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Interview with Jack O'Neill, Alzheimer's Society

23rd October 2018

Alzheimer's Society is a UK based care and research charity for people with dementia and their carers. We spoke with Jack O'Neill about the incredible work they do to support people living with dementia. We hope you find Jack's words as inspiring as we did. 

Bob Books have collaborated with five British illustrators to create a limited edition series of Christmas cards this year. The set of cards feature five wonderful designs to cheer any mantlepiece, all profits will be donated to Alzheimer’s Society. You can shop these now here

Thanks so much for speaking with us today. Can you first just tell me a bit about Alzheimer’s Society and the work you do.
Well the Alzheimer's Society is there to support people living with dementia, as well as their carers, on their journey. There are two sides to it- the information and support for people with dementia and their carers and we also run some practical services in the society, which are locally based. The AS is national and our helpline is national, run by our dementia advisors. The website is extensive and gives lots of information about the different types of dementia and how to best live with them. We sign post to other organisations as well. The society is trying to promote an understanding of dementia so there is the Dementia Friends initiative where volunteers run information sessions for businesses, organisations, they are an hour long and they are to help people to understand what it’s like to live with dementia so more people understand it so it improves life for people living with dementia.
So those are the different elements- the information and support, the Dementia Friend and the local services which are different in different areas, depending on the funding of each local area. For example, in Islington, there is Cecilia’s Cafe, which is a dementia cafe running fortnightly on saturdays for the whole afternoon. We also have Singing for the Brain, running weekly, on Tuesday mornings. Both of these are funded by the local council. We also have Side by Side, a befriending service, where volunteers are matched with people living with dementia to enable them to go out and about and enjoy their activities- things they would find hard to do alone but with with this scheme they are able to have some company and enjoy the hobbies they used to do.
Other boroughs, depending on funding, have other services.

And can you talk about your role at AS?

I'm a dementia support worker at the AS, my role is firstly to run the dementia cafe, it’s called Cecilia’s Cafe, named after a woman called Cecilia, she has since died. Her husband had dementia, and she thought it would be good if people had somewhere to go, so her legacy lives on.

The dementia cafe has quizzes, activities, we were making roman style mosaics a few weeks ago, we made tissue roses for St George's day so there are craft activities. It’s a social space for people with dementia and their carers- a safe space.We have singing sessions, again it’s the older songs which are comfortable, songs people remember. It’s a social afternoon, lots of fun. We also carry lots of information and support for living well with dementia for the service users and their carers. When a referral comes through, I contact them, and encourage them to come to the cafe.

The other group I run is Singing for the Brain. There is a facilitator who does a lot of the singing parts, although I run it when she's not there- I get my ukulele out. So again it’s very social, we have coffee, with action songs, rounds, percussion instruments, singing lots of old songs, from musicals and the second world war period so all familiar to the service users.

The Side by Side service is run by another member of staff who works on that full time, training volunteers to befriend people living with dementia. They do weekly visits, take them out, enjoy their hobbies and their interests.

And what would you say are the challenges in your role?

The challenges are being able to get hold of people with dementia. We rely on people getting in touch, although we have good relationships with local clinics who refer people to us, and we depend on social workers and other professionals who work in the community, essentially it’s being able to let people know that we exist, because when they know about it, they come along and they really enjoy it. As dementia tends to progress, people are less likely to want to go out.

The funding is also a big challenge- it would be lovely, for example, to do the cafe every week, but here are overheads which make that difficult. With Singing for the Brain we run it more regularly as the venue kindly offers that for free.

In terms of people living with dementia, what would you say is the biggest misconception about the illness?

Yes, people tend to assume that dementia is only about memory loss. Although that can be an element, losing recent memory, that's only one element. Dementia is caused by diseases that affect the brain- so it can also cause issues with movement, walking, speech and hearing. Any function that our brain deals with, which is everything, can be affected.

There are over 100 hundred types of dementia, so people will be affected in different ways. It was lovely that you used the phrase living with dementia, because that's one of the big things that AS works to do, is to promote the idea that people can live well with dementia. They are not suffering from, they are living with. To change the mentality that they are a victim, that it's something to be scared of. It has its challenges but people can live well with dementia, if they have the support, that's one of the reasons why are our sessions are important.


"It was lovely that you used the phrase living with dementia...people can live well with dementia. They are not suffering from, they are living with."

I know that the AS offers a lot of support for the carers and families of people living with dementia…are there any broad tips you give people in how to best support their loved ones with dementia?

Yes our website offers a lot of information, and our workshops and cafes have a services table with a lot of information for the carers and families.

On the website there are really good video tutorials and tips. For example, someone living with dementia may think they are living in a different time of their life, so in a different reality and day to day, they might be living 30-40 years ago. So if, for example, they keep asking for their mother, we offer tips on how to respond to that. So someone saying ‘well your mother died’ isn’t helpful. They won't believe this as they exist in another reality so there are certain effects of dementia that cause challenging situations. We have lots of resources that can help people deal with that. Another thing is creating a memory box, filled with things that are important- favourite books, favourite music, items that are important. So as the dementia journey progresses, things like a memory box can be really useful.

It can mean that people with dementia have things to look at, they have things that are familiar, it can prompt memories, thoughts and it's also really helpful for carers. So for example, people living in a care home with no family left, their communication might be limited. Their current memory might be challenged, and a memory box lets the staff know what is important to them. They can know their life story.

We see that a lot, it’s often a family member making a photo book for a loved one living with dementia, collating all those memories and visuals- is that something you’ve seen too then?

We use it all the time. Within a memory box, one of the first things we suggest is that people create is a memory book, most people have got giant boxes of old photographs, albums and albums, so they need to go through them and pick out the significant ones, places that they lived, hometowns, family members and friends from years ago- then when you’re creating the memory book, writing down who is in the pictures, when it was, to jog the memory.  Where they went on holiday, their hometowns, the market square, the library, places that they will recognize and remember. So creating a memory book really helps. Particularly if somebody is finding communication difficult- because there's a visual element and it also allows family members and carers to talk about things which are familiar.

It’s really important to try and get memory books and boxes as soon as possible. I mean I have my own, so should I ever need it, then someone will know that yes, one of my favourite authors is Lindsey Davis, and I like Agatha Christie mysteries, and if you’re going to put me in front of the TV, I like the Rome series, or Midsomer Murders. I don't want to watch British Bake Off, so it means people know my story. And I have the photographs that are important to me, where they were taken, who is in them, so someone can sit with me so yes. Memory books are really so important.

To find out more or make a donation please visit Alzheimer’s Society