Updated: Jan 3
This is written by Maria and is based on talks that she and the Fabulous, Forgetful Friends give to professionals in training and members of commissioning and strategy groups
When I was first diagnosed at the age of 57 I was devastated. I didn’t know anything about Dementia. I thought it was an old person’s disease and that I only had about 4 or 5 years to live. It took me two years to come out of the depression. I’m a single Mum of 4 adult daughters and so I also worried about the impact of my condition on them.
Things changed for me when I was first invited to join an activity group. I went there and joined in with others. It made me feel better about myself, especially as I was good at the quizzes! The support worker helped me to feel useful, finding me opportunities to speak publicly and participate. Together Dementia Support helped me then, they help me now and I now help them by being a trustee for the organisation and advocate for people living with Dementia.
I’ve joined a group at Together Dementia Support called Fabulous Forgetful Friends. It has 3 main aims:
to offer a safe space where people can share about common problems, support each other, have a laugh and encourage each other to do things.
to teach others about living well with Dementia.
to enable us to have a say about services that affect us in Manchester.
I haven’t thought before about me having rights, as a person with Dementia, but there are things that I think are unfair or just plain wrong so I’ve thought about those. I’ve turned those wrongs around to think about how we should be treated.
Fabulous Forgetful Friends in lockdown created this video:
So here are my 9 ideas:
1. We have the right to live hopefully and to be encouraged to do so.
A year ago, when I went to see a locum doctor, feeling quite cheerful, he made a point of saying to me
“You do know you won’t get any better, don’t you!”
Now why did he have to say that to me?
I think doctors need to come and meet people with Dementia when we’re at groups or doing our hobbies. They go “by the book” too much, not seeing us as individuals, not knowing about my life and my history with Dementia.
2. We have the right to be treated well, regardless of our age or ability.
I think often there’s an age barrier and that’s why we don’t get treated better.
3. We have the right to attend groups where we live so that we can give and receive support from each other.
I’ve seen people really change through getting out and doing enjoyable activities – one very quiet man has come out of his shell and now takes responsibility for the gardening. These people become part of your life; really important to you.
4. We have the right to receive appropriate support.
Immediately after my diagnosis I was offered a place at a day centre but it really frightened and upset me because the people there were quite poorly – not like me at all. So appropriate support for me might mean meeting with younger people who have Dementia. We should be offered a choice of groups so that we can find the one that suits.
5. We should all be able to access the same services, regardless of where we live.
I know people who live in a different area who have individual support workers who help them to get to meetings and events; but I can’t have that service because it’s not available in Manchester. We should be able to access services in any area or travel to another area if they’ve got something that we’d like to do.
6. We should all have the right to participate in research.
I’m just starting a drug trial which I discovered through Facebook but my friend, Connie, doesn’t use computers and so she doesn’t know about it. Where is the information for her? She wants to try the drug too. It’s not right that doctors don’t tell us about these trials. We shouldn’t be swept under the carpet. Do they think we’re all demented and we won’t know any better?
7. We all have the right to be treated with respect.
One man I know was recently not treated well. He was stereotyped, people didn’t look beyond his condition and he wasn’t given the chance to show what he was capable of or tell them what we wanted. Even families can ridicule the person with Dementia and undermine their confidence. Some people don’t have the patience to allow people with Dementia to express themselves. - I feel really upset about that man. Another member of the FFF group went for an appointment with his wife and the nurse turned to the wife and asked “Is he violent?”. Again, this was really upsetting for him.
8. We have the right to be offered therapies and treatments.
We mustn’t be left to rot; we need stimulation and challenges. I was given the chance to have some rehabilitation, learning strategies to do things in the kitchen. It is possible to relearn. And we need to be offered rehabilitation early on.
Sometimes I feel a bit inadequate, like I’m a pea brain - but I’m not! I’ve been helping people at the council to update the Dementia strategy so I must be doing something right!
9. We have a right to have support to participate in society, going shopping or using public transport.
I can only do shopping with the support of my daughters but I’d like to be to go shopping by myself sometimes. I can’t always use buses by myself as I might not recognise where to get off the bus. Taxis cost me a lot more. We gave a talk to a strategy group of Manchester city councillors about putting in announcements of the next bus stop and it helped them to introduce this into more buses.
So please, if you’re a professional, look for the positives, help us to live well and hopefully, and to participate in society; don’t write us off.
And if you are living with Dementia, don’t give up. Keep doing the things that you make you feel good for as long as you can.