Why we need to talk about dementia – Cesar Rodriguez

I have always felt very strongly that older people with mental illnesses suffer a double whammy in terms of stigma and discrimination. This is why I believe that it is extremely important to talk about the social changes and awareness required to make sure that older people are seen as a valued asset in our communities. However, it is also important to remember that not all those with dementia are what we may consider to be old. In Scotland there are around 3,200 people under 65 years of age living with dementia.

As a consultant in Old Age Psychiatry and Associate Medical Director for Older People, NHS Tayside, and National Clinical Lead (Psychiatry) for the Focus on Dementia Team, part of Healthcare Improvement Scotland’s ihub, my main interest has always been dementia care.

When my own mother was diagnosed with Alzheimer’s disease in her late-60s, this interest became not just the focus of my working life, but also very much part of my personal life.  For the last 16 years, I have been a trustee at the Dementia Services Development Trust. This charity funds projects which aim to improve the experience of those living with dementia.

The Trust recently funded the production of a short film called ‘We Need to Talk About Dementia, starring two well-known River City actors, Barbara Rafferty and Stephen Purdon. This is a unique project, which aims to aid conversations around some of the most challenging issues people can experience when diagnosed with dementia, and also highlights some of the issues families and carers may face when they are helping to look after loved ones.

Dementia Awareness Week (3-9 June)

During Dementia Awareness Week, (3-9 June), Healthcare Improvement Scotland’s Focus on Dementia team will show the film as part of their awareness-raising activities and to encourage continued conversations about dementia.  Staff have been invited along to the organisation’s Glasgow offices (with popcorn!) to see the film, which I also have a small role in.

River City cast help raise awareness

In the film, Barbara Rafferty plays the part of a woman who has downsized her property to pay for her husband’s care home expenses due to the progression of his dementia, the demise of his health and the escalation of his anxiety, frustration and aggression.  Stephen plays a painter and decorator who, through talking to Barbara, finds out how her husband’s dementia has impacted all aspects of both of their lives. It raises important issues and encourages conversation around the very real challenges faced by those diagnosed with dementia, and also families looking after loved-ones with this condition.

The film’s producer and director is River City’s Stuart Davids, who left his job to look after his own mother following a diagnosis of dementia. Having no prior knowledge of what dementia was, what care was needed or available, no experience of care homes, psychiatric wards or anti-psychotic medication or how to finance his mum’s care, Stuart felt challenged and isolated but determined to do the best for his mum.  He then decided to use his skills and abilities to raise awareness, to inform and educate, and set out realistic expectations for other carers, family members and people living with dementia, and for what may lie ahead after diagnosis.

It was a very new experience for me to be filmed, providing input as a psychiatrist talking about different aspects of dementia.  My short role forms part of a series of interviews with key specialists who advise on the different arrangements and options that may need to be considered by carers, family members and people living with dementia to arrange for the best possible care and support for loved ones.

Challenging pre-conceptions can help to combat stigma

Even though this piece of work was part of my voluntary work, it is very relevant to the work we do within the Focus on Dementia team, which helps to raise awareness of the condition, to promote ways to live well with dementia but also to communicate that there are very difficult and very challenging aspects of the illness that need to be discussed. ‘We Need to Talk About Dementia’ touches on some of those difficult aspects.

Some excellent work is taking place to help to help support those with dementia, their families and carers.  The improvement projects led by the Focus on Dementia team strive to help make the experiences of care and support for people with dementia and their families better.

Only by talking about dementia will we will be able to raise awareness and understanding and, in turn, challenge preconceptions, combat stigma and discrimination. I strongly believe that this is the way to achieve a more compassionate and caring society for all, but especially for older people, and those with dementia.

Cesar Rodriguez is a consultant in Old Age Psychiatry and Associate Medical Director for Older People in NHS Tayside. He is also the ihub National Clinical Lead (Psychiatry) for the Focus on Dementia Team