Jun 28, 2010

Finding the Balance

By Cass Alexander

Cass Alexander

Alzheimers New Zealand’s media advisor Cass Alexander gives her perspective on how people with dementia are perceived.

1985….Deep in New Zealand’s South Island. Dementia carers looking for support and camaraderie decide to set up a group to share their experience. This group morphs into Alzheimers Canterbury, the first of 23 local organisations now running throughout New Zealand.

For over two decades, Alzheimers New Zealand has helped people with dementia in some form or another, depending on the support required by their community. The majority of Alzheimers New Zealand organisations have contracts with their local, government-run health boards. Some groups cater specifically for primary care givers and families, most do home visits and some have day care centres where “clients” - for lack of a better word - share lunch, engage in craft and sporting activities, chat with their peers and have some fun. This gives both the person with dementia and their carer and break. A myriad of Kiwis affected by dementia engage in groups run by Alzheimers New Zealand: children of those with early onset, spousal carers, people with younger or early stage dementia…men’s groups, walking groups…

Wherever there is a need, our, enthusiastic, committed and benevolent staff try to fill it.

As a national organisation we raise awareness through media, fundraising campaigns, public relations, events and social networking (like, blogging and our Facebook page). We try to twist the arms of politicians to put dementia on the agenda. We wrote a National Dementia Strategy, which was received in Parliament by our Minister of Health. He said dementia was a key issue for the future of New Zealand and his Government was committed to working to ensure people with the disease receive quality services. The first of the eight goals of the Strategy was to make dementia a national health priority. Australia and the UK have achieved this. Watch this space!

We consulted other not-for-profits and charitable organisations, the health system, politicians and government. We asked people with dementia and their families to give us their voice in order for them to shape the way forward in terms of what they want. Which brings me to the crux of this piece.

We were delighted to have Richard Taylor, a former psychologist from Texas, diagnosed with dementia in 2001 at age 58, address the audience at our People, Policy, Partnership Conference, held in the capital city, Wellington, at the beginning of May.

Linda and Richard Taylor

Richard is eloquent, intelligent and passionate. He is challenging. He challenges the concept of dementia. He is not “old”, tucked in a corner. He still has fun. He also challenges how society, the media, drug companies and even organisations such as ours, conceptualise people with dementia. It is refreshing to be challenged. Yes, dementia can be “devastating and “horrendous” - words I have read in recent articles, and which I am prone to using in my role to grab the media’s attention. But people with dementia have not lost the capacity to learn or engage in society.

Recently, one of our Sunday papers published an article originally written for the UK Guardian. In it, Susanna Rustin writes about sociologist and care home owner John Zeisel’s argument that society must change the way it thinks about dementia. Zeisel says dementia is not “nearly so bad as we think”, and can even be considered a gift. His advice to people with loved ones with dementia: tell them you love them and write a list of things to talks about they can no longer follow conversation. He asks why we mourn for people with dementia when they’re not dead.

Richard Taylor reinforced this point to over 600 New Zealanders as part of the conference and during a series of talks as part of a “dementia road trip” in provincial areas throughout the North Island.

“We have a long way to go to understanding the humanity of people with dementia. We have a moral obligation to invest our limited resources in people who can’t take care of themselves before we start investing our resources in people who can take care of themselves. People with dementia are whole human beings. We are not fading away. We are not half full. We call Alzheimer’s the long goodbye, and in fact we say that in front of people with dementia. Our cognitive abilities are different from yours but we still hear the same things you hear. We still see the same things you see but we interpret them a little differently. We’re different and you assume because we are different we are not all there. We are all here. ”

As both a service provider and the organisation responsible for making the community and the government aware of what dementia does to New Zealand, socially and economically, sometimes we need to pull out the big words and concepts. We say the growth of dementia (a population rise from 1% in 2008 to 2.7% in 2050) is an ‘epidemic’ or a ‘tsunami’ and that the health system will not be able to cope if we don’t take action now. We tell stories of how hard it is for some families, where financial support is limited and where former friends vanish because there’s something ‘not quite right’ with John down the road, whom they used to play rugby and have a beer with. We talk about children whose parents can no longer spend time with them the way they used to and for those parents, we talk about the pain of having to give up work , driving a car, and for some, family responsibility.

But we are also talking more and more about recognising what the disease really is: a change in cognitive ability, as opposed to a complete removal from society for people who no longer inhabit the same world as the rest of us.

Hopefully we will get to the point where, like our Ministry of Health did with its advertising campaign featuring prominent All Black John Kirwan talking about his experience with depression, and we can start to:

address the illness as it is
destigmatise the public fear of brain-related illness
move forward with people with dementia firmly in the middle of our strategic direction
The latter is happening for our organisation with two people with dementia elected on our national board. We also have a consumer reference group who inform organisation-wide decision making.

Thanks Richard, for your dedication to spreading the word about what it is like to live with dementia, moreover, for challenging society’s perceptions about how people with dementia should be not only be treated, but perceived.

Alzheimers New Zealand’s Awareness and Appeal Week runs from 12-18 July 2010.
To donate, please go to http://www.alzheimers.org.nz/donate-2/

Cass Alexander is the media advisor with Alzheimers New Zealand. She has been in the role just over a year and works from New Zealand’s capital city, Wellington. Prior to this, in another not for profit role, Cass worked for the American Field Service (AFS), organising publicity and writing publications. She has also worked in various roles in London and Ireland.

Please note: the views expressed in this article are not necessarily the views of Alzheimers News Zealand.

Cass Alexander is the media advisor with Alzheimers New Zealand. She has been in the role just over a year and works from New Zealand’s capital city, Wellington. Prior to this, in another not for profit role, Cass worked for the American Field Service (AFS), organising publicity and writing publications. She has also worked in various roles in London and Ireland.


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Original content Cass Alexander, the Alzheimer's Reading Room