What it’s like living with dementia – how medicines are taking away the chance to express feelings and needs

The Royal Commission into Aged Care Quality and Safety revealed shocking stories of the use of ‘chemical restraints’ in residential aged care and highlighted the need for reform across the sector. Understanding dementia ‘from the inside’ can help us improve care for our loved ones with dementia and minimise the use of unnecessary medicines. NPS MedicineWise has released a video with a personal story of what it is like living with dementia, and is encouraging people with dementia and their loved ones to take an active role in decisions about their care, including decisions around the use of medicines.

Theresa Flavin, who tells her story in the video, has been living with early onset dementia for many years and is a passionate dementia advocate. The 55-year-old, who still cares for her children and grandchildren, has been offering her insights to groups working in the dementia space to try to help people understand what it’s really like to live with the condition and what it’s like to take medicines to control behaviours.

“For someone with dementia, the path in the brain from ‘I feel fear’ to the words ‘I feel fear’ is broken and ‘I hate you’ might come out as the brain is trying really hard to express something,” says Ms Flavin.

“The helpful thing is if other people will allow me to express myself. It's almost like you have to be given permission again to be a normal human being or even act like one,” she says.

Up to 9 in 10 of people living with dementia will experience at least one changed behaviour over the course of their illness – this includes aggression, agitation, calling out and wandering.

Understanding the unmet needs of someone with dementia can inspire ways of caring for them without using medicines.

Kara Joyce is a consultant pharmacist and the clinical lead of the dementia care program at NPS MedicineWise.

“A nurse told me about a gentleman in her care who was unable to walk and was calling out constantly. Instead of commencing medicines, her team looked at who he was, what his hobbies were, and tried to ascertain what his unmet need was. Boredom can be a big factor for people in aged care with dementia, just like anyone else they want to be involved in meaningful activity - it is just they may not be able to express these emotions in the same way. The man used to be an avid bird watcher, so his family bought him a pair of binoculars, and he now gets a lot of enjoyment from sitting in his chair with his notebook watching the birds that come and go,” says Ms Joyce.

This is an example of a person-centred approach which is central to the NPS MedicineWise educational program: Dementia and changed behaviours: a person-centred approach. A brochure with strategies to help someone with dementia overcome stress without using medicines is one of a wide range of resources for people with dementia and their carers. Other resources include information about medicines used in dementia and questions to help reach informed consent about the care to be provided.

Antipsychotic and benzodiazepine medicines, sometimes called ‘chemical restraints’, have a limited role in the care for people with dementia and don’t work for the majority of changed behaviours.

“Having someone medicate you is like having dementia squared. Every symptom of dementia is magnified. So all of the fear and the inability to tell you where you are in time and space, it just disappears. Any little tenuous string that you have to reality is severed and you're just set adrift by someone,” says Ms Flavin.

The decision to commence an antipsychotic or benzodiazepine is a complex one and should include the whole care team including the treating doctor as well as the person with dementia and their carers.

NPS MedicineWise is encouraging people to ask questions and take an active role in the care of people with dementia. Questions might include:

  • What are the risks and benefits of starting medical treatment for distress?
  • What happens if I don’t have medical treatment?
  • What non-medicine options are there to help with distress?

Find out more at the NPS MedicineWise information hub for people with dementia and their carers.

 

Media contact

Bernadette Withers:  (02) 8217 8623, 0419 618 365 or [email protected]