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What is dementia
There is often confusion about the differences between Alzheimer's Disease and Dementia. Dementia is a term that describes a progressive and irreversible cognitive decline. It is associated with memory impairment as well as the developemental skills like walking and talking. Frontotemporal dementia is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain. These are the areas associated with personality, behaviour and language. This is the type of dementia that Enzo has been diagnosed with. Early on in the disease, the afflicted individual may have trouble with planning, or the ability to exercise good judgement. This is known as executive function. Symptoms can also include difficulty with managing finances and language skills. Some people often undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally blunted, while others lose the ability to use and understand language. Personality traits are often lost as the disease progresses. Behavioural changes may be surprising and distressing to family and friends. Individuals often have a normal life span which means that their care is long and potentially stressful for those caring for them.
Enzo's symptoms include impairment of language skills and over a short period of time he has become aware that his speech has significantly declined. Although Enzo loves to talk, he has problems finding the next word to use and will often look to me to provide a suitable one for him. Another symptom of which he is less aware, but that affects the day to day running of our lives, is planning. Enzo loves to create and is full of new ideas. As he presents you will a new one you could spend all day discussing it, but by the morning it will be gone, lost and forgotten. This includes planning trips, projects and finances. It's a bit of a roller coaster. One moment you are planning something amazing in great detail and really looking forward to it, the next moment it is cruely snatched away in a fog of forgetfulness.
The signs and symptoms may vary greatly from one individual to the next. Researchers have identified several clusters of symptoms that tend to occur together and be dominant in subgroups of people with frontotemporal dementia. More than one symptom cluster may be apparent in the same person. The most common signs and symptoms involve extreme changes in behaviour and personality:
Once I saw this list I pretty much recognised Enzo within it. For example the repetitive compulsive behaviour? Often Enzo get's a notion in his head, for example he may feel he has to do the garden. Don't expect to see him for the rest of the day, and if the project big enough you will lose him to it until he feels it is finished. I often spend a whole week by myself because Enzo has been tinkering with a car. Gone were our plans to go here or there - that's what you can expect. You may feel deep resentment and pain during these times and feel it necessary to approach the subject when you feel a little frustrated. Rest assured though, your words will dissolve into the next project that takes priority. It all sounds so, well like the end of the world is nigh, and believe me from my reluctant caregiversperspective, it does feel like that sometimes. But I always bare in mind that there is someone out there worse off than me, and since separation or divorce is not an option (although we have come very close), we will just have to accept that frontotemporal dementia, or the big elephant in the room wearing Burmuda shorts as I like to call it, is a part of our lives. It's also worth noting on a more positive note, that when our worlds do collide, and Enzo's compulsive project involves us both, it can actually be quite fun. What's cooking in Enzo's kitchen?
There are two known major causes of dementia: Alzheimer's Disease and vascular disease with at least 50% of dementia cases being caused by Alzheimer's. Vascular disease is also very common and results from damage to the blood vessels in the brain often caused by stroke. When blood circulation is impaired, the brain cells don't receive the nutrition and oxygen they need. Therefore brain cells can't function properly and may even die. There are other types of dementia and some of the more common types are Lewy Body dementia and cognitive decline sometimes seen with Parkinson's Disease and other neurodegenerative disorders. But more than half of the people who develop frontotemporal dementia have no family history of dementia. For Enzo and I, this is quite significant.
People who have frontotemporal dementia often don't recognize that they have a problem, and often as a carer you just want to live in denial a little while longer. However, you will need to get an evaluation as soon as possible. You may be referred to a neurologist or psychologist. Our advise to you is to be persistant, and if you have a doctor who is a little wooley around the edges, consider getting another opinion. When you do get to a doctor it's a good idea to go as a team. It may take both of you to carry the huge list that you will prepare and present. Your list should include the following:
Expect your doctor to carry out some sort of physical and mental evaluation. If not make sure you find someone who will. In order to get even close to a diagnosis your doctor will attempt to identify certain characteristic features while excluding other possible causes. Because Enzo presented with symptoms of PTSS, other avenues had to be explored and eventually it was Doctor Doulton who pursued a brain scan. Enzo eventually had a PET scan and an MRI. By looking at images of the brain, doctors are more able to pinpoint any visible abnormalities that may be causing signs and symptons.
Enzo's Brain Cell
There is no cure for frontotemporal dementia and as yet no effective method has been found to slow its progression. Treatment is all about management and how many of us want to be managers? You won't see a queue, management is therefore thrust upon you. You will need to develop your own methods of dealing with the multifaceted diamensions of every new day.
Treatment may include antidepressants or antipsychotics, some of which help control behavioural problems. However there is an abundance of theories suggesting that certain dietary supplements or changes can help to slow degeneration along with methods for reducing stress. This is the path that Enzo and I have chosen to pursue. In truth, I have chosen to pursue.
Addressing exercise and diet with your children we believe will give them the best chance to avoid poor health. So start now - it's never too late. If nothing else it will keep your mind on more positive stuff which is important, since the cloud of dispair is never far away. Find out as much as you can, and ask as many questions as you need. Being informed is actually quite empowering. I speak as the reluctant caregiver who is sure that there are people out there made of sterner stuff and that are more able to cope. But do you know something, it's OK to grieve, to panic, to be fearful of the future and to be angry that your future has been molded by some sneaky disease that you thought only happened to other people.
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