Consumer stories - Imelda
Imelda Gilmore cared for and supported her husband for seven years, from his diagnosis with younger-onset Alzheimer’s Disease until his death in 2016. She joined the IMPACCT Consumer Advisory Group in its first year in 2014.
Why did you get involved as a consumer advisor with IMPACCT?
I had been doing some advocacy work around dementia when I was invited to join the Consumer Advisory Group with IMPACCT for its first year in 2014. I wasn’t sure how my life experience would be of use to researchers and whether I would be able to converse and collaborate with them, given that I don’t have an academic background. I was very happy to discover that I didn’t need to know the technicalities of the research to be able to make a valuable contribution.
My husband, Graham, who had young onset Alzheimer’s Disease, had wanted to be able to contribute to research, hoping that he could make a difference for someone down the track in their journey with dementia, so when I was offered this opportunity, I accepted because I hoped it was a way I could honour Graham’s wishes. Down the track, in the years following his death, it has been a privilege to honour his legacy by continuing to be involved.
My contribution to IMPACCT has been influenced by my experience not only of the dementia journey but also in walking Graham through his palliative care stage, to the end of his life. All of this had a profound influence on me, and I have continued my consumer advisory journey with a passion for being able to contribute to research that seeks to ensure that people everywhere will be able to experience palliative care which is timely and appropriate and the best possible care they could receive, and especially for those who are living - and dying - with dementia.
What are you most proud about regarding your involvement with IMPACCT?
It’s been an honour to be able to participate in the consumer advisor program with IMPACCT and one of the most gratifying aspects is that my input is valued and respected; in some cases, researchers have made changes to their planned direction with a project because of the insights we consumers were able to share.
What has been your biggest learning from being involved with IMPACCT?
Having never had any connection with the research world – and thinking it was way outside my simple world – I have learned over these seven years that researchers are just as passionate as I am about making a difference; this is particularly true with IMPACCT, because they are always looking for ways that a palliative care journey can allow a patient to experience the best possible quality of life while travelling through the advanced stages of their illness.
My experience with Graham made me realise that I would only have one chance to see him safely and well through his palliative stage and only one chance to advocate for his most important end-of-life event: with God’s help I am able to say that “we did it well” and it will forever be a very positive memory.
Imelda Gilmore cared for and supported Graham for seven years, from his diagnosis with younger-onset Alzheimer’s Disease until his death in 2016. As an experienced communicator, advocate, speaker and campaigner in dementia care, carer services policy and media, Imelda works to promote the advancement of knowledge, care and services for people with dementia and their family carers.
