Real stories

Volunteering for the Dementia Support Forum gives me a useful role

I joined the Dementia Support Forum in October 2019, about two months after my husband’s diagnosis with Lewy body dementia. 

I’d come across it when I was searching the internet, trying to understand what the dementia diagnosis would mean going forward.

My first post was about my husband’s reaction to his diagnosis. I was overwhelmed by the empathy and knowledge of the posters who responded. 

It really reassured me that I was not on my own and that other people understood what I was going through.  

Becoming a volunteer 

I’ve been volunteering as a forum moderator since 2023. It has benefited me in that I feel that I am carrying out a useful role. 

Moderators are asked to give around seven hours per week to the role, but it’s flexible so we can fit volunteering around our busy lives. I enjoy it and probably do at least two hours per day and possibly more, but that is my choice. 

One priority is ensuring that forum rules are upheld, so that might mean having to remove any inappropriate posts or spam, for example. But our main focus is providing ongoing support to members. 

Experience as a carer

What works for one person will not work for another, so I’m careful about the support I give to members. But sometimes I can draw on my experiences, for example how to deal with social services or look after your wellbeing as a carer.

I’m still a carer too and reach out for advice if I have any problems or issues. I know that compared to other members I have it relatively easy. But caring for someone 24/7 with only short breaks can be hard and lonely, so I am aware of the issues that carers face. 

Some of the posts can be so sad or difficult to answer and at those times, volunteering can be difficult. 

However, there is always support and advice available from other volunteers and staff members. 

It’s such a good feeling if I’m able to help someone, especially if they are appreciative.

Valuable dementia support

The Dementia Support Forum is an amazing resource. 

As well as having a vast knowledge of dementia, our members share their knowledge in an empathetic and knowledgeable way. 

Everything from what to expect after a diagnosis, to the legal and financial issues. 

If you’re reading this and think you might have the time to volunteer, either as a host or a moderator I would really encourage you. 

You’ll receive the right training and ongoing support to help you. And there is a real feeling of satisfaction when you’re able to help a member who needs advice or who’s feeling distressed and dealing with difficult challenges.