I’m one of an estimated 120,000 people with dementia living alone in the UK and in 20 years, that number is set to double.
The loneliness I felt after my diagnosis four years ago was crippling. I left the consultant’s room with the words, ‘you won’t be here in five years, Mr Lyttle’, ringing in my ears. I lost my self-esteem, I felt worthless – as a father, grandfather, brother. I felt incredibly isolated and my life began to spiral out of control.
I resolved to take my own life. I wrote letters to my family and gave myself a week to get everything in order. Just days after making that decision, I was contacted by the Alzheimer’s Society inviting me to an event. That was the turning point that saved my life – a small act of kindness from a stranger.
I’m not alone in my experience. Over half of people living with dementia say they’ve felt lonely or isolated. Being forgotten and ignored by people, being avoided in the street – that’s the stark reality of living with dementia for too many people in today’s society.
I’m lucky that I’ve stayed in touch with most of my friends, and they’ve been a huge help in making me feel like me still. But I’ve also lost touch with people along the way and I’ve had people quite literally walk away from me. I can be having a conversation, and then as soon as the person finds out I have dementia, you see them clam up or make an excuse to leave as quickly as possible. I’ve even had people crossing the road to avoid me. That’s why Dementia Action Week is so important – it’s all about the little things that people can do in their day-to-day lives, even if it’s just taking the time to talk to me, that make such a difference.
Dementia should not define a person. People that know me know I’m still me and that means the world. But even then, I get the odd person who thinks they need to speak to me like I’m a five-year-old. It’s condescending and a horrible thing to experience.
I even had someone come up to me in the street and say, ‘oh, you’re the dementia man’. My friend stepped in and said ‘his name is Peter – please don’t define him by his dementia’. I was so grateful for him stepping in – by changing the way people think about dementia we can make sure people with dementia can live as part of an inclusive society.
I often feel I have to explain myself or my behaviour so that people will understand me – it shouldn’t have to be that way. I’m determined that I will still try and do the things I love and campaigns like Dementia Action Week is doing so much to make this possible, by creating a dementia-friendly nation, where individuals, communities and businesses understand and know how to support people with dementia.
But for one in six people with dementia, worry of how they’ll be thought of by others stops them from doing what they want, so there’s still so much more to be done to change perceptions of the condition.
It’s clear that there’s still a stigma around dementia, with people feeling awkward or nervous, worrying whether they’ll say the wrong thing, or just not knowing enough about the condition. The majority of the public think people with dementia need constant care to do even simple tasks – I’m proof that that’s just not true. With the support and understanding from those around me, I’m able to live a good life with dementia.
Everyone with dementia can have that same opportunity with a bit more understanding.
People need to know that with more understanding and support, people like me don’t have to feel ignored. We don’t have to feel useless. And we don’t have to feel like we don’t have a purpose anymore.
People with dementia are still people – that’s one thing I’d like people to remember.
Groups like the Alzheimer’s Society have been a safety net for me and was somewhere to turn to when I felt completely lost and alone. Like so many others after my diagnosis, I didn’t feel part of my community, I felt as though people didn’t want to know. After just half an hour of speaking to Elaine, it was like someone turned a light on. Not only have they saved my life, I’ve got my confidence back and I know I’ve got the support I need, if I ever need it.
Now I’m delighted to say that I’ve never been busier. I started up a café for younger people with dementia in my area because I knew there needed to be more for people like me. For people diagnosed at a younger age, we still have mortgages, people relying on us, so I wanted to help provide support and information, so that people with dementia felt like someone was on their side.
I still get lonely, but by helping others through the café, I’ve helped myself more than I ever thought. I feel part of the community again. We all need to feel wanted, but too many people with dementia don’t.
Society needs to shift the way it thinks towards dementia. Dementia Action Week is calling on everyone to start a conversation and take on a small action to make society more welcoming and supportive for people with dementia.
There are events taking place across England, Wales and Northern Ireland to raise awareness of dementia and provide answers to questions people don’t feel comfortable asking. If you know someone living with dementia, give them a ring or pop round for a cup of tea – it will make their day I’m sure.
Whatever you choose to do this week and beyond, all I hope is that people realise that people with dementia are still just people – please don’t be afraid to talk to me and ask me anything. Simply reaching out and talking about dementia really will make the world of difference.
For more information on Dementia Action Week, visit alzheimers.org.uk/DAW
Useful websites and helplines:
- Mind, open Monday to Friday, 9am-6pm on 0300 123 3393
- Samaritans offers a listening service which is open 24 hours a day, on 116 123 (UK and ROI - this number is FREE to call and will not appear on your phone bill.)
- The Mix is a free support service for people under 25. Call 0808 808 4994 or email: help@themix.org.uk
- Rethink Mental Illness offers practical help through its advice line which can be reached on 0300 5000 927 (open Monday to Friday 10am-4pm). More info can be found on www.rethink.org.