Living with dementia

Brain disease with memory loss due to Dementia and Alzheimer's illness with the medical icon of an autumn season color tree in the shape of a human head and brain losing leaves as a concept of intelligence decline.

My grandmother had Alzheimer’s and was living with dementia in her later years. However, I remember she would forget important things, such as how to eat, then would occasionally acknowledge something didn’t feel quite right with her memory. She would also get upset and cry. One day, I turned up at my grandparents’ home to find she had ripped up all of her precious family photos. My grandfather had tried to stop her but she was uncharacteristically angry, so he was unable to. To be honest, it was incredibly hard to watch at times and, as a family, we all felt so helpless. This actually took place 30 years ago and I remember there really wasn’t enough research or guidance available then. However, these days thanks to organisations, such as the UK’s leading dementia charity, Alzheimer’s Society, there is more understanding and support available to all.

grandmother living with dementia

Although dementia may affect older adults in the main, such as my grandmother who has long since passed away, it’s not known as a normal part of ageing. This paper from the Care Policy and Evaluation Centre at The London School of Economics and Political Science shows there were almost 885,000 older people with dementia in the UK in 2019. However, it seems this number looks set to escalate in the near future as the projections in this paper reveal dementia could reach 1 million in the UK by 2024.

What is dementia?

This term refers to a group of symptoms, which are caused by damage to the brain. There can be a variety of causes, however Alzheimer’s disease tends to be the most common. Symptoms for those living with dementia may include memory loss, confusion, difficulties with language and mood changes. In fact, these sorts of changes tend to be small to start, but they can progress to affect daily life.

The word 'Dementia" on a torn piece of paper that rests on an old weathered piece of wood.  The old paint is flaking off of the wood surface to help convey the feeling of age.

The symptoms

The different types of dementia tends to affect people differently, especially in the early stages. A person with dementia will have cognitive symptoms (to do with thinking or memory) and may struggle with remembering recent events, although can easily recall things that happened in the past. They may also find it hard to follow conversations or feel confused even when in a familiar environment. Anyone who is worried that their memory is getting noticeably worse, or who has other symptoms, should discuss their concerns with the GP.

The Restaurant That Makes Mistakes

Back in June 2019, I watched The Restaurant That Makes Mistakes on Channel 4 – did you see this? Alzheimer’s Society was a partner in this ground-breaking experiment and I found it an absolute eye-opener. Fourteen volunteers, all living with dementia in some form, took part and their ages ranged greatly, from early 20s to 70s. It was worth watching because it showcased the UK’s first ever restaurant staffed by Michelin-starred chef Josh Eggleton and people living with dementia.

Living with dementia: Avril

Avril living with dementia
Avril Staunton

Recently, I caught up with former obstetrics and gynaecology consultant Avril Staunton who is in her 60s and living with dementia. If you watched The Restaurant That Made Mistakes mentioned above, you’ll probably remember her. This is why I had to get in touch to find out more about her story:

Tell me about your successful career

I graduated with an Honours MB ChB in Liverpool in 1978 but took all my medical qualifications twice, first in the UK and then, when I moved to Germany, retook them all in German, swiftly learning the language. I really enjoyed the hard work I had to do; it was like being a child again. I loved it and wanted to learn new things every day.

Tell me about your husband

He’s a really good man. He does all sorts of things at the moment – teaching and working and he’s really enjoying it. We do all sorts of things together including mountain climbing and exploring together. I’m missing it at the moment; lockdown was awful. During the pandemic, Michael is helping out as a tutor for third-year medical students. He has also volunteered for the vaccination programme.

How did you find out you had dementia?

It’s easy looking back in hindsight but, for a few years, I had been getting lost or taking a long time to come home after work. We put it down to tiredness. Michael took me to the doctor then, but we just thought I had burnout. It was then that I got offered a job in the Black Forest but my typing skills were not what they were. From there, I went back, saw the GP and got referred from there to the Memory Clinic.

Avril and Michael living with dementia
Avril and Michael at home planning their next trip

What happened next?

Michael didn’t believe the diagnosis and didn’t want to. He was annoyed and didn’t accept it easily. Eventually with the help of Michael, I was upset, but I just carried on. Shortly after Michael was diagnosed with cancer and was really quite ill. He had to stay with his daughter to recuperate.

How did Michael deal with it?

When his health improved he came back and we set a plan into the motion. We both got fitter and started going on expeditions. Michael’s background was mountaineering and believes in life as a self-fulfilling prophesy. The treks and fitness training and interaction with the team members of the expeditions to Africa and South America, and leading the stretching exercises helped restore self-confidence. Michael’s emphasis is on what you can do, rather than what you can’t.

Which symptoms did you have to start and are these developing/changing?

Initially the menopause and then ‘burnout’ were thought to be the probable causes of my symptoms. I also lost a lot of numeracy and directional skills which began to deteriorate years before the diagnosis was made. Looking back, self confidence began to deteriorate, too. 

How do your symptoms affect others?

We both try and be conscientious around each other because it’s hard facing things you can no longer do. Michael helps with this though. I’ve lost contact with many friends too, following the diagnosis.  Fortunately, there are notable exceptions.  School friends, Angela and Tina and Jill, have been brilliant and have taken me on holiday and Nicki who used to help me with my children has kept in contact. Michael’s daughter, Camilla, has been a great encourager and facilitator. The ‘new’ friends from the treks and The Restaurant the makes Mistakes have remained.

How has Michael helped you in terms of living with dementia?

Michael answers the telephone and helps with emails and around the house. This can be difficult for me, and we’re sensitive to each other’s feelings about this. We both reject the term “carer”. Michael is my husband and he gives me as much autonomy as possible. 

How difficult do you find day-to-day tasks while living with dementia?

Michael does wonderful cooking. I still enjoy it, too, but maybe I don’t cook as well as I used to. I still do things like washing up which I don’t mind at all and gives me something to do

Can you offer any advice to those who find they are diagnosed with early onset dementia?

Being able to join something as wonderful as The Restaurant That Makes mistakes. Everything all together made it such a brilliant experience – the challenge, the people – I didn’t want to leave! Getting a precise diagnosis was also an important step as knowing exactly what was going on was important. Everybody thinks they know about Alzheimer’s and dementia but everyone is different and everyone’s experience is different.

How has the Alzheimer’s Society helped you living with dementia since your diagnosis?

We had more involvement with them early on, and when The Restaurant That Makes Mistakes was being made. For anyone who needs advice, they can speak to a Dementia Adviser or look on the website for advice.

What are you plans for living with dementia for the future?

We’re learning to speak French together to help stimulate the brain a bit. I also volunteer a lot for research and everything else I can volunteer for. Of course, we’re also looking forward to resuming our adventures too. My school friends are taking me walking on Dartmoor for a week in July. We are planning a trek to the summit of Mulhacen in the Sierra Nevada, southern Spain in September.

How to reduce your risk of dementia

There are plenty of ways in which you can help reduce your own risk although getting older is the biggest factor. Tim Beanland, head of knowledge management at Alzheimer’s Society, says: “Regular physical activity is one of the best ways to reduce your risk of dementia. It’s good for your heart, circulation, weight and mental wellbeing. Eating a healthy, balanced diet may help too.   If you smoke, you’re putting yourself at much higher risk of dementia and drinking too much alcohol harms the cells in your brain and increases your risk of dementia.

Recovered memories inscription on the black arrow showing the direction.

“Keeping your mind active helps to keep up your mental skills. This could involve learning a new language or perhaps playing board games. If you or someone close to you appears to be having problems with their memory or thinking, they can get help from their GP, who will try to find out the cause.”

How I help to reduce my chances

keeping fit living with dementia

I do take physical activity seriously and I really enjoy it – as you may already know, Pilates and walking are my favourite forms of exercise. And I also try to eat a healthy, balanced diet and just recently became vegetarian. I keep my brain active with my work and try to enjoy life as much as possible – I don’t really know if the latter lessens the risk, but it certainly works for my mental wellbeing.

What you can do to help

If you can donate or fundraise in any way, this will help the Alzheimer’s Society’s campaign for change. As a result, they can fund research to find a cure and continue to support people living with dementia today. For Dementia Action Week I would urge you to please sign their petition to #CureTheCareSystem. Alzheimer’s Society is calling on the Government to ‘cure the care system’, which includes improving the quality of care that people receive. This way, nearly one million people with dementia and their families who are currently struggling can get the support and care they need and deserve. I’ve already signed and hope you will too.

To support Dementia Action Week (17-23 May 2021) visit alzheimers.org.uk/DAW, and for information, advice and support, call Alzheimer’s Society Dementia Connect support line (0333 150 345) or visit their website.