Dementia is a significant and growing challenge. At present there are approximately 70,000 Kiwis living with dementia and that figure is expected to grow to 170,000 by 2050.

Dementia is indiscriminate. It’s something that could happen to any of us and yet there is a strong social stigma attached to it. This stigma can negatively impact well-being and quality of life for those living with dementia and their families.

How we break down the stigma and ‘normalise’ dementia featured in a conversation we had this week with Simon Holst, son of Kiwi cooking icon Dame Alison Holst, who was diagnosed with dementia in 2014.

Cubro was proud to sponsor Simon’s story as part of the 2019 NZACA conference. We sat down with Simon to learn a bit more about his family’s journey with dementia.

What has life been like since the diagnosis?
It’s been an interesting road and there’s been a number of challenging aspects with Mum’s condition in recent years, but we’ve got that in hand a bit better now, so overall, it’s pretty good.

What was it like when you first found out about your mum’s condition?
It was a surprise. It’s not something you plan for yourself is it? Mum and Dad had all sorts of plans and I don’t think this was one of them. And in a way, it feels like we’ve been playing catch up ever since.

It was strange for me, but I imagine it was probably worse for my father and sister who are both doctors – my sister is a geriatrician. I think my naivety may have made it slightly easier, rather than knowing the full reality of what was coming down the road.

Were there any early signs that your mother had dementia?
There were signs before the diagnosis, however it’s probably easier to see them now with the benefit of hindsight.

Shortly after mum moved to Auckland, she surrendered her driver’s licence – which I’m thankful for now. She wasn’t a fan of driving and particularly with the roads up there, so we didn’t think it was that odd at the time.

There were probably some more signs at work that Mum wasn’t quite herself. We did a lot of cooking demonstrations together and I noticed that she had a pen and paper with notes that she started to read from, which was a bit odd. She used to rattle recipes off easily and always had everything on the go at once during our cooking demonstrations. We just put this down to her getting older. I remember one book launch – at the last minute she said she wasn’t feeling well and couldn’t do it, so I went ahead by myself. It all went fine, but it was all a quite out of character.

A more prominent sign that things weren’t quite right, was Mum’s anxiety around events. Whenever there was mention of appointments, travel arrangements, dates and times, she got increasingly anxious. Her growing anxiety was the thing that prompted us to go and get a medical diagnosis.

What have been the biggest behavioural changes?
Mum lost her interest in cooking very early on. I’m not sure why. This was a very strange thing for me. We had to change the way we worked together. We’d often agree things and then she’d go ahead and say something or do something totally opposite – lucky we had understanding publishers!

One event we all remember, was that it was just before Christmas and Mum and Dad were staying at their Bach in Orewa. Mum decided to go for a late-night walk, where no one realised she knocked on a neighbour’s door. From what we can gather and what she later told us, it sounded like she had walked a long way down a train line; she’d had a fall and cut her leg. Although thankfully her injuries were superficial, it forced us to get together as a family and talk about what to do next. My wife and I looked at dementia care options close to Orewa and we are really impressed by the level of real, genuine care provided, and I thought this isn’t the end of the world.

Although as a family we supported the idea of Mum going into care, Dad decided to care for Mum at home.

What do you think the biggest impact has been?
The biggest impact has been on my father. I can’t imagine what it’s like to have your partner of 50 years kind of slipping away from you – they’re there but they’re not. They’re different. He’s looked after her for five years and he’s done an outstanding job throughout the whole process.

As a son, it’s weird for me as well. Being a mother was one role Alison was for me, however she was my business partner and my mentor – which I’ve only just realised recently. It’s strange. It was nice to be able to ring mum and chat about work, this, that and the other. I really enjoyed that.

What have you learned about dementia?
I don’t think any two experiences are the same. You know where it’s ultimately heading, however it’s not linear. No day is the same. One difference with mum is that she was very chatty, however she is less communicative and unable to express if she’s in discomfort. You can see it, but she can’t tell you what it was. I’ve visited for entire weekends and she said all of three words. But then some weekends she can suddenly rattle off complete sentences. It’s constantly changing. I didn’t realise that about dementia.

How do you cope with the ongoing changes?
It’s a journey and we have learned to take it how it comes. I’ve learned to be patient and to appreciate doing things at Mum’s pace.

I haven’t personally experienced any outrageous or aggressive behaviour from her; however, I know her two sisters have. They have found it really hard to take, especially the change in her personality. I think they keep wanting to see more of the old Alison and that’s led to a couple of sticky moments.

I’ve learned that you just have to take it how it comes. If she wants to sit on the couch all day, then you let her do that. It’s all right.

How well do you think NZers care for people with dementia?
Everyone who’s cared for Mum throughout this journey have been awesome. Mum’s now moved into full-time psychogeriatric care and it’s another step in the journey. She seems happy and is in a lovely place with attentive and caring staff so that’s the main thing.

I think you can leave it too late to go into care. I admire all the care my father provided for Mum; however, I wonder if it was the right way to go? I wonder if they could have spent more quality time together if she had of gone into care earlier.

I can understand that it was a hard decision for my Dad to make – as her partner of 50 years, it’s never going to be an easy thing. But he is like his old self now. The caring role took a toll on his physical and mental well-being. He’s getting some more sleep and looking more like himself now.

Before Mum went into full-time care, we found the platinum community centre in Orewa for respite care. She went there for the odd day in the early stages and then more frequently as time progressed. They were fantastic. Dad also got some in home care. Mum didn’t like showering anymore – something she loved became quite an exercise for her. So, carers would come in and help and do an amazing job. I think if we want people to be able to manage at home, then we need more respite care services like these.

What’s the one thing you want people to know about dementia?

I feel like there’s a stigma attached to dementia and I don’t think there needs to be – there’s nothing you can do about it. It’s not something you wish or bring upon yourself. And there’s going to be a lot more of it, so I think we probably need to be talking (about it) more. It’s been amazing how many people I’ve spoken to since who have shared their stories. So many have been touched by it.

I think it’s also important to have a plan. I don’t know what discussions Mum and Dad have had. Perhaps they did have an arrangement. While I know they had planned for all sorts of things in their retirement; I’m not sure dementia was one of them.

I think there is a real need to encourage people to talk about it. Ask what if? Have a plan and talk about your wishes with your family.

I read the book Being Mortal, by Atul Gawande and found that to be very helpful. Although it’s more about palliative care, it reminds us to have a plan and communicate that plan. If your loved ones don’t know, then it’s makes the decisions they make even more difficult.

Simon Holst and his mum Alison are two of New Zealand’s best-loved cooking personalities. We appreciate him taking the time to speak with us following his appearance at the NZACA conference.