A newsletter of the statewide ACE DisAbility Network			December 2010

Website:
www.acedisability.org.au

Your help line
(03) 9916 5821

Wishing you all the best for the holiday season and a happy New Year.

In Memoriam

This year has seen some busy and exciting times but also some sad ones. In particular we would like to acknowledge the very sudden passing of Robyn Murray who worked for Glen Park and more recently Japara Neighbourhood House. Robyn is probably best remembered for the Open Door project but she was always a wonderful advocate for the inclusion of people with a disability and she will be greatly missed.

Research project
Over the past few months, the ACE Disability Network has been working on an ACFE funded research project looking into good practice in inclusion in adult community education.

Many thanks to each of the 121 respondents to our survey and to those who contributed to the four focus groups we ran across the state. It is too early to provide any definite results as yet, except to say that the level of inclusion seems to have improved enormously since our last survey in 2004.

We are still analysing all the information we were given but some of the issues that have been aired include:
•	Issues concerned with inclusion of people with mental health problems
•	Duty of care
•	The need for more specific training of teaching staff
•	The rising incidence of people with dementia attending centres.

With the ageing of the population this last could be an increasingly more relevant issue, so this newsletter focuses on this topic.

We will be looking at some of the other matters mentioned in later issues.

Contents

In Memoriam   	 	1

Research Project		 1 

Call for policies	           2

Dementia      		            2
         
Dementia Tip Sheet		 4    	     

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Good practice sto

CALL FOR POLICIES	
The final stage of the research project is to find examples of good inclusive policies. These need not be disability specific but do relate to inclusion in genera. If you have policies you would like to share with us on:
•	Access and equity (participation and enrolment)
•	Curriculum development, delivery and assessment
•	Harassment and discrimination
•	Any other aspect of inclusion
please send them to: judy.buckingham@yooralla.com.au

Dementia
References:, http://www.health.gov.au/dementia; http://www.betterhealth.vic.gov.au   http://www.virtualmedicalcentre.com  

What is dementia?
Dementia is an umbrella term that refers to symptoms caused by changes in the functioning of the brain. These can include alterations in memory, personality and behaviour. A person with dementia may find it hard to do previously familiar tasks, such as writing, reading, showering and using numbers. Alzheimer’s disease is the most common form of dementia.

It is estimated that around 250,000 people in Australia have dementia. As Australia's population ages, more people will be affected. With the projected rise of Australia's aged population, it is estimated the number of people living with dementia will increase to almost 591,000 by 2030.

Dementia is not a natural part of ageing and there are many different types of diseases and conditions that cause dementia-like symptoms. After the age of 65, however, the likelihood of being diagnosed with dementia doubles every five years. People over the age of 85 years of age currently have a one in four chance of developing dementia. 

Losing the ability to communicate can be one of the most frustrating and difficult problems for people with dementia, their families and carers. As the illness progresses, the person with dementia gradually loses their ability to communicate. They find it more and more difficult to express themselves clearly and to understand what others say.

Some changes you might notice in the person with dementia include:
•	They may have difficulty in finding a word. A related word might be given instead of one they cannot remember.

•	They may talk fluently, but not make sense.
•	They may not be able to understand what you are saying or may only be able to grasp part of it.

•	Writing and reading skills may deteriorate.
•	They may lose the normal social conventions of conversation and interrupt or ignore a speaker or fail to respond when spoken to.
 
•	They may have difficulty in expressing emotions appropriately.
•	They may be overly suspicious and make seemingly wild accusations. You should firstly check that the accusations and suspicions are unfounded. To reduce aggressive behaviour, look for patterns or triggers of behaviour. It may be a result of discomfort and an inability to communicate the reason. It may also be helpful to keep the environment as familiar as possible to reduce the chance of upsetting the person. 

•	They may constantly repeat the same behaviours or ask the same questions. To stop repetitive behaviour: 
­	Distract them using actions or by placing a ball in their hands.
­	Use memory aids such as noticeboards or an album of photos of people with names attached to them. 

Activities for people with dementia
 Engaging in activities help dementia sufferers stay occupied.  People with dementia really need a sense of accomplishment, and something a bit stimulating not always just entertaining. Some handy hints are: 
•	Allow old roles between the person and carer to be established. For example, give them small responsibilities such as folding pamphlets.
•	Make sure activities are simple and unhurried, allowing the person to complete the activity without feeling pressured by time constraints or other people. For example, painting allows self-expression and relaxation. Remember that this kind of activity will only be complete when the person with dementia says it is. 
•	Make sure you are in a safe working area. For example, don't use toxic paints or sharp instruments. This will prevent any accidents and distress occurring during the activity.
•	Plan activities for when people are at their best during the day, to derive the greatest enjoyment from the activity.
•	During the activity, do not overwhelm people by overstimulating them. For example, flashing lights or loud background noises should be avoided.
•	Some people will benefit from activities that focus on sensations. For example, brushing their hair or receiving a massage can be enjoyable activities. Similarly, a sense of rhythm and movement may encourage them to carry out an activity.
•	Play music and encourage them to participate (e.g. clapping or moving to the music).
Activities should also be consistent and, if possible, regular. This will prevent the person from feeling disoriented or needlessly confused. If multiple carers are in charge of one person, it may be helpful to use a timetable to coordinate activities

Where to get help 
•	Your local community health service 
•	Your local council 
•	National Dementia Helpline Tel. 1800 100 500 
•	Dementia Behaviour Management Advisory Service (DBMAS) Tel. 1800 699 799 – for 24-hour telephone advice for carers and care workers 
•	Aged Care Assessment Services – contact your regional Department of Health office 
•	The Aged Care Information Line Tel. 1800 500 853.

DEMENTIA TIP SHEET    
: 

Communicating with a person with dementia
When you talk to a person with dementia: 
•	Remain calm and talk in a gentle, matter-of-fact way. 
•	Keep sentences short and simple, focusing on one idea at a time. 
•	Always allow plenty of time for what you have said to be understood. 
•	It can be helpful to use orienting names or labels whenever you can, such as ‘your son Jack’.
When communicating with a person with dementia, try to: 
•	Avoid competing noises, such as TV or radio. 
•	Stay still while you are talking. This makes it easier for the person with dementia to follow what you are saying. 
•	Maintain regular routines – this helps to minimise confusion and can assist communication. 
•	Keep a consistent approach. It is much less confusing for the person with dementia if everyone uses the same style of communication. 
•	Allow time to speak. Try not to finish sentences for the person. Just listen, and don’t let them feel embarrassed if they lose the thread. 
•	Don’t rush them into something. The person with dementia needs time to think or respond and to let you know whether they really want to do it. 
•	Find ways to talk without questions, which can alarm or make a person feel uncomfortable. If they have forgotten something special that happened recently, don’t assume it wasn’t special for them too. Just give us a gentle prompt. However don’t try too hard to help them remember something that just happened. If it never registered, they are never going to be able to recall it. 
What NOT to do
•	Don’t argue with the person. It will only make the situation worse. 
•	Don’t order the person around. 
•	Don’t tell the person what they can and can’t do. Instead, affirm what they can do. 
•	Don’t be condescending. A condescending tone of voice may be picked up, even if the words are not understood. 
•	Don’t ask a lot of direct questions that rely on a good memory. 
•	Don’t talk about people in front of them as if they are not there.
Remember 
•	Losing the ability to communicate can be frustrating and difficult for people with dementia, their families and carers. 
•	Positive communication can help a person with dementia maintain their dignity and self-esteem.