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Thursday, December 7, 2023

A person-centred dementia program that’s changing lives

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Working in the office adjacent to a 3Bridges meeting centre for people living with dementia and their carers, Amal Madani would often hear music, singing and uproarious laughter.  

“I don’t know how many times I would think, ‘what are they doing that they are laughing that much?! I will just sneak down and have a look’,” the general manager of Reframing Ageing recalls. 

Based in Sydney, 3Bridges is a registered charity offering a wide range of programs supporting the community, from early years to ageing well.

The meeting centre in Kyeemagh, is part of an Australian-first, implemented after a successful 2017 trial of the Meeting Centre Support Program, founded in the Netherlands and taking off across the world.   

The centre is open four days a week from 10am until 3pm for members, that is people living with mild to moderate dementia, to attend.

Their family carers are also welcome at any time, or they may choose to take the time for some respite, leaving their loved ones in the capable hands of staff and volunteers.

“What we deliver during the day is a range of psychosocial activities that we ensure are part of every day’s program,” Madani explains.

“The first half to one hour is just a chat and morning tea, checking in, reading the paper and having that informal discussion with everyone.”

Next comes one hour of exercise physiology, with activities specially designed to use two parts of the brain, working coordination and balance.

The afternoon involves either music therapy or reminiscence therapy and cognitive exercises.

“The centre itself is in a beautiful location surrounded by gardens, so walking is always part of it if the weather is right,” Madani adds.

“Some members go to the garden and either walk or talk about some of the flowers or herbs.”

Others, she says, may choose to do sudoku or play board games, the options are all based around preferences of the individuals and designed in consultation with their family carer.

“It’s truly an example of person-centred care that allows members living with dementia to come to what they call home.

“Everyone is doing something, they’re cooking together, one or two will be setting the tables … and we allow the dignity of risk,” Amal Madani, general manager of Reframing Ageing, says.

“They don’t call it a centre, to them it’s another home, the other members are their friends,” Madani says.

While she no longer works above a meeting centre, Madani relishes an opportunity to visit, especially around lunch time.

“It’s actually beautiful to go, especially in the middle of the day … the place is buzzing with action.”

“Lunch is not served, lunch is prepared with the members who are living with dementia.

“Everyone is doing something, they’re cooking together, one or two will be setting the tables, others will be cutting vegetables and we allow the dignity of risk. It’s all supervised,” she says.

“That’s how their skills are reactivated.”

Madani says if you walked into a meeting centre you would not be able to tell the difference between staff, members and volunteers.

“Everybody wears just a name, we don’t have tags specifying that this is a staff member, just a name ‘John’, ‘Maggie’, ‘Maria’, it’s just so beautiful.”

The innovative program has recorded a number of benefits, such as members showing less depressive symptoms and challenging behaviours, and they have a higher self-esteem than clients in regular day-care.

They also experience less psychosomatic complaints and tend to be able to delay entry into a nursing home.

Carers have reported an increased feeling of competence, feeling more supported and less burdened.

Madani says the program is great for people with younger onset dementia, whose unique circumstances often aren’t catered to under general dementia programs.

“Almost 50 per cent of our members are living with younger onset dementia, and currently, the support for people with younger onset dementia is not necessarily ideal for the condition.

“In general, younger onset dementia is treated just like any other dementia … the issues can be completely different, so the support should be different.

“We found that this program is very suitable for that particular group.”

Dementia can be very isolating and Madani knows of members who have withdrawn, even from their own friends, for fear of making mistakes or saying the wrong thing.

They often shy away from activities that used to come as second nature to them.

“The centre allows people with dementia to be themselves, it’s non-judgmental,” she explains.

They can talk, whereas most often they are very anxious about talking outside of the centre.

“We hear it from the carers that, for example, the husband or the wife would not even make a cup of tea or coffee and now they see them just getting up by themselves and making a cuppa when they couldn’t do it before,” she says.

“So the program provides a beautiful environment, safe, non-judgmental, allowing people with dementia to be themselves, to talk and dance and sing and be with friends.”

Madani says another important part of the program is the educational workshops run every six weeks. 

“So we make those workshops available for anybody who would like to come and hear about dementia and how to communicate with a person with dementia, completely free of charge, just to destigmatise the condition.

“Because no one is really immune from dementia.”

The model is community-driven and low cost, with many members using their NDIS or home care packages to pay the daily fees.

The Meeting Centre Support Program provides a beautiful environment – it’s safe, non-judgmental, and allows people with dementia to be themselves.

However Madani says not all packages cover the cost.

“The sad reality is some people living with dementia have only the level one or two package and the funds are too low to be able to pay the full fee, which is $98.”

“So I’m hoping that with the findings of the royal commission and the focus on better support for people living with dementia, that will change, because currently, as I said, the package does not cover the cost of supporting the person who is living with mild to moderate dementia.

For the time being however, financial support is offered to those who need it.

“We do not deny this service just because a person cannot pay the full fee,” Madani says.

Since Professor Rose-Marie Dröes opened the first ever meeting centre in Amsterdam in 1993, Madani says there are more than 155 meeting centres across the Netherlands, as well as those in Italy, Poland, Spain, the UK, USA, Japan, Singapore, Suriname and Chile.

She hopes to see more popping up around Australia in the years to come.

“I hope that it will spread in in Australia because it’s spreading in the Netherlands and in Europe,”

“I truly believe it is one of the best models of care for people with mild to moderate dementia, because it is truly person-centred, evidence-based…”

“It is proof that having dementia doesn’t have to mean doom and gloom.

“A person with dementia can still participate in life and have quality of life, but they need the right support.”

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