Dementia friendly: exercise as a lifeline

Imagine that dementia first hits people in all sorts of weird and not-so-wonderful ways, and that was certainly the case with me.

I’m now 49-years old and I was just 45 when I was stopped in my tracks and diagnosed with dementia in December 2015. That was when confirmation arrived, but it had been creeping up on me a lot earlier. In fact, looking back, I’m still able to pinpoint the time I first noticed things were going awry. 

I was a district nurse and, towards the end of 2014, I was having problems when I was working. I just couldn’t remember how to do basic admin, the elementary paperwork – the sort of everyday stuff that you take in your stride.

It’s vital to doing your job properly. For me, as a district nurse, I had to prove I was really getting about visiting patients and I was always meticulous when filling out forms. I couldn’t remember how to write down numbers at first, which was quite odd because it was always something that I just did pretty much effortlessly. 

Then in 2015, I started falling over a lot. I seemed to keel over all the time – over nothing – and I was bumping into things and just feeling unsteady. I couldn’t stand still. It was as if I was drunk all the time, even though I hadn’t touched a drop of alcohol. 

Then my speech started slurring and I kept getting a pins-and-needles sensation.

I thought, multiple sclerosis. My doctor thought it could be a brain tumour. The hospital thought that I’d had a stroke. As you can imagine, it was all very confusing. I had scans and nothing came back. They were all-clear. I couldn’t help think that I was wasting the doctor’s time.

I went back to work but I couldn’t remember anything, which was very unnerving because I used to have a really hot memory.

I went back to my doctor and he insisted there was nothing wrong, but I was referred by my GP to my local memory clinic. I failed my first test and then I had another two months later, but I failed it again. It was then that I was diagnosed with dementia.

To be honest, I was quite relieved to finally know where I stood because I knew from many years’ experience as a nurse that it’s better to know these things than be uncertain.

Expert help from physios

In 2017 I had another brain scan and a lumbar puncture, which showed Alzheimer’s as well. But, in another twist, the scans also showed that in 2015 I had had a stroke in hospital.

It’s been difficult to take, but I’ve cracked on and that’s why being supported by a physiotherapist and going to the gym have been a lifeline. 

It’s also why I helped the Alzheimer’s Society launch its brilliant Dementia Friendly Sport and Physical Activity Guide, which they produced with Sport England.

When I was first diagnosed, I was walking fine but I gradually started having mobility issues. Last year, it got so bad that I was forced to work with two sticks and I find it really hard to balance.

I’ve learned to cope with it, but the expert help from a neuro-physiotherapist and physiotherapist has been great.

My physiotherapist referred me to a gym and the fall prevention group for a 36-week course of intensive exercise, to strengthen my legs and arms. Not only am I clued up on what to do if I fall, but my physical health has improved. I’m now back to walking with one stick, which is a real achievement. But if I’m really tired, I have to pay attention to what my brain is saying and ease off if I’m not feeling up to exercising.

My memory seems to be a lot better, compared to when I was first diagnosed as well, which is a massive boost. My consultant seems to think my pathways in the brain are better because I’m working so hard at keeping my brain active.

Sometime it’s a tad arduous. My form of dementia is posterior cortical atrophy, or PCA. With PCA, people can end up in wheelchairs and that really scares me.

I keep testing myself – all the things I think I can’t do, I just push past. I’m a bit stubborn that way. I’m determined to fight dementia with every sinew of my body

Jumping to the wrong conclusions

My physiotherapist has been a great ally. She got me up and running by sorting out an exercise routine for me with a personal trainer at the gym and I’ve got an exercise routine for home as well just in case I can’t get to the gym. She has been worth her weight in gold to me – because she had faith in me. She actually believed in me. 

I know from personal experience that when it comes to dementia, people jump to conclusions – often the wrong conclusions. They just don’t think you can remember anything. 

But my physiotherapist didn’t presume anything and tried to understand as best she could what it was like having dementia. She is based in Folkestone and we met at the gym. She has a belt-and-braces approach to working with me. As well as explaining things, she would supplement that with diagrams, which I’ve still got at home to refer to, just in case I get stuck. She also went through things with the gym staff, which meant it was a real team effort.

At the beginning my balance was really bad, so I needed two of them to get me on the bike because I was so unsteady. I’m not particularly keen on having people do things for me but they were great at helping me be independent. I need to work out my own ways of getting on and off the bike in a safe way and they respected that. For me it was a case of just go for it and hope for the best. That isn’t everyone’s cup of tea, especially as it didn’t look too graceful, but it worked for me. 

But as time went on, my mobility improved and it was so nice when my physiotherapist saw me a couple of months later and told me how pleased she was with me. That positivity meant a lot.

At the gym, my personal trainer also started changing my routine, so I did more work on the treadmill, which I found hard. That’s because my brain keeps going when the machine comes to a halt. It takes a while for everything to be synced.

Patience is key

Health professionals believing in you is vital. Some will dismiss you because you have dementia. They will presume your memory is not up to much, so they won’t really help you. But they just need to be patient and work with you, because there’s always memory in there somewhere – it’s just a matter of working out different ways to bring it to the fore.

Gym work is really important to me both mentally and physically. Going to the gym is almost like a safe haven. Due to dementia, my senses are amplified and I can’t always tell whether someone is behind me or not when I’m walking, which is quite scary. The sound of trees and rustling leaves makes me think people are behind me, so the gym feels more secure. Still, though, I don’t like going to gym when it’s too busy. I try to go mid-afternoon when it’s quieter.

The work that Alzheimer’s Society is doing to encourage the sport and physical activity industry to remove barriers that may impede people with dementia from remaining active is great. There’s no reason anyone should be prevented from staying active just because they’ve had a dementia diagnosis.

It’s important for people who run our gyms and leisure facilities to think about access, noise and make sure staff are dementia-friendly, so they understand what the condition entails. 

Living life to the full

Alzheimer’s Society says what’s good for the heart is good for the head. Judging by my own experiences in my local gym, I’m inclined to agree. People baulk at the word ‘exercise’ and I know some find it hard going but, for me, it’s really important to get out there. I actually think it’s keeping my dementia at bay.

Dementia is one of the greatest challenges facing Britain. There are 850,000 people living with dementia in the UK and there should be no barriers to remaining active.

I don’t want to be just sitting at home watching TV. Life’s too valuable. I chose not to give up. I’m still relatively young and I just want to get as much out of the 30 years ahead of me as I can, before my dementia gets worse.  People can’t understand how I can be so positive but I’m determined to live life to the full. 

Love Activity, Hate Exercise

Physical inactivity is a major public health problem and something that we know CSP members want to tackle. Only 50 per cent of UK adults do the recommended minimum of 150 minutes of moderate to vigorous exercise each week.  Our Love activity, Hate exercise? campaign draws on insight from patients and members across the profession, including physiotherapists with expertise in physical activity and behaviour change, to help identify barriers that prevent people from being more active.
As healthcare professionals, you as physiotherapy staff have an important role to play in promoting physical activity. With our help, we hope that you can maximise the opportunities to discuss the benefits of physical activity and any barriers to it with your patients, making exercise more accessible to a wider range of people.

We have new resources for you to help patients. To access these, go to your account and select ‘Love activity, Hate exercise?’ under the ‘get involved’ section. You can also subscribe to emails about the campaign.

Implications for practice

• Ask the person what physical activities they used to enjoy. Can you design or help them access similar activities appropriate to their current level?
• Don’t rule out gym work and sports. These are achievable with adjustments or extra support.
• Consider the support you may need to provide in a new environment, such as via a community physio team.
• Problem-solve practical issues or any barriers such as how to use equipment or how to remember the location of their locker.
• Use photos and specific access information.
• Find out if the local gym or sports facility has a Dementia Friends Champion.
• If you run exercise classes, consider how you could make them dementia friendly. For example keep instructions simple and clear, provide seated and standing exercise options, use colour to emphasise targets or stations, and avoid loud music.

What does good dementia-friendly physical activity look like?

• Becoming more dementia friendly means
• Understanding the impact of dementia and how it changes the needs of a person who is looking to access activities
• Considering how the environment, programmes and activities can help people affected by dementia, and taking action to remove barriers
• Improving staff awareness of dementia – increasing their knowledge and understanding, and ensuring that they develop the skills  required to support people affected by dementia
• Making activities accessible to a wide range of people – what is more suitable for people affected by dementia can also be helpful for people with a range of other long-term health conditions
• Supporting all people who may be showing signs of dementia, whether they are members, participants, volunteers or employees.