The Dementia Talking Point Team
Serena, Online Community Manager
I’ve been part of the Dementia Talking Point team for seven years and I oversee the delivery of the service. Before I worked at Alzheimer's Society, I worked at a cancer charity managing social media, writing articles and working with the media.
My role on Dementia Talking Point covers a few areas – keeping the community running smoothly, looking after the volunteer and staff teams, promoting the community and helping to improve the service. It’s also part of my role to develop our community by acting on feedback received, testing new ideas and bringing in changes carefully.
What I love about the internet is how it breaks down barriers to receiving support – you don’t have to be in the same room and you don’t even have to be online at the same time. Our members are the real experts and its their experience that drives me to ensure Talking Point is a high quality service that continues to go from strength to strength.
Harriet, Online Community Coordinator
Before joining the Dementia Talking Point 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 Talking Point 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.
Saun, Online Community Coordinator
I cover Dementia Talking Point over the weekend and a few days during the week. Before coming to the Alzheimer’s Society, I worked as a web editor and managed social media including online communities for a number of charities.
My main focus is to keep Dementia Talking Point ticking over the weekend so that the community has access to a member of Alzheimer’s Society staff every day of the week. I also cover the Dementia Talking Point mailbox responding to any queries that pop up. I also have a keen interest in emerging technologies and their potential in helping Dementia Talking Point users in the future.
I find Dementia Talking Point to be significant in bringing the dementia community together in a safe, well managed space where like-minded people can benefit from each other’s experiences. The community’s collective wisdom and shared empathy is vital in alleviating loneliness and despair when faced with difficult situations. However, I also see Dementia Talking Point as a positive space where stories of successes and overcoming hardships can bring great joy and happiness to all.
Sophie, Online Community Assistant
Before working at Alzheimer's Society and joining the Dementia Talking Point Team, I helped manage Samsung's social media and online community. This is what sparked my interest in online communities and the valuable impact they can have.
My job is to ensure Dementia Talking Point is a welcoming, safe, and supportive environment. I monitor the Dementia Talking Point mailbox, respond to a variety of queries, assist with moderation when needed, and signpost members to an array of relevant services.
I'm thrilled to be part of Dementia Talking Point as it really highlights how meaningful and positive online communities can be. I love that members can share experiences and receive support 24 hours a day, no matter where they may be in the world. I'm proud to work with such a supportive and inspiring team of both staff and volunteers.
I met Christel in 2006 when she had a room to let in her house. Sadly, she had stroke in 2011 and was diagnosed with Vascular Dementia in 2012. I didn't realise how serious that was until she had a seizure in September 2013 which sent her memory and cognitive abilities backwards so badly it shocked me more than the stroke did. She is still the same lovely, kind gentle lady who made me welcome as her lodger.
TP has been a great source of information, moral support and comfort over the three and half years or so I have been here. It was recommended by a carer I met at a carers support centre course.
Being asked to volunteer as a host was a surprise, as I didn't think I had anything to offer. It has been so good to learn from everyone and a great chance to support a forum which gave me so much.
Nae Sporran and Christel
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.
Talking point is a powerful supportive tool for anyone affected by dementia and I am proud to have been asked to help it grow.
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.
Top: Bunpoots' mum with her mum's twin sister.
Bottom: Bunpoots' mum and dad.
I joined Dementia Talking Point in February 2015 when my Dad was in the process of being diagnosed with vascular dementia. I also cared for my father in law who was an alcoholic with heart problems.
FIL died July 2016 and my beloved Dad died in October 2016.
Dementia Talking Point was my life line during that time & the support I received was amazing. I now volunteer to give that same support back.
For most of my adult life, my mother lived on the other side of the country in British Columbia. This meant I saw her at most once a year, although I spoke to her at least once a week. So little clues I might have noticed if we lived close to each other went by me.
My sister Carole was the one who first realized Mum had Alzheimer’s after Mum visited her in 1999. In July 2000, my husband and I visited Mum and I realized something was wrong. That December I was back for a week’s visit, to help my stepfather. I ended up taking my mother home, after getting the two of them legally separated, the finances sorted out and packing up way too much clothing and household items.
She had to be sectioned four days after we arrived in Ontario. Fortunately my sister was with me, as I don’t think I could have ever done it alone. After two weeks in hospital and being diagnosed with Alzheimer’s one month after her 64th birthday, Mum moved to a retirement home. She spent just over two years there and then moved to a nursing home.
As I’ve documented in many posts in the past, Mum had very aggressive and violent phases of the disease, physically and verbally attacking people. As the disease continued to progress, she started settling and becoming more content the last 6 or 7 years of her life. Over fifteen years after diagnosis, my mother died very peacefully.
Joanne and her mum
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.
Top: Grannie G and Dhiren in 2004, Bottom: Dhiren with his new walking stick Sept 2009
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 Talking Point 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.
Izzy and Bill
Ken was diagnosed with Alzheimer's in 2005, just 6 months before I retired. He continued to drive for 4 years and managed to keep running his own business with the help of a lot of notebooks. Holidays and most things stopped but we got by.
Then, Ken's health nose-dived and he spent 9 weeks in an assessment unit. We were told that his needs were very complex and he needed to be in a nursing home specialising in challenging behaviour.
We visited over 20 homes before finding the right one, just 10 minutes drive from home. Ken had 1:1 care 24 hours a day and it was comforting to know that he was well cared for.
Ken passed away in March 2016, 11 years after he was diagnosed. We were truly blessed to have such a high standard of care from the care home - something we never took for granted.
TP has helped me beyond words. So many people ready to share their experiences, show kindness and no judgement. I cared for my husband alone and I received great help and understanding from TP. I look forward to helping others.
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 Talking Point 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.
LynneMcV and Niven
Thank goodness for TP. It was such a relief to find others living with dementia in their lives; I instantly felt less alone, though I was so saddened to discover how many of us there are.
When my dad was diagnosed with Alzheimer’s in 2012, I wasn’t surprised as I’d been concerned about him for quite some time, but I was shocked and at a loss as to what to do. I found TP and only read around for some months, gaining knowledge and confidence from the information and support so readily offered. I started posting when I realised I had some experiences to share.
My mum died in 2006, after a stroke nearly 2 years before; Dad had cared for her. Dad and I then both became hooked on family history research. We shared many outings to places our ancestors had been before us.
I moved closer to dad in 2009 and continued to work. Over time it became clear how much support dad needed. Late in 2013, I ‘retired’ to concentrate on dad’s care to help him live in his own home. In spring 2015 dad was no longer safe there and now lives in a local care home. We continued to have outings for a while but now he isn’t able to leave the home.
TP has helped me support dad and cope with a role that doesn’t come naturally to me but has enriched my life. As a volunteer, I am able to give back to a community of folk who have sustained me, and my dad, over the last few years.