Local people living with dementia and using the Lewisham Dementia Support Hub services released advice for people newly diagnosed with dementia for Dementia Action Week 2019.
As members of the Lewisham Dementia Support Hub Advocacy Group, Lewisham residents living with dementia meet on a monthly basis to:
- meet other people living with dementia
- talk about issues that they face living with dementia
- share tips and advice for living well with dementia
- get involved in and influence dementia research and policy
- raise awareness of dementia by giving talks.
Members of the Advocacy Group agreed that they would have liked advice from other people living with dementia when they were first diagnosed.
Working with the NHS Lewisham Memory Service and supported by Lewisham Dementia Support Hub staff, the group trialled a leaflet of advice for people recently diagnosed with dementia, helping people to make adjustments in their lives to live well with dementia.
After positive feedback, the advice is now being produced in a leaflet called ‘Take My Advice’. As of Dementia Action Week 2019, it is available to anyone diagnosed with dementia at the NHS Lewisham Memory Service and other related NHS services.
“The real experts in dementia are people living with dementia,” said Laura Saksena, Lewisham Dementia Support Hub Manager. “The publication of this leaflet created by people living with dementia is a brilliant opportunity for them to get their voices out there, and offer support to other people living with dementia in Lewisham borough.”
The advice leaflet is also available as a PDF download and as text below.
Take My Advice
Tips and advice from people living with dementia in Lewisham for people recently diagnosed.
- When you get the news it is frightening and your first instinct can be denial.
- It’s good to sit down and have a calm chat about any worries that you have with people around you. This could be family, friends or professionals such as your GP.
- It can be difficult for people to understand but try to have the confidence to tell others. You don’t need to say, “I have dementia” but you can say, “I have memory problems.” When you tell other people, then help comes.
- Forgetting things can be very frustrating. Try to be kind and patient with yourself, you can handle it.
- Slow down – take things step by step and think about how you feel day to day. Don’t put too much pressure on yourself.
- There is help out there, don’t be afraid to ask for it when you need it. Contact the Lewisham Dementia Hub and they will help you in whatever way they can.
- It can be difficult but your life is still ahead of you and you have to keep going.
- People may not understand and they can try to minimise your dementia, saying, “You’re just getting old”, but they have to understand that it is a serious diagnosis and it does change you. You need to ignore these comments, you know who you are and how you feel.
- You are not alone! It is important to speak to people who are going through the same thing, there are lots of groups out there. Find a group of people who are experiencing memory problems for support. It is non-judgemental and allows you to relax around people.
- You can take practical steps to help yourself:
- It’s a good idea to write things down! Use a calendar/diary/phone to write down all appointments.
- Have one place where you leave things that you are going to need eg. keys, bag, bus pass, mobile phone.
- Keep your medicine in a dosset box so that you can keep track of which medication you need to take and when. There is a lot of clever technology out there that can help eg. dosset boxes which have reminder alarms. Ask your local pharmacy for more information.