Articles

Sonia Sodha’s article ‘Will this brutally honest look at dementia finally get us talking or will we turn away?’ (Observer, Sunday 31 March) considers the Alzheimer’s Society latest advert which she describes as “shocking, but it tells the harsh reality about the disease’ though sums up that it is ‘too blunt and too bleak’ to achieve its objectives.

The ad shows various stages of degeneration which is part of the progression of dementia where the person ‘loses’ a little bit of themselves, hence the title ‘the long goodbye’. It only hints that dementia is more than ‘just’ memory problems. However, what is shown is the mere tip of the iceberg that is the brutal reality for many families who often struggle to cope.

As a former dementia adviser, I would argue that the ad does not go far enough to wake people up to ‘the long goodbye’. In my experience, the single most important thing to get across to those with a diagnosis of dementia and their families is the need for preparation for their journey. This requires being aware of and facing up to the ‘blunt and bleak’ future.

Preparation encompasses many aspects. For instance, there are practical, logistical and health considerations which require careful planning. However, what is often overlooked is the need to help people to cope better with life after a diagnosis. This also applies to family carers who are often overwhelmed by the many new roles they must take over, particularly as the dementia gets progressively worse and their lives become dominated by the caring role and where there is often ‘nothing left for them’. We need a philosophy of ‘living well with dementia’.

Working now as a counsellor for people in the early stages of dementia, I realise how important it is for them to talk about their fears with someone outside the family. As well as helping them to cope better and contribute towards their wellbeing, it can help them to better prepare and plan for the future.

To sum up, I applaud the Alzheimer’s Society mission to raise awareness of the horrors of dementia so that it will encourage people to better prepare, take control and look after themselves. If this requires being blunt, then so be it. I would favour going further. As a society, we need to talk much more about the stark realities of dementia, considering it will affect 50% of people in the UK (though only 20% of people think it will affect them or someone they know).

Jurgen Schwarz

April 2024