DEMENTIA - A PERSONAL HISTORY: The Path to Diagnosis
Getting a diagnosis for dementia may be something you are struggling with. It does after all remain something that most of us are unprepared to meet. Previous generations did not live so long and, when they did and developed the condition, it went by different names – mainly hurtful or dismissive – ranging from ‘senile’ to ‘ga-ga’ and everything in between. You may be coming to terms with the idea of your loved one having the condition and be in denial “It’s not possible, not them”, “It’s old age, surely. Everyone’s likely to be a bit vague at that age.” And once the shocking seed has been sown, there is likely to be a lot of information to take in from different sources and bodies. The medical establishment, the adult social service department of your local council, charities, the financial side of things (e.g. DWP) the online information sources – the communities and their dreaded forums. The online sources can be hugely useful and supportive but some are undeniably depressing and frightening places which can be detrimental to families or individuals at a time when they really need to be as strong and remain as clear-headed as possible. Reinventing yourself as a carer takes real strength. It is a wonderful gift to bestow on someone you love. Payback for a lifetime of love. It is also, of course, a life trauma.
Currently it is frequently a hard slog to get everything in place most of which will stem from that official diagnosis, and has the potential to go down many blind alleys along the way. Simply accessing the family GP let alone the specialists (such as geriatrician or old age psychologist) is much more daunting than it was even a short time ago. I think people should be forgiven for letting the whole thing lurk at the back of their mind. “It may not be that,” they tell themselves, “it’s only now and again, and he/she seems to be coping … most of the time.”
I would like to share my own story of the dementia which my father developed and how I made every mistake in the book. With the benefit of hindsight, I would, of course, have done things differently. I could have made changes in his lifestyle which might have helped to alleviate his symptoms, perhaps even delayed them. And I would have done my research about whether I was communicating/caring properly. Forewarned is forearmed. There is so much to learn both for the patient and for their family for, in truth, the greater understanding people have about the warning signs, how the disease progresses, its different forms and what you can do to help, the more your loved one will benefit and the better you will feel.
One of the problems which can snag getting a dementia diagnosis is that MCI (mild cognitive impairment) may be caused by an underlying and/or chronic medical condition (e.g. under-performing thyroid, diabetes, mild stroke, heart disease – particularly affecting blood flow/oxygen levels to the brain) or infection. The complication here is that dementia can come on at a time of life when it is not unexpected to have any of these ‘other’ reasons. Or, in my father’s case, nearly all of them.
Looking back on it, I think perhaps the signs were there to be read much earlier than they were. Like many people, I lived four hours’ drive away from my elderly parents who had pottered along in the same way – apparently – for years. We didn’t get to see them nearly as much as we should or would have liked to. My sister and I now remember certain phone calls to our parents where my father would answer but then almost immediately pass the phone over to our mother or else even “Ah, do you know I’ve gone completely foggy, forgotten what I wanted to say but your mother’s here and would like a word.” We’ve all of us had moments when we walk into a room and forget what we came there for and so didn’t think anything of it. But it happened a number of times and to each of us when we analyse it now. We didn’t see him in the flesh very often during that time and I believe our very capable and pin-sharp mother probably covered for him. She was used to organising the household and so it may have gone ‘under the radar’ for some time. It’s speculation of course, but I wish that I had at least seen him more than fleetingly and been able to ascertain as whether he was entirely himself at this time.
Following a bout of pneumonia, he had a nasty fall and injured his head, waiting a long time for an ambulance in the process. This may in fact have triggered the onset of the disease. As far as I know he showed no clear sign of it beforehand. While recovering from this, he developed a severe infection which again hospitalised him for many weeks, during which time his wife of sixty years, died. Something which was always going to shake his world.
Just before my mother died, she suggested something which I had long carried in my mind. Given that my elderly father would not be able to cope alone in his home, he would do much better if he moved in with my family. It would be a great solution and we all adored him. So, after a period in a rehab unit, he duly moved in, amid much excitement on the part of the family and of my father. But it soon became clear that Dad was not himself. He would become muddled, particularly in the evening.
It’s easy for family members to be distracted, as we were by medical problems. Dad’s broken hip and lack of mobility clouded things. My concern was to keep him safe and ensure that he acknowledged his new physical restrictions and wasn’t too ambitious. I needn’t have worried. Dad was excessively afraid of falling (a classic sign of the Lewy Body form of dementia I remain convinced that he suffered from). Having broken his back a few years earlier, it was normal for him to appear hunched, his head curled over in (further indicators of dementia) and because he walked with a zimmer, we were not able to notice any lack of arm swing (a classic sign) which we might, just might, have registered. Even when he had occasional hallucinations so typical of Lewy Body in particular, I put them down to the opiate painkillers he was on at the time.
Another barrier to appreciating the onset of dementia is knowing a person well. It sounds contradictory but it’s an easy trap to fall into. I remember being woken up by my father standing in the hall reciting (word perfectly) The Dong with the Luminous Nose. This isn’t quite as absurd as it sounds. When I was young, he often indulged in late night poetry recitations and the fact that he now shared the house with his albeit teenage grandchildren could conceivably had stirred up those annoying/hilarious/glorious memories. My father was a lovable eccentric. We were used to the moments of madness he had shown all his life. We also fell into another classic trap. We put these odd moments down to ‘old age’. Being forgetful, getting things muddled, particularly time and place and particularly at night when he tended to become upset about his wife no longer sharing his life. Depression of the sort that can follow bereavement (plus, in his case, a total change in personal circumstances) can be yet another ‘mask’ which dementia can hide behind.
Eventually, when arranging respite for him for the family holiday, it took an outside assessor to suggest that dementia might be something we might like to consider as part of his ongoing needs. The fact that she added, “it’s very early stage of course” did not lessen the shock. It triggered a GP visit who first of all took his ‘history’ of medical conditions, drugs etc. and then returned at a later date and gave him a CPCOG test. The result of this was extremely unsatisfactory from our point of view. Dad played a blinder scoring very highly was just one or two ‘misses’. The test results showed that he had capacity, memory and reasoning ability. But then he would. My father was a highly intelligent, highly educated man which can be yet another barrier to acknowledging the beginning of dementia. It was to be nearly two full years before he received the final conclusive diagnosis. Because I was afraid of the ‘d’ word, I had never mentioned it to the doctor even though it was in the back of my mind. Perhaps that was why it was not used by the doctor. There was no follow-up. The GP mentioned that it might be desirable to attend a memory clinic but, strange as it may seem, we didn’t push for it. The waiting list (up to two years) almost made it pointless, I thought. There are likely to be indications way before then as was the case with us. There was no pressing necessity for it. My sister and I had power of attorney and my father did not have to cope with daily living on his own. Besides, we had got used to Dad’s ways by then.
Generally, he was able to function perfectly well. Fiercely independent and determined ‘not to be a nuisance’ he washed and dressed himself well. The fact that he would put on a thin summer shirt in midwinter I’m ashamed to say, I put down to the effectiveness of my heating in the morning (I did notice him cold and bundled him up later, I hasten to add). Finally, familiarity did tell its own tale as Dad, a great speaker and amusing and original raconteur, began to go round in ‘loops’ with his topics of conversation. It took us a full eighteen months of living with us to realise and fully accept this and although horrified when I remember it now, I think this is partly a tribute to how well he coped and adapted to his condition, remarking with one of his dazzling, room-lighting smiles that he was “probably not entirely compos mentis.”
I am lucky that I never entirely lost the marvellous character that was my father. Others are less fortunate. The road to diagnosis is not necessarily straight but can be packed with obstacles along the way which can make a difficult situation even more impossible. My advice? Don’t be blindsided by other conditions, and don’t live in a fool’s paradise by coming up with alternative explanations. The sooner you get that diagnosis the more time you will have to come to terms with the condition, arm yourself with as much information and support as is available, and be ready to help your loved one live their best possible life with the disease. Caught really early, there are drugs which can help ameliorate and delay the condition. As it was, we never did get that diagnosis during the time he lived with us. It didn’t come until eighteen months after he moved into residential care.
If I had known, I would have done things differently. Changed his diet and introduced a firm exercise routine, joined groups and got tips myself. I’m not sure this would have benefitted my father particularly. He was happy to be with us in the heart of the family – something I am proud of – but I think it would have assisted us understand his condition much better, how to help and what to expect and, above all, made us feel we were properly doing our bit for him.
Next time: communicating through the dementia wall