.
A few weeks ago I was asked to write a few words about my relationship with Talking Point and how I developed such an interest in Alzheimer’s. Over the last few weeks, Talking Point passed 10,000 members, an incredible achievement for an online support forum. I’d like to take this opportunity to wish Talking Point a very happy 7th Birthday and thank ALL the people involved in keeping the forum up and running over the years.
How did it all start and why did you develop an interest in Alzheimer’s?
My father Peter has had dementia for 10 years now. My mother looked after dad at home for as long as she could and we found it increasingly difficult to get the advice and support that we needed. It took two years to get a formal diagnosis of Alzheimer’s. Dad went into residential care 5 years ago and is now in the latter stages of the illness. He is now unable to walk and is totally reliant on others for all his day-to-day care needs. We visit dad regularly and are very involved with the home. Mum died in March 2008 from COPD.
Mum and Dad’s wedding
What made you approach the Alzheimer’s Society with the idea of setting up an on-line support forum?
About eight years ago I came across Alzheimer’s Society website, found the wonderful factsheets and then contacted the helpline a few times. The family struggled with issues such as diagnosis, medication and the kind of help mum could get at home. I was finding information but not seeing how other people coped and needed more support. I had a computer software background and experience with other online support forums; through my work and a forum for a serious eye condition that I moderate. My idea was to just go ahead and set up a new support forum on my own. Luckily, before going it alone, I spoke to someone on the Alzheimer’s helpline about my idea and she put me in touch with the then Website Manager, Nada.
We met in November 2002 and discussed the idea – I also told Nada that if the Society did not help me set up the forum I’d like to do it on my own
I needed the support quickly for myself as much as for other people.
Thankfully, I was taken seriously and we started work on setting up the forum. We did our best to fit the forum in with Alzheimer’s Society structure at that time and we also secured the budget for the forum to be hosted by the Society. After a lot of meetings and discussions we went live in March 2003. That in a nutshell is how it all started.
What other (volunteer) work do you do for Alzheimer’s Society?
As many of you may be aware, many of the moderators on Talking Point do a lot more than just moderating the forum. Many of us get involved with the press and radio (some even the TV) on issues close to our heart. Raising awareness like this gives me hope and helps me sneak in a little plug for Talking Point whenever I get the opportunity
The press team at the Society are always looking for volunteers to help with topical issues. They are great people to work with and give you all the support and advice you need. They always contact you first before passing on details and are never pushy.
What changes in Talking Point have you seen over the past seven years?
Back in 2003 Talking Point was seen as separate from the other support offered by the Society. It was still a time when some people found the technology and the internet a little intimidating. The main stumbling block would often come from people who had never accessed the forum. They only needed to browse for a few minutes to realise how much help and support people were giving each other. The forum slowly got busier and we started to recruit new volunteer moderators. Interest within the Society started to grow.
To be honest, I became a little obsessed with the forum and wanted everyone to embrace the idea and see its potential. With the support of other moderators who had the same passion, but were a little more realistic than me, everything started to change. The Society’s growing Web team also took a great interest in the project and helped restructure and streamline the whole forum. People at the Society could also see how the forum was raising awareness as well as supporting people on a day-to-day basis. The forum has now been fully embraced and has become a part of the Society’s services structure offering support 24/7. We have a full-time Talking Point Manager (Katherine) who does a brilliant job supporting the forum and its moderators. Katherine spends a lot of time promoting the forum and, along with all the moderators, ensures the smooth running on a day-to-day basis.
We now have a team of 10 volunteer moderators, all with different experience and skills. The moderators not only work hard keeping an eye on the main forum but also work in the background making sure everyone is made to feel welcome, safe and comfortable. All the moderators have first-hand experience of dementia and many of the issues that are raised on the forum.
What do you get out of Talking Point?
Where do I start! As many of you know, I still post for support and advice all the time. I’m learning every day. I’m so grateful for everyone who has given me advice. Advice on sundowning, carer’s depression, the ins and outs of self funding, EPA and how to find a care home etc. At some points I was just going from one crisis to another and the forum members helped me cope with both practical advice and emotional support. I’m also grateful for the support and advice when mum died, I never expected to be one of the visitors to the ‘After Dementia Dealing with Loss’ section, but even though mum did not have dementia, I was given support and advice from people who had been through it – it really is a special part of the forum.
Most of all, the forum, its members and the altruistic nature of all the moderators gives me hope and helps me cope everyday.
Have your expectations of Talking Point changed?
Initially, I expected the forum to provide support in the form of swapping information and facts – this had been the primarily purpose of the other forums. It soon became apparent that many people involved with dementia needed online friendship, understanding and empathy - somewhere to chat about their feelings and emotions. The forum also started to become more of a community; hence sections like the ‘Tea Room’ appearing. There is still a wealth of information on Talking Point, but it is primarily for peer to peer support. The Society and moderators have put a lot of work into making Talking Point a safe and welcoming environment, but it is the members that make Talking Point tick.
The forum was set up to support both people with dementia and their carers. The issue of Talking Point not offering enough support for people with dementia has been a topic of discussion at many of the moderator meetings. The Society offers so much support for people with dementia and we struggle to mirror this much needed support on the forum; as many appreciate this is quite a challenge. We introduced the area ‘I have dementia’ to address this issue and continue to get as much feedback from the users as possible, to find out how we can improve this area.
What changes do you expect on Talking Point in the future?
The forum along with Alzheimer’s Society needs to continue to raise awareness and address the massive disparity between the funding for dementia compared to other illnesses (such as cancer). In the future I would love to see more threads on possible cures and ground breaking research. Without much more realistic funding this is unlikely to happen.
Talking Point is evolving all the time and I have learnt not to expect it to go one way or another. As long as it continues to give people the support they need I’m happy.
Upgrades in the forum software have allowed the Society to introduce social features such as blogs and social groups; many of you take advantage of these features and some are very happy to continue using the main support areas. I’m confident Talking Point will continue to grow and improve and look forward to the new challenges in the coming year.
Finally, for those who are new to the forum, here is the first post made on Talking Point 31st March 2003. Been quite a journey but the sentiments and motives are exactly the same.
Dad 2009
Happy 7th Birthday Talking Point from Craig
(Moderator and Alzheimer’s Society Volunteer)
(Moderator and Alzheimer’s Society Volunteer)
A few weeks ago I was asked to write a few words about my relationship with Talking Point and how I developed such an interest in Alzheimer’s. Over the last few weeks, Talking Point passed 10,000 members, an incredible achievement for an online support forum. I’d like to take this opportunity to wish Talking Point a very happy 7th Birthday and thank ALL the people involved in keeping the forum up and running over the years.
How did it all start and why did you develop an interest in Alzheimer’s?
My father Peter has had dementia for 10 years now. My mother looked after dad at home for as long as she could and we found it increasingly difficult to get the advice and support that we needed. It took two years to get a formal diagnosis of Alzheimer’s. Dad went into residential care 5 years ago and is now in the latter stages of the illness. He is now unable to walk and is totally reliant on others for all his day-to-day care needs. We visit dad regularly and are very involved with the home. Mum died in March 2008 from COPD.
Mum and Dad’s wedding
What made you approach the Alzheimer’s Society with the idea of setting up an on-line support forum?
About eight years ago I came across Alzheimer’s Society website, found the wonderful factsheets and then contacted the helpline a few times. The family struggled with issues such as diagnosis, medication and the kind of help mum could get at home. I was finding information but not seeing how other people coped and needed more support. I had a computer software background and experience with other online support forums; through my work and a forum for a serious eye condition that I moderate. My idea was to just go ahead and set up a new support forum on my own. Luckily, before going it alone, I spoke to someone on the Alzheimer’s helpline about my idea and she put me in touch with the then Website Manager, Nada.
We met in November 2002 and discussed the idea – I also told Nada that if the Society did not help me set up the forum I’d like to do it on my own
I needed the support quickly for myself as much as for other people.Thankfully, I was taken seriously and we started work on setting up the forum. We did our best to fit the forum in with Alzheimer’s Society structure at that time and we also secured the budget for the forum to be hosted by the Society. After a lot of meetings and discussions we went live in March 2003. That in a nutshell is how it all started.
What other (volunteer) work do you do for Alzheimer’s Society?
As many of you may be aware, many of the moderators on Talking Point do a lot more than just moderating the forum. Many of us get involved with the press and radio (some even the TV) on issues close to our heart. Raising awareness like this gives me hope and helps me sneak in a little plug for Talking Point whenever I get the opportunity
The press team at the Society are always looking for volunteers to help with topical issues. They are great people to work with and give you all the support and advice you need. They always contact you first before passing on details and are never pushy.
What changes in Talking Point have you seen over the past seven years?
Back in 2003 Talking Point was seen as separate from the other support offered by the Society. It was still a time when some people found the technology and the internet a little intimidating. The main stumbling block would often come from people who had never accessed the forum. They only needed to browse for a few minutes to realise how much help and support people were giving each other. The forum slowly got busier and we started to recruit new volunteer moderators. Interest within the Society started to grow.
To be honest, I became a little obsessed with the forum and wanted everyone to embrace the idea and see its potential. With the support of other moderators who had the same passion, but were a little more realistic than me, everything started to change. The Society’s growing Web team also took a great interest in the project and helped restructure and streamline the whole forum. People at the Society could also see how the forum was raising awareness as well as supporting people on a day-to-day basis. The forum has now been fully embraced and has become a part of the Society’s services structure offering support 24/7. We have a full-time Talking Point Manager (Katherine) who does a brilliant job supporting the forum and its moderators. Katherine spends a lot of time promoting the forum and, along with all the moderators, ensures the smooth running on a day-to-day basis.
We now have a team of 10 volunteer moderators, all with different experience and skills. The moderators not only work hard keeping an eye on the main forum but also work in the background making sure everyone is made to feel welcome, safe and comfortable. All the moderators have first-hand experience of dementia and many of the issues that are raised on the forum.
What do you get out of Talking Point?
Where do I start! As many of you know, I still post for support and advice all the time. I’m learning every day. I’m so grateful for everyone who has given me advice. Advice on sundowning, carer’s depression, the ins and outs of self funding, EPA and how to find a care home etc. At some points I was just going from one crisis to another and the forum members helped me cope with both practical advice and emotional support. I’m also grateful for the support and advice when mum died, I never expected to be one of the visitors to the ‘After Dementia Dealing with Loss’ section, but even though mum did not have dementia, I was given support and advice from people who had been through it – it really is a special part of the forum.
Most of all, the forum, its members and the altruistic nature of all the moderators gives me hope and helps me cope everyday.
Have your expectations of Talking Point changed?
Initially, I expected the forum to provide support in the form of swapping information and facts – this had been the primarily purpose of the other forums. It soon became apparent that many people involved with dementia needed online friendship, understanding and empathy - somewhere to chat about their feelings and emotions. The forum also started to become more of a community; hence sections like the ‘Tea Room’ appearing. There is still a wealth of information on Talking Point, but it is primarily for peer to peer support. The Society and moderators have put a lot of work into making Talking Point a safe and welcoming environment, but it is the members that make Talking Point tick.
The forum was set up to support both people with dementia and their carers. The issue of Talking Point not offering enough support for people with dementia has been a topic of discussion at many of the moderator meetings. The Society offers so much support for people with dementia and we struggle to mirror this much needed support on the forum; as many appreciate this is quite a challenge. We introduced the area ‘I have dementia’ to address this issue and continue to get as much feedback from the users as possible, to find out how we can improve this area.
What changes do you expect on Talking Point in the future?
The forum along with Alzheimer’s Society needs to continue to raise awareness and address the massive disparity between the funding for dementia compared to other illnesses (such as cancer). In the future I would love to see more threads on possible cures and ground breaking research. Without much more realistic funding this is unlikely to happen.
Talking Point is evolving all the time and I have learnt not to expect it to go one way or another. As long as it continues to give people the support they need I’m happy.
Upgrades in the forum software have allowed the Society to introduce social features such as blogs and social groups; many of you take advantage of these features and some are very happy to continue using the main support areas. I’m confident Talking Point will continue to grow and improve and look forward to the new challenges in the coming year.
Finally, for those who are new to the forum, here is the first post made on Talking Point 31st March 2003. Been quite a journey but the sentiments and motives are exactly the same.
Craig would like to introduce himself....
Hi All,
I would like to introduce myself to everyone.
My name is Craig and I have somehow volunteered myself to help stimulate and support Talking Point
I have someone very close to me whose life has been changed by Alzheimer's. So, I hope to be able to share my experiences and learn from others. Above all, I just want to help. These are my motives.
I'm sure Talking Point will become a great resource and solace for people with all forms of dementia and carers alike. And, as time goes on and more questions and answers get posted - this forum will become a great resource and archive for visitors and active members.
Kind Regards
Craig
Happy 7th Birthday Talking Point!
Dad 2009
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