Lorraine's story

After her diagnosis, Lorraine got involved with Alzheimer's Society to help shape Society's attitudes to dementia. Find out more.

'There is stigma and stereotyping around dementia and I call myself a warrior, this is my way of fighting to do something about it

Why did you first start joining involvement groups?

'When I was first diagnosed, I picked up a leaflet about services in my local area and made contact. I was then invited to the local Dementia Café which seemed aimed at people who were a bit different to me, but I met Vicky, a member of Alzheimer’s Society staff who talked about all the other groups that were around. She explained that these groups were still made up of older people but of those who were young at heart, active and passionate about wanting to get something done.'

'I then became a member of the Memoryabilia user involvement group and eventually became chair of the Dementia Action Alliance (DAA) in my area.'

Can you tell us a bit more about what it was like to be involved?

'It has opened up so many more avenues, for example I have been a mystery shopper and helped make our local Huguenot Museum, library and local fast-food outlets more dementia friendly. Everyone in the groups is so enthusiastic about making a difference and we try and do something about everything that affects people living with dementia.'

'I am the chair of the DAA which is a group of members made up of people living with dementia, companies and other organisations like supermarkets and the council. We tackle topics like jobs and the world of claiming benefits which is very new to many of us with young onset dementia. We help people understand what to claim and how and to give people an understanding of what is out there. We have talked to the council about the need for one-to-one help with this as people living with dementia often struggle to feel informed.'

'We also do lots of work with the local Medway hospital. Before my diagnosis I worked at the hospital for 24 years in the Crisis home treatment mental health team, so it is great to go back there in a new role. I now teach dementia awareness training to nurses and non-medical staff their and I feel I have a lot to bring to this.'

Why do you think it is important to speak out for people living with dementia?

'There is stigma and stereotyping around dementia and I call myself a warrior, this is my way of fighting to do something about it. It is also a way of challenging and channelling my anger, it is a really good way to get rid of negative feelings. I think when you are diagnosed with this, often you sink or you swim.'

'All of it is worthwhile but I do enjoy doing the Welcome Days in London and a highlight this year was winning The Most Inspirational Person with Dementia Award in Kent.'

Further reading