My dear friends, I wish to humbly propose a solution to many of our society’s woes, and one that will eliminate the suffering of so many. We live in a country which is broken and broke. Our beloved health service is broken, starved of investment and proper planning. Our local councils are starved of funding and are going bankrupt, causing massive reductions in spending on our citizens. Our government is blind to our broken country. They promise, and promise again, that they are doing everything to fix our country, while casting rocks at poverty stricken citizens and broken travellers. This can ..read more

Kate Lee, Alzheimer’s Society CEO, said: “Our new advert ‘The Long Goodbye’ tells the unvarnished truth about the devastation caused by dementia. It’s not an easy watch but it’s an important one.”   First, this is the Alzheimer’s Society statement. It is not unbiassed, neutral reporting. ‘Devastation’ is an emotive word chosen to persuade regardless of facts. Second…‘Unvarnished truth’? Whose truth? Easy cliché but meaningless. There is no one version of dementia…every person’s is unique. It’s been a whirlwind few days following the launch of our new film ‘The Long Goodbye’. ‘Whirlwind ..read more

Well, I hope you’re pleased with your latest fund raising film. No doubt lots of horrified people will be giving you their money, as they wonder if they will be diagnosed one day with a dementia. They will give you money because they are frightened. Because you have put the fear of horrific, repeated death into their lives. You have played on people’s worst, deepest fears about older age and dying. Next time I tell someone I have dementia they may well step back with fear and shock. They may assume that parts of me are dying, and that my life is terrible. They may feel unable to look me in the ..read more

Um, how can I start this? How can I persuade you to read on? Try this. I AM NOT DEAD. You see, I am writing this, so I cannot be dead. I AM NOT DEAD. I have had a diagnosis of alzheimer’s and vascular dementia for nearly ten years. I am less capable of doing certain things than I was 20 years ago. I am physically weaker than I was 30 years ago. But I AM NOT DEAD. I am a researcher. A painter. A writer. A campaigner. I AM NOT DEAD. I have bad days, perhaps sometimes a wee brain bleed, or an infarct, perhaps another little bit of brain tissue dying. But I AM NOT DEAD. I enjoy painting. I enjoy b ..read more

What is a good life? What is ‘living well with dementia’? What is ‘life’? Life is luck. Life is choices. Life is dealing with whatever comes your way. Do you live well? Do you eat well, drink well, exercise well, speak well, sleep well…? Many of us living with dementia avoid the phrase ‘living well with dementia’. We prefer living as well as we can with dementia. Or living as we choose with dementia. And I venture to say that few, if any, people live well all the time. We face choices continuously, circumstances that are not of our choosing, situations which luck presents us. And by luck I mea ..read more

When Great Trees Fall Maya Angelou When great trees fall, rocks on distant hills shudder, lions hunker down in tall grasses, and even elephants lumber after safety. When great trees fall in forests, small things recoil into silence, their senses eroded beyond fear. When great souls die, the air around us becomes light, rare, sterile. We breathe, briefly. Our eyes, briefly, see with a hurtful clarity. Our memory, suddenly sharpened, examines, gnaws on kind words unsaid,promised walks never taken. Great souls die and our reality, bound to them, takes leave of us. Our souls, dependent upon theirn ..read more

Why is it so hard for clinicians and managers to accept that patients, service users, clients…know best what’s good for them? I mean, not always… not in specialised knowledge, for example, of how the brain works. Or how the NHS funding process works. But how to make dementia assessments ‘friendly’, or how to give a diagnosis in positive terms, and in a relaxing, positive environment? What works for us after diagnosis to keep us functioning and healthy? I expect ‘experts’ who have trained for years to know what dementia is, what it looks like, what may have caused it, and how best to live after ..read more

I’m writing another piece about these colossally expensive and rather dangerous disease modifying treatments (DMDTs) for Alzheimer’s. Remember first that the many and always varying symptoms of this ‘disease’ are collectively known as a syndrome. The cause of the syndrome is amyloid plaques and neurofibrillary tangles around neurons which appear to ‘strangle’ and kill them. Hence the pharma race to find a drug that gets rid of these tangles and plaques. But if you want to know about the side effects of these drugs, and the limited benefit, the unknown long term consequences, and the enormous c ..read more

Back to basics! Having opened up my box of demons last time, and finding more out about stuff that went on at some Edinburgh schools after I left, I now am too troubled by it all to want to think about that for a while, But can’t stop! So…let’s move on to…Lecunemab and donenamab. The wonder drugs that will cure Alzheimer’s disease. Er, well, no…not really. Not cure. Not prevent. Just slow down symptom development. It seems that they delay the progress of the disease for up to six months, but have to be given while symptoms are very slight, ie before they become bad enough to visit a GP. And th ..read more

Here it comes again. The time we look forward to and fear with equal feeling. The time when our ears and eyes are assaulted by noise, toys, clatter and clutter, interruptions, crossed conversations, and more. Christmas and new year force us to change routines. If you’re diabetic the sweet foods are a huge challenge. If you‘re alcoholic the booze is an awful temptation. If you take pills at set times you’ve got to remember them. It’s all just too much to cope with at times. So I have put together a few tips or suggestions for people living with dementia, and for their family members. Remember t ..read more