7 minute read
Young Onset Dementia A carer’s journey
by IN-SPHERE
Occasionally one has the privilege of meeting a remarkable human being: someone whose dedication to advocating for those who do not have a voice reminds us there are good people in the world. Imelda Gilmore is one such person.
Imelda sits on the Age and Ageing Clinical Academic Group’s Consumer Council and brings with her a depth of understanding and lived experience as a carer for her husband who died from young onset dementia in 2016. He was just 65.
A carer’s journey
Imelda’s consumer advocacy journey began as a carer. At the age of 58 her husband, Graham, started to experience forgetfulness. Putting it down to work fatigue, Imelda was sure that once he retired things would improve.
“Back then, it would never have occurred to me that a man his age could have dementia,” she explains.
At the time, knowledge about young onset Alzheimer’s was extremely limited.
“When I was completing my first semester of a Bachelor of Dementia Care Course with University of Tasmania in 2017, a year after my husband’s death, I conducted some research for my final essay. As I went through the literature, the earliest paper I could find on young onset dementia was published in 2013. Prior to that date there was no research I could find about people under the age of 65 with dementia.”
Doctors didn’t seem to have much information either.
“We went to see a neurologist when Graham was 63, as his symptoms had deteriorated significantly, with increasing incidences of memory loss and confusion.
“The neurologist referred him for a driving test which he not only passed but allowed him to drive for an additional six months. This was even though he was having memory lapses when driving; for example, there were incidences when he suddenly didn’t recognise where he was, even when we were only a few streets away from our home.
“As Graham refused to have an MRI, the neurologist sent him away to try some vitamins, reviewing his progress with a couple of visits over 18 months. At that point I was becoming more responsible for him and yet I was getting no support or guidance as his carer.”
Imelda watched as the man she had been happily married to for 35 years deteriorated, slowly at first but then suddenly declining rapidly.
Visiting another neurologist at the age of 64, Graham underwent a SPECTscan and was immediately diagnosed with classic Alzheimer’s with both temporal lobes affected as well as a small effect on the frontal and occipital lobes.
The need for carer support
From the time of her husband’s first symptoms to his untimely death, Imelda found herself in unfamiliar territory as she traversed the foreign world of being his carer.
“I was floundering. There was little information about young onset dementia and even less help for carers of people living with dementia.”
Imelda first received real support when she and Graham attended “Living With Memory Loss” an eightweek course run by Alzheimer’s Australia.
“I started to discover my role as a carer and how I could be supported. The affirmation and validation I received in caring for Graham was incredibly important.”
When the course ended, four of the couples remained in contact and formed a social support network.
“The only person who understands what you’re going through as a carer is someone else who has cared for a person living with young onset dementia. In the evenings, after a particularly bad day when I sat down at my computer, I would pour my heart out to the group. You feel like you’re screaming out into the darkness, but you know there are people out there who understand.”
As Graham’s dementia progressed, Imelda found she needed to continually change the way in which she interacted with her husband. She explains that people living with young onset dementia often regress chronologically so it is essential to learn to communicate with them at the appropriate level.
“I had to learn to see our relationship differently because he no longer seemed to recognise that we were husband and wife. He seemed to relate to me as his mother, so I began to respond in that manner.
“Every day in your life as a carer of someone with young onset dementia is a learning curve and you become equipped to deal with the challenges. I had to learn to communicate in a very different way which at the beginning felt like I was lying to him but I realised that all I was doing was stepping into his reality and protecting him from distress as much as possible.”
Advocating for consumer input in research
Imelda’s first-hand experience of caring with a person living with dementia has led her to be an advocate for adding a dementia dimension into research , as well as adding her experience of palliative care and end-of-life care. Joining the first UTS Consumer Advisory Group in 2014 as a founding member, Imelda had no idea that her involvement would lead her on a journey into consumer-led research.
“I am involved on committees including the Age and Ageing Consumer Council where we look at research proposals and ask questions such as ‘How are consumers involved?’ ‘Is it novel research?’ ‘Does it fulfil a need?’ ‘What’s the knowledge translation component?’
“What we as consumers bring to the table is the human side to the theoretical and scientific approach. We bring a balance to the research and show that our input as carers of people living with dementia is important.”
Since she began working as a consumer advocate, Imelda has worked with researchers from eight universities across Australia and overseas including on Clinical Trials and has also been a Chief Investigator on a few research projects. She has also spoken at conferences and in the media.
“This is something I never would have done if Graham didn’t get Alzheimer’s. Everything I do in research is for his legacy. This is how I honour him because otherwise it’s all just a sad story.”
Supporting others
In addition to her work in research, Imelda also dedicates much of her time to supporting others; from running a support group for carers whose partners have young onset dementia, providing pastoral care and prayer services and also sitting with people during their last days and hours. During these times, she not only offers company but compassion and a genuine desire to bring peace to those at the end of their life journey.
“When a baby is born, there are hands that reach out and embrace it with love. When someone goes out of this world they need the same touch and love.
“You only get one chance to walk someone through the end-of-life journey. To hold their hand and to give them that important touch is an incredible privilege.”
The future of dementia care
While Imelda acknowledges the significant work done in research since her husband was first diagnosed, she believes that much can still be done in the healthcare system.
“Educating all hospital staff about dementia, from the CEO right down to the cleaner, would go a long way to making a huge difference in the lives of people with dementia and their carers.”
More about Imelda’s work
Published projects:
Published CI: Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review
https://doi.org/10.1093/geront/gnaa118
Published AI:
https://doi.org/10.1002/alz.13080
Imelda is currently a Chief Investigator on the following projects:
The CELPI Trial
https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-02203534-1
The EARLI Project: https://neura.edu.au/project/theenhanced-advance-care-planningand-life-review-longitudinalintervention-earli-project
A journey expressed through craft
“Through my work I wanted to be able to express a story, which is really a circle. I wanted to honour my beautiful young husband, who had young onset Alzheimer’s disease. I cared for Graham through his journey. I wanted to honour Graham’s precious presence.
In the photo with our daughter, his eyes look lost as though he is searching for something he can’t grab hold of, something out of
reach. A lot of people don’t take pictures once the person who has dementia loses their intelligent look. But some of the most precious pictures, the ones I would never give up, are pictures like that.
I wanted to express the pain of relationship change, yet the love that upholds it. I wanted to express isolation, hard work, challenge, frustration and aloneness of being a carer.”
(see story p.19)
