I recently attended a talk by the writer and campaigner Nicci Gerrard, who is also one half of the psychological thriller-writing duo Nicci French (Nicci and her husband Sean French). Her talk at Waterstones on 29 April was part of the Bristol Festival of Ideas and focused on her recent book What Dementia Teaches Us About Love, and she was in conversation with Jenny Lacey.
Dementia is an illness which nearly everyone is touched by in one way or another, as current estimates suggest there are around 850,000 people living with the condition. Dementia is also one of the illnesses that most people are frightened of due to its gradual progression and the biggest questions dementia raises about human nature. As Nicci notes, ‘I used to think that autonomy, self-reliance, agency and the ability to have reciprocal relationships were what comprised my nature. But do I have no value when I lose these?’
Due to the continuing stigma of the diagnosis, unfortunately many people also feel ashamed, as the condition can ‘dismantle the defences that we’ve built up over a lifetime’. However, Nicci explains that receiving a diagnosis is often a positive thing, because this allows an individual and their family to access the help that comes with it.
Nicci’s book was inspired by her father John’s experience of dementia, who died in 2014 after living with the condition for 10 years. She started by telling a touching story about a family trip to Sweden with her father, that allowed him to enjoy activities he had loved before his illness, like going for walks in nature, swimming in the lakes and taking saunas. Nicci’s father then lived well with dementia for a while, until the leg ulcers he developed resulted in an excessively long hospital stay. During John’s time in hospital, he had limited contact with his family – partly due to rigorous visiting hours, and partly due to a ward lock-down related to a norovirus outbreak.
Sadly, when John came home after his five-week stay, he was irreversibly changed. He had lost a third of his body weight, and Nicci described him as ‘no longer living with dementia, but dying with dementia. Without a link to the outside world, you can very quickly lose yourself, and this has happened to so many people’. Often, people with dementia are in hospital because there is nowhere else for them to go, but this may not be the best care option for many people. Nicci also emphasises that ‘it’s not about blame. The NHS is currently struggling, and we have an ageing population. No matter how wonderful nurses and doctors are, they cannot do it all’.
As a result of her father’s experiences, Nicci then then set up ‘John’s Campaign’ with her friend Julie in 2014. The essence of the campaign is simple, and asks that carers of people of dementia should have the right to support and accompany their loved ones during hospital stays. John’s Campaign has been successful so far, with over 1000 institutions pledging their support. The potential impact of this campaign on the wellbeing and quality of life of people with dementia (and their carers) is enormous, and the efforts of Nicci and Julie to bring about this positive change is hugely inspiring.
The role of carers
Nicci noted the incredible work done by carers every day: ‘to be a carer of a loved one is the hardest and most courageous – yet most undervalued – thing you can do.’ Taking on the role of a carer often involves a fundamental change to the dynamics of a relationship, and can involve a lot of physical and emotional energy. In terms of advice for carers, Nicci advises to seek help in whichever way you can and not to be shy to ask for help, as many people like to be asked. Nicci also emphasises how important it is to ‘find time to be by yourself. This is not selfish, it’s self-salvage’.
At a certain point in many individuals’ dementia journey, moving into a care home is the only remaining option. This represents a significant transition period in someone’s life, and for many carers can involve a ‘healing process – your loved one is finally in professional hands’. Nicci highlights that while there are some poor care homes out there, many of them are wonderful. For example, Nicci visited one home that involved residents with early stage dementia in the preparation of meals for homeless people. Nicci notes the benefits of giving individuals a purpose; having a sense of meaning in one’s life is a key aspect of wellbeing.
Nicci also touched on the gender differential that can be found in carers’ work. Caring as a profession is still viewed by many as ‘women’s work’, and is unfortunately remains underpaid and undervalued. Furthermore, women are also more likely than men to take on unpaid caring work.
What needs to change with regard to dementia care?
One key area of change concerns increased awareness of dementia, which has typically been a hidden condition. Being more knowledgeable about the symptoms of dementia can help us to be more compassionate towards those with the condition, and feel more empowered to include people with dementia in wider society.
Having a wider range of therapeutic options available could also be beneficial. For instance, Nicci feels that the arts should be available on prescription, as these have been found to be highly effective for many people. Using the arts provides ways to maintain connections and give people a voice without requiring them to speak.
Nicci explains that ‘it’s the way we deal with dementia that makes it terrifying. We need to treat people with dementia with infinite respect, because this is the time when respect is the most important.’ Nicci also thinks that love can be viewed as a ‘sense of collective humanity. We need to have a kindness revolution, as people with dementia are still one of us’. Changing societal attitudes towards dementia can lead to a more positive framing of a diagnosis, towards viewing the condition less as a sentence and more as the ‘beginning of a next chapter, which can be full of hope and adventure’.
In writing What Dementia Teaches Us About Love, Nicci met with and drew upon the experiences of diverse range of people including people with dementia, their carers, artists, therapists, philosophers, and doctors. Nicci also describes how important it was for her personally to write the book, ‘I needed to be part of that essential conversation about end-of-life issues. I wrote a book because I wish I knew then what I know now – how to be kind’.
To find out more about John’s Campaign, please visit: https://johnscampaign.org.uk
Laura Hillier is a reporter for Bristol Women’s Voice.