The Dementia Podcast

Talking Design: In conversation with Professor Mary Marshall OBE, an extraordinary life (Part 1)

April 15, 2021 Professor Colm Cunningham Season 1 Episode 1
The Dementia Podcast
Talking Design: In conversation with Professor Mary Marshall OBE, an extraordinary life (Part 1)
Show Notes Transcript

Join Colm and Professor Mary Marshall OBE, professor Emeritus at the University of Stirling where she was the director of the Dementia Services Development Centre for 16 years. Mary now writes and lectures on dementia care, with a focus on design of enabling environments and is a senior consultant with The Dementia Centre. Together they explore Mary’s rich life of activism, social work, care for others and radical strength that resulted in a diverse and pioneering career in dementia care. This episode reflects how a person’s spirit can make an everlasting change. 

This episode is sponsored by Total Construction

This is a compilation of testimonials for Mary’s career.

Colm Cunningham:

Hello to you and welcome again to The Dementia Podcast. I'm your host, Colm Cunningham. My guest today is someone whose work in the area of dementia is staggering for its breadth and impact over four decades. As the director of the world's first dementia center, Professor Mary Marshall focused on changing our understanding of how we work with and for people with dementia. Back in 1989, what now would be seen as fundamental in dementia practice, like the hearing the voice of people with dementia project was both radical groundbreaking and confronting to the established models of the time. over a number of conversations, I plan to talk to Mary about her work, and many aspects of dementia care. But I'm being careful in this introduction, not to list too many of her achievements. Otherwise, I might get a firm word from her. I first met Mary in 1993, on the pages of the

book, "Dementia:

New Skills for Social Workers". Given that one of the chapters of that book by our friend, Professor Faith Gibson, focused on knowing the person, their past and life story, I didn't want to start these conversations. without you knowing further more of Mary's life. Mary, perhaps is best summed up by this preface in a report in 1982, after she had visited Melbourne in Australia to study and look at the care of people with dementia. It reads, "Mary's presence, her enthusiasm, her ability to establish links between practitioners, which previously didn't exist to help many workers clarify their thinking, and to make them feel they really are doing a valuable job". Despite awesome odds that's some of how she was summed up. And I hope Mary, you'll forgive me as I welcome you to the dementia podcast, in giving you this introduction. But your work and what you've done has been significant and influential to me and many others. Welcome to the dementia podcast.

Mary Marshall:

Thank you Colm.

Colm Cunningham:

So you're talking to me from a very cold Edinburgh today?

Mary Marshall:

Yes, it really couldn't be more different Colm.

Colm Cunningham:

I'm interested to start finding out a bit more about you to know, where were you born?

Mary Marshall:

I was born in Darjeeling in India. My parents having met in Calcutta, where they were both in the British Army for the Burma campaign.

Colm Cunningham:

What was the Burma campaign,

Mary Marshall:

The Japanese work mark, they'd march through Burma and taken Burma and were marching on India, the jewel in the crown. And the British were not prepared to let them do it. It was an excruciating campaign, which was fought. A lot of Australians were there fought in the jungle in appalling conditions and huge numbers of people died of disease. But it was actually run from Calcutta. And the health services were in Calcutta, where my mother was a physiotherapist.

Colm Cunningham:

And, of course, your mother comes from further afield.

Mary Marshall:

My mother comes from Argentina. But she had trained as a physio in London, and she said she joined the British Army to go overseas because that's where the men were.

Colm Cunningham:

And what about your dad? Where was he from?

Mary Marshall:

My dad was Indian and came from a long line of Anglo Indians. His father managed to marry a white woman and became suddenly British and joined the lower ranks of the British civil service. So my father was reared in India and went to the UK only for the second half of Secondary Education and university. So he was really very happy to be called up and sent to India as an engineer.

Colm Cunningham:

So India is where you were born and where did you where you brought up,

Mary Marshall:

brought up mainly in London. And we moved to Scotland when I was 14. So I considered most of my life has been in Scotland.

Colm Cunningham:

However you practiced and trained in social work was out in London or

Mary Marshall:

I was a trainee childcare officer in Brixton at the time of Windrush arrivals when huge numbers of people are coming from the Caribbean to really provide the labor that Britain didn't have in a lot of industries and transport, and it was the most appalling education and racism. as you rightly said, the sign said, No blacks or no Irish, on all the accommodation was dreadful. And as a social worker, you were dealing with people in execrable housing, appalling housing, who were abused in every possible way. Receiving children into care that you wouldn't have had to if there had been some decent facilities. So it was a startling education.

Colm Cunningham:

Did that have an impact on the things you got involved in? Because you have been described as a bit of an activist?

Mary Marshall:

Yeah, no, I, my parents were left wing activists. And we were always involved in anything, if you didn't like it, you did something about it. I spent my childhood filling envelopes and poking them through doors. And at the time of the time of the Vietnam War, so there was a lot of demonstrating to do and I joined the National Council for civil liberties as an observer for the big Vietnam demos. And the best way to deal with it seemed to be to have some formal role in and observing and recording what was happening at these demos. And I went on to remain part of the nccl when I moved to Liverpool to train,

Colm Cunningham:

So you went from London, to Liverpool?

Mary Marshall:

Yes. And there, I remained in Liverpool for a long time. I got a social work job in a health center, which is where I met really my first person with dementia. And I was there and then I did a research project on discharging old people from hospital. And then I became a lecturer in the university there.

Colm Cunningham:

So did you know that your meeting your first person with dementia was even label like that then?

Mary Marshall:

No, no, wasn't the word dementia was never used. It was chronic brain failure. There are lots of euphemisms in paleo with the usual one, but I do remember, that was where I discovered I like doing social work with older people. And often. And this poor chap, his wife was in a bad way. And I could offer him nothing except sympathy, absolutely nothing. I remember feeling utterly and completely helpless, because the only thing that would happen is she would get worse and worse. And then she'd go into an appalling long stay hospital if she survived. And there was nothing for him in the way of support daycare, home visiting. absolutely zero. And in those days, people with dementia were considered to have sort of mush in their brain really, there was no nothing that you wouldn't do would never have thought of providing a stimulating activities for her that was just inconceivable.

Colm Cunningham:

So you're at Liverpool University,

Mary Marshall:

yeah, where I taught all the courses to do with aging, disability, bereavement, all that area of the teaching. And it was becoming very obvious that dementia was an increasing issue. And I remember going to seminars and conferences because I thought I needed to know about it with which was really upsetting if you thought of people with dementia as fellow citizens, because it was the only thing that was offered was a crude reality orientation. Basically, you train them in reality. If they keep saying their husbands died, you keep telling them he hasn't until they remember. I mean, it was I knew at the time, it was not right. And the only absolutely only thing you could offer in the way services was a psychiatric ward. People were beginning to talk about supporting carers. But they were not beginning to talk about offering anything of any quality to people with dementia, who were seen as people who couldn't appreciate it anyway, I can remember being taught that they didn't feel pain, for example. And thinking that can't be right.

Colm Cunningham:

Absolutely, absolutely right to think that and the evidence clearly shows you were right. So what led you to be in Melbourne in 1982.

Mary Marshall:

I'd worked for eight years and you got to terms off as a sabbatical. So I thought this is a chance to see how other Countries provide for people with dementia. And originally I got a job in Calgary and that fell through and a friend of a friend who knew someone in the aged care sector in Victoria fixed up for me to come and work at wince will Windsmere. Which was a fantastic opportunity except that it was a truly horrifyingly awful hospital. I don't know if you don't know it, but it's in Kew. And it's on a hill. And it's the most beautiful building in pavilions surrounded by trees. And yet the quality of care in these pavilions was execrable, there was they were all in one, all the patients were in one room and the beds were pushed to one end during the day. And there was absolutely nothing for them to do was terrible. It was imprisonment really. And my because I couldn't work as a qualified social worker, because I would need to have been retrained to work in Australia. I had all sorts of jobs like running groups for relatives, which was really very interesting. But after a while, the Health Commission said, you know, we're providing you with free accommodation. We don't think we're getting our money's worth, we want you to do a review of dementia services in Victoria. All right, which was the most fantastic opportunity. I drove all over Victoria, I met lots of wonderful people, I networked for dubost and discovered quality of dementia care that was completely unknown in the UK. There were group homes there were hostels designed to provide group care. There was it was a legacy of Whitlam apparently getting people out of psychiatric services and progressive they little group homes were a couple of women who thought you know, mental, mentally ill people can come out of psychiatric hospitals, even people with dementia. There was all sorts of daycare and community opportunities going on. It was astonishing and what was a revelation alive. I'm enraged to the extent this is still the case, when the Australian staff knew more about what was happening in America and London than they did in the next suburb. Right. I still the case. I still read stuff about Australian facilities where it says is modeled on such and such a model in California and you think Hell's bells. You know, in 1982, you were doing brilliant things. way ahead of California. I will spare you the lecture. But it was inspirational Colm. It was utterly wonderful.

Colm Cunningham:

And you then returned to the UK you didn't stay in Liverpool, you actually ended up being the director or chief executive of age concern Scotland, which I think would be called age Scotland, I think Yes, that's right. So how did that come about?

Mary Marshall:

Well, I knew I didn't want to go on being an academic. You know, I had been inspired, I needed to do something about it. And age concern, Scotland offered a blank sheet really, it was a big charity. One of his main Jobs was advocacy on behalf of older people. But we very quickly established a five year program of themes with dementia or our second year of themes. And it took off like a bushfire. The even before we started the year, we held a planning conference and the carers and their professionals in dementia wouldn't go home until they'd done something. And they set up there and then something called Scottish action on dementia, which was an extraordinarily effective lobbying organization. And we nurtured them that organization within age concerned Scotland for a while and then it flew off and set up on it's own but all sorts of things arose as a result of that.

Colm Cunningham:

And one of them was the consideration of the Dementia Services Development Centre

Mary Marshall:

It was more than a consideration Colm. It was a plan with a bunch of fierce activists came up with a proposal for because they were activists they didn't want they were getting huge amounts of requests for training and information and support which they couldn't provide. So they came up with a proposal and sent it to every university in Scotland and chose Sterling, which was a miraculous choice really, in retrospect. But they were also carrying along a political will to do something about dementia care. Because of their lobbying work. I used to come into work. As director of age concerned Scotland, there'd be a brown envelope on my seat, saying send this letter to the following politician. So I dutifully did. And they got all kinds of questions asked in the house. And anyway, which meant that there was money available for this new organization. So I got the job as director of that. And off we went

Colm Cunningham:

some time around this, your father himself?

Mary Marshall:

Oh, yes, yes, that's right Colm they, they've first day I started in June, July, the 19th 1989. In Sterling in an office where there was just me. My mother rang to say your father has just been diagnosed with Alzheimer's disease. And he was also physically very unwell, he'd had his a large proportion of his guts removed with a perforated ulcer. And he was actually in hospital with that when they made the diagnosis because he was getting so muddled up. And he had several years he died in 93 had several years of being in and out of hospital and being very confused, but I knew it wasn't Alzheimer's disease. It was too erratic. Anyway, he subsequently died of his intestinal problems. And my mother agreed to a post mortem. I, my poor old Pa, he provided wonderful substance for lectures on ethics, which I then gave all over the world. Because at no point did they tell him, he had Alzheimers disease, he knew something was wrong, he used to say to me, there's something wrong with my brain isn't there. But we had been told not to tell him anything, it would upset him too much. And the post mortem revealed that he had, in fact, no damage to his brain at all. What he had was metabolic dementia is in his digestive system was in such poor condition that he wasn't getting enough nourishment to his brain. So there's all kinds of ethical issues like, you know, would he have agreed to have his brain taken off for postmortem and the I don't know? Should he have been told should he have given consent for all this? I like to think he would have seen it if it was useful, as part of improving healthcare and dementia care that he wouldn't mind me talking about him. But it is a revelation about how often diagnosis or not right. And I have always taken issue with psychiatrists who are very certain about what is dementia and give you lectures about? This is how it is. Whereas we know there's always a proportion of diagnoses, which are not right.

Colm Cunningham:

It is interesting what you say about the things that, you now, look back and say, there's an ethical issue there. And there are things that didn't feel right. And today we look back and say, I was just reflecting on the back of the fact that you know, hearing the voice of the people with dementia that project, when you look at it now, it seems so fundamental, that you would say, Well, why would you need to do that, but actually, at the time, it was radical, because it was challenging the norm that actually people with dementia have a voice. You just haven't learned how to listen.

Mary Marshall:

And the great thing about the dementia center was that we had free rein to do whatever we felt needed to be done. I mean, that's fantastic luxury, isn't it? As long as we raised the money, which was hard work we did. So if there was an issue that we thought needed attention, like food or the arts or design or anything, we could do it. And one of the issues was we really from very early on involved people with dementia, we certainly involve carers always, but we had people with dementia and they're on our advisory groups for all our work. We all usually had them. Opening our conferences where that was possible.

Colm Cunningham:

Now, your father obviously planning and architecture were passionate in his life. It is therefore interesting that one of your first calls for asking for help actually was about the design of the building. Can you tell us about that?

Mary Marshall:

the other phone call with me sitting in this office, along with my mother was one from a woman who said, I want to build an extension to my nursing home for people with dementia. Will you? Help me please. And because of being in Melbourne and seeing it done, and feeling that that was right and helpful in enabling for people with dementia, I was able to share that. But I realized very quickly that that was not enough. I needed to get boned up on this issue if it was going to arise to an extent.

Colm Cunningham:

Well, how you studied or boned up as you described it, Mary is exactly why I'm looking forward to part two of this podcast. And indeed how you challenge us in 2021 to think about design and people with dementia. But for now, thanks so much for joining us.

Mary Marshall:

My pleasure Colm

Colm Cunningham:

And thank you for joining us on this Dementia Podcast. Steve Taylor and his team at Total Construction have been our sponsors today. Thank you so much. You'll find out more about them at totalconstruction.com.au. And thank you also to my team for all their hard work and looking back at the historic information that we wanted to put this podcast together and for all of the practical important downloads that will be part of the next podcast when we look at design and the future of design for people with dementia. But for now, thank you for joining the dementia podcast. Bye for now.