Episode 1 - Purpose

Rukiya Mukadam. Photo: Ben Gilbert/Wellcome Collection

Rukiya Mukadam. Photo: Ben Gilbert/Wellcome Collection

‘Previously my purpose was to look after family and raise my children to the best of my ability… now since I have got this dementia I wish people would be more aware of what dementia is about. In our community - the Asian community - it is more of a taboo subject, because we think once she is over 60 she is old, so she is “just like that.” You become hesitant and don’t trust yourself.’

Rukiya Mukadam’s sense of purpose has always been centred on her family. Since being diagnosed, she feels her purpose is now to raise more awareness of dementia, both in her community and society in general. Rukiya lives with Alzheimer’s Disease.

Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Cooper. 

Object featured: Audrey Amiss, Scrapbook. Credit: Wellcome Library/Courtesy of Audrey Amiss’ family

Episode 2- Obsession

‘It is hard to stop me. I say that of myself! I struggle to do balance. I know advocacy is good for me, to demand of myself but making the judgment is hard. I actually got such a buzz in my professional life – playing a role in one theatre and directing in another and having meetings about another. And I have to balance because I want a certain amount of challenge; I do not want to become passive.’

Ronan Smith’s ambition and work ethic has driven his professional life, which is still a huge part of his identity. Now this drive has manifested itself in his dementia advocacy work. Ronan lives with Familial Alzheimer’s Disease (fAD).

Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Cooper. 

Ronan Smith. Photo: Ben Gilbert/Wellcome Collection.

Ronan Smith. Photo: Ben Gilbert/Wellcome Collection.

Episode 3 - Prejudice and Discrimination

Tom Hughes and Mike Parish. Photo: Ben Gilbert/Wellcome Collection

Tom Hughes and Mike Parish. Photo: Ben Gilbert/Wellcome Collection

‘I think the message is “We are here, we are not invisible”. As LGBT people like anybody else we need help, love and support. Our being LGBT is an important part of our life and goes with us wherever we are and if that can be respected in older life, in all aspects of life - we can’t ask for anything more.’

Mike Parish and partner Tom Hughes’ experiences as part of the LGBT community have shaped their lives and are still very much part of their identity. Tom lives with a dementia caused by HIV-associated neurological disorder (HAND).

Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Cooper. 

Object featured: Rumi Clinton, Where Do I Go? Credit: Rumi Clinton

Episode 4 - Self-expression

‘I was feeling low, shell shocked from having the diagnosis. I started writing at home as a way to exercise my brain. Poetry was quite cathartic. Some of the poems are about my dementia, about how I felt. Then suddenly I thought I don’t want to write about my dementia anymore, it was boring and I’d got it out of my system! So I started talking about life and other things in my life.’

Tracey Shorthouse is resolved to live positively with dementia. She decided not to shy away from expressing her experiences and writing became a powerful vehicle for her to share her voice.  Tracey lives with an early-onset dementia called Posterior Cortical Atrophy (PCA).

Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Cooper. 

Object featured: JJ Beegan, Three Quadrupeds, c.1946. Credit: Adamson Collection/Wellcome Library

Tracey Shorthouse.  Photo: Ben Gilbert/Wellcome Collection

Tracey Shorthouse.  Photo: Ben Gilbert/Wellcome Collection

Episode 5 - Willpower

Veronica Williams-Laing. Photo: Ben Gilbert/Wellcome Collection

Veronica Williams-Laing. Photo: Ben Gilbert/Wellcome Collection

‘I believe in my willpower. So many places I get lost and if I don’t sit and remind myself in the morning before I leave the house - you got to do this and do that and come back home…you got to use your willpower to remember to do your thing. Even if you have to make two or three trips. You’re not going to get up off your bed if you don’t have the willpower - I’ve been there.’

Veronica Williams-Laing’s willpower got her through tougher times when she came to the UK at nine years old, and she has harnessed this in the face of dementia.  

Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Cooper. 

Object featured: Alexandra Georgiou, The Dowry, 2011-2015. Credit: Wellcome Library

Episode 6 - Beauty

‘I suppose I should forget about some things like what the house should look like and just let it be what it is. Well I still love beauty and am very interested in all sorts of things. I’ve always felt (this sounds awful) that I can make me look the part if you see what I mean. I have never felt I’m just going to wear anything, but I’ve always - a bit of me - always thinks that I’m alright.’

Joycelyn Grieves has always had pride in her home and appearance and this remains a big part of her life. She continues to find beauty in all aspects of life. 

Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Cooper. 

Jocelyn Grieves. Photo: Steven Pocock/Wellcome Collection

Jocelyn Grieves. Photo: Steven Pocock/Wellcome Collection

Episode 7 - Nature

Margaret McCullum. Photo: Steven Pocock/Wellcome Collection

Margaret McCullum. Photo: Steven Pocock/Wellcome Collection

‘We go on long walks, my husband and I…we walk for miles. I love trains - I like to look out of the window. In fact I look at everybody, I like looking at their faces and if they move around - I am nosey! When we go out on our walks sometimes we walk for a long, long way without any fear or hesitation and I enjoy walking when I can see anything and there is nobody there that I would think would harm me.’

Being outside and among nature brings Margaret McCullum joy and peace of mind, and closer to the people in her life.

Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Cooper. 

Episode 8 - Support Groups

‘The very first meeting I went to a support group, there was someone there who was speaking about her relationship with her husband - explaining the process of having him in a care home. It was a lengthy process and quite frightening… it gave me some sort of a perspective but was very difficult to hear. Now, people are coming to me - oh gosh, feel like an old timer now - it’s like you’ve already been through this and have a lot of knowledge you can share.’

Roberta McKee-Jackson has found support groups immeasurably valuable – a chance for people experiencing dementias to come together and share their experiences. Her husband Noel lived with Posterior Cortical Atrophy (PCA) and has sadly passed since this podcast was recorded.

Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Cooper. 

PCA Support Group meeting, hosted by Rare Dementia Support at The Hub

PCA Support Group meeting, hosted by Rare Dementia Support at The Hub

Episode 9 - Connection

 ‘She is where she is. I can’t make her be anywhere else - I need to be with her where she is and I need to try and understand and if I can’t understand, then I need to know that she is trying to do her best at all times - to be whatever it is in the moment that she feels. I do actually believe that both of us grew through that experience and through being able to maintain a connection right up to the very end.’

When her mum Audrey was diagnosed with dementia, Caroline Kitcatt went on a journey with her that enriched both of their experiences and taught Caroline new ways to connect with others.

Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Cooper.