Simplify the complex advises dementia expert

Tackling a power bill or a bank statement, searching supermarket shelves for a product which has been shifted or even following road signs can be too difficult for people with dementia.

This may be a challenge now for those living with the symptoms, as well as for businesses and urban designers, but it will become an even more significant issue in coming years with predictions the number of cases are predicted to almost triple worldwide.

It will be the same in New Zealand where there are currently 60,000 people with dementia but that number is expected to climb to 154,000 by 2050, according to Alzheimers New Zealand.

Professor Graham Stokes, the global director of dementia care at BUPA, says he would like to see organisations move to more simplified systems.

Graham Stokes

“People with dementia are confused by complexity.

“When it comes to the bills from [U.K.] power suppliers – they put everything in there – whether they’re carbon neutral, what carbon targets they’re meeting.

“It’s all overwhelming and, at the end of the day, most consumers aren’t interested.

“They can ask for it if they’re actually interested so let’s simplify documentation, simplify the bills, simplify the procedures.”

For similar reasons, bank statements can be very challenging.

He says supermarkets in the U.K. have offered to change their car parking because if you’ve got a poor memory, you might not be able to locate your car.

But Professor Stokes believes changes need to go further than that.

“Equally it doesn’t help when you move the produce around to different shelves to capture impulse buying and move products away because people with dementia need routines.

“They have great difficulty remembering what is new.”

He also says it would probably help to have staff at call centres trained to be dementia aware.

“Have people they can talk to, who [don’t] get challenged themselves with somebody having difficulty with remembering what’s been said and concentrating, and having problems getting their words out.

Training needed

The expert, who is attending an age friendly and dementia forum while in New Zealand, would like training for drivers in public transport.

“Have drivers aware there will be people who will be very muddled and can’t think fast enough so the bus drivers should become aware about an agitated aged person and start finding out why that might be the case.”

For those still driving, clear signage is needed.

“I was in Auckland and I needed to get into the city centre and I found the signage confusing – how to get from where I was, so how would it be if you were living with dementia?

“It’s that clear signage and not necessarily relying on the written word – [using] symbols to convey because we know that words are very difficult for people with dementia to retain the meaning of.”

As a leader in the field, he is not interested in tokenistic gestures.

“In the UK we have dementia friendly power suppliers and supermarket chains but I’m questioning [these claims] because it doesn’t feel any different.

“I think that we need to actually have standards which allow a business and community to say we are dementia inclusive and supportive, and we’re at the very beginnings of such a movement.”

alzheimers-group-listening

Professor Stokes would like retail, power suppliers and transport companies to hear the same message.

“Here you have people who can’t remember well, they can’t concentrate well, they have problems communicating, complexity is very challenging to them.  How can we enable those people to live better lives?

“That’s what the whole dementia friendly movement is all about.

“It’s really green shoots – these are really early days.

"There’s no evidence base yet as to what a dementia friendly community delivers, there’s no agreement as to what a dementia friendly community even looks like.”

Living longer

New Zealand is just one among many countries expecting an increase in dementia numbers.

There are estimated to be 45 million people with dementia but that will rise to more than 130 million within 35 years.

“In essence, it’s the ageing of the population across the world,” says Professor Stokes.

“In high income countries, a baby boomer generation born about mid to late 1940s through into the early 1960s, are living longer lives so that wave is coming through.

“In the low to middle income countries, it’s less to do with baby boomers and more to do with their putting in place better immunisation programs, and hygiene policies which is uplifting life expectancies.

“So, with the ageing of the population across the world, you see dementia increasing because that’s an age-related condition.

“Roughly two-thirds of people with dementia are over the age of 80.”

The dementia expert says if people are going to be enabled to live better lives, even live well after a diagnosis then “what we need are communities that are more supportive of those who are living with dementia and those who are [their carers]”.

Professor Stokes says with many governments in austerity mode, communities will need to be more active.

“Communities need to be supportive and inclusive so people with dementia aren’t just treated and accepted in a kind fashion, they’re actually valued and respected and enabled to live better lives.

“If you’re diagnosed, by a specialist, at age 70 with Alzheimer’s disease, you’ll live to 81.

“The probability is that it’s only in the last 2-3 years that the social services will become involved because your needs are seen as complex.

“So what happens in the other 8/9 years – that’s where you’ll find people living poorly and they’re drifting towards extraordinary burdens and critical episodes, and that’s where the community can find a base.”

Editor's note: This is the first in a two part series.