Empowering People with Dementia through Online Support Groups
This week our blog is the excellent presentation given at the ADI2016 conference in Budapest by Dementia Alliance International (DAI) Board member and secretary Eileen Taylor, on behalf of our DAI Support group host and facilitator, Mick Carmody.
SLIDE ONE (1) Title
You can download the full set of slides here: Empowering People with Dementia through Online Support Groups
SLIDE TWO (2)
Good morning everyone, hasn’t it been a great Conference? Thank you Budapest. My name is Eileen Taylor, I am a board member of the DAI, I live in Brisbane, Queensland, Australia with my husband Doug and our toy poodle puppy, Hamish.
I was diagnosed with Familial Younger Onset Dementia of the Alzheimer type in 2009. My father and his brother died from the disease in 1994. While I am now trying to live well with dementia, it was very different on first being diagnosed in 2009 only fifteen years after my father’s death. The initial news left me shattered, “surely not me!.” It was the worst thing to happen to me, I was only 59.
I chose to pursue a diagnosis, due to my family history, and concern for my family. My husband Doug supported me on my search for a possible diagnosis; he has supported me throughout, and is here supporting me today. Thankfully!
I’m privileged to be speaking to you today since, a fellow DAI member, Mick Carmody, a person living with dementia, couldn’t make it to the conference due to health issues, and has asked me to take his place, and talk on the topic of online support groups.
SLIDE THREE (3)
My own story with Alzheimer’s begins in April of 2009, when we (my husband and I) saw a news item on television, about Research into identifying a DNA genetic link to Alzheimer’s Disease. It made me think about the possibility of my having the identified gene, along with word finding issues, and I had a need to find out for sure.
My GP, reluctantly, sent me for a Genetic Blood Test in the August of that year. It turns out that I did unfortunately have the faulty APP gene. According to the Alzheimer’s Australia, genes related Help Sheet, there are only approximately three percent (3%) of people with Younger Onset Dementia (or YOD) with a genetic link in Australia.
The GP then referred me to a Neurologist, who, after doing tests and hearing of my family history, as well as my concerns for my own family, suggested I engage in drug trials, and referred me to a research centre in Melbourne. He believed I would get a firmer diagnosis, as well as some ongoing support. The Melbourne Group, in turn, referred me to a local research facility in Brisbane who confirmed the diagnosis and I joined a drug trial that same year, 2009.
Unlike some, as we have heard in this conference, I was diagnosed early as it took about 3 months to get the diagnosis. Since then I have chosen to engage in research trials with the Prince Charles Hospital, in my home town of Brisbane. After all I would like to find a cure in my lifetime. My third trial is now in its’ fourth year and I go for monthly visits for the trial drug. This particular drug appears to be more successful for people who are in the early stages of the disease. I do this for my family and future generations.
My life since 2009 until the middle of last year 2015, when I retired, was one of secrecy, except with a few close friends and family members. It was almost the same as with my father, as we never talked about it. Secrecy has been a family pattern learnt from my own family of origin I/m sure was due to the stigma (which is still around today) associated with having dementia.
However, since being a member of the DAI for approximately 20 months, I feel empowered by it, I have chosen to be open about my diagnosis and do my best to live well with dementia.
SLIDE FOUR (4)
Dementia Alliance International
The Dementia Alliance International or DAI is the global peak body for people living with dementia, and was formed only two years ago and currently has over 1500 members worldwide. To be a member of the DAI the person needs a confirmed diagnosis of dementia and our members live all over the world.
It is an Advocacy and Online Support Group, and is a not for profit organisation. Part of the DAI’s vision is to eradicate the stigma, isolation, and discrimination of dementia, and enforce the human rights of people with dementia around the world.
SLIDE SIX (6)
As part of the support the DAI offers its members, it has online support groups for members. There are currently six online groups that meet around the world.
Mick Carmody who I mentioned before is the global online support facilitator and host for most of these International online groups. Each group has its own online room. There are groups in Australia, the USA, England, Scotland, Wales, and Canada. I just heard Nigeria is getting onboard and is due to start an online support group after this conference.
SLIDE SEVEN (7)
These regular weekly online support groups are for people with dementia, our members, living in their own homes, and, are at a time which is convenient for each particular group, therefore making it less confronting for the person.
The meetings usually last approximately 90 mins. I agree with Mick, when he says, he “has found that people find that getting online with like minded people is very empowering.” In that, they meet other people who understand what they are going through and are not judgemental or critical.
No medical advice is given and no dementia professionals are allowed to attend. The groups appear to be beneficial for people newly diagnosed with a dementia.
SLIDE EIGHT (8)
Mick says that, “all that is needed is a computer or tablet with an internet connection, a camera and a speaker, as well as a downloaded program called Zoom, and people can meet together face to face online.”
Mick says “some people cannot believe how simple, safe, confidential and enjoyable each meeting is.” Additionally, he said “it’s thanks to the late Dr Richard Taylor PHD” (an American psychologist who John Sandblom highlighted on the first day of this conference),”that the online group meetings were initiated.”
As part of Mick’s work with the DAI, and towards a Dementia Friendly World, he also talks with other advocates and organisations, encouraging them to host groups in other countries. Currently, he is working with people in Japan, Spain, Italy and New Zealand to further empower and engage people with dementia to reduce the stigma and isolation and therefore increase well being.
SLIDE NINE (9)
And, as such, since the European Dementia Friends Campaign mantra is about empowering people with dementia, to live in their communities without fear of stigma, the DAI is fulfilling this mantra across the world with their online support groups. Additionally, the DAI has other services it provides such as, their Cafe Le Brain online memory cafe, Meeting of the Mind webinars, and online Master classes, these provide opportunities for education, building capacity, and socializing with new friends. It also has a designated FaceBook Page and YouTube Channel (where you can watch recordings of the Master classes, conference presentations and webinars). There is also a weekly blog and newsletter.
SLIDE TEN (10)
While only part of the work of the DAI is about supporting people, through the online support groups, the DAI is also fulfilling The European Dementia Friends Campaign as it also endeavours to advocate and educate people. The Dementia Friends Campaign is about advocacy and education of the public, in the dementia language, to improve the quality of life, for those of us, living with dementia in our communities across the world.
SLIDE ELEVEN (11)
My own discovery of the DAI, happened in a roundabout way, through a reference in a book I read last year, called ‘Still Alice’, by Lisa Genova and now a film starring Academy Award Winning Julianne Moore, about a woman called ‘Alice’, a college professor who finds herself diagnosed with Younger Onset Alzheimer’s.
SLIDE TWELVE (12)
As I said earlier, from a personal perspective, since finding and joining DAI, and being involved as I am, has certainly been a very empowering experience, to belong to such a group. As you can see and hear, I’m talking to you today, and have recently become the DAI secretary, and co-host, of two of the online support groups, due to MIck’s ill health. So I thank him and DAI, for having faith in me, and giving me the opportunity to participate in their work.
If you know of anyone diagnosed with a dementia, we invite them to join Dementia Alliance International (DAI). Our contact details are on the slide.
Download Eileen and Micks power point slides here: Empowering People with Dementia through Online Support Groups