Day 17: Dementia Awareness Month 2014
It was a pleasure and honour to be presenting before Steve Milton yesterday in Kiama, and along side a woman called Veda Meneghetti who also lives with younger onset dementia. I have added the presentation I gave below, although you will not get any sense of the fun Veda and I had talking about her photos. Veda was a star, and I was honoured to share the podium with her.
“Thank you for inviting me to speak today. It is an honour and pleasure to be here. There are two things we can all do today which cost no money at all. To be respectful and kind to everyone, including people with dementia.
As part of their commitment to dementia friendly communities, I am very proud that Alzheimer’s Australia has appointed me, a person living with a diagnosis of dementia, to be a consultant to them on the dementia-friendly communities’ project.
We know that social isolation is still one of the major issues associated with a diagnosis of dementia. I know from personal experience that dementia can have a devastating impact on the social lives of people with dementia, and many people have stated that they wished they had more social contact with people in the community, and that a fear of becoming lost is a major barrier to them going out and enjoying activities, for themselves and their family carers.
Small actions do count towards making a big difference to the everyday lives of people with dementia. The dementia friendly initiative at Kiama is in fact a huge step on your part, and shows the commitment to people with dementia living well. It is obvious Kiama is already a very friendly place to live, and that as a smaller regional community where many people know each other, it is easier to be inclusive, kind and respectful.
The main priority for creating dementia-friendly communities is to improve access to social activities and opportunities for engagement including employment and volunteering. Each dementia-friendly community will look different but may include simple changes like training staff to better communicate with people with dementia, providing volunteering and employment opportunities for people with dementia, as well as providing access to social activities such as sporting clubs and social groups.
We know that people with dementia are part of social networks, and these social networks include family caregivers and family physicians. We also know the quality of social relationships can have a beneficial effect on the quality of life of both a person with dementia and friend/family.
It is believed the quality of social relationships can have a protective effect against the progression of the dementia itself. There is evidence on social networks and brain development. Non-pharmacological interventions for dementia are likely to have an important role in delaying disease progression and functional decline, and are in fact part of being a dementia friendly community as people with dementia need support and enablement for man of the interventions. In a study done in 2010 in Japan, the researchers found to obtain good results with non-pharmacological therapy, the core is not ‘what’ approach is taken but ‘how’ the therapists communicate with their patients. This is interesting in the context of dementia friendly as the authors claim best results are obtained not on how or what the interventions are, but on the communication about them WITH the client.
At 49 I was diagnosed with a rare younger onset dementia. Just four years earlier I underwent neurosurgery to treat an Arnold Chiari brain malformation. Up to that point, I had built successful careers as a nurse, a health care sales executive and a chef in my own food business. My illnesses may have spelt the end of those career pathways, but they inspired a new one in writing, advocacy and community service.
Illness has increased my humility and my concept of humanity – and while I still have a voice, I feel a responsibility to speak out for those who don’t. I cannot speak for everyone with dementia as my experience is simply that, my experience. Stigma and discrimination is still very real amongst the community, employers, and the health care sector.
I speak out to raise awareness, change perceptions of dementia, and break down barriers caused by the stigma and discrimination.
The central point of my work is my extensive website and blog, which has been archived in the PANDORA Collection of the National Library and South Australian State Library and is a globally recognised academic resource with many followers, and now my work with Alzheimer’s Australia on their dementia friendly initiatives around Australia. I also volunteer for the homeless in my spare time, not only to help others, but to ensure I see my own life with perspective, without being too self centric and focused on my deficits.
Currently I am working with a UK publisher on a book about my experiences living with dementia and also preparing the release of two new volumes of poetry, to go with this one. My story My Unseen Disappearing World was performed at the 2012 Adelaide Fringe Festival. As you can see by the famous guitar belonging to Veda, we do not give up wanting to live creative and normal lives.
I am proud to be able to stand up today and represent so many who either can no longer represent themselves, or have been so disempowered by dementia they have stopped speaking up for themselves.
Becoming dementia friendly might mean the following:
- Include people with dementia at every step
- Setting up small Advisory groups of people with dementia; having them join a large working group is not necessarily dementia friendly for everyone with dementia
- The environment, including signage, noise levels, and location is imperative
- Support for disabilities, in the same way as any other disabled person
- Be respectful with the language
Australia, along with many other countries including the UK is focused on becoming dementia friendly. The Associations and Organisations advocating for people with dementia and their family carers are sitting around tables, inviting guest speakers to present at events and teach others how to make their organisations and communities’ dementia friendly, and seemingly taking the notion of communities being dementia friendly seriously.
The pieces of the puzzle missing to me are the internal Audit that needs to be done, inside the organisations advocating for us, and the full inclusion of people with dementia. These working groups must all be fully inclusive of people with dementia, whether as smaller groups of advisors or active participants.
The Kiama dementia friendly community pilot project is hoping to address both of these issues.
Not having people with dementia, at the table, at every single meeting about them, about what their needs are, being part of the conversations, is not dementia friendly. This photo is of me at the 29th Alzheimer’s Disease International conference in Puerto Rico earlier this year, where I was part of a group of people with dementia from around the world introducing a new group of by and for people with dementia, Dementia Alliance International to the international dementia community.
If you are having trouble getting people with dementia involved, it is not them, it is something you are either doing wrong, not doing, or not doing well enough. It is not okay to say you cannot find us, considering there are 332,000 people with dementia in Australia currently, and between 1700 new diagnoses per week.
There is no way any country or community would be holding meetings or running events, on what an Indigenous, gay or disabled friendly community is, without large numbers of those people being present.
We are the experts through the lived experience, and are the only ones who can truly determine what is, and what isn’t, dementia friendly.
See the person and not just the dementia; ask us what is best for us; more often than not we will be able to tell you.
People with dementia would be better served to be advised to see the symptoms as disabilities to be managed, rather than a pathway to aged care and death which is how it is currently perceived. I hope that by example, I can show other people with dementia they can still live well with it; that they don’t have to accept the prescribed disengagement given at diagnosis and give up their pre-diagnosed lives. Others should also treat us with the same respect they show any other disabled person, with full rights to citizenship.
It now gives me great pleasure to introduce you to Veda Meneghetti. Veda was born in Adelaide in 1950 to an Italian father and Australian mother. She was called a “wog” at school. She was severely dyslexic but not diagnosed. She hated school and left as soon as possible to make a career from her music.
By the age of 21, in 1972, Veda was living and working overseas as part of an all girls band; she played in SE Asia, Europe and Africa till returning to Australia at the end of the 70s.
In the early-mid 80s she was part of the Party Girls band, (vocals and rhythm guitar). After the Party Girls disbanded, Veda formed her own band, Safari. She is a full writer member of the Australian Performing Rights Association and has continued to write songs.
Veda was diagnosed by Neuroscience Australia 18 months ago with LPA. She knows she’s a “rare bird” and is proud to be part of any research that might make a difference. She was part of the 1st Aids for Africa international simulcast in 1984.
She sees people she played with, knew personally within the music industry, dropping like flies…her generation of musos with 30-40 years of hard yakka to their credit. She’s quite proud of being able to add her bit to raise awareness and end the stigma.
We are going to discuss Veda’s life and diagnosis of dementia through some wonderful images she has provided, allowing you to very clearly see she is defined by so much more than a diagnosis of dementia.
It is very important we do not allow dementia to define us, or for others to define us by its symptoms. This is very much a part of being dementia friendly.
The images we discussed :
- Veda with her horse
- Another image of Veda on a horse
- Photography and gourmet taste buds!!
- Veda in action!
I closed with a story about staying positive of the psychologist doing happiness studies on 5-year-old boys.
Finally, it gives me great pleasure to welcome our international guest speaker Steve Milton.
Steve is one of three directors of Innovations in Dementia – a not-for-profit Community Interest Company in the UK. Innovations in Dementia work with people with dementia, partner organisations and professionals to develop and test projects that enhance the lives of people with dementia.
Steve takes a leading role on Dementia-Friendly Communities – and despite their small size – Innovations in Dementia’s work in this area has been highly influential in the UK, which has made the creation of dementia-friendly communities a priority of the Prime Ministers Dementia Challenge in 2012.
With a background in advice work and social care, Steve has been with Innovations since 2007 – and before that he set up and ran the National Alzheimer’s Helpline for eight years, and has spent many years as a freelance dementia trainer and consultant.
Steve’s Grandmother, Grandfather, and Father all had dementia. In his spare time he enjoys getting his truck stuck in ditches, thinking up excuses not to go diving, and cooking with chillies.”