This book is a collection of short accounts written mainly by family members relating what happened when someone close to them was diagnosed with dementia. They write of their personal struggles to cope and of the battles they had to fight to obtain appropriate care and support for their loved ones from frequently indifferent and sometimes downright callous healthcare professionals.
The editor, Lucy Whitman, was inspired to collect these real-life stories after her own experiences of looking after her mother who had dementia. A former FE teacher and now a writer, editor and trainer, Lucy has written regularly for the Journal of Dementia Care: Dementia Community – Learning, sharing, inspiring.
Her primary aim is to inform and educate the wider public about how to cope when a loved one receives the shattering diagnosis of dementia, but she is also keen to increase awareness among healthcare professionals of the needs of people with dementia and those who care for them.
Because each account is relatively short (rarely longer than 4-5 pages), contributors have been both selective and concise in the details they have included. Sadly, though, a common theme running through many of these stories is the incompetence, callousness and at times startling ignorance of some doctors, neurologists and psychologists – not to mention social workers and care managers – in relation to dementia.
One contribution, written by the wife of a GP diagnosed with younger onset Alzheimer’s in his 40’s and pointedly entitled Look back in anger, rages at the way the medical profession cruelly shunned her husband following his diagnosis. As she writes: “The diagnosis was such a shock to him that he never set foot in his surgery or drove a car again. He was given no follow-up by a consultant, nor offered any professional emotional support. Just the diagnosis and “there’s nothing we can do – try and keep as healthy as possible”. He and I knew that there was no cure, but can you imagine the impact the diagnosis had on him as a doctor himself? In a way he felt humiliated. Surely, Alzheimer’s disease could be classed as extreme as cancer – and yet an Alzheimer’s suffer is almost universally shunned by the medical profession.… How welcome a few words of sympathy from a GP or a consultant would have been then.”
Another contributor recounts how her husband’s GP dismissed what later turned out to be the early signs of dementia as “agitated depression and compulsive/obsessive disorder” It was not until nearly 3 years later that a diagnosis of dementia was formally confirmed by a London teaching hospital.
The editor herself comments on the poor care received by her mother and other older patients on her hospital ward: “With hindsight, I now feel very disappointed that the hospital staff were so ill-prepared to meet the needs of their aged patients, many of whom clearly had dementia. They responded to (my mother’s) constant demands for attention and accusations of neglect as one word to a perfectly rational person who was choosing to be obnoxious – “a cantankerous old woman” – seemingly oblivious to the fact that her behaviour was a symptom of her illness rather than an unpleasant flaw in her personality….. The only response we got was the usual explanation that she was a bit confused, as if there wasn’t much to worry about. So long as they were monitoring her blood pressure and her temperature, giving her the prescribed medication and making sure she didn’t fall over again, they felt their job was done.”
One common theme running through many of these real-life stories is the vital importance of family carers being prepared to fight the ignorance, prejudice and inertia which is alarmingly rife among medical and Social Services professionals. Some GPs may be unwilling to discuss a patient’s cognitive and behavioural difficulties with their spouse or partner on the grounds of patient confidentiality. Other GPs may be reluctant even to consider a diagnosis of dementia: there are several examples of doctors wrongly attributing the early stages of dementia to other causes, such as stress and depression and even obsessive compulsive disorder!
One GP told a patient who was worried about his declining mental state that he needed to pull himself together and get out of his current state, which devastated him so much that he was reduced to tears on his journey home with his wife.
A psychologist treating a senior university lecturer aged 50 who was suffering from increasing anxiety and memory loss responded to his wife’s suggestion that her husband was no longer capable of holding down such a responsible job and should be allowed to retire because of his failing health accused him of “putting it on” in order to be awarded an early retirement pension.
When another man whose Parkinson’s had gradually brought on early onset dementia tried to convince a Social Services case worker that the country was being invaded by killer bees, the case worker attributed his confused mental state to emotional and financial abuse by his wife!
It should be emphasised, though, that these accounts were all written in the years between 1990 and 2010, since which time healthcare professionals have developed a much greater understanding of dementia and how best to engage with those living with dementia.
Notwithstanding the many examples of dismissive behaviour by healthcare professionals, the book contains lots of useful advice for anyone involved in the care of someone living with dementia, for example:
- Join the Alzheimer’s Society (Alzheimer’s Society): they offer a regular online newsletter, provide a telephone support service, sell a wide range of useful aids and much, much more!
- Try and enlist the help of an Admiral Nurse (What is an Admiral Nurse and how can they help? – Dementia UK)
- Bear in mind that a person living with dementia can often understand a lot more than they can say, so continue to talk to them normally and include them in wider conversations
- Seek out and join a local support group for carers looking after those with dementia.
- If you are caring for someone full time, make sure you enlist outside help to enable you to take regular breaks to give you time to recharge your batteries.
Although first published in 2010, this book is still highly relevant today: it is full of situations and incidents which will resonate with anyone caring for someone with dementia. John Suchet, who wrote about his own wife’s struggle with dementia in his book My Bonnie (BOOK REVIEW 2024 – My Bonnie by John Suchet – Chesterford Homecare) describes it as “inspiring and uplifting”; a respected clinical psychologist calls it “an essential read for all professional trying to understand and help families caring for a loved one with dementia.”; while Diane Melly, the widow of the jazz legend, George Melly, who died of dementia in 2007, describes it as “powerful and moving”.
Highly recommended for anyone involved in the care of someone with dementia – whether personally or professionally.
