The Elder Interview: Christina Macdonald, Author of Dementia Care, A Guide

Christina Macdonald is the author of ‘Dementia Care: A Guide’. We talk to her about what inspired her to write her book and the importance of thinking and planning ahead when your loved one has had a diagnosis of dementia.

My late mother Hazel had vascular dementia for nine years. She was officially diagnosed in 2009 but looking back I can see now that she probably had it for a couple of years before that. When she was first diagnosed, dementia wasn’t really in the media and it wasn’t being talked about quite so much. The GP who diagnosed her said to me, ‘don’t leave it too long before you put things in place’ and advised I make arrangements for the future. She was given medication and then we were pretty much left on our own. I remember feeling very isolated and not knowing what to do next.

That was the main reason I wanted to write the book. I wanted to document my mother’s dementia and say ‘this is what I learned’ – this is what I experienced and this is what I did. Some things I got right, some things in hindsight I might have done differently. Every experience of dementia is different but there are common threads that run through it – it was a case of this worked for me, it might work for you?

I wanted to look at the whole journey of dementia in the book – from diagnosis to the stage where someone needs 24-hour care. It can be years between diagnosis and that point; what tends to happen is you start out feeling very lost – and the book talks a lot about planning ahead and coping day to day. In the beginning the person might just need a little help with meal preparation and things like housework, but they are essentially the same person. Gradually over time their needs increase and I talk a lot about the importance of anticipating this and thinking ahead.

If you look ahead then you can make choices in a calm and measured way, and hopefully be proactive and not have to make decisions reactively. It is a good idea to be thinking and planning from an early point – putting things into place like Lasting Power of Attorney (there are two – Property & Finance and Health & Welfare), which you should definitely arrange earlier rather than later, while the person still has capacity and can be part of the care decisions. In the rest of life, you generally have a plan – what you’re going to do, when and why, and it should really be the same here. But dementia is a very unpredictable illness so it’s not about being rigid and you do need to be flexible too – but it’s about accepting the situation and the fact it’s going to get more challenging.

The book starts by talking about the types of dementia and what they are – dementia just being an umbrella term for cognitive impairment, with different causes, such as Alzheimer’s disease. From there on it gets very practical; looking at everything from organising paperwork and keeping the person safe at home to what to do when things change, benefits and seeking legal help. The book naturally goes on the journey through dementia from early to late stage. There is a lot of information in the book that I didn’t know at first. For example, if you get a diagnosis of dementia you have a legal obligation to let the DVLA know – nobody told me that.

I also wanted the book to offer reassurance as well as practical guidance – the whole dementia journey is very emotional for everyone. You’re going through bereavement before it has even happened and although there are glimpses of the person you knew it is always changing. Writing the book was therapeutic, but I also felt strongly about getting the message across that people shouldn’t feel guilty for trying to do the right thing. As carers, we make choices that are incredibly difficult – but you don’t need to feel guilty if you are doing the best thing you can.

It seems like more and more people have a connection with dementia in some way now than they did perhaps ten years ago. I think there is still a common belief is that it just affects memory though among many people – I certainly had that view before my mum was diagnosed. And it’s understandable as it can be the most common and obvious thing you notice with your relative initially. But dementia also affects mood and behaviour. Mum was like this – laughing and happy one minute, and sad the next. Moments can come and go very quickly with dementia. We clashed a few times as she would say hurtful and upsetting things – and when you’re looking after someone and that happens you do think, “what is going on?” In most cases it is the disease, but even if you understand this, you’re still going to get days when it’s overwhelming.

I kept the book deliberately short because one thing carers don’t have a lot of is time – it’s not a big bible of care! But I want people to feel that someone else has been through the same journey. I struggled a lot with this throughout my mum’s illness. I had many well meaning friends who didn’t really understand the extent of the situation. They would say things like “You can’t put your life on hold” and “come out and have some wine!” and that was the last thing I needed to hear or do. To some extent I did have to put my life on hold – and I wasn’t going to put my mum second to anything. So that kind of naivety irritated me quite a bit.