Monday, February 2, 2015

Alzheimer's Australia Dementia Workshop 10 November 2014

Alzheimer's Australia Dementia Workshop 10 November 2014

Karen from Alzheimer's Australia ACT
By Eleanor Kerdo, HCCA Policy Officer

In November of last year we held a Health Issues Group on dementia and how to support those in our community with dementia.

It was an extremely well attended session and Karen from Alzheimer's Australia ACT was an excellent facilitator.

It was both informative and for me quite personal having recently lost my Nana to Alzheimer's and my grandfather recently diagnosed with dementia. 

Karen started by telling us some of the facts about the disease. 



  • There are more than 342,800 Australians living with dementia
  • This number is expected to increase by one third to 400,000 in less than ten years 
  • Without a medical breakthrough, the number of people with dementia is expected to be almost 900,000 by 2050
  • whilst age is a risk factor it is not an older persons disease
  • There are approximately 25,100 people in Australia with Younger Onset Dementia (a diagnosis of dementia under the age of 65; including people as young as 30) 

  • Three in ten people over the age of 85 and almost one in ten people over 65 have dementia 
  • In the ACT 3 people develop dementia every week


  • 37% of people with dementia in the ACT receive formal care
  • 1/3 are from a culturally and linguistically diverse background

  • Dementia is not a normal part of aging
  • There is no cure

  •  There is a huge rate of people developing the disease, and not necessarily receiving the services they need. 

      

    For me it was interesting to explore and acknowledge that dementia and cognitive decline, whilst common in older people particularly is not a normal part of the aging process.

    Dementia is the symptoms of physiological brain disease. There is no cure.

    The physiological aspects of the disease can begin up to 20 years before symptoms occur.

    Family are often the first to notice symptoms of their loved ones, on average 3 years before an official diagnosis.

    There are many different causes of dementia which can be found by following this link.

    Early symptoms included; forgetting appointments, forgetting names, inability to perform complex tasks, difficulty finding the right words, lack of ability to judge distance and change in depth perception, and difficulty remembering recent events or conversations. 

    This is thought to be an issue with the hippocampus in the brain  which deals mainly with short term memory and executive functioning, however there is many different causes of dementia and a lot is still unknown.

    The rate of progression of the disease varies person to person.

    Often people with dementia do not loose long term memory so can be relating things to what they can recall for context so it feels like they live in a different reality.


    Alzheimer's Australia run a National Dementia Hotline  1800 100 50 which is confidential and offers information about support available to people living with or supporting someone with dementia and are able to refer to where to get legal advice or health services. 

    Alzheimer's Australia ACT also offer several services and workshops to support those in the ACT Found here.

    Karen then gave us some tips around dementia friendly homes and design. There are several fact sheets available on this .

    What I found most interesting was how perception of the physical environment changes, often leading to people living with dementia struggling to participate as they used to or feeling anxious or fearful.

    For instance the ability to differentiate different sounds from a group of sounds becomes difficult. So communication becomes increasingly difficult if there is lots of environmental sound. If you are trying to give an instructions often showing what you are doing while speaking as visual aids makes it much clearer. There was also a suggestion to leave up to 7 seconds between questions to allow for a processing time and a response.

    Another tip which I wish I had when my Nana was living with dementia was the idea of a Life Story Book. This is a book containing photos of the person with dementia in every year of their life. Then each day you can ask the person to point to who they recognise as themselves and that gives you an idea as to where they are in time so you can communicate more clearly with them.

    Visual cues where often suggested such as wearing a dressing gown if trying to encourage someone to sleep so they can see it is night time, or cooking food in-front of people that the process is seen and there is cooking smells.

    Pain and dementia was also discussed as there is often a myth that those with advanced dementia cannot feel pain. However all people with dementia feel pain though it can sometimes be hard to assess as they may struggle to communicate this or recognise that they are in pain. Nurses and health care professionals should be educated to recognise this and there is more information on this here.

    I was fascinated to learn that those with dementia often struggle to visualise the world in 3D and have a changed depth perception which means they can have a different way to see and can struggle with the geography of their own body, seeing patterns, perceiving the world and have a reduced field of vision.

    For instance a black and white kitchen tile might look like the black tiles are deep holes that the person could fall into so they may be reluctant to walk on that surface. This is true of zebra crossings also. 
    Those with dementia may see the black tiles as holes which they may fall into.


    Similarly a highly polished surface may look like there is  running water over it again making people uncomfortable to walk in that room.

    Making sure a room is well lit and avoiding patterns can make things easier for people. Avoiding all white in a room also helps as it is hard to distinguish a white toilet from a white tile floor if you cannot see in 3D! So changing the seat to a bright colour can help. Or changing to colourful sheets on a bed may help people locate where the sheets on the bed is.

    The main tip was to create meaningful activities with people living with dementia. Often peoples procedural memory works, for instance my grandfather was an electrician and is an avid gardener so activities that may hold meaning for him might involve the garden and small electronics tasks.

    I wanted to thank all who attended for sharing their personal stories about living with or supporting people with dementia. I was touched by the openness of the room and the willingness to learn about how to make our community more inclusive for those living with dementia. 

    We are conscious of dementia friendly design for all of the new Health Infrastructure in Canberra such the new University of Canberra Public Hospital.

    There are lots of great resources on the Alzheimer's Australia website if you like more information.

    Eleanor