Provided with no more information and feeling that he had no-one to speak to, he walked out to the street and burst into tears.

After months of trying to find out the cause of his memory problems and receiving little in the way of answers, it seemed like the final straw. He and his family were forced to look online for information about his illness, but could never discover what they really wanted to know: how to cope with dementia and what Henry’s future was, if any.

Henry Rankin (also current Chair of the Scottish Dementia Working Group)

Henry describes himself as fortunate that he was able to take part in the Alzheimer Scotland’s pilot Facing Dementia Together project, which provides information and support to people recently diagnosed with early stage dementia, their families and friends.

“I can’t praise Tracy [Gilmour, Manager of the project] highly enough,” says Henry. “She put me at my ease straight away. She reassured me, gave me my confidence back. Getting my diagnosis had knocked the wind right out my sails, but she got me back on track. She spoke to my family too, gave them lots of information and advice. Best thing was; she was always there. We could speak to her at any time.”

Tracy was able to put Henry and his family in touch with the various people, groups, public sector agencies and other organisations required to help the Rankins’ plan for future legal, financial and care needs, as well as assisting them with the form-filling involved.

As Henry points out, “If someone is told they have cancer, they’re pointed toward people that can help them. That didn’t happen to me. They need to get diagnosis and post-diagnostic support right for people with dementia and their families. I’m glad the government’s made a commitment to making that happen. It’s brilliant news!”

My journey with dementia began on top of a roof. Despite being a self employed stone mason and roofer for 12 years I found that I was coming home and doing silly things without realising. If I had been paid cash for a job my wife would ask me for the money and I would have no idea what she was talking about. She would go out to the car and find the money there. It then got the point where I could no longer sit down at night to read the plans and order materials to organise my work in advance.

The final crunch came when I was working on the roof of my local GP’s house and I suddenly fell off. Thankfully the doctor appeared around the corner at that moment and took me to the clinic at his house. It was the GP who suggested that I should get a brain scan and it was the scan that diagnosed me with grand mal epilepsy, which was later followed by a diagnosis of vascular dementia.

My first reaction to the diagnosis was to become angry and withdraw into myself. I was introduced to a nurse but that didn’t help me at all. I felt that she constantly spoke down to me and was patronising.

The turning point was when I was put in touch with Alzheimer Scotland and the Joint Dementia Initiative. A woman called Sheena came into my life and that was the best thing that ever happened to me. Sheena put me in touch with various support groups and a befriender called Neil who I now go out with twice a week.

With the right kind of support in place, my anger has been turned into positive energy and I am getting more involved by talking at conferences, lobbying politicians and being involved in research on respite care, something I feel very passionate about.

Project workers, befrienders and groups have all helped me along the way. But your own positive attitude towards the problem is the most important. If you take the bull by the horns and challenge dementia head on, you’re half way there. To me, it’s all down to determination – get on with your life and make the most of what you’ve got.

I am 57 and have a diagnosis of Alzheimer’s disease. My life can be challenging because everyday chores take a lot longer than they used to, I don’t know what day it is when I get up in the morning and if people speak too quickly I simply can’t understand them.

However, despite all of these challenges I am determined to live my life to the full doing as much as I can when I can. I achieve this with support from Alzheimer Scotland who are my ‘backbone’.

I attend Alzheimer Scotland’s Elm Centre where staff members have helped me rebuild my life. When you’re diagnosed with dementia you feel as though you’re lost in a different world. Getting involved in the centre made me regain my confidence and see that I was still a full person. I now know that it’s a matter of trying to adjust and work round your dementia, to find the things that you can still manage to do, but accept that you may need support to do other things.

I am currently involved in a West Dunbartonshire interest group where my input ensures that services for people with dementia are appropriate to their needs. I sit along side social workers, mental health workers, occupational therapists, respite care workers and sheltered housing professionals to make sure that they hear the views of people with dementia.

The only way that services will be able to change is if people start listening to us. We know what our needs are and should be the ones telling them. We are the experts in our field.

I was diagnosed with Vascular Dementia in 2003 at the age of 58 and it came completely out of the blue. I was young, independent and enjoying life on a remote croft where I was involved in gardening, walking and most importantly driving – something I was worried would be taken away from me.

I had chosen to live in a relatively remote rural part of Scotland because I enjoyed the peace and quiet. However, the idea of being completely cut of from my friends and family because I couldn’t drive as a result of my illness really concerned me.

This concern prompted me to contact Alzheimer Scotland. By doing so I found someone with whom I could discuss my fears and my options for the future. I joined the Inverness Dementia Group and through that was introduced to a campaigning group run by and for people with dementia called the Scottish Dementia Working Group (SDWG).

Since joining these groups I have not looked back. I have been supported to attend dementia conferences, taken part in training to speak out about dementia in the media, and been involved in the filming of two DVDs – one about the awareness raising work of the SDWG and the other informing people about the Adults with Incapacity Act.

Unfortunately my fears about not being able to drive have been realised. But with the help of my Alzheimer Scotland support worker, I continue to live an active and independent life. In addition to maintaining my garden I have joined a dancing class, I attend The Green Gym (this involves doing outdoor environmental projects) and I am a member of a Nordic walking class which keeps me physically and socially active.

Whilst receiving a diagnosis of dementia can be terrifying, it is better to know what’s wrong with you and be able to seek help than it is to remain in the dark.

It increases your confidence and helps you believe in yourself because you know that whatever you say will be listened to. After receiving a diagnosis of dementia the most important need is to rebuild confidence. That is only possible with a lot of help and support.

Nancy McAdam, November 2006