Empowering people with dementia to make informed choices around medicines

Graham Gilmore’s diagnosis of dementia in his 60s, as he and his wife Imelda were preparing for retirement was devastating, but the most important thing for Imelda was to ensure Graham was honoured as the person he’s always been - as she became his strongest advocate. 

“It put a whole different perspective on what we could expect from the future,” Imelda said.

“It was quite devastating.”

Imelda and Graham had also been given some information about medication for Alzheimer’s disease, but by the time they received the information Graham was no longer able to make the decision for himself and Imelda stepped in carefully noting benefits and side-effects.

Medicines and Dementia

“Graham was offered various medications and in each case I was prepared to help him try them but to look for side-effects,” Imelda said.

“And some of those, one of the drugs particularly, had bad side effects but the other ones were very helpful.”

A new resource is now available to educate and empower people living with a diagnosis of dementia—and the people involved in their care—about their rights when it comes to treatment options associated with dementia.

Medicines and Dementia supports people with dementia and their carers to make decisions with their health care providers and to communicate their wishes, while they are able to.

Key elements of Dementia Australia and NPS MedicineWise's resource Medicines and Dementia includes:

  • A downloadable, printable information booklet containing information to empower people with a diagnosis of dementia and the people and health professionals involved in their care. The booklet covers issues around consent, appropriate use of medicines, and non-medicine therapies including psychosocial approaches to expressions of distress
  • Downloadable, printable fact sheets on strategies to address distress, other conditions that commonly occur alongside dementia, and tips for good medicine management
  • Consumer stories told via video and sharable on social media
  • Health professional communication

Dementia Australia National CEO Carol Bennett said the issues around medicines and dementia is something consumers have identified as a priority area.

“This partnership, under the direction of people living with dementia and their carers, is working to empower consumers to make informed decisions which will result in improved quality of life and appropriate dementia care,” Ms Bennett said.

“We know that people with dementia have identified the need for more information on medicines. The new resources will help people make decisions about a care plan, gain a better understanding of their rights around consent and how to discuss and document their choices and ultimately improve the quality of life of the 353,800 people currently living with dementia in Australia.”

For Imelda, the most important thing with Graham's medication was to make sure she honoured the person that he had always been.

“And so, in weighing up the medications that came into everything as well, his values regarding what he would've chosen,” Imelda said.

“When I realized that Graham needed me to be his advocate, and to look after all of his affairs, including medications, his physical needs, I learned everyday on the job that yes, I could do that.”

NPS MedicineWise CEO Dr Lynn Weekes said it could be difficult to find reliable, evidence-based information to help people make decisions when it came to medicines or other treatments for symptoms associated with dementia.

“People with dementia can be at particular risk of problems with medicines for a number of different reasons,” Dr Weekes said.

“They may take multiple medicines due to other health conditions, increasing the risk of medicine-related side effects, or they may experience problems with memory and communication, making it difficult to remember what their doctor or pharmacist told them about their medicines, what the medicines are for, or when to take them.

“As dementia progresses, changes in a person’s behaviour are often caused by unmet needs that might be due to their health, the environment, or difficulty verbalising pain, and there are a number of medicine and non-medicine therapies available to manage these associated expressions of distress.

“Medicines and Dementia is about empowering people with a diagnosis of dementia to work with the people and health professionals involved in their care to discuss and document their choices and management options in relation to navigating the symptoms of dementia,” she said.

Imelda said it was important not to be put off or scared of the medication issue because medications could help you to manage the journey you're going to be on.

“When you're dealing with a medical profession with your loved one, don't be afraid to ask as many questions as you want to ask,” Imelda said.

“Don't be afraid to tell a medical person, this is good or this is bad or the effects are bad, because you are advocating for the person you love - they can't do it for themselves.”

To read more information and to download the new resources visit: www.nps.org.au/dementia or for more information on prescription, over-the-counter and complementary medicines (herbal, 'natural', vitamins and minerals) from a health professional, call NPS Medicines Line on 1300 MEDICINE (1300 633 424).