Yesterday was World Alzheimer’s Day, and a number of countries and organisations published reports and Press Releases to acknowledge its significance. Dementia stigma to blame was published by DPS News yesterday, as was the Alzheimer’s Disease International World Alzheimer Report 2012: Overcoming the stigma of dementia. Here is the whole report.

The brief Summary in the ADI report says; “The negative perceptions of individuals and society regarding dementia may lead to the isolation of people with dementia and their carers, and also reinforce and extend isolation caused by the effects of the disease. There is a widespread assumption that people with dementia cannot take part in ordinary activities. There is also a widely held perception that they have no quality of life or capacity for pleasure. While the symptoms associated with dementia affect the way a person with dementia interacts with others, and some activities may be inappropriate as a result, there are many activities, sometimes with adjustments to take account of the disability, in which they can participate. Both people with dementia and their family members will benefit from continuing, whenever possible, to engage in as many activities as they can. Moreover, people with dementia should be encouraged to make decisions or partake in decisions that affect them for as long as possible, to maintain their dignity and self-esteem.”

Part of their Recommendations include; “Give people with dementia a voice and let them speak about their experiences in public. They have proved to be powerful spokespeople for Alzheimer Associations. Do not assume that it is not possible in your country. It is important to consider the abilities of the person with dementia you are working with, and think through issues such as transport arrangements for them and what time of day may be best for them. For more tips on involving people with dementia as spokespeople, visit www.alz.co.uk/worldreport2012 The voices and needs of people in the middle to later stages of dementia are also important. People in these stages can communicate in a variety of ways and are often misunderstood and undervalued; more education and support is needed for both informal and paid carers and in care home settings. We recommend that every country develops a national Alzheimer’s/Dementia plan and, in large countries, even regional plans. Good examples are available, as well as support from the WHO, ADI and Alzheimer Europe. These national Alzheimer’s/Dementia plans should include initiatives aimed at creating Dementia Friendly Communities.”

In South Australia, not one event was planned to coincide with World Alzheimer’s Day, and I am yet to discover if the other states had anything to highlight this day. Again, I have been nominated to join the board of Alzheimer’s Australia SA, so will let you know after 16 October if they are willing to give a person with dementia a voice.  One Board member wrote to me and suggested it may not be appropriate for a PWD to be on a Board…  Alzheimer’s New Zealand has a person with dementia on their National Board. It says about Nigel Wynn: “Nigel has been a board member for over two years. He has a background in finance and ran a very successful share broking firm in Wellington for many years. Nigel has early [younger] onset Alzheimer’s disease and provides invaluable insight about how best our organisation can meet the needs of people with dementia. Since his appointment to the board, Nigel has contributed to the governance of the organisation by representing people with dementia. He has acted as a spokesperson for Alzheimer’s New Zealand giving voice to the thousands of people who have dementia in New Zealand.” Congratulations Alzheimer’s NZ.

I welcome this change in Australia, and hope more people with dementia start speaking up for their right to be heard and more importantly, fully involved in their organisations. I do believe it is stigma, and discrimination that has been holding back the proper and rightful places of people with dementia at conferences and within organisations. Although there are a few people with dementia on national and state committees, this seems vaguely tokenistic as the ratio compared to paid staff and family carers is very unbalanced. To allow people with dementia to stand up, to speak out, to be involved and to be heard… is the most important next step for and the people and organisations advocating for them.