & support from the right places they will go to faith leaders & healers at crisis point. This issue must’t be dismissed
Duncan Jones
54:15
We had an Inside Track session recently at which the actor Meera Syal talked about trying to find a care home for her father which offered culturally-appropriate material. It’s a serious challenge.
Jean Hart
56:06
I am a volunteer with a project called Reading Rooms run by the Hull Library Service. We are trained facilitators to work with vulnerable groups and those who are housebound. We select short stories and poems carefully which prompt discussion. Yes, we work with people with dementia and their carers. More information from jean@cnjahart.karoo.co.uk
Jean Hart
58:58
sorry that should read jean@cnjhart.karoo.co.uk
Nazia Hussain
59:33
My mother was the same. She enjoyed all kinds of food but her tastes changed as her dementia progressed.
Research and Influencing
59:56
If you would like to get in touch with panel members please email me adele.leighton@alzheimers.org.uk I will be happy to pass you message on safely
Sarah Bravey
01:00:01
Presumably preferred foods eaten (for example) will change as a dementia progresses? Becoming more connected to earlier life experience as the disease progresses?
Mike
01:01:27
love “old school”
Jean Hart
01:01:41
I will ask our coordinator if we can do some research with BAME organiations about the materials for Reading Rooms services in these communities.
Richard White
01:02:16
I remember a colleague talking about a service user who had changing tastes and the existential crisis of them wanting culturally prohibited food! Can be a difficult one as a mix of Dementia, culture & beleifs
Nazia Hussain
01:02:20
I was ‘old school’ but it was not possible for me to look after my mother as I was living abroad. There is an expectation for children to look after their sick parents and rightly so but it may not be possible.
Dementia Who
01:02:39
it shouldn't be so, ask for help from carers. my family guilted me into struggling caring for my mum for over a year & half alone as it was impossible to find doubled handed carers that were Muslim.
Dementia Who
01:03:14
the onus was on needing Muslim carers, if I couldn't handle it myself
Jean Hart
01:03:18
Nazia it is the same in the working class community I come from.
Mike
01:03:23
it won’t always be possible for children now to be carer for their parents going forward
Mike
01:03:51
correct Mia
Dementia Who
01:04:09
yes the same for us
Rosie Strathearn-Brady
01:04:48
What do people do who don't have family to fulfil the caring role / or children work live away... Spot on Mia
Mike
01:05:15
promised my mother before she died that we would never put our dad in a care home. we didn’t. we became his carers after she died. not expecting my children to do same
Dementia Who
01:05:15
yep
Nazia Hussain
01:07:31
Agree with Masood. What about people who don’t have children?
Nazia Hussain
01:09:16
there needs to be a balance. We tend to mollycoddle our elders. My mother constantly asked to do things by herself for as long as she could.
Mike
01:09:44
there’s a link between person-centred & culturally appropriate. if we want to be seen as “inclusive” cultural sensitivity is important. treat people as THEY wish to be treated not as YOU wish to treat them. it’s an issue of inclusive respect
Kath Horner
01:10:13
yes mike
Dementia Who
01:10:20
respect Vs risk
Adele Leighton Alzheimer's Society
01:11:17
Everything should be Person Centred It feels many of the issues are exactly the same as everyone regardless of ethnicity. Are we complicating things by making things culturally appropriate rather than simply being Person Centred. If something is person centred it will be sensitive to their culture, sexuality, work life, family life experiences?
Richard White
01:11:24
So true Mia
Shahid Mohammed
01:12:31
not hard to reach but rather easy to ignore!!
Dementia Who
01:12:33
yes Adele, but getting to person centred can be hampered by cultural issues
Duncan Jones
01:13:04
I think “hard to reach” has been used as a convenient excuse for a failure to connect with different communities.
Mike
01:13:15
I think “language matters”. language can bring distance between peoples purely when others choose the language they wish to use rather than the language that people understand empathise with and trust
Shahid Mohammed
01:13:17
Agree with Mia, community activists, i.e. those support communities on the ground
Steve Mentiply
01:13:30
Unheard voices!!
Mike
01:14:33
no community is “hard to reach”, not even GRT community, it just takes a desire to reach them and make self more accessible, welcoming etc to them
Dementia Who
01:15:59
scared, but most of our community trust our doc, so do see them but may skirt around the issue.
Rosalva Johnston
01:16:03
Please contact me Rosalva.johnston@alzheimers.org.uk I would like to work with you for the Black History months in Colchester
Rosalva Johnston
01:16:23
Thank you
Susan Phelps
01:16:26
Completely agree Mike - it takes willingness, desire, understanding and compassion
Mike
01:17:17
they do it with more intent it feel to me Sue P in Wales
Richard White
01:17:17
Right on Masood
Dementia Who
01:17:31
how do Muslim women connect with others living with dementia? small numbers?
Richard White
01:17:46
Im feeding into a dementia resources design committee with Newcastle University and Masoods point is one Im hammering home to them!
Duncan Jones
01:18:11
A great session Adele and Nigel. Sadly I have to go to work now but please, let’s devote more time to this.
Adele Leighton Alzheimer's Society
01:18:40
Thanks Duncan this is a good start
Kath Horner
01:18:41
great!!!
Bernadine
01:18:46
Brilliant session everyone so informative
Rosie Strathearn-Brady
01:18:59
You cannot understate the value of the third sector / voluntary and faith sectors and the role they play …. TRUST. (we have started Dementia Training volunteers from the community with community language … sadly Covid stopped the pilot café
Richard White
01:19:04
People with dementia & their carers (whatever cultural/ethnic background) are experts in what it is like to live with deentia and more direct engagement and consultation improves
Mike
01:19:18
agreed Rosie
Julia Statman
01:19:30
Fantastic session - Adele ! will this be recorded and available to share? thanks
Mike
01:19:34
agreed Richard
Sarah Bravey
01:19:46
so useful to hear that BAME people might be anxious about accessing services because they may see them as alien and frightening.
Bill Gibbons
01:19:53
Agreed, Mike. “Hard to reach” is a terrible phrase. More appropriate description i think are voices that go unheard and needs unmet
Adele Leighton Alzheimer's Society
01:20:01
This session is recorded and will be on the website by Friday www.3ndwg.org
Julia Statman
01:20:11
thanks Adele
Richard White
01:20:29
Thanks Adele, fantastic session today from the panel
Mike
01:20:41
Sara. 100%
Sharon Ford
01:21:34
Thanks you all. A great discussion as always, and excellent to listen to people with lived experience.
Tanya Kumar
01:21:44
Thank you everyone. Brilliant session - thorough enjoy these.
Dementia Who
01:21:51
yes, Masood
Nur Ali
01:22:02
i Agree with Masood
Mike
01:22:06
more foreign language support definitely needed
Steve Mentiply
01:22:35
Lack of information in different languages is a real frustration
Adele Leighton Alzheimer's Society
01:22:53
If you would like to help Alzheimer’s Society increase the voices of people affected by dementia who are from BAME Community and you know people who may be willing to be Dementia Voice Volunteers like Dianne and Maq PLEASE contact me adele.leighton@alzheimers.org.uk WE NEED YOU TO HELP US! We know more needs to be done but we need people to work with us and help us
Mike
01:22:55
it is a banned phrase in Alz Soc Rebecca. it is stigmatising and needs to be called our
Lila Williams
01:23:32
Thankyou for this, enlightening to the issues faced by all communities
Mike
01:23:46
Steve M. there are solutions available to Alz Soc
Shahid Mohammed
01:24:21
There is illiteracy amongst BAME communities and the when bi-lingual material is often not easy to read. Talking posters maybe better alternatives as accessible sources to reach out to those who need then info
Sara Mackay
01:24:30
Entirely agree with you Dianne about the jargon. Way too much of it!
Sarah Bravey
01:25:01
Also an issue for people with learning/intellectual disabilities
Dementia Who
01:25:03
it's not just language it's firms of communication, there needs to more visual communication, in person, lots of my community can't read
Kate Sergeant
01:25:04
Thank you for all your wisdom, insight and experience, I have learned so much today! :-)
Mike
01:25:16
thanks everyone
Jean Hart
01:25:20
YES Thank you!
Alison Johnstone
01:25:31
Great learning here, thank you
Adele Leighton Alzheimer's Society
01:25:37
If you would like to help Alzheimer’s Society increase the voices of people affected by dementia who are from BAME Community and you know people who may be willing to be Dementia Voice Volunteers like Dianne and Maq PLEASE contact me adele.leighton@alzheimers.org.uk WE NEED YOU TO HELP US! We know more needs to be done but we need people to work with us and help us
Kath Horner
01:25:37
inspiring thank you
Shahid Mohammed
01:25:46
brilliant session, thank you all. Great to see you all
Helen Coates
01:25:47
This has been so great - thank you so much!
Sara Mackay
01:25:49
Brilliant Session, thank you all
Bronte Heath
01:25:58
Amazing session, thank you everyone!
Adele Leighton Alzheimer's Society
01:26:09
This session has been recorded and will be available on Friday www.3ndwg.org
Mohammed
01:26:09
Thank you folks for all the comments and questions - we will read through all of these post webinar. THANK YOU FOR YOUR TIME EVERYBODY
Tharin Phenwan
01:26:12
Thank you everyone
Sarah Bravey
01:26:27
Really really helpful
Sarah Bravey
01:26:31
Thank you!
Dementia Who
01:26:31
Thanks all, it was great to hear from others in same situation & understand where BAME issues are 👏👏
Mark Neville
01:26:35
Thank you everyone! Very best wishes to you all.
Adele Leighton Alzheimer's Society
01:26:45
Next session 20th October - support for World Mental Health Day - a cup or tea and conversation with people living with dementia.
Richard White
01:26:50
Will there be a follow up to this session? it was great
Jude Dale
01:26:53
thank you all for a great session
Susan Phelps
01:26:58
Thank you everyone. It's been a pleasure joining you.
Mike
01:27:18
bye bye
Jane Platts
01:27:19
Fantastic, thank you!