Survey Invite: Dementia & air travel

I came across this through LinkedIn. An Australian researcher in the field of dementia is looking for experiences of how dementia affects air travel. If you are a care partner, have dementia, or work at an airline or airport, you are invited to participate. Links are at the bottom of the article.

Air travel and dementia – understanding the challenges for travellers, carers and airlines

18 June 2015

As the number of people with dementia grows it’s increasingly critical to understand its impact and how to manage it in a range of circumstances including air travel where no guidelines currently exist for airlines or airports.

Dr Maria O’Reilly, QUT Research Fellow with the Dementia Collaborative Research Centre: Carers and Consumers (DCRC:CC) has launched two surveys to ‘start the conversation’ by seeking input from people with dementia, carers, pilots, flight attendants and other airline and airport staff on their experiences.

“We know confusion can occur under high altitude conditions and that increases the risk of a person with dementia experiencing medical complications like disorientation and agitation,” Dr O’Reilly said.

“Air travel is so accessible these days and having dementia should not automatically stop an individual with dementia from flying but we need to explore the implications of flying for people with dementia, their companions, other passengers and airline and airport staff.

“The surveys, being conducted on behalf of the DCRC:CC is designed to provide ideas and strategies towards the creation of guidelines for airlines and airports and appropriate advice for travellers with dementia and their companions, as well as training for staff on how to recognise and deal with a situation involving a passenger with dementia.

“The surveys will help us understand what the barriers are to air travel for people with dementia. Guidelines exist for other impairments and dementia is not going to become less of an issue any time soon.

“There are two surveys – one for people with dementia and carers and the other for airline and airport staff. They have been put together with assistance from a panel of experts including a pilot, a former flight attendant and someone with dementia who is a seasoned traveller.”

According to Alzheimer’s Australia there are now more 342,800 Australians living with dementia, a figure that will almost triple by 2050 without a medical breakthrough.

Of these, approximately 25,100 have Younger Onset Dementia (a diagnosis of dementia under the age of 65), while around 1.2 million people are involved in the care of a person with dementia

Dr O’Reilly said the surveys take only 10-20 minutes to complete and are anonymous although participants also have the option to volunteer to be contacted by the research team for an interview.

People with dementia and their carers can access the survey on flying at http://bit.ly/1FxtoQh

The survey for airline staff can be completed at http://bit.ly/1cB7q6T

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Breaking down stigma – research on societal attitudes about dementia

In 2010, Northern Ireland Life and Times (NILT) Survey was conducted in order to influence policy on dementia in Northern Ireland. This report, published in 2011, included a module of questions exploring attitudes and knowledge of dementia.

Critically, this survey has inquired about perceptions, attitudes and awareness of dementia. We know that just under 50 per cent of those who partook in the survey had direct experience of knowing someone who is living with dementia, of which half are a family member. The views reflected by the survey confirm much of what needs to be challenged about attitudes, care and services for people with dementia and the need to address this in public policies and research, as well as in practice through the provision of services.

The survey results highlight the public’s knowledge of dementia (happily, 94% know that it is a disease of the brain), how people describe dementia (90% of respondents said ‘confused’ was the main way they would describe the appearance of someone with dementia), how society thinks about and cares for people with dementia (83% said ‘there comes a time when all you can do for someone with dementia is to keep them clean, healthy and safe’), and views on the effects of dementia over time.

It makes me incredibly sad that around half of the respondents felt that once someone has a diagnosis, they are not longer viewed as a capable, thinking human being. This highlights the point that most people think of people who have dementia as one group – the oldest old who are in the later stages of dementia. They don’t typically think of the younger people with dementia, the people who are still working at jobs or caring for their families, the people who are still writing books and educating others.This viewpoint perpetuates stigma and makes it much more uncomfortable for people with dementia to share their diagnosis with their friends and family. My hope is that this changes in the coming years, that more people with dementia will share their voices and experiences, and that more of the public will realize these are thinking, feeling human beings who are still capable of many things.

It’s an interesting report, you can read it in full here.

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