In October 2021, my Mum passed away. She had a rare brain disease called Behavioural Variant Frontal Temporal Dementia, which is early-onset dementia.

Many of you quite possibly have grandparents involved in your lives and your children’s lives and so this is a public service announcement to educate you about some of the signs and symptoms of different dementias and brain diseases that I hope would not affect you, or anyone you know, but the reality is, it might do.

I can’t share with you all the experience and knowledge that I have gained from 7 years with my Mum, but I’m going to share some signs and symptoms with you that you can store away in the back of your mind.

If you have relatives, or maybe even colleagues, who seem to be going through a shift in their personality in their behaviour (it’s not always about memory) then this might be information that you’ll need to draw upon in the future.

My mum was just one person but the reason why I think her case is so interesting to share is that it didn’t follow the route of ‘traditional’ dementia. To this day, I still have people commenting that it must have been so hard as she forgot who I was or didn’t know where she was or why she was there. Yet none of those things happened to us. There are signs and symptoms that I think we’re all probably aware of that relate to dementia such as changes in memory, or signs of cognitive impairment. Those are important signs in helping to indicate that something might be wrong. They can also be signs that someone’s tired, maybe stressed out and overworked as well.

When my Mum was first diagnosed, I was so stressed out, I ended up going to the doctors thinking that I had something like what she did! It was stress-induced, so some of what I will share with you can easily be explained in other ways.  The key thing is an identifiable change and there isn’t some other way of explaining it away. We’ve exhausted all our possible excuses.

Being the mental health professional that I am, of course, I documented almost everything that happened regarding the changes that my mum went through. I’ve got them broken down into medical, mental, physical, language, social and emotional. Not all of these would be relevant when you are considering your friends or relatives.

My Mum’s dementia was known as an early-onset dementia – so below the age of 65. I want you to have an awareness of this not just for your elderly grandparents, but actually, for your co-workers, your colleagues, and aunts and uncles because let’s face it, these different sorts of age-related brain diseases aren’t going away.  With my Mum, the changes started with the language, social and emotional aspects. The language change was initially obvious because she was always a little bit up and down when it came to her emotions anyway. Emotional dysregulation was more difficult to identify as a symptom, even though it was a symptom and that became clearer as time went on.

In the very beginning, she developed some strange habits around humming. This is difficult to describe because all I can say is it was a tuneless humming that drove me nuts! She knew how to sing quite well. But she would hum, in a monotone way. When you asked her why she was doing it, she wouldn’t know. She also began clicking her tongue against her teeth. She knew that she was doing it if you highlighted it to her, but she couldn’t explain why she was doing it. Some of her social skills were diminishing and at times, her responses were quite parrot-like. I remember one time we were sitting in her car, and she’d picked up a flyer that said something about always eating your five fruit and veg a day. I picked it up and said, “Oh, I think they’re saying that now you have to eat seven fruit and veg a day.” Then I put it back down again. She responded by saying “These days, they’re saying you have to eat seven fruit and veg a day.” I asked, “Why are you saying it again?” She knew that she’d done it and was as confused as I was. She had some consciousness that she was beginning to behave in a different way, but she also couldn’t stop herself from doing it. She wouldn’t necessarily have awareness of it unless you drew her attention to it.

I started to bring her to social events to help keep those skills up and encourage her to keep talking. It sounds like a lovely idea, but it was quite stressful as she had lost a lot of her normal social etiquette. For example, if we went out for dinner, she might really enjoy the food and then pick the plate up and lick the plate or lick her knife. If you do that it doesn’t mean you’ve got a problem! The problem was that’s not how she used to be. I can’t emphasise that enough. If you know, someone who hums out of tune, and licks their plate after they’ve eaten their dinner, they are quite possibly just living their best life! But if they didn’t previously do that and you have a reaction of shock, then it’s a change in their behaviour.

She began to make inappropriate comments and would struggle to empathise or to see things from other people’s perspectives, which meant that she could come across as being rude and hurtful. There was a distinct lack of concentration. Over time that became more pronounced and problematic. She angered more quickly, and a lot more easily than she had done in the past. In the past, anger had been a feature, but now it was on a whole new level. Her blame game had really ramped up.

All these things were the things that initially prompted me to take her to the doctors to ask if they could do a dementia test, which they did. Of course, she aced it! She knew who the Prime Minister was, she knew what day of the week it was. The things that are typically connected to dementia weren’t showing up for her. But there was something not quite right.  She ended up having a CT scan (which was not the right kind of scan – you need an MRI) which revealed that there were some spaces in her brain that should not be there. This was the very first thing that got us onto the right track. We saw a neurologist, who was then able to direct us to the Royal Free Hospital in London.

It was about two years until we got to the Royal Free so by then there were more symptoms that were showing up.  In her case, the disease progressed quickly. For frontal temporal dementia, the lifespan or life expectancy after diagnosis is anywhere between 3 and 15 years. In our case, it was five to seven years because it took a couple of years for the official diagnosis to take place. The other symptoms that showed up included – spending significant amounts of money. Her habits and attitude about money change significantly. She was booking holidays, buying cars, and there were lots of home improvements. This all resulted in significant levels of debt, which were messy and complicated and took up quite a lot of time.

There were accusations of stealing and poisoning.  She was, at times, forgetful but nothing too notable. There was one incident where she didn’t recognise me. But it seemed more like I was misplaced at that moment in time, or I was in a different context which confused her.  Her short-term memory was the one that seemed to suffer the most. If you told her something ‘Do you remember I said this to you last week?’, she would maybe struggle with that. Decisions were illogical and irrational. She certainly created some messy situations for me to resolve!

We had some inappropriate behaviours and repetitive behaviours. For example, she bought a fidget spinner for my sister and then didn’t give it to her because the repetitive movement of the fidget spinner just completely consumed her for quite a long time.  Some hoarding behaviours began and the house became very cluttered and chaotic. Her attitude towards personal hygiene changed as well. She was less easy to persuade to do things because she became much more stubborn and much less motivated.  She was scammed a couple of times and would get up-sold to buy extra things that she didn’t need. For someone who used to work as an administrator, her planning and organising just completely went out the window.

As time went on, I saw more instances of her rushing when she was eating or drinking and then starting to have some choking fits. She then started to develop frequent bladder infections.  I noticed too, that she seemed to have an inability to identify pain in her body. So she might become sunburned for example, and not notice that her skin was very sore and blistered.  She didn’t know when she was full up from eating and subsequently put on quite a lot of weight.  There was also a kind of tremor, but it was perhaps more like agitation with things like doing up zips. She struggled to identify when she was tired. Sometimes she would look exhausted and start falling asleep wherever she was because she hadn’t realised how much all that bulldozing around had worn her out.

My grandparents are still alive and very healthy. So, you can imagine that, for them to think that their daughter had a type of dementia just did not make any sense to them whatsoever! It meant that there were people within the family that were often looking to minimise her symptoms or brush them under the carpet. The reality of it was very sad and quite difficult to face up to. But there came a point where these things were undeniable. It was also dangerous to keep continuing as normal, for example, she was having more car accidents and I had to write to the DVLA and tell them to revoke her licence. This did not go down well with anybody but was also super important to do.

There was a point at which my Mum was still having my sister for overnight stays. My sister has severe epilepsy and high-level special needs. For my mum to be caring for my sister, was a bad idea. I had to report that to social services. There were lots of unpleasant steps that had to be taken to keep everybody as safe as possible. That was difficult, because those sorts of decisions can really harm and fracture relationships in your family. If this related to a colleague the right approach to a situation is an HR perspective. My HR perspective on these things is, firstly, can we retrain? Can we provide support for that person to do the thing that they should be doing? Can we reallocate this role to somebody else, and then we must think about taking that role away from them completely?

That was how I managed the situation with my Mum too.  In the beginning, I was asking myself ‘can she keep doing the things that she’s enjoyed doing, but with, some extra help, or can I train her to do these things in a simpler way?’ Then eventually, the disease progressed to a point where it became untenable for her to continue doing many of the things that she used to once enjoy. Her balance and coordination began to change drastically in a short space of time. She began falling over more and suffering some severe injuries including broken bones, bangs on the head, and a loss of spatial awareness. There were also changes with her facial expressions. They seemed to disappear. It became difficult to deny that something strange was happening because you don’t realise how much significance you give things like the way a person’s face is moving.

Those different expressions are communication and without them someone is a blank canvas. She struggled to be able to do things in the right order, and sequence and her handwriting started to slip. For a long time, she then was wheelchair-bound, and she became more disengaged with life. One blessing I would say, with this disease, or at least how it manifested itself in my Mum was that she wasn’t all that fussed about any of this stuff happening. There was very little distress for her. That was a big win – that she had complete apathy about it. Approximately one in 14 people aged over 65 get some form of dementia. We all know at least 14 people, and 65 years is not that old. There’s a lesser percentage of people who are affected by an early onset dementia, thank goodness.

As we age there’s a greater risk and chance of brain disease developing. If you have children and young people who are spending time, particularly with grandparents, know the symptoms to look out for. Remember, the key thing is, have they changed? Is it different to how they were before? Someone could have said my Mum was depressed because she retired. In fact, a psychiatrist did assess my Mum and said that she was simply eccentric and that there was nothing to worry about.  But if this is someone that you know well you’re going to know when something’s a bit off. It’s important that you safeguard them, safeguard yourself and safeguard the children that they might be caring for.

So here are the steps to take:

Firstly, document everything. Write down what you think you’re seeing, because later, providing a history of what changes you have identified might be important and useful.

If you end up accompanying this person (or as happened initially in my case going to their GP behind their back) you can state your concerns clearly and give some accurate context and examples.

Then follow those steps that I mentioned like the HR process. We don’t need to be shipping people off into a care home just because they’ve locked themselves out of the house twice. But what we might want to do is stick a sign up on the inside of the front door, saying ‘Have you got your keys?’

My Mum’s house ended up with laminated, bold printed sheets all over the place that we made in my office to remind her to switch off the oven, pick up her keys, lock the front door at night and switch the lights off so that she was able to continue to live independently for as long as possible. You also must get realistic about when those sorts of low-level areas of support just aren’t working anymore.

If their GP doesn’t seem to take things as seriously as you might like them to speak to another GP. I refused to leave the office of a psychiatrist who had told me that she was fine – That’s how we got the CT scan that leads to the neurology appointment.

Push. You’re going to have to fight for this person because they maybe don’t have it in them, or the foresight to know that they need to fight for themselves. In the same way that you might advocate for your children or the children that you teach, you may need to do this for your parents, your aunt’s, your uncle’s or your colleagues who are showing signs of brain changes.

The final thing I will say is: Have awkward conversations. Talk about things like power of attorney, discover out if they have a funeral plan or a will because I can guarantee you that future you will be glad that you took those steps with that person. One of the most difficult things that I had to do with my Mum was talk about her advanced decision to refuse treatment before things got really bad. Those last couple of months were one of the most difficult experiences of my whole life. It would have been a lot more stressful if we hadn’t already put the plans in place to say what wishes she had from a medical perspective.

If somebody loses capacity later down the line, you won’t be able to go back and put those plans in place later and you could end up in court arguing with your family or medical professionals.

Finally, thank you all so much for reading. If you are in any way affected by someone in your own life, or what I’ve shared with you today, then I would like to invite you to make a donation to the Rare Brain Support Fund, which helps to manage a couple of different charities both providing support to families and relatives who have a member of their family with a brain disease.

By Gemma Bailey

www.NLP4Kids.org/gemma-bailey