Living with bvFTD: the challenges explained

Without information and understanding, the effect of a bvFTD diagnosis on family and friends really can be very confusing and hurtful. With information and advice it is hopefully less confusing, but nonetheless quite difficult to manage. Families and friends may find it difficult to explain the changed behaviours of a person in their family to others, and that in itself can be quite socially isolating. Social isolation with dementia generally is sadly not atypical, and with these frontotemporal dementias, these behavioural variant frontotemporal dementias, that’s even more the case. I think it’s fair to say that most of our social engagement is based on very finely tuned interaction, and when that’s challenged in any way, people tend to pull away, drop away.

So relationships– not only sort of within the family but just more socially– tend to break. People don’t often know how to deal with somebody who doesn’t respond socially in the way that we expect them to. So for the person with the diagnosis, there can be problems. But also for the family and friends of that person. People don’t actually always see ways of best supporting and helping them. So I think you have this lack of understanding. You have a social isolation, which of course is really difficult when you’re managing quite complex behavioural and personal changes in a relationship as a result of a difficult diagnosis, behavioural variant FTD. And to be doing that in social isolation is hard.

Anybody who has cared for or lived with somebody with behavioural variant FTD tells a sort of very eloquent story about how difficult that situation can be. People can go through a phase of being quite aggressive, which is very difficult to take. People are largely behaving out of character, so that can be very difficult. Equally difficult, which is a feature of some behavioural variant FTDs, is of apathy and a loss of interest. So the behavioural variants may have people who are dis-inhibited and seeming to want to do things they wouldn’t normally do, and then there are other variants where people just lose interest in everything.

So depending on what part of the frontal lobes are affected, people can either lose their inhibitions or lose their initiation. And people can just end up sleeping or staying in bed for 18 hours, don’t want to do anything. And that can be actually very distressing, as distressing as people who behave inappropriately, may go up to strangers on the street, children, adults, that they’ve never met before and start speaking to them. So it’s that managing social interactions, managing those behavioural changes– really hard. And people often get quite isolated, because other people don’t understand why somebody is behaving like that. It’s much easier to understand and support somebody either with a physical problem, or even with somebody where they’re forgetful.

But when somebody is behaving in a way that they seem uninterested in you, or inappropriately towards you, that can be quite hard to get support. Of course this is a progressive condition, in which people’s behaviour will get continually worse over time. And there will come a time when that is not copable at home, and people will need to think about finding an appropriate nursing home for that person. Because it’s so rare, there aren’t– there isn’t enough understanding of behavioural variant FTD amongst nursing homes. People are used to older people coming to their nursing home and that could be very difficult.

There are a couple of very specialised nursing homes that know about bvFTD, but actually that can be very difficult if you don’t live in the right place in the country. And it can just be incredibly frustrating for people, particularly because of the lack of insight into people’s own behaviour. So trying to understand why your loved one is acting so oddly and being rude to people– it’s just very hard for people to be able to understand that. And it’s hard for those behaviours to be controlled. There isn’t an easy way of doing that. So I think it is a frustrating disease, and it is a frustrating problem.

And I think it’s understanding that those behaviours are changed because of a disease in the brain, and it’s kind of accepting that that’s a disease and not them being mean or them being horrible. And I think that is a very difficult thing. It’s easy in a way to see change in memory as a brain problem. It’s much harder to see change in behaviour as a brain problem that’s due to a disease.