Dementia is a disease of the brain, in the same way you can get a disease of any organ in your body. The term dementia describes a set of symptoms associated with the disease, and how it is affecting your brain. No two people will experience dementia in the same way, but there will be similarities in what they experience.
There is a very real stigma to admitting that you have been diagnosed with dementia.
· People may look at you differently and expect you to do or say something strange
· They notice if you repeat yourself or make comments which don’t fit the conversation you are having
· You may be embarrassed and avoid social events with friends or new situations
The truth is, most people who have been diagnosed with dementia are living normal lives. They may still be driving, or working and they are still the best husband, wife or grandad. They will still be going on holiday, enjoying their hobbies and getting the best out of life. It’s just we treat these people as just like us, and don’t notice the changes to their brain.
This just isn’t portrayed in the media. It’s hushed up, there are few positive news stories, and a focus on the negative symptoms. Which isn’t very helpful if you’ve just been diagnosed and you are panicking and scared about what is to come.
There is a real worry about the cost of care, and the impact on families who worry how they’ll manage if they take on the caring role. People need advice about their financial situation and protecting their loved ones. They need to plan for the future.
So what needs to happen?
What people living with dementia need is an environment which is more supportive of their emotional and cognitive needs.
What families living with dementia need is information and advice on how to adapt to their loved one’s changing needs. They need to know where to find social groups and activities which are going to welcoming and support you when you need it. They need to know where to find advice and support.
That’s where the I’m Worried About Mum community can help you. There are 2 Facebook groups you can join, where you’ll find a group of people going through exactly what you have. They may be a few steps ahead or behind on the living with dementia journey. They can share their problems and solutions, and where they found the best support. You can help each other and be each other’s support group.
There is the opportunity to ask Sally, our resident independent social worker who has a specialism in dementia any thing you need to. No question to big or small, and definitely no such thing as a silly question.
There is the care directory designed to guide you through the best care professionals and service providers to help you get organised and prepared for the changes which will come.
With dementia, it’s always good to be one step ahead rather than one step behind.
