Since her husband Noel’s diagnosis with Posterior Cortical Atrophy (PCA), Roberta McKee-Jackson has been actively involved in several Rare Dementia Support groups, and now provides regional support for the charity. She was instrumental in setting up advice and support for people living with PCA in Hertfordshire and continues to raise awareness and share her experiences in a range of different ways.
Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?
Since my husband Noel’s diagnosis, I have been actively involved in the PCA, the Carers, and now the Bereaved Carers support groups for Rare Dementia Support (RDS). Noel participated in research projects as long as possible, and I also volunteered for several projects to enable research into specialised MRI imaging for rare dementias and balance projects.
With another PCA carer, we created the Hertfordshire PCA support group three years ago offering advice, support, and education to others in Hertfordshire. I have also shared my experience through discussion, video learning tools and a podcast for the Created Out of Mind Talking Life series, which was broadcast on BBC Radio 3 in October 2017.
What was your motivation for getting involved in the field of dementia?
My husband was diagnosed with PCA - a form of early-onset, rare dementia - in 2012. We were very involved in the RDS PCA support group and research projects, and ultimately donating his brain for further research into the rare dementias.
I developed a real passion to advocate for those in similar situations, pledging to provide support, education, and assistance to others. No one signs up for the role of caring for a loved one with dementia, but you simply have to get on with it and make the best of an impossible situation for your partner and family.
What would you say has been your greatest achievement or highlight?
Being invited by the UCL Dementia Research Centre and Rare Dementia Support organisations to collaborate with them in facilitating their support efforts, speaking as one who has actually lived through the experience as a carer, and working in partnership with others for future developments in RDS.
Based on my personal experiences, I hope to expand my advocacy role by raising awareness of rare dementias and the importance of support groups for those living with dementia and their families/carers.
If you could change one thing now to improve the lives of people living with dementia, what would it be?
I believe public understanding and acceptance of dementia as a whole is woefully sparse. Most people think of Alzheimer’s Disease when you mention dementia and do not realise Alzheimer’s is only one of almost 200 variants of dementia. Dementia in any form is a ‘hidden disease’ for the most part; very few outward signs are indicative of individuals living with this disease, resulting in lack of understanding by the public.