What made you first aware that Barbara was unwell?
It’s worth starting by saying that, although there are lots of similarities, everyone’s dementia journey is different, and I’m only talking from my own experience, rather than as an expert.
Barbara was always so vibrant, and highly intelligent with incredible recall. People would call up and ask who had been in a certain show 20+ years ago, and she could name the whole cast. Then she started to have a couple of incidents, in around 2009. She’d have blanks on the set of Eastenders, or a blank in conversation. At first, we thought it might be due to tiredness, and perhaps a sign she shouldn’t be doing such long hours. She was in her early 70s at that point and was still working long hours on set and staying up late learning lines. She absolutely adored playing Peggy.
There were a few other signs too. Her personality changed and she became more subdued and even a bit distant at times. It was almost as if a veil had come over and dampened her. She repeated herself and started losing things, and they’d end up in the weirdest of places. We made excuses at first, saying it was her age, of course she will be a bit forgetful and have less energy than she used to.
But it kept getting worse and there seemed to be just a level of confusion about everyday objects. The phone would turn up in the fridge, or she’d pick up the TV remote as if she was answering the phone when it rang. I suggested we go to see a neurologist, which was a difficult conversation to have. She was always so brave, but there was of course resistance. The thing about dementia is that the earlier it’s detected, the better – both for the person diagnosed and their family.
It took a long time from there to get a final diagnosis, about two years in total. There were a lot of tests, both cognitive and in the end a spinal fluid test to confirm Alzheimer’s.
When you received the diagnosis, did either of you understand in that moment what would lay ahead?
At first, we just went into shock. I’ve heard from a few people that can happen. It’s so much to take on board, and your brain jumps straight to the darkest place. When she got her diagnosis, Barbara cried a little, but instantly stopped herself. She looked to me, held her hand out and said, “I’m so sorry”. I told her not to apologise and that we would be fine, but those next few days it felt like I’d been punched really hard and was just walking around in a daze.
Unless you, or someone close to you, have experienced it, the majority of us don’t have a great understanding of what lies ahead. For a while, Barbara was in denial and would get irritable and defensive if I tried to discuss it. I completely understand that mentality, as no one would want to accept that they are going down that road.
I went back to the neurologist, on my own, to try and find out more. He asked me what my fears were. I had so many. I feared that one day Barbara wouldn’t know who she was, all the things she’d achieved in her career, or the love affair she had with the public. Of course, I also feared that one day she would look at me and she wouldn’t know who I was.
There’s no blueprint, and so much of the fear was fear of the unknown. As humans we like to be in control, so that unknown can put us in a really vulnerable state.
Most of us are not natural carers, so there’s a lot of learning on the job. Not least because dementia is ever changing. Even when you think things have settled, change is always just around the corner.
One thing the neurologist did say to me was that Barbara should keep working, as it came second nature to her. She had done it since she was a little girl. Being in front of the camera, or interacting with the public, was part of who she was. The thing was we didn’t go public about the Alzheimer’s until 2018, four years after the diagnosis. I was very conscious of the sort of work she would take on. After a certain stage, live TV was no longer possible, as she would repeat herself. For example, the bingo adverts were perfect, she could read from an auto cue and it was only the odd bit of filming here and there.
Of course it impacts everyone differently, and people go through the various stages at different rates. There were some good moments along the way, but overall, it’s not a nice journey. It’s a heartbreaking thing to watch when someone you love is slowly disappearing in front of you. You’re still looking at them day in, day out, but their personality has changed.
What advice would you give others who’ve recently received a diagnosis?
If I could give advice to anyone it would be – yes, of course you’re going to be upset and shocked by the diagnosis, but please remember you could have years left, enjoy it!
Don’t let the diagnosis be the end of their life and yours. There are likely still a good few years ahead where you’re going to be functioning fairly normally. Yes, you need to start thinking ahead a little bit, about the practical things, but don’t miss out on the enjoyment and time you have together.
One of the first things we did, on advice from the neurologist was to “get your house in order”, by which he meant making sure Barbara’s will was up to date and putting in place lasting powers of attorney. They really need to be in place as soon as possible while the person is still able to make decisions.
I’d also advise you to be aware of symptoms before they start. Barbara became very sensitive to sound and touch, which could trigger a seemingly disproportionate reaction. They may also have mental side effects, such as paranoia or saying unpleasant and untrue things.
I remember so clearly the day when she called me upstairs, panicking and crying, and said: “Scott, I don’t know how to pick clothes”. It’s something she had done all her life, but she couldn’t do it anymore. I used to help her pick out outfits, although as time went on, she became very withdrawn in social situations. We would go out to eat and when the waiter came over, she would ask me what she liked to eat. You become such a pivotal point in that person’s life. She became so reliant on me, and that’s an incredible responsibility. At the same time, it can be draining on the carer.
It’s important for the carer to have people around them who are able to help, and importantly, to be able to ask for help. For a long time, I tried to do it all myself, but there comes a time when it’s impossible to leave them alone, and you need to be able to accept you can’t do it all.
It’s not a straightforward journey, but for most people you find your way. As overwhelming as it may seem at times, you do find the strength, but you must look after yourself. That’s really vital.
Can you tell us a little more about your role as an ambassador for Alzheimer’s Research UK?
It started with Barbara rallying the government for extra funding, which has now been put in place. In 2024, the funding for dementia research doubled from £80 million to £160 million.
We’d gone to see Boris Johnson in 2019, but then the pandemic hit and it all went quiet. After Barbara had passed, I wrote to him to say that dementia hadn’t gone away because of the pandemic, and funds were still needed.
I took to him the idea of a dementia taskforce, where we would bring together the top scientists and the NHS, and everyone else who needed to be involved. I received a call from him just before he left office and he gave us the go ahead. It was the Prime Minister himself who asked “with your blessing, we would like to name it the Dame Barbara Windsor Dementia Mission”, with £95 million of funding.
After it had launched a number of dementia charities got in touch to say that we wouldn’t believe the impact that it’s had. There were so many stories of people and families dealing with dementia and having conversations that they’d never had before, due to the Barbara Windsor effect. People of a certain generation didn’t feel able to talk about it, but Barbara helped make it ok. It’s such an incredible legacy for her to leave.
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