Lorraine Womack-Banning is a Pianist and Piano Teacher based in Bedfordshire. When her late husband Raymond Banning was diagnosed with Frontotemporal Dementia (FTD) Lorraine became aware of the lack of provision and care for people with dementia and their families. She has been very active in raising awareness and draws on her experience with music to enrich the care of people living with dementias.
Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?
In 2010 my late husband, the pianist Raymond Banning, was diagnosed with Pick’s Disease (now known as Frontotemporal Dementia) at the age of 57.
As a professional musician, with experience of working in palliative care hospice settings, I used music to support Raymond through his illness. After his death I continued this work as a volunteer in Music for Memory sessions, fundraising for Tibbs Dementia Foundation, setting up a free Concert Series – Raymond’s Concerts – for people with dementias and their carers, and speaking and writing about my experiences with Raymond. I fought a watershed case to allow Raymond to die at home, attracting media coverage and setting a precedent for others.
What was your motivation for getting involved in the field of dementia?
Following Raymond’s diagnosis and death, I became aware of the inadequate provision and care for people with dementia and their families, especially those with young-onset dementias. It became my mission to raise awareness and to fundraise for the independent services providing support to people living with dementias.
What would you say has been your greatest achievement or highlight?
Without doubt my greatest achievement was winning the battle with the primary care trust to allow Raymond to die at home, surrounded by the people and music he loved.
I will continue to raise awareness, to fight for better care, particularly end-of-life care, and to use my experience with music to help people with dementias and their families. People with dementias have no voice: we need to be their advocates and empower the disempowered.
If you could change one thing now to improve the lives of people living with dementia, what would it be?
Care provision for people with a young onset dementia HAS to change. I have experienced how traumatic the journey from diagnosis to death can be for this group of people. Having worked in a hospice, where care is patient- and family-centred, I know that this does not need to be the case. I would like to see a campaign similar to the one for Cancer Care in which people are reassured that ‘no one should face dementia alone’. Only then, will families be able to focus on their quality of life in the here and now, rather than having to spend their energies fighting for their loved ones’ needs and care.
I would also like to thank everyone who supported Raymond and I through this most difficult of journeys.