The Dementia Support Forum Team

The Dementia Support Forum Team

  • Staff Members - are Alzheimer’s Society staff, whose role it is to ensure that Dementia Support Forum is running safely and smoothly. They provide support to members and volunteers, and enforce forum rules when necessary.
  • Hosts - volunteer alongside our moderation team. They help us provide extra support to the forum, welcome new members, signpost to useful resources and offer help with basic forum functions.
  • Moderators - help to provide a welcoming and safe environment for people affected by dementia; they provide support to forum members and enforce forum rules when necessary.

Staff Members

Will, Online Community Manager

Before joining the Dementia Support Forum team, I had created and developed many online communities to encourage discussion across a range of different topics. I personally have seen the benefits of being part of different online communities and love the idea that you can receive support and advice almost instantly from someone else going through a similar situation.

Dementia affects many families worldwide, including my own. This makes me incredibly passionate and driven in ensuring that our online community is as accessible, resourceful and supportive as it can be.

We have a fantastic team of employees on the forum with a wealth of experience in overseeing peer-to-peer support forums as well as a dedicated team of volunteers who have themselves been affected by dementia. As a team we are pleased to have supported thousands of people since the forum launched in 2003 and look forward to supporting and welcoming many more in the future.


Harriet, Online Community Coordinator

Before joining the Dementia Support Forum team, I was working for Macmillan Cancer Support where I dabbled in their social media and online community teams. I got to see how valuable peer support can be to people who are dealing with life’s tougher challenges, and how just one empathetic reply really can make the world of difference.

In a nutshell, my job is to support Dementia Support Forum and its team as it continues to grow, making sure that it’s a place which feels safe, comfortable and supportive. This includes responding to emails that come into our enquiries inbox, moderating where necessary, running chat room sessions, and signposting members to relevant information and services.

I’m proud to be supporting such an important service which is a lifeline to many people. The support and kindness that our members both give and receive, regardless of where they are in the world, is inspirational. I’m also lucky to work with a dedicated, compassionate and equally inspiring team of staff and volunteers.


Shel, Online Community Coordinator

Before joining the Dementia Support Forum team I moderated online content for several companies including charities and media companies. I particularly enjoyed signposting people to support services and thanking them for charity donations.

After taking care of my nana while she was battling with a dementia diagnosis, I understand how much of a lifeline peer support communities are to people who need them. This role couldn't have come at a better time, as I wanted to focus more on helping people and I’m able to give people emotional and practical support every day via email or on the forum. I'm proud to let people know the work I do!

Outside of work I enjoy time out with my three boys, being out and about as much as we can be. We enjoy long walks with our dogs, too.


Joe, Online Community Coordinator

Before joining the Dementia Support Forum team, I worked and volunteered for several charities, looking after social media, supporting an office and working as a listening volunteer. This furthered my interest in the non-profit sector and showed me how valuable digital support services could be in improving wellbeing.

I see Dementia Support Forum as a hugely important resource, to bring people together in a safe space where they can support and help each other out. I enjoy the opportunity to make everyone feel valued and welcome, whatever their background. I am inspired everyday by the incredible volunteers and members who use their shared knowledge to help countless people through often great hardships.


Alice, Online Community Assistant

I am one of the newer members of the Dementia Support Forum team after joining in Summer 2022. I first discovered the importance of online community and peer support through my volunteering work at Let’s Talk About Loss, a peer support charity for 18–35-year-olds who have been bereaved.

My role within the Dementia Support Forum team is to manage the email inbox alongside the other Online Community Assistant. I also help to support the coordinators with daily tasks, allowing them to handle the more complex and technical issues.

I feel privileged and inspired to witness the impact that Dementia Support Forum can have on members. The power of shared and lived experience provides support and knowledge to members in need, allowing them to feel seen, heard and not alone. I am proud to work in such a compassionate and empathic workplace.


Tamsin, Online Community Assistant

I came to Dementia Support Forum following professional experience providing customer support online both on phone and through online chat and supporting management of the email inbox of the same company. I’d also done voluntary work helping to support various online communities.

My interest in supporting people affected by dementia grew during my time in university, where I had work experience with an expert in how reminiscence theatre can be used in dementia care. This included a Dementia Friends workshop and training in how to support people with dementia, their carers, and their friends and family. This led to my choice to apply to work on the Dementia Talking Point team, and I feel extremely fortunate to be part of the amazing work of this community.

The importance of peer support cannot be overstated to me. I have certainly had experience of how powerful it can be in my personal life, and I see evidence of the incredible impact it can have every day on Dementia Support Forum.


Hosts


Nellbelles

I have been a full time carer for my husband for 23 years. My husband lost his sight at 36 and worked until his ill health intervened. For the first 2 years of our marriage I worked and Tom was a househusband! He cleaned and my dinner was always ready when I came home from work, Since the decline in his health and the diagnosis of Alzheimer's almost five years ago I have worked hard to maintain his Independence and life skills. This has not been easy and very often involves fighting the system. Social Workers, Doctors and health care workers see an elderly man without sight and make assumptions, I am trying to raise awareness of the effects of a major physical disability combined with the onset of dementia. This includes trying to educate family members who refuse to acknowledge that AD is a progressive debilitating illness.

I also helped my Mum care for my Dad who had dementia, but at that time (only 10 years ago) families tended not to talk about dementia and to quietly try to cope as best they could.

Dementia Support Forum is a powerful supportive tool for anyone affected by dementia and I am proud to have been asked to help it grow.

Photo

Nellbelles


Bunpoots

I've cared for 3 family members with dementia starting with helping my dad look after my mum who had a massive stroke in 2007 which rocketed her into late stage dementia. She'd been diagnosed with Alzheimer's but nothing prepared us for the shock of her after-stroke behaviour. I wish I'd known about DTP then but I didn't learn about it until 2016 when I mentioned my dad's bizzare behaviour to a friend who pointed me in the right direction...thank goodness!!

I'd cared for my aunt (mum's twin) with dad's help but she died before things got really bad.

Without DTP I doubt I'd have been able to look after my dad as well as I did. I volunteered in the hope that I can help others to understand and cope with caring for someone with dementia.

Photos

Top: Bunpoots' mum with her mum's twin sister.

Bottom: Bunpoots' mum and dad.


Sarasa

I came across Dementia Support Forum in early 2018 when I was looking for help and advice as to how to support my mother, Hazel, who was beginning to struggle living independently as her (the un-diagnosed) dementia progressed. Talking Point was such a invaluable support at a difficult time, and really helped when I made the decision that she needed to move into care. A couple of years on, there have been ups and downs, but also fun times too, and I know mum is safe and well cared for. The photos are of mum’s 92nd birthday last March and a flash mob dance event we both took part in November 2017.

Photos

Sarasa and her mother Hazel


Louise7

My mum has Alzheimer’s and I’ve been a member of Dementia Support Forum since 2016, finding it a great source of information and support especially when navigating through the social care system. Mum is now in a care home but my caring role continues and I’ve volunteered as a host to give something back and to help others who are also going through the various challenges that caring for someone with dementia can bring.

DTP is a great resource and as a host I look forward to welcoming new members, providing support and signposting sources of information, plus also sharing some of the knowledge & experience that I’ve gained from caring for mum.


northumbrian_k

I met my wife Alex through work at a Health Authority in the late 1970s. We started to live together, with her son Alexander, and finally got married after 19 years. We have been together for 41 years.

We had early experience of dementia when Alex’s Dad was admitted to psychiatric hospital. Later, it was my Mother’s turn to go into respite, then permanent dementia care. When Alex herself started to display signs of strange behaviour and belief in things that had not happened, I feared that dementia was once again the cause.

By early 2014 going to work was becoming difficult as Alex would telephone from home with odd tales, accusations and suspicions. Her growing needs led me to take early retirement in order to look after her. We continued to have a good life, enjoying foreign holidays and local outings. Bringing home Knight, our beautiful, quietly affectionate greyhound, brought us joy.

I continued my pastime of cycling but normal life was continuing to slide. Holidays brought home how much Alex was diminished by dementia. She was no longer safe on her own or at ease in company. My cycling and our social life came to an end.

In March 2017, at my lowest ebb, I joined Dementia Support Forum. My first post drew helpful and supportive replies. The sense of community was immediate. Much of what has happened since - care at home, respite care, and full-time residential care - was inspired and enabled by the knowledge and encouragement so freely shared by our members.

Alex moved into full time residential care in May 2019. I knew that I could not give her the care that she deserved. It was the hardest decision of my life but the best thing that I have ever done, for both our sakes.

Photos

Top: northumbrian_k and Alex on their wedding day

Bottom: northumbrian_k's favourite photo of Alex on holiday in Chicago in 2009


Gosling

I discovered Dementia Support Forum in Summer 2022, when my dear Mum was in the final stage of Alzheimer's Disease, having been in a care home for nearly eight years. The forum was a huge support and I so wish I had discovered it earlier. Mum passed away in September 2022 at the age of 91, and I miss her hugely; she was always a big part of my life.

I have volunteered as a host to hopefully give something back to those who face the daily reality and challenges that dementia brings, and also to be able to share some of the experience that I have gained from my Mum's journey with this horrible disease.

Photo

Gosling with Mum, Pauline, on her last birthday in 2022


Moderators


Grannie G

In 1990 at the age of 58, my husband was diagnosed with Type 2 Diabetes.

In 1999, there were occasions when he acted totally out of character. With hindsight I think it was the first sign of dementia.

In 2002, we relocated from the Manchester area to Kent, to live near our only son and his family. Dhiren was unable to settle, and deeply regretted leaving Manchester. He became very depressed , was extremely anxious and began to lose his short term memory. His behaviour became quite challenging and in 2005 a CT scan showed he had brain shrinkage.

Alzheimers was diagnosed.

In February 2010 he was admitted into residential care and was settled and contented.

Dhiren died peacefully on 16th January 2014.

Photos

Top: Grannie G and Dhiren in 2004

Bottom: Dhiren with his new walking stick Sept 2009


Izzy

Hi, my name is Izzy. My husband Bill was diagnosed with Alzheimer’s in 2001 and my mother, who lived with us for the last five years of her life, had Vascular Dementia. She died in 2011 and Bill died in July 2016. Bill was 21 years older than me and at the time of his death he was almost 86 but looked around 66! We were married in 1978 so had just short of 38 years together.

We were very lucky in that the progress of Bill’s disease was extremely slow. He lived 15 years following his diagnosis. The first few years were difficult but it was only in the last year few years of his life that the decline progressed more quickly.

I first found Dementia Support Forum in 2003, totally by accident. Bill had been diagnosed for 2 years and we were still finding it very hard to come to terms with. I found it difficult to use TP to begin with because I didn’t want to face reading about what might be ahead of us. I stopped using the Forum in 2005. In 2009 I came back to Dementia Talking Point and I think it’s safe to say I’ve never looked back! By then my mum had been living with us for three years and she was clearly beginning to show signs of dementia. This was eventually diagnosed as Vascular Dementia.

TP has seen me through some very difficult times with my mum and provided me with immeasurable support through the ups and downs of Bill condition.

Photo

The picture of Izzy and Bill sitting was taken in 2005 - 4 years into his diagnosis. The other picture was taken at the Memories Choir concert, just weeks before he died in 2016.


LynneMcV

My husband Niven was diagnosed with a non-specific dementia in 2012, three days after he turned 58.

It was a completely new world to us. Neither side of our families had ever experienced any type of dementia and we had no idea what it entailed beyond a vague awareness that it affected a person’s memory. My goodness, didn’t we have an education in store!

Thankfully, I found Dementia Support Forum during my research – it opened up a world of information, experience and support - all so generously given by those who had walked this road before us, those dealing with the disease several years after diagnosis, and those, who like us, had suddenly been thrown this curve ball and had no idea where to run with it.

Niven, the kindest, bravest person I know, accepted his diagnosis from the start without a shred of bitterness. His approach was the inspiration I needed to push aside my own negativity and instead make our joined lives as happy and content as possible.

There have been many ups and downs over the years. I am still learning but I have also learnt a lot. I am honoured that I can now pay something back into Dementia Talking Point by helping to keep it a safe, informative and supportive environment for all.

Photo

LynneMcV and Niven


SeaSwallow

My husband was diagnosed with Lewy Body Dementia in August 2019 just after we returned from what would be our last holiday. Looking back there were signs going back a few years but I just did not recognize them, mainly memory issues and personality changes, which I put down to the aging process. Little did I know what was ahead.

For the first couple of years I thought that I could cope without any help but was finding it harder and harder. I joined Talking Point at a very low point in my dementia carers journey. My husband was starting to display various challenging behaviors and with his mood swings and lack of empathy I found it really hard to cope. The advice that I received from members really helped me at a difficult time. There are still problems that arise now and again but I now know that there is a wealth of advice and experience through Talking Point.

I enjoy helping people and believe that the knowledge that I have now developed enables me to respond sympathetically to members who are going through similar difficulties. As my husband has one of the less common dementias (Lewy Body Dementia) I feel that I am able to particularly help with those queries.