A Client Story
Maggie Evans of the Carer Times asked two of Dr Baddiel’s sons, Ivor and David, about living with the consequences of their father’s dementia, Pick’s Disease.
David Baddiel’s stand-up show My Family: Not the Sitcom and the family’s Channel 4 Cutting Edge documentary The Trouble with Dad looked at the life of Dr Colin Baddiel who suffers from Pick’s Disease, a rare form of dementia. Maggie would like to thank the family so much for taking the time to talk to us and for the crucial insight given via the documentary and show. It is heartening to encounter such open and frank honesty from those finding themselves in this situation.
Can I first ask you a little about your father himself?
Our father was born and grew up in Swansea, South Wales, an only child to Henry and Sylvia Baddiel. As a young lad he had a love of chemistry and went on to get a degree in the subject at Swansea University, then a PhD at Imperial College, London. Otherwise, he was a fairly typical young man who loved football and a few beers with friends, though from what we’ve been told he was always very funny and was a big fan of The Goons. He married our mother in 1960 and by 1966 had three sons, Ivor, David and Dan. He worked as a scientist, then a laboratory manager until his mid-forties when he was made redundant, and so spent the second half of his working life as an antique toy dealer, specialising mainly in cars.
When did you first notice your father was showing signs of dementia and when was Pick’s Disease diagnosed?
It was probably just over 10 years ago now, in his early seventies… so the signs were fairly usual – forgetfulness, repetition and loss of concentration – a relatively slow onset. There wasn’t a sudden moment of deterioration such as one I was told about recently when a friend’s father suddenly, out of the blue, asked his wife of 40 years who she was.
The Pick’s Disease diagnosis came some time after the initial signs… there was some disagreement between professionals as to whether or not it was actually Pick’s. I believe one psycho-geriatrician thought it might have been vascular dementia, but there did seem to be general agreement about it being a frontotemporal lobe problem.
Are you able to give us an idea of the difficulties of dealing with someone who has Pick’s Disease? Perhaps the easiest and hardest problems to cope with?
In our father’s case, at his most difficult he was aggressive both verbally and physically, he had no interest in personal hygiene; he would spit, he was incontinent of both faeces and urine and he was extremely sexually inappropriate towards women. This last aspect has probably been the most difficult to deal with – both of us have daughters who my father would make sexually suggestive comments to and about, consequently it was too upsetting and difficult for them to see their grandfather, so they didn’t for a long time.
The other side of the coin is that our father has never been a wanderer. He has some physical issues as well, so there has never really been any worry that he might wander off and go missing, as happens with some people with dementia.
Do you feel your father’s work, personality or hobbies contributed in any way to his illness? (e.g. his redundancy, “heading” a football, cooking LSD!)
I don’t think it contributed to his illness per se, but I think it contributed, and possibly still does, to his attitude towards it. Even in the very early stages he would never acknowledge that there was anything wrong, he was in denial, which is more than likely a facet of his personality.
He was always terrified of illness, so I think he preferred not to confront the reality of it at the point when he might have been able to, and preferred to push it away. On the rare occasions that he would hear the word, ‘dementia,’ he would dismiss any thought that it might refer to him.
Have you noticed many changes in his behaviour during the course of the disease?
Yes, quite a few, though it’s hard to tell what the progression of the illness is and what is due to other factors. My mother died about two and a half years ago; she had been my father’s main carer and I think the shock and grief definitely affected him. His behaviour in the months following her death was particularly challenging.
I think the whole issue of how a person with dementia deals with grief is fairly uncharted territory. In our father’s case, he never expressed any real grief, other than shock in the first few days when we had to tell him repeatedly what had happened, but the emotion of what had happened definitely had a big impact on him, even if he wasn’t aware of it.
More recently, Colin had a series of urine and kidney infections. He had to be hospitalised three times and subsequently he became much quieter. The aggression and challenging behaviours that had been there previously, for the most part, disappeared, and he became less communicative, more insular and his attention and concentration span shortened.
Categories of dementia have changed over the years – what do you understand now about these? And how much of a difference do you feel the actual diagnosis might make to the care required?
Initially I had no idea there were so many variants of dementia, over 200 I believe and, like most people, I thought it was predominantly memory loss. Now I understand there are many other aspects to the illness, many challenging behaviours that come with it which, actually, can be prohibitive when it comes to finding a care home for the sufferer.
We did try and find a care home for our father, but the ones who assessed him said that they couldn’t take him because of his behavior, which is how we ended up with care at home. One of our aims in making the documentary, in fact, was to highlight the challenging behaviours that can come with dementia and how little provision there is to help people deal with them.
As for the actual diagnosis, I think it makes more of a difference in terms of medication rather than care. It strikes me that regardless of the diagnosis, each individual is going to bring aspects of themselves to the dementia and thus it is incumbent on the caring staff to get to know the person, as this will make the most difference to the care required.
What is it like, for both your father and the family, having carers in his house? And is he able to remember the carers or their names?
Having carers in the house has worked extremely well. It is a two bedroom house, so there is a room for the carer to stay in, though my father now sleeps downstairs, so there are in effect two spare rooms.
I think initially there were some issues with someone coming in and effectively taking over from my mother, that was quite difficult for some family members, but that aside, it has been great. For my father it has meant staying in the same surroundings, the same house that he knows and is used to, and thus he hasn’t had to get used to anywhere else. Initially, when his behavior was challenging, it was difficult for some of the carers, especially female carers, but from my father’s point of view, he was unconcerned about someone else being there. As long as he was fed and provided with coffee he didn’t mind (that might sound slightly facetious, but it is true).
From the family’s point of view, it has been a godsend. After my mother died, my youngest brother Dan had to step in and care for our dad. He did a great job for five months but he found it very, very difficult, both physically and psychologically,
and there was no way that he could have continued. Having a carer live in was a great relief and took a huge weight off our minds. It is only recently that my father seems to be remembering carers’ names. He has remembered the names of the two who have cared for him the most on the last two occasions they’ve started a placement.
In general though, one of the first things I noticed with my father’s dementia is a lack of any real, linear pattern. Most of the time his memory is very poor and he can’t remember something from a few moments ago, but on occasion he can be quite lucid and remember what happened a few days ago. I visited him on a Monday once and he, quite correctly, remarked that Chelsea had beaten West Bromwich Albion 2-1 on the previous Saturday.
A cousin of David’s wife works for Consultus in Cornwall, and she recommended the company.
Is there anything you can tell us that may be of interest to our carers? I know they would appreciate any insight to help them take better care of their clients.
Well, first of all we’d like to tell them how appreciated they are, they do a fantastic job and we couldn’t be happier with the way it’s gone. The only thing to say really, is to reiterate what I said before, that people with dementia are still individuals with their own personalities and quirks, and that it is worth taking the time to get to know them, rather than taking a blanket approach to dementia. This will be very much appreciated by both the person and the family, and will ultimately help make the relationship between carer and client much richer and more rewarding for both parties.
Finally, what would you tell the relatives of those with Pick’s disease to help them cope, now you know so much about it yourselves?
It’s tough, it’s challenging, it can be demoralizing, but it can also be funny, surprising and enjoyable, and that as long as the person is still physically able they don’t have to sit at home staring at the wall. They can go out, go to the pub, go for meals, visit family etc. They definitely enjoy it in the moment and though the conscious memory probably won’t last, the feeling and emotion of enjoyment does, and it can aid their overall sense of happiness and wellbeing in the long run. So, in short, enjoy those times for as long as possible.
Three of Dr Baddiel’s regular carers gave us an insight into caring for him:
Clive Bowles has been caring for Dr Baddiel since August 2015
“Colin has a great sense of humour and we often have a good ‘banter’ – he supports Swansea FC (he was born in Wales) and I support Manchester United – but we do love watching sport on the TV together, especially rugby, football and snooker. We chat about the toys he used to trade at toy/antique fairs and some of his toys are included in the Miller’s Antiques and Collectables guide!
When the weather is good we will pop to the pub for a pint, where everyone knows him; he’s quite the celebrity in the local community. Colin also enjoys going out for drives in the car to the park and visiting his son, Ivor, for a coffee.”
Neal Yardy has cared for Dr Baddiel since January 2016
“My overriding memory of Colin was when I asked him to set up a chess board while I made coffee, returning after five minutes to see it perfectly set up, which I did not expect. He then proceeded to thrash me, four games in a row!”
Sandra Wiseman has helped Dr Baddiel since November 2015
“I must say firstly I enjoy caring for Dr Baddiel. He was very challenging at first, but he has a great sense of humour! We play Scrabble and although we never complete a game, he always wins. We go for walks, either to get a hot chocolate or into the park, and occasionally we visit the pub where Colin has a pint! At times it can take a while to persuade him to leave the house, but once we’re out, he doesn't want to go home. Over time he is remembering his carer’s names, which is a great achievement.”
What is frontotemporal dementia?
Frontotemporal dementia (FTD) is one of the less common types of dementia. The term covers a wide range of different conditions. It is sometimes called Pick’s disease or frontal lobe dementia.
The word ‘frontotemporal’ refers to the lobes of the brain that are damaged in this type of dementia. The frontal lobes of the brain, found behind the forehead, deal with behaviour, problem-solving, planning and the control of emotions. An area of usually the left frontal lobe also controls speech.
The temporal lobes – on either side of the brain – have several roles. The left temporal lobe usually deals with the meaning of words and the names of objects. The right temporal lobe is usually involved in recognising faces and familiar objects.
Frontotemporal dementia occurs when nerve cells in the frontal and/or temporal lobes of the brain die, and the pathways that connect the lobes change. Some of the chemical messengers that transmit signals between nerve cells are also lost. Over time, as more and more nerve cells die, the brain tissue in the frontal and temporal lobes shrinks.
When the frontal and/or temporal lobes are damaged in this way, this causes the symptoms of FTD. These include changes in personality and behaviour, and difficulties with language. These symptoms are different from the memory loss often associated with more common types of dementia, such as Alzheimer’s disease. As FTD is a less common form of dementia, many people (even including some health professionals) may not have heard of it.