Frontal temporal lobe dementia is a complex condition. It is not easy to diagnose, as often the classical signs of dementia are not present, so dementia is not the first thought about the changed situation that occurs to both family and healthcare professionals.
The list of symptoms, according to the NHS include: being insensitive or rude, acting impulsively or rashly, loss of inhibitions, seeming subdued, losing interest in people and things, losing drive and motivation, inability to empathize with others, seeming cold and selfish, repetitive behaviours, such as humming, hand-rubbing and foot-tapping, or routines such as walking exactly the same route repetitively, a change in food preferences, such as suddenly liking sweet foods, and poor table manners, compulsive eating, alcohol drinking and/or smoking and neglecting personal hygiene.
The impact of the disease can include some changes in language: using words incorrectly – for example, calling a sheep a dog, loss of vocabulary, repeating a limited number of phrases, forgetting the meaning of common words, slow, hesitant speech, difficulty making the right sounds to say words, getting words in the wrong order and automatically repeating things other people have said.
There can also be issues with mental abilities: difficulty working things out and needing to be told what to do, poor planning, judgement and organization, becoming easily distracted, thinking in a rigid and inflexible way, losing the ability to understand abstract ideas, difficulty recognising familiar people or objects and memory difficulties, although this is not common early on.
This very long list of possible changes can happen in part, so a person might experience some, but not all of these symptoms. These symptoms do not include the classical dementia symptoms that are common with the Alzheimer’s, which is the most common form of dementia, which are forgetting and confusion. As although frontal temporal lobe dementia includes issues to do with confusion, the confusion can often seem more like personality changes than confusion.
As a result, this dementia tends not to be noticed in the early stages, as it will appear as a change of personality and some slightly odd behaviours that require some explanation, but can also be overlooked as someone having an off day or an odd turn and it is only when these personality changes are considered over a period of time, does it become clear that these changes are more than an odd mood.
These kinds of changes can also lead to safeguarding issues, as people will isolate themselves away from their family and friends and those who care about them with their strange and disinhibited behaviours, which they will not see any problem with, hence no need to apologise and make amends. The safeguarding concerns can also arise out of their odd behaviours and disinhibited behaviours that can lead to various problems with money or with other things, that they appear to understand how to deal with, yet don’t in reality.
The change in behaviours can be very challenging for family to care for them, even when the family understand that this is a dementia and not something that they should take personally. They have probably been dealing with it for a while and will be drained by the situation. Some of the behaviours can be very challenging, even unlawful, if for example, the person is inappropriate with their grandchildren, so that they cannot be left with them. It is hard for the grandchildren, not just to be assaulted, but to lose their relationship with their grandparent. And difficult for the grandparent to lose the relationship with their family. And although this loss of relationship is common with domestic abuse, this behaviour is as a result of changes in the persons brain, not because they were always inclined to this inappropriate behaviour.
The various symptoms of this rare form of dementia make caring for someone who experiences this very challenging. They all need empathy and support to be able to cope.