Leading up to the diagnosis

I think we realised something was amiss with dad about a year before he was diagnosed. The changes in his personality and behaviour were just too much to put down to him being cantankerous.

Mum was convinced dad had a "personality disorder" (something much rarer than dementia and usually diagnosed when someone is their teens or early 20s, pretty much never in their 60s from what I understand). She convinced herself he had narcissistic personality disorder, which I think outside of medical textbooks. She made the decision that if he had any condition, she would stick with him but if it was proven he was purely cantankerous, she would start divorce proceedings.

This was a really difficult time for me, my mum and I argued terribly over the symptoms and what we believed was the diagnosis. I was convinced dad had some form of dementia and mum that he had a personality disorder. At this point I think mum had been driven to distraction by him, she was very angry with him and the behaviours and she needed to blame him. She got quite paranoid, thinking that he was doing these things to irritate her and stress her into a breakdown. At this point, even though I had raised dementia, I don't think that the diagnosis had even crossed her mind yet, she was so convinced that there was nothing wrong with him and that it was due to the extent of their sour relationship that he was doing these things on purpose to hurt her.

Finally, mum took dad to the GP and pushed for a psychiatric referral. The GP wasn't convinced dad required a referral as his memory was pretty good and he performed pretty well in the Mini Mental State Exam (MMSE). A referral was made and the psychiatrist used a different type of test and by the end of the consultation he said he was pretty sure dad had frontotemporal lobe dementia.

Because of the marital discord, I wasn't sure dad would let mum go to the psychiatry consultation with him. I was pretty sure he would have let me sit in, but with my studies, there was no way I could travel up. So I decided to write an email for him to take with him. Here is it, slightly abridged.

Dear Doctor,

My apologies as I realise this is not the conventional way of getting a collateral history from a patient's relatives; however my parents don't get along and I suspect my father has said he would rather see you without my mother present and I am currently in the North West with my studies so couldn't come up to sit with him.

I wanted to write this email as I have had some concerns regarding my father for a few years now. I have felt that he has been slowly declining for the past five years or so; however since I have moved away from Scotland two years ago and don't see my parents very often I have to admit that the change in my father is even more pronounced.

There are a few incidents and thoughts that I would just like to highlight to you.

My father and I have never been especially close, but over the last year in particular I have been unable to hold a conversation with him. His temper has been very easily riled and more often than not we end up arguing. Whilst he has never been the most easy going man, more recently I have felt that his temper is very quick to flare and he has become much more aggressive than in the past. Additionally, conversing with him is difficult as he seems unable to follow the content of the conversation; he can be quite repetitive and "stuck in the past" talking over and over of events that happened perhaps years ago. Continuing with this theme, my father who has always been interested in films (particularly action movies) seems unable to follow the plot to a film and asks many questions throughout and seems to get frustrated and give up with the movie altogether.

When my mother first brought up concerns regarding my father's behaviour and memory I couldn't help but recall an incident that happened a few years ago. In 2005 when I was in my penultimate year of high school he came to collect my brother and I from school, a trip that he has done many times before and would normally take between 15 - 20 minutes. However, on this occasion he seemed to get lost and it took us over 45 minutes to get home.

He has recently began spending money in a ridiculous manner. He buys things even though he doesn't need them, he hoards everything and he seems to become fixated on a certain topic and buys every book available. A few years ago the topic of choice was astronomy, where he bought many books on the matter and a £200+ telescope, which has since sat in his bedroom, completely untouched and unused. The current topic I believe is medicine and in particular cardiovascular health and prevention of cancer. He buys many many books on the topic matter, which he seems unable to understand (even though they are not medical textbooks, they are books written for the public) and asks either myself or my partner when they come to visit. He has also bought a new mobile phone almost on an annual basis, but has been unable to use any of them; relying on my mother to help him set it up or asking me when I am around.

His driving skills are also a bit of a concern for me. About 2 years ago when my partner and I came to visit them he went out and upon returning to the house, he was unable to park the car. He was unable to navigate the driveway and came within inches of crashing the car into the house! He finally gave up altogether and my mother had to park the car. Furthermore, about 6 years ago, whilst he was parking the car, I had parked my scooter at the side of the driveway (not an irregular occurrence) and he seemed unable to manage the space and crashed into my scooter.

His language skills seem to have deteriorated dramatically in the past year in particular. He seems unable to effectively communicate with others.

More recently, he has had difficulty navigating new technology around the house. I have already mentioned his difficulties with mobile phones; he bought a new digital watch about 6 weeks ago that he could not set and my mother bought a new microwave which he could not seem to master. My parents are currently awaiting a new kitchen being installed and they have bought all new appliances to be installed, I am just wondering how he will cope and whether he will be able to adapt. My mother has also told me recently that he left the kitchen tap on and completely forgot about it which I find worrying.

He worked as a college lecturer (I imagine quite a demanding job) when I was a little girl and I just could not imagine that same man. The man you see today is not the same father I had growing up. He has become withdrawn, moody and very temperamental with the entire family. I would even go so far as to say his behaviour has meant that my brother and him have no relationship.

Many thanks for taking the time to read this email, I appreciate how busy clinics can be and would like to say how grateful my entire family are for any help and support available. My mother has a full time job and I think she is at the end of her tether and finding it increasingly difficult to cope with the demands of her job and my father's behaviour.

I felt dirty writing this email. I cried after I had written it and even re-reading it now I've got myself a bit choked up. I felt like I was criticising dad and exposing all his imperfections to the outside World. Of course, we know now that the things I wrote about wasn't my dad, it was the dementia.

A bit of background

My dad has frontal-temporal (frontotemporal) dementia. It was diagnosed this summer (summer 2012), but our family thinks this may have been going on for at least the past 10 years.

According to the doctors, frontal-temportal dementia is one of the rarer forms of the disease, affecting a person's behaviour, personality and language skills first before the memory fails later on in the disease. It is very different from Alzheimer's as it is usually the memory that fails first.

To be honest, I'm not really sure where to start with this story, there's so much to tell and I can't seem to get it all out in a structured, logical manner. I guess I'll start with my dad. He is 67 years old and worked as a structural engineer for much of his life until going into teaching and lectured at a polytechnic about engineering. He was already in his 40s when he met my mum and there is an 18 year age gap between them, my mum was only in her early 20s when they met! It was a summer romance that blossomed into marriage and babies, two of us came along, I am the eldest child and I have a younger brother. I have many happy memories from my childhood, going on walks with my dad and family holidays together.

My parents' marriage broke down more than 10 years ago, I think I was about 12 when it happened (I am 23 now). There were constant arguments and upsets in the house, with each parent threatening to file for divorce and both parents storming off at some point because the argument had got so heated. It wasn't a very happy time in our lives, I became a moody, angsty teen; I'll openly admit now I was more than a handful for my mum. I don't think dad knew how to handle me and although I had once been daddy's girl we grew apart. My brother would have been about 6 or 7, he was extremely upset and distressed due to the instability in our lives. My brother and I grew very close as a result, we had to look out for one another.

During this time, dad said and did numerous hurtful and horrible things to both of us and my mum. There were numerous loud, angry arguments that escalated very quickly; dad threatened to not collect my brother and I from school numerous times, he blamed mum for all the financial problems in the house and demeaned her job and contribution to the household. He also lost his job around this time, which made the arguing worse. He never managed to find another job so he became the "house-husband" whilst my mum provided for the family. My parents had some investments and dad did the odd sessional job which brought in a bit of extra income.

Throughout all this, they never actually filed for divorce, I'm not sure either one of them even went as far as seeing a solicitor. Mum bought a new bed and moved into the spare room and that is how they have stayed since. My brother's hatred for dad was so strong that he begged and pleaded for mum to go ahead and do it and "get rid of him". Mum always told us she never did because they were both financially better off together and she needed him to do the few chores in the house that he did (picked us up from school, prepared the evening meal etc) as she worked long hours.

Things eventually settled down and we got used to our dysfunctional family situation. For my part, I was happy with the way things were, I thought if that's how they want to live their lives then so be it. I also had both parents under the same roof and things were relatively settled, even if there was a constant tense under current in the house. Inviting friends or new boyfriends round was always stressful, you could never guess what tiny thing would set off a full blown argument.

I moved away to study at university and quickly separated myself from the "family battles" and was able to ignore them to a certain extent. Around once a fortnight or so I'd get a stressed out message from my brother telling me of the newest argument, but I could ignore my phone.

Life carried on in this way until the past year or so when mum really felt there "was something wrong" with dad and insisted he went to see the GP and then pushed for a referral to the psychiatrist. In June this year, dad had his diagnosis and we are all trying our best to cope with it.

Thank you for reading, I hope by writing about my experiences and feelings, I can raise awareness the impact all kinds of dementia has on the family and come to terms with my own emotions.