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Our four-year-old daughter Lucy is running the 1.5k family run which takes place before the Ipswich Half Marathon on September 20. She is raising money for the Lewy Body Society in memory of her lovely grandad Bev Gallagher who sadly died on June 19 this year. 

Lewy Body is the second most frequent cause of dementia, however there is a shocking lack of awareness of the condition among many in the medical profession. This is mainly due to the fact it shares many of its symptoms with Alzheimer's and Parkinson's and can be very difficult to diagnose. 

Bev was wrongly diagnosed with Alzheimer’s more than three years ago, but up until this year if you didn't know him well you would be forgiven for not realising he was ill. However in April his symptoms suddenly took a turn for the worse. Within a couple of weeks, this gentle, charming, intelligent man suddenly became a completely different person. He no longer recognised his beloved wife and was convinced she was an imposter. This is apparently a particular symptom of Lewy Body dementia, but not one of the many health professionals who came to assess him spotted this. After a week or so of his condition worsening even further it became impossible to look after Bev at home so it was decided he should go into respite care at a specialist dementia home. From that time on he declined rapidly and the home could not cope with his behaviour. Neil was the only one who could calm him and spent many evenings being called to the home wondering what he was going to face.

Everyone knew something else was wrong but what? Did he need mental health care? Was there something else medically wrong, perhaps a stroke or a brain tumour? Finally, three weeks later,  after many meetings with psychiatrists and social workers, and with a lot of pressure from the family, it was decided to admit him to Ipswich Hospital. It was only then that he was finally diagnosed with Lewy Body dementia and it came to light that some of the drugs he had been taking were exacerbating his condition, leading to hallucinations and delirium. The hospital was fantastic but things had gone too far and Bev sadly died two weeks later.

Bev's story is a classic example of why there needs to be far more awareness about different kinds of dementia, not just among the public but among the medical profession. It cannot be cured but the right drugs and the right diagnosis are crucial to maintaining quality of life for as long as possible. Sadly, his story is not unusual and there are too many families going through the same heart-breaking battle at a time when they need to be caring for the person they love. 

In a way we were lucky that Bev had an amazing GP who helped us every step of the way. We also have a fantastic friend working in dementia research who helped us find our way through the bewildering maze that is this country's health and social care service. We didn't stop questioning or pushing for further help or support because we knew that it was supposed to exist in some form. 

Despite this support, it was exhausting, it was draining, it was heart-breaking and far too many other families out there will be trying to find their way through this alone.  This is not about trying to find someone to blame, this is about raising awareness to make sure that people know that this condition exists. So, dig deep and thank you for every penny you have donated. This money is vital to help spread the word about this devastating condition.  

Thank you again,

Jess and Neil Gallagher

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