A diagnosis of dementia is a devastating blow. While for some it might make sense of confusing behaviours, actions out of type and personality changes, it nonetheless arrives with enormous uncertainty. When faced with a diagnosis of any condition, our immediate question is ‘what can I expect?’ With dementia, this is the hardest question to answer.Fundamentally dementia is an incurable and progressive condition, and we know there will be no recovery. But how a dementia journey unfolds does not play to predictable patterns, and it makes the future for any person diagnosed, and their family, bleakly unknowable.
As Shobna Gulati outlines in Remember Me, each of us is unique, and each brain is unique, and as dementia unfolds, its impact will be idiosyncratic. Personality traits become exaggerated. Personality traits reverse. The usually sedate become irate, and robust characters wilt to wallflowers. The rules of our relationship with a person are torn up when dementia unfolds.
The symptoms themselves remain frequently underestimated. Many believe dementia to be a mild forgetfulness, an inconvenience of lost keys or forgotten names. The reality is more insidious as cognitive decline strips memory, ability and independence. And while memory loss characterizes many forms of dementia, it is profound in its nature. It is not forgetting where our keys might be, it is forgetting what they are for.
Memory loss to this degree cuts to the heart of identity. A great deal – perhaps all – of who we are emanates from memory. The present is the thinnest of veneers, and it is our formative experiences and their associated emotions, committed to memory, that create us as people. The loss, the reordering and the inconsistency of memory wreaked by dementia are acutely disorienting for the person and, of course, their carer.
This cognitive deterioration, and all its accompanying heartache, arrives as a result of damage to the brain. Another misconception of dementia – that it is just a by-product of age – overlooks this pathological reality. When someone is living with dementia, their brain is subject to atrophy – it shrinks – at many times the rate of normal aging. Cells in the brain are destroyed in multitudes and mass is lost. And with that our abilities, our memories and our connection to the world are lost too. A brain affected by Alzheimer’s, the most common cause of dementia, can weigh about 140g less than a healthy brain. That’s about the weight of an orange.
It’s a startling image, but it is a reminder that we are dealing with physical disease processes, and this means research can give us hope. Scientists are discovering more about why cells are dying and how we might intervene to protect them. The coming years hold promise of new treatments that might act to slow the process down, rather than just papering over the cracks. We might soon welcome a day where treatment options offer hope of changing the lives of people with dementia – giving life back – in the same way we have achieved for those with cancer and heart disease.
While these efforts in the lab unfold, we need to remain focused on dementia education. The more we talk about our experiences, the more we normalize discourse around the condition and this is a hugely important step in truly taking it on.
A generation ago people talked in hushed tones about a loved one in the grip of a long illness. Then we started saying ‘The Big C’, and finally we began openly discussing our struggles with cancer. This has led to a huge public and government response to cancer and a research revolution. Now, over half of people live ten years or more beyond their diagnosis.
Perhaps we are now in ‘The Big D’ phase of dementia. We see and hear more stories of the reality of the condition than ever. There is increasing willingness to share our experiences, and Shobna Gulati’s story – an honest, tender, funny, devastating depiction of how her mother was affected – is a continuation of this process. It will give confidence to others to do the same.
Shobna’s support of Alzheimer’s Research UK in reaching South Asian communities in particular is a hugely important step towards normalizing discussion of dementia where stigma still prevails. While for any individual or family dealing with dementia the future will feel uncertain and irrevocably changed, there is some help out there. Alzheimer’s Research UK has a wealth of information about causes, symptoms, treatments and where to seek support. We will always make this freely available for those who need it on our website.
We can also help those affected and their carers to take part in research studies to help us better understand the condition and its impact in the brain. Where dementia can take so much away, participating in breakthrough research can return some agency to those affected. And it is research that will ultimately prevail in changing the story for millions living with dementia in the UK and around the world.