Robert's story: Why I became a Research Network volunteer

Robert cared for his mother, who had frontotemporal dementia, until she passed away. Here Robert shares why he's passionate about dementia research and hopes other carers will get involved, too.

After seeing a recent advert to become a Research Network volunteer, I didn’t hesitate to apply. The opportunity to support a charity that helped me as a carer and to contribute towards cutting-edge dementia research was too good to turn down.

By sharing my reasons for joining the Network, I hope to make other carers realise their experiences are valued and can be utilised by Alzheimer’s Society in the battle against dementia. 

With his mum

My story

In 2011, my life changed dramatically.

Two days after graduating from university, my mum was diagnosed with frontotemporal dementia, aged 52.

I became her primary carer and took responsibility for organising her daily care, financial affairs and health issues.

Alzheimer’s Society proved to be vital; the local office signposted me to services and resources that provided important practical and emotional support.

After mum passed away in 2013, I was left deeply affected and with an urge to use my experience positively.

Since 2015, I have volunteered as a Regional Facilitator for a charity supported by the Dementia Research Centre (DRC).

In this role I have provided advice to many families in London confronted with a diagnosis of frontotemporal dementia. This service has been made possible through Alzheimer’s Society’s contribution to the DRC. 

Robert and his mum

Joining the Research Network

It is easy as carers to undervalue all of the skills and knowledge we amass. Often we reduce caring to a duty or something that anyone in our situation would do.

I see joining the Network as the perfect way of ensuring that my expertise are maximised and channelled towards research that will ultimately benefit other carers and those living with dementia. 

As someone with understanding of a young onset dementia, I am especially looking forward to reviewing proposals that could improve the societal and medical outcomes for those with a similar disease.
 
Mum’s frontotemporal dementia was not the familial genetic type. It was wholly sporadic and I have no idea why it struck her.

I think that only through research initiatives, such as Brains for Dementia, will it one day be possible to identify those vulnerable to the disease and find a prevention or cure.

First impressions

My first months in the Research Network have been really positive.

I am proud to have joined a respected group of experts. The regular Network communications have made me feel welcome. There are so many opportunities to get involved in.

If you are someone with experience of dementia, put it to good use and join the Network today! 

Research Network volunteering

Research is not just for researchers. Your personal experience of dementia is invaluable. Join our Research Network to make research relevant and impactful for all those living with dementia today and in the future.

Sign up

Robert has recently published an ebook about his experience of looking after his mum. 'Picking Away: Mum's Journey through Frontotemporal Dementia' is available for Kindle readers now. From 26 March 2019, Robert's ebook will be free to download for five days.

Think this page could be useful to someone? Share it:

2 comments

Add your own

My wife has dementia early aged 56. At the moment she sleeps a lot, talks to herself a lot, says very unusual things about people and daily life that don't make sense. I dont know if she at a later stage or not and would appreciate any help as to what I must expect. That's now and towards the end so that I have an idea on how to plan ahead. Im ex military and quite frankly this is breaking my heart. Can anyone advise me?

Hi Tony, sorry to hear about your wife's diagnosis. Our helpline team is going to send you an email.
You can also call or contact the Helpline if you'd like to speak to somebody for information, advice or support. Please find the details here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
--
Alzheimer's Society blog team

Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.