Research Network member: Leila Mehdizadeh

Becoming a Network Volunteer

I became a Research Network Volunteer in 2015 after my dad was diagnosed with early onset Alzheimer's disease and I came across a mention of the Network on the Society's forum. I am a researcher by profession and the Research Network gives me an opportunity to keep updated with the latest research being funded and helping to set the research priorities of the Society.

Research Network Activities

I am mainly involved in reviewing grant applications and this has been a good experience. When dealing with a long term health condition it is important to understand as much as you can. I gain information I would not have otherwise had access to, and I make a valid contribution to the Society so there is mutual benefit in being a grant reviewer. I have also attended the Introduction to Research training day which was enjoyable. It was useful to meet the staff and other volunteers involved in the Research Network.  The training day was an excellent overview about the different roles on offer and what they involve.

'Trying to think about how the research may help carers or people with dementia in general is important, rather than focusing specifically on my own relatives.'

I am not from a biomedical background and in reviewing I focus on how useful the proposed study might be and particularly how well proposals are written. A good research proposal should be able to communicate effectively to a lay audience. Trying to think about how the research may help carers or people with dementia in general is important, rather than focusing specifically on my own relatives.

My highlight has been attending the Alzheimer's Society Conference. It was very generous of the Society to invite the Network Volunteers and cover their conference costs. It gave people with experience of dementia the opportunity to be part of the academic world. I am excited about future opportunities to monitor projects or become part of an advisory panel.

Benefits of being a Volunteer

Commitment to the Research Network is flexible and you are given the choice of how much you would like to do. You are invited to take part in other aspects but are not pushed to do so. The Research Network is very respectful to its volunteers and I was given time off lay reviewing during maternity leave.

'There is a role in the Network for everyone and we need more advocates for young dementia carers and those from different ethnic backgrounds.'

To research the topic of dementia or caring, the researcher does not necessarily have to have experience of dementia, so it is vital to get people with experience as carers or people with dementia involved. People with dementia are experts in the experience of dementia, and carers are experts in caring. Utilizing our involvement translates research at the grass roots and can also help to put misconceptions that may surround dementia in research at rest.

For anyone thinking of joining the Network I would say don't be afraid of the workload, as involvement is flexible and you can decide how much you want to be involved. I would like to see the Research Network become more diverse with the inclusion of people in groups who are difficult to reach in terms of engagement. There is a role in the Network for everyone and we need more advocates for young dementia carers and those from different ethnic backgrounds.