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How we can help: Finding others who really understand your situation

‘My partner has advanced posterior cortical atrophy. I love my local small-town community, but no one I talk to really understands what I’m going through.’ 

If someone in your life has dementia, getting support from expert professionals and from understanding friends, relatives and neighbours makes a massive difference.

However, there’s something irreplaceable about being in touch with people who know what it’s like to stand in your shoes. 

Everyone’s experience of caring for someone with dementia is unique, but there’s a great deal of common ground too.

It often feels like only someone with personal experience can truly relate to what you’re going through. 

Alzheimer’s Society supports people affected by dementia in many ways. This includes helping people to share their experiences and advice with each other through our online community, Talking Point. 

Online community 

Talking Point has been connecting people affected by dementia for years. The restrictions put in place due to coronavirus have made it essential for a great many more people. 

Talking Point is open 24/7, and people can be surprised by the responses they get from fellow members in even the small hours.

Volunteer moderators and hosts nurture the community’s welcoming and supportive spirit, and the Talking Point team is on hand if you have questions about joining or taking part. 

Look around 

You can look around at other people’s discussions, reply to their posts or start your own threads. Most people join Talking Point using a made-up username, which can help in being open about what you’re experiencing and how it really feels. 

The community has different forums for specific topics, but also more general areas and some even for when members want to talk about anything apart from dementia.

There’s also a members-only area, which includes a forum for people who are dealing with especially difficult feelings. 

Since there are so many Talking Point members, there’s a greater chance of hearing from someone else who’s caring for a person with posterior cortical atrophy, even though it’s a less common type of dementia. 

There for you 

Talking Point’s benefits include knowing that other people are in a similar boat to you. It can be reassuring to have a place where you feel safe to vent about what you’re thinking and feeling and not worry about being judged by anyone. 

Other people’s views and experiences can provide a valuable perspective on your own circumstances.

Members can also share specific tips and point you to useful information as your situation changes or between your appointments with professionals. 

This can all help decisions about how to approach a particular issue, or it could simply make it easier for you to get through that day (or that night).

Talking Point is also a place to be inspired by just how many people are willing to be there for you when you need it the most. 

One new member, Metalpetal, says, ‘I feel much, much more content since I found this wonderful forum. In just the last couple of days since I’ve joined, it’s been so helpful.’